I haven't read all of the comments,but the ones I have reflect my feelings. What medical treatment for serious illness doesn't come with side effects? Don't other types of medical conditions and recoveries come with unique challenges? And isn't the premise of the article failing to consider that the patient wouldn't have remaining sensation in a diseased breast that is being removed? I had breast reconstruction 18 years ago and then again 10 years ago. The current surgical techniques described are much better, but nonetheless reconstruction was an important part of my recovery which enabled me not to have daily intimate reminders of the cancer wars, to be able to get dressed just like I used to, to participate in activities without having to worry . Really to restore a sense of wholeness, enabling me to remain active in life without struggling with prosthetic devices and avoiding some further psychological and physical scars.Whether to pursue resconstruction is clearly a personal choice, but thankfully it is an available choice that was not even an option for previous generations of women. I hope articles like this do not unnecessarily scare away or dissuade women from working collaboratively with their plastic surgeons who in my experience were caring to achieve a result which could be an important step in recovery.
4
Please stop whining, ladies. You're alive! And if you can type in this post, you should have been smart enough to have surfed the internet to read up on ALL side effects /obstacles / anything regarding breast cancer and reconstruction. I did and I'm almost 70.
So much for the enlightened woman theory. And don't try to sell me 'there wasn't enough time!!' bellyaching.
I love mine. They're squishy! and wayyyyy smaller than my 'originals', which is also a blessing... and no one needs nipples unless you're breastfeeding. My youngest is 38, those days are long over, LOL
So much for the enlightened woman theory. And don't try to sell me 'there wasn't enough time!!' bellyaching.
I love mine. They're squishy! and wayyyyy smaller than my 'originals', which is also a blessing... and no one needs nipples unless you're breastfeeding. My youngest is 38, those days are long over, LOL
2
@cheryl berg
People like @cheryl berg are the type who make things unnecessarily difficult for others. As if everyone else has the same diagnoses/nerve regeneration/vascularity/ musculature as her. Just because certain techniques/procedures/treatments/drugs worked for one person doesn't me they'll work for everyone, or ANYone else...
8
The numbness feeling after a double mastectomy (BRCA1) is nothing compared to the feeling of being healthy now for me. I'm alive and well.
The only thing I regret, if only I had known, is not having refused the implants. I had adulterated (french PIP) implants in my body and I surely did not need that extra burden.
The only thing I regret, if only I had known, is not having refused the implants. I had adulterated (french PIP) implants in my body and I surely did not need that extra burden.
Sounds like this article was written by a personal injury lawyer. Hmmm, lets see. Can't blame the cancer on the doctor. Can't blame the successful reconstruction on the doctor. Hmmm, let's see. How about, "nobody told me the breasts could be removed and replaced and the sensation would change." That's the ticket. The best part is a willing plaintiff can say all sorts of things about the sensation and preoperative information, and no one can say "you're not feeling that" and unless you have a videotaped interview they can say "nobody told me".
1
I have a BRCA2 mutation. I opted for breast surveillance in 1998 after testing positive for the mutation. I was breastfeeding an infant and having risk reducing surgeries was the last thing on my mind. Within two years of knowing that I had a BRCA mutation I developed an aggressive breast cancer that spread to my lymph nodes. My first annual mammogram was normal, my second mammogram showed cancer.
I received chemotherapy, then had a bilateral mastectomy and TRAM flap reconstruction, followed by radiation and ten years of chemiprevention. I had my Fallopian tubes and ovaries removed within a year of my breast cancer diagnosis.
My doctors fully informed me about the potential loss of sensation in the breasts and abdominal area. I do remember going over the informed consent - probably a dozen pages. Over the years I regained much sensation except for the nipple area. I am very appreciative to have survived breast cancer, retain a female form and have much sensation. I do believe risk reducing durgeries save lives in women, like me , who have a genetic predisposition to develop breast and ovarian cancer.
I received chemotherapy, then had a bilateral mastectomy and TRAM flap reconstruction, followed by radiation and ten years of chemiprevention. I had my Fallopian tubes and ovaries removed within a year of my breast cancer diagnosis.
My doctors fully informed me about the potential loss of sensation in the breasts and abdominal area. I do remember going over the informed consent - probably a dozen pages. Over the years I regained much sensation except for the nipple area. I am very appreciative to have survived breast cancer, retain a female form and have much sensation. I do believe risk reducing durgeries save lives in women, like me , who have a genetic predisposition to develop breast and ovarian cancer.
2
I had a prophylactic double mastectomy performed five weeks ago. I call it my "Angelina Jolie" surgery, having tested positive for the BRCA genetic mutation. Prior to surgery I consulted with several breast and plastic surgeons about my choices and options (I chose immediate direct-to-implant reconstruction surgery). Every doctor I met with informed me that I would have very little, if any, sensation in my breasts, and no sensation in my nipples (I had nipple/skin sparing surgery). I was prepared for it and yes, I have very little feeling in both breasts and no feeling in my nipples. What I DO have now is the huge relief knowing I've cut my risk of breast cancer by 95%. To me, it was well worth the trade-off.
5
I'm reading a lot of "shoulds" and "shouldn'ts" here. True feminism is allowing women to have a choice--and accepting those choices regardless of how one feels about it :)
2
I had a right mastectomy two years ago. They did not get clean margins, so I had to have a second surgery, following which I developed a staph infection. One year later the cancer resurfaced and I needed a third surgery. Reconstruction was never an option. I do have numbness where lymph nodes were taken. However my main "wish" is that they had recommended having both breasts off at the same time ... even though there was nothing wrong with my left breast. Having only one breast is a complete nuisance. If I don't wear a bra and a prosthetic device my clothes all pull in one direction. Finding a bra that is comfortable, and a "false breast" that is convincing and comfortable is a challenge. I have a drawer full of bras ... every style you can imagine. None of them are truly comfy. I have a variety of prosthetics ... including some that I knitted for myself. All of them are only comfortable for a short space of time. My remaining breast has sagged because much of the time at home I don't wear a bra. If I had known then what I know now I would definitely have opted to have both breasts removed.
6
I first had one breast removed with no reconstruction. When the 2nd breast was removed I had reconstruction for both. I feel every hug my family gives me. I may not feel a stroke on the nipple but hugs. My body is still intact and any pressure on the breast transfers to the body. I feel very fortunate that I had this choice and it feels much better with the reconstruction than before.
1
yours is one of the greatest comments ever. I also feel every single hug from my husband, children, grandchildren and friends. The hugs travel through my whole body... my 'new' breasts are way smaller than my real, cancer-laden ones and it's just the body shape I was looking for!
That so may women say "I wish I had known" about loss of sensation after this surgery is hard to understand. The standard American Society of Plastic Surgeons disclosure statement, given to all patients before surgery (and signed by the patient) states:
"You may experience a diminished (or loss) of sensitivity of the nipples
and the skin of your breast... Partial or permanent loss of nipple and skin sensation may occur occasionally. Changes in sensation may affect sexual response or the ability to breast feed a baby."
This speaks to a wider "First World" problem, that we don't bother to research and learn about such life changing decisions; a NYT article from Angela Jolie and Facebook might be our total sum of knowledge. Blame the abysmal state of science education, pushy doctors, the internet -- whatever. But who really should have done the work before making this decision?
"You may experience a diminished (or loss) of sensitivity of the nipples
and the skin of your breast... Partial or permanent loss of nipple and skin sensation may occur occasionally. Changes in sensation may affect sexual response or the ability to breast feed a baby."
This speaks to a wider "First World" problem, that we don't bother to research and learn about such life changing decisions; a NYT article from Angela Jolie and Facebook might be our total sum of knowledge. Blame the abysmal state of science education, pushy doctors, the internet -- whatever. But who really should have done the work before making this decision?
3
It depends on how that disclosure statement is presented. Is it in the stack of all the other paperwork that has to be signed? Is that statement buried in a lengthy document? Is the physician reviewing the form with the patient or is it being presented as "here is the disclosure statement, please sign here". without giving the patient an opportunity to read it? And as far as doing the work before making a decision, there are some doctors who don't appreciate patients bringing in information they have researched themselves. Besides, a patient should be able to trust that a physician is giving all the needed information to make an informed decision.
9
Nicole- I had a mastectomy and reconstruction in July, I was fully aware of everything. The doctor said it, sent me home with the disclosure forms to read, digest and sign and so I repeatedly was informed! Now I'm going through another procedure related to the reconstruction and once again I am told to read over at home the information then the doctor reviews it and then I sign the documents and turn them in to the office. Maybe I'm fortunate, maybe I'm a person who does as told, maybe I'm informed. Most importantly it is my body and why wouldn't I become as informed as possible before a procedure is performed on me. If a woman feels that her doctor doesn't welcome her search for information then she needs to find another doctor who will. They are out there.
2
Not sure how you are labeling this "first world". To be told you have cancer and then asked to make the decisions that come with your surgery is a horrible place to be. Maybe when they tell you you have prostate cancer (which does not affect your appearance or secondary sexual characteristics) and that you MIGHT be impotent after surgery you could understand what these women are going through.
8
Reconstruction surgery with my own tissue involved stretching my abdominal skin upwards, leaving loss of sensation not only in the breast area but in my whole greater belly area. It was devastating. This article is long overdue.
6
Oh, don't I know what you mean! I had DIEP flap 3 months ago, and I still can't get over the shock. No one told me that my belly would be so disfigured and painful at the beginning, but lacking sensation later!
Also, it was not made clear to me, that this 11 hour surgery is only the beginning, and I will have a few more corrective surgeries.
So few publications about this. Yes, this article is long overdue.
Also, it was not made clear to me, that this 11 hour surgery is only the beginning, and I will have a few more corrective surgeries.
So few publications about this. Yes, this article is long overdue.
5
I had my lumpectomy, excision of nodes and radiation 14 years ago. I recommend reading the wonderful work by the late NY State poet Audre Lorde, "Cancer Journals." Although she had her mastectomy in 1979, in pre-reconstruction days, she did suffer through enormous pressure to wear breast forms in her bra, being told that looking "normal--symmetrical" would make her and everyone around her happier. In fact they made her feel more alienated and thus rejected them, to the consternation of many. I think the most important idea in the article, responses, as well as in Ms. Lorde's book is that alot of decision-making on breast cancer treatment revolves around what will feel/look good from the outside not from the inside. Other important ideas present in many comments are include include facets of surgery. One is informed consent. My experience in my work in hospitals as well as in my personal life has shown me that most surgeons of whatever specialty tend to minimized post op complications. The other is that good breast surgery needs to be meticulous--the need for clean margins, so that no cancerous tissue is left which then would have to be removed by 2nd and sometimes 3rd operations. Another necessity of meticulous surgery is protection of nervous tissue. Some of this tissue may be permanently harmed, or otherwise injured or "shocked" so that feeling may gradually be restored. I was fortunate in that regard, but how are women to know?
3
Doctors emphasize the cosmetic over the fact that almost everyone has complications from reconstruction that in many cases are WORSE than the chemo/mastectomy/radiation. And why are we doing it? For looks . Such a shame. Doctors should have a conversation about who you are doing the surgery for - if it's for anyone but you (even a spouse) - teach them how to say no. I've had too many friends who regret it, who had to have multiple surgeries and yes, like women in this article, have no sensation. IT's NOT WORTH IT. Challenge the standard of beauty instead!!!
3
I had a double mastectomy with reconstruction eight years ago, and it was a more traumatic experience than the cancer I had three years prior (and that was 16 rounds of chemo and six weeks of radiation). The surgeon I used was one of the best in the city, if not the country. But he was only concerned with appearances (he was a plastic surgeon after all). I felt, and still feel, butchered. I think the Tram-Flap surgery should be outlawed. It is unnecessarily aggressive, invasive and they sell it by appealing to women's vanity with the promise of a tummy tuck. I felt pressured and coerced by my family and my surgeon, but ultimately it was my decision. My numbness extends on both sides of my body, almost to my back and up to/thru my armpits. The pain is very rare (fortunately) but itching is more frequent. But another thing they don't tell is the sense of pressure that you always feel. Like you are wearing the worlds heaviest and tightest bra. In hindsight, I also wish I had seen a female surgeon, one who could relate and not objectify me and my breasts further. If you are considering this type of surgery, PLEASE think of all the variables before you do this.
9
I can relate. Forty years ago I was a naive young 23 year old and was talked into a dental procedure which made thousands of dollars for the dentist, but was a "treatment" which I have now I discovered was totally unnecessary. Three virgin healthy teeth (in the front upper area) were cut down in order to form a "bridge" for one missing tooth. I was never informed that there existed a far less invasive and less costly option....a removable partial denture. I would have most definitely opted for the partial. Over the years, I have endured problems with the bridge, root canals, and eventual loss of those three teeth originally cut down to fulfill the dentist's personal choice for my case. Informed Consent! Physicians, Surgeons, and Dentists, hear us. You are messing with people's lives.
10
Dear Anne,
I wanted you to know you're not alone. I pray everyday for my 4-tooth bridge, and with my history of tooth issues ... dread the day that add'l work is needed.
My dentist hammered at me for so many years, about a missing back tooth, and despite being older / should have known better, and almost cancelling the appt. at the last minute, went forward.
He never ever told me about a removable partial denture. Which I would have greatly preferred to significant work involving 4 teeth in a hard to clean/protect area.
I also ended up with permanent trimenigal facial nerve damage on that side of face due to anesthesia poorly administered. Smile is ruined, Loss of strength, chewing, etc.
All issues and complaints were denied after the fact.
As a dentist with 4 or 5 kids, and a really nice lifestyle, I should have been more alert to the simple dollars aspect of him doing that bridge, vs. me living without a permanent replacement and going for something far less invasive.
It's not cancer, certainly, but it changed my 'face to the world' and how I live day to day.
Prayers to you.
I wanted you to know you're not alone. I pray everyday for my 4-tooth bridge, and with my history of tooth issues ... dread the day that add'l work is needed.
My dentist hammered at me for so many years, about a missing back tooth, and despite being older / should have known better, and almost cancelling the appt. at the last minute, went forward.
He never ever told me about a removable partial denture. Which I would have greatly preferred to significant work involving 4 teeth in a hard to clean/protect area.
I also ended up with permanent trimenigal facial nerve damage on that side of face due to anesthesia poorly administered. Smile is ruined, Loss of strength, chewing, etc.
All issues and complaints were denied after the fact.
As a dentist with 4 or 5 kids, and a really nice lifestyle, I should have been more alert to the simple dollars aspect of him doing that bridge, vs. me living without a permanent replacement and going for something far less invasive.
It's not cancer, certainly, but it changed my 'face to the world' and how I live day to day.
Prayers to you.
1
Many women in my world have had non-cancer-reconstruction breast implants. Some of these implants are quite large, spherical and obvious, as in the Trump women. I've never understood the phenomenon as I think the breast is lovely in any size, but obviously many disagree.
My question: is loss of breast sensation and/or numbness as described in this article also common in women who have gotten breast implants without needing a mastectomy first?
My question: is loss of breast sensation and/or numbness as described in this article also common in women who have gotten breast implants without needing a mastectomy first?
1
No. The removal of the tissue and cutting into the nerves causes the lack of sensation. Not the same in a cosmetic procedure.
Yes! When they reconstruct one breast, they want to balance the other one with an implant, to make them the same size. This happened to me, and although I kept feeling in the breast in general, I lost all sexual feeling. Plus, they had to remove the implants because of scarification, which is what makes them so obvious after a while, unless one is willing to replace them every couple of years or so. As far as the belly flap is concerned, I guess I was very lucky: I never got any pain from it, and I have enough feeling in it to be very comfortable with it ( I didn't expect sexual feeling there after the butchery I was subjected to before it)
1
Some patients aren't told that one the consequences of having a mastectomy is that you will have numbness where the amputated breast was. Since women don't typically know the anatomy of the breast and nerves innervating the breast, they may not realize this before they have a mastectomy. Some women say they have "phantom limb" sensations. Your breast is hollowed and nerve endings are cut and can't reattach, so how can there be restoration of sensation? If lymph nodes are removed there will also be numbness under the arm and sometimes underneath it and even in the patient's back, near the area where the nodes were removed. Patients are not always informed of the necessary consequences of the surgeries or of the fact that some patients who have reconstruction may experience complications that require re-surgeries, implant removal surgery, persistent pain, etc.
Some women would like to avoid mastectomy and cannot--some of those women have Stage 0 breast cancer or DCIS,(considered by some specialists to be a pre-cancer and non-invasive and by others to be a cancer, period), Women may prefer a lumpectomy but cannot have one because the DCIS is considered extensive and the surgeon will say that a mastectomy is necessary. Surgeons and other breast cancers specialists should inform women about the loss of sensation, but it's common that they do not.
Some women would like to avoid mastectomy and cannot--some of those women have Stage 0 breast cancer or DCIS,(considered by some specialists to be a pre-cancer and non-invasive and by others to be a cancer, period), Women may prefer a lumpectomy but cannot have one because the DCIS is considered extensive and the surgeon will say that a mastectomy is necessary. Surgeons and other breast cancers specialists should inform women about the loss of sensation, but it's common that they do not.
6
Not a mastectomy, but I had lumpectomy surgery and radiation on my left breast four years ago. It's still mostly numb, and I doubt I'll ever regain feeling in it.
1
I agreed with the pediatrician and the women who use humor and support groups. I was informed about the numbness, as well as totally expected it.
My twin sister and I were two years apart in our early diagnosis if DCIS. 1995 and 1997. I had lumpectomies and radiation. I'm 1999 more DCIS showed up on mammogram. I had a wonderful plastic surgeon who did abdominal tram surgery. I felt changed but truly natural. In 2012 my sister and I did BRACA testing. BRACA 2 was our diagnosis. In 2015 we had profilactic mastectomies with gummy bear implants. I had a hysterectomy in 2004. My sister had an immediate one. My outcome has been very good. I do yoga and am in a graduate Live Strong program that is free to people who have been touched by cancer at your local YMCA. I can relate to the women in the article who are experiencing chronic pain. My sister is going through this and I have so much empathy for her. Numbness is not the issue for us, but moving forward pain free and vibrant. I will show this informative article to my sister, because she feels alone. Thank you New York Times for your thorough reporting, but I would changed your headline.
My twin sister and I were two years apart in our early diagnosis if DCIS. 1995 and 1997. I had lumpectomies and radiation. I'm 1999 more DCIS showed up on mammogram. I had a wonderful plastic surgeon who did abdominal tram surgery. I felt changed but truly natural. In 2012 my sister and I did BRACA testing. BRACA 2 was our diagnosis. In 2015 we had profilactic mastectomies with gummy bear implants. I had a hysterectomy in 2004. My sister had an immediate one. My outcome has been very good. I do yoga and am in a graduate Live Strong program that is free to people who have been touched by cancer at your local YMCA. I can relate to the women in the article who are experiencing chronic pain. My sister is going through this and I have so much empathy for her. Numbness is not the issue for us, but moving forward pain free and vibrant. I will show this informative article to my sister, because she feels alone. Thank you New York Times for your thorough reporting, but I would changed your headline.
2
I had preventative mastectomy last year with reconstruction and have actually been surprised to have kept nipple and breast sensation. Not every mastectomy is the same and it is important to distinguish at least between the following two scenarios: 1) For preventative procedures, the skin and nipple are typically spared, and with careful surgical technique, sufficient nerves can most likely also be preserved. The should only be temporary changes in sensation. The outcome, in this case, however, still depends on a variety of other factors including the skills of the surgeon, the health of the patient, absence of complications, etc. 2) For cancer surgeries, on the other hand, the mastectomies can be much more invasive, in particular, if lymph nodes have to be removed, and margins have to maintained close to critical nerve branches. Outcomes in this scenario is much more difficult to predict. Therefore, doctors should at least be able to delineate between these scenarios. Patients in the first category, should ask their doctors about typical outcomes, and if possible choose one that has a good track record.
4
In SF as well, curious to know who were your surgeons. Planning the same surgery. Thank you.
Any Surgery has consequences, some expected some unexpected.
This article acknowledges that this individual had consented to surgery after learning of a high genetic risk for breast cancer. If that risk has been successfully removed, she should be relieved.
In the Consent for Surgery, she signed, there was a statement that indicated unexpected consequences, some named some not.
Surgery is ALWAYS a risk, we knowingly take the risk for the possible gain.
This article acknowledges that this individual had consented to surgery after learning of a high genetic risk for breast cancer. If that risk has been successfully removed, she should be relieved.
In the Consent for Surgery, she signed, there was a statement that indicated unexpected consequences, some named some not.
Surgery is ALWAYS a risk, we knowingly take the risk for the possible gain.
2
You must be a surgeon or physician. No one else would be so unfeeling.
5
As a chronic pain patient whose nervous system turns touch into pain, I have deep sympathy for these women. We all, however need to better understand the maxim that no replacement is going to exactly mimic the vast complexity of the integrated biological organism, and physicians who don't convey that to their patients should go back and study some cellular biology because they're doing a vast disservice to their patients --- to all of us, in the end, as the culture comes to believe untruths.
4
This article, seemed to me to conflate several issues. Full disclosure I had breast cancer, lumpectomy and radiation therapy. First the sensation is lost because of the mastectomy and not the reconstruction. Anyone considering undergoing such extensive surgery as mastectomy and immediate reconstruction has the obligation to research all facets of this surgery. Everyone's cancer is very individualisttic but there have been many articles about mastectomies being on the rise and for patients that would qualify for breast spearing surgery (lumpectomies). Mastectomy and lumpectomy have been compared for decades now and there is no difference in survival rates. Is reconstruction oversold? Hard to say but I think so. I think there are plastic surgeons that minimize the surgery and complications rates. But again it is an individual choice. Educate yourselves.
7
Though your comment sounds thoughtful, it is an over-simplification. I am currently recovering from a mastectomy and undergoing reconstruction (still on the fence between an implant and a DIEP flap procedure). There wasn't enough time for all the questions I had. I often didn't know what to believe or how much weight to give articles and comments. As an analyst, I would have liked to see numbers, rates and percentage probabilities. This seems to be the norm, not the exception, and therefore, should be something vocalized by our doctors. We sign many forms, and on these forms we see 'sometimes', 'may', etc. This numbness is pretty much a given, and should be highlighted in the initial discussions of the procedures. I doubt many (if any) women would opt not to have their life-saving mastectomies, but they would understand the consequences, and would be able to prepare themselves. All we ask for is a heads up. There is dignity and a respect for a patient that's this information provides us.
6
It is incorrect to blame reconstruction for the numbness; it is the removal of the breast tissue during a mastectomy that destroys the nerves innervating the skin. Patients will be numb with or without reconstruction.
7
Why so many articles about how women with breast cancer somehow made an uninformed, bad health decision? Guides to "preventing" breast cancer, articles about how careful watching is better than surgery, and now this one. Are they intended to cause self-hate in survivors who tried to make the best choices with advice from experienced doctors at a time of high anxiety?
9
This and other recent NYT articles on this topic show a clear and poorly constructed bias towards no reconstruction after mastectomy. And yes, a women's physical appearance and their ability to wear their existing clothing (which is generally constructed for a b-cup) is important and should not be shamed. This is a personal choice for women who should not be fear mongered into not considering reconstruction due to a sensationally written article.
8
I have never had breast cancer, but I have had a few surgical biopsies that caused me to lose sensation in my breasts- I would have appreciated the courtesy of doctors letting me know what to expect
7
When male doctors say the breasts will feel the same, I'm guessing they mean that they will feel the same to someone touching them, not the woman herself.
12
“They go into it thinking everything will be the same when they come out — they’ll just have cancer-proof stuffing in their breasts,”
These women haven't thought it through!
These women haven't thought it through!
1
Having survived breast cancer and double mastectomies, no nipples, no feeling (two years ago) I am put off by "these women haven't thought it through" comment. Just know that there are SO many things going on around the diagnosis, treatment plan etc., you can't possibly ask all the questions, you don't even KNOW the questions to ask.
It was only when my breast surgeon happened to mention something in passing that I did a double take and asked--Oh, you mean I won't have sensation at first, right? Nope, she said. Probably never. I asked again, thinking I had misheard. I sat there with my mouth hanging open when she confirmed it again. Here's the thing, even if you asked every question, and got every answer, ultimately how you experience the result/side effect (Of which I have had all most all) cannot be described adequately beforehand. The hardest part is still thinking that these new breasts are actually part of me. After all they don't FEEL like mine--they feel like nothing at all.
It was only when my breast surgeon happened to mention something in passing that I did a double take and asked--Oh, you mean I won't have sensation at first, right? Nope, she said. Probably never. I asked again, thinking I had misheard. I sat there with my mouth hanging open when she confirmed it again. Here's the thing, even if you asked every question, and got every answer, ultimately how you experience the result/side effect (Of which I have had all most all) cannot be described adequately beforehand. The hardest part is still thinking that these new breasts are actually part of me. After all they don't FEEL like mine--they feel like nothing at all.
15
Very likely because their physicians -- who presumably have much more experience with breast surgery outcomes -- didn't prepare them. And many patients don't know which questions to ask. It would be frightening at best -- is it unreasonable to expect doctors to go over all the possible scenarios before having their patients go under the knife?
5
Sorry, Nauset--I was thinking of the women who have optional mastectomies.
1
Had to rush to E.R this afternoon because wife continues to have debilitating pain. Double mastectomy wasn't the cause. She was doing a full complement of rigorous exercise within 12 weeks post-op. It was the reconstructive surgery 6 months later that has induced incredible suffering. Spoke to one of her docs this evening and he tried to tell us her pain is semi-normal. If so, there is a duty to inform patients of the potential pain before they opt for reconstruction. (Do those exuberant Playboy models go through this torture?)
5
No. I've undergone surgeries for cosmetic reasons and never experienced intractable pain. Strange tingling, transient nerve pain maybe.
The Doctor never informed me about losing sensation. I kind of knew it would be the end result. I deal with it & don't put much thought into it.
Look at the positive side to it all..............Your Alive !!
Look at the positive side to it all..............Your Alive !!
3
Duh. I had a mastectomy in 1999 and didn't have reconstruction because I knew several women who got infections afterward and one who actually got cancer back underneath. Nobody had to tell me though that stomach fat wasn't going to feel like a real breast!
2
If you have an 80% risk for breast cancer and a BRCA mutation, doing nothing carries a big time risk.
Hopefully, surgeons find a way to restore nerve functions in these patients, but surgery is the best we have for them to reduce risk
Hopefully, surgeons find a way to restore nerve functions in these patients, but surgery is the best we have for them to reduce risk
2
Obviously these women have never had surgery before. All incisions leave an area of numbness.
2
Women in high risk category shouldn't jump the gun by having their breast removed when there is no evidence of cancer. They may never get it......why go numb for a ""chance". It is not worth it. Besides if the woman does contract cancer-it will be in her spine or brain (the two places cancer goes after it is in the breast.
For those women who do have reconstruction after the cancer is removed, I don't think they care about losing certain sensations/they are just happy to be cancer free!
For those women who do have reconstruction after the cancer is removed, I don't think they care about losing certain sensations/they are just happy to be cancer free!
2
-- Besides if the woman does contract cancer-it will be in her spine or brain (the two places cancer goes after it is in the breast.--
This frightening statement is simply not true. Proper monitoring and treatment can eliminate cancer in the breast so that it never spreads to the brain or spine.
This frightening statement is simply not true. Proper monitoring and treatment can eliminate cancer in the breast so that it never spreads to the brain or spine.
1
"Why go numb for a chance?"
Why live in fear for a (up to 87%!) chance? Again, I feel that women should speak for themselves and not for other women in regard to their personal decisions regarding their own bodies. It might not be "worth it" to you, but peace of mind might be worth it to someone else.
Why live in fear for a (up to 87%!) chance? Again, I feel that women should speak for themselves and not for other women in regard to their personal decisions regarding their own bodies. It might not be "worth it" to you, but peace of mind might be worth it to someone else.
As I worked through the process of deciding whether to have a prophylactic bilateral mastectomy due to a BRCA1 genetic mutation, I found FORCE (Facing Our Risk of Cancer Empowered). What an amazing community & resource for both women & men who have a family history of breast, ovarian and related cancers. Patients are resourceful and information is power! The info I received from FORCE, along with my wonderful medical team, helped me to make a well-informed decision that was right for me.
8
The fault is with the doctors, not with the procedure. And it goes back to the old problem of some doctors not communicating with the patient. I had a mastectomy and reconstruction twenty years ago. The doctors clearly told me I would lose all sensation. They were correct. I understood that I would get a new, good looking breast, but no feeling. And, of course, I am a survivor!
5
As a little girl I could not understand any concern about the size of breasts; the smaller the better. Who needs these things hanging on you? Just look at classic paintings; if breasts were so wonderful, why are they always much smaller than most of the real thing? The ridiculous preoccupation of boys and men did not persuade, and when I came to discover that men never knew what to do with them when they got their hands on them, then life became just that more bizarre. If I am afflicted with breast cancer, my choice will be to wear prostheses of the correct size for my height, and modest clothing.
14
You don't seem to get it that you won't have much feeling in that area without reconstruction either.
1
Reporting one analogous experience:
I have had one plastic surgery operation, a tummy tuck (abdominoplasty) about five years ago. Bearing three oversized babies had left my abdomen loose and flabby like an empty pouch.
I was lucky – – my excellent plastic surgeon warned me about every possible negative, including possibly permanent skin numbness around my lower abdomen. I hated my empty kangaroo pouch so much that I went ahead anyway.
I did have local skin numbness, but after about three years, the numbness began to lift, and now there is almost no numbness at all.
I do not know whether the numbness might sometimes similarly recede in a reconstructed breast. It would be good if breast surgeons addressed the numbness issue directly with their patients, as my plastic surgeon did with me.
I would certainly miss lost nipple sensation if it happened to me, but I'm not sure how heavily I would weigh that factor against an enhanced possibility of developing aggressive breast cancer if I were in a genetically exceptionally high risk group.
I have had one plastic surgery operation, a tummy tuck (abdominoplasty) about five years ago. Bearing three oversized babies had left my abdomen loose and flabby like an empty pouch.
I was lucky – – my excellent plastic surgeon warned me about every possible negative, including possibly permanent skin numbness around my lower abdomen. I hated my empty kangaroo pouch so much that I went ahead anyway.
I did have local skin numbness, but after about three years, the numbness began to lift, and now there is almost no numbness at all.
I do not know whether the numbness might sometimes similarly recede in a reconstructed breast. It would be good if breast surgeons addressed the numbness issue directly with their patients, as my plastic surgeon did with me.
I would certainly miss lost nipple sensation if it happened to me, but I'm not sure how heavily I would weigh that factor against an enhanced possibility of developing aggressive breast cancer if I were in a genetically exceptionally high risk group.
7
Thank you for a very timely article as I consider prophylactic mastectomy for a BRCA2 mutation. I addressed this question with a surgeon during a consultation appointment, and she was honest and up front about what I could expect in terms of feeling and sensation. As a result of our meeting, I've been reluctant to move forward with surgery.
7
Good luck with the decisions you need to make, collicr. I hope everything will turn out okay.
There is breast cancer in my family, so my risk of that disease is quite high. However, I would personally wear a foam prosthesis in my bra rather than have implants. I've raised and nursed my babies, my breasts have done their job.
I would be sad to face cancer and to lose them but I am more than my breasts. The important thing is that life goes on. If it does, look at life with gratitude.
I would be sad to face cancer and to lose them but I am more than my breasts. The important thing is that life goes on. If it does, look at life with gratitude.
12
Your position was pretty much like mine when I decided on the surgery and I have not had reconstruction. It has been 10 years almost since my surgery. I was fortunate that numbness subsided..
5
Oncoplastic breast cancer surgery offers the promise of going to sleep with cancer and waking up with the breasts of a 21 year old lingerie model.
It's bad cancer surgery and bad cosmetic surgery.
The industry is hoodwinking thousands of vulnerable women.
Women who stage the operations over a period of months to years end up significantly more satisfied.
A diagnosis of cancer needs to be processed appropriately and should not be treated as a minor inconvenience on the way to a youthful set of breasts.
It's bad cancer surgery and bad cosmetic surgery.
The industry is hoodwinking thousands of vulnerable women.
Women who stage the operations over a period of months to years end up significantly more satisfied.
A diagnosis of cancer needs to be processed appropriately and should not be treated as a minor inconvenience on the way to a youthful set of breasts.
13
I had an oncoplastic lumpectomy with intraoperative radiation followed by an immediate bilateral reconstruction in December of 2013. In English, I opted for a breast reduction---an aggressive lumpectomy (rather than a "tissue sparing" lumpectomy) where the surgery was performed with the technique used for breast reduction and the unaffected breast was reduced to match the tissue volume reduced from the one with the cancerous lesion. I came out of the surgery cancer free with amazing cosmetic results.
I was warned of all the potential risks, numbness, loss of sensation, the fact that the bilateral procedure performed as part of a cancer surgery might not be as "perfect" as an elective reduction, etc. I had some minor issues, (a small area which needed a scar revision, a small post surgical cyst which had to be drained), but the surgery was easy compared to the horror stories I have heard. The results did not make me 20 again, but cosmetically, and comfort wise, the outcome was outstanding.
I would not have undergone a breast reduction for cosmetic reasons...it was cancer surgery...the cosmetic positives amd the fact that I did not face further reconstructive surgery was the silver lining as I faced completion of cancer treatment.
I was warned of all the potential risks, numbness, loss of sensation, the fact that the bilateral procedure performed as part of a cancer surgery might not be as "perfect" as an elective reduction, etc. I had some minor issues, (a small area which needed a scar revision, a small post surgical cyst which had to be drained), but the surgery was easy compared to the horror stories I have heard. The results did not make me 20 again, but cosmetically, and comfort wise, the outcome was outstanding.
I would not have undergone a breast reduction for cosmetic reasons...it was cancer surgery...the cosmetic positives amd the fact that I did not face further reconstructive surgery was the silver lining as I faced completion of cancer treatment.
1
I have never understood the willingness of these women who did not have breast cancer, but were at high risk of developing it, to have their breasts removed before they even developed the disease. Why weren't they able to be followed very closely with mammograms, ultrasounds and exams and if they did develop the disease then to proceed with surgery. And lets not talk of the doctors who are willing to do this pre-procedure on them. Sorry, but I have no sympathy for these women. You don't cut off your breasts because you might develop cancer in them.
11
I can understand why. I am a brca2 woman. I was followed closely, but ended up with stage 2A breast cancer anyway. Chemo was done.The tools that they use to follow and assess are not fool proof. I found my lump and darted to my dr for follow up tests that week.
17
This contribution reflects lack of understanding that an extraordinarily high percentage of relevant gene-linked cancers already already incurable when diagnosed at an early stage. My friend Liz would be able to educate the writer iif Liz were here, but her gene-linked breast cancer, diagnosed at an early stage when she was in her late 30s, killed her efficiently despite aggressive treatment, leaving her three young children motherless.
24
It's called the Angelina Jolie effect - if an A list movie star does it and publishes an OpEd in the NYTimes - it must be scientifically sound - it is so important for patients to know the facts and discuss with your MD!
1
I had a bilateral mastectomy and reconstruction with implants. Six years later I have normal sensation. No nipples though; those are tattooed on. I am 74 so who cares. I had very early bilateral cancers. So far so good.
16
I think the patient bears a lot of the responsibility to inform themselves of any procedure they are undergoing. I was fortunate to have both a wonderful breast surgeon and plastic surgeon who were very up front about the possibility of neuropathy. I also though, did my own research and talked with other women. Yes, I have no feeling in either breast, but I'll take that over cancer any day.
10
I had breast reduction and and have numbness on the bottom of my breasts and no feeling with my nipples, very frustrating
2
I never had cancer but I had an open biopsy in an OR about twenty five years ago because I had microcalcifications on my mammogram. The biopsy was negative for cancer but the nipple on that breast was left with very little sensation. I was never told that I would have little sensation after the biopsy. If I'd been told, I would still have had the biopsy, but I resent that I had not been informed.
10
Physicians also fail to tell patients that the reconstructed breast will never feel part of yourself. I still feel the weight of the implants hanging from my chest almost ten years after surgery.
12
Having had both an implant and subsequent tram flap reconstruction, I don't understand how you proceed with this major surgery without asking questions based on your expectations and priorities. For me, the miracle of a breast that both "matched" and fit naturally in clothing without special undergarments or padding or to go braless, outweighed the loss of sensation (which was gone anyway after the mastectomy). Life is not perfect or fair. I am daily grateful for the skills of reconstructive surgeons who do amazing work.
17
The same occurs with hysterectomy - the uterus is a sex organ, and many women and transmen do not experience their orgasms the same after hysterectomy. I have had female doctors who specialize in hysterectomy tell me that I am wrong about this! NO DOCTOR and NO RESEARCH prepared me for the change in my orgasms -- the state of care on the impact of hysterectomy is shameful, inexcusable. LISTEN to patients. CARE for us.
34
I experienced no change after my hysterectomy. Still had powerful orgasms. I wonder what is the difference in these peocedures from one woman or another. Why are the results so different. I can imagine the discomfort of having breasts that have no sensation as well as the danger. I think there needs to more transparency here on the part of the medical field. Just give us all the facts.
3
I had the same thing happen with me and my hysterectomy. I was furious with my doctor when I had difficulty with orgasmic function post surgery. My hysterectomy was an elective procedure and was not for cancer. Prior to surgery-- I even directly asked him if the hysterectomy would affect sexual response and orgasms. He made light of it as if it was a none issue.
I have no doubt that this surgery does not impact all women in this manner, but subsequently I asked a friend of mine who was a gyn about my lack of orgasmic function, and she told me about 20% of women will encounter this after surgery. I was stunned. She said that I was lucky that I got some function back-took a year or so. She stated not all women will.
I have no doubt that this surgery does not impact all women in this manner, but subsequently I asked a friend of mine who was a gyn about my lack of orgasmic function, and she told me about 20% of women will encounter this after surgery. I was stunned. She said that I was lucky that I got some function back-took a year or so. She stated not all women will.
13
I think, realistically, it's more than 20% who have reduced sexual function after hysterectomy.
I think that some of the variation in our experience has to do with how radical the hysterectomy is. From what I've heard preserving as much as possible of the cervix really helps with sexual function. Of course if your ovaries are removed it will make a difference too. Replacing hormonal balance isn't the walk in the park they make you think it is.
I think that some of the variation in our experience has to do with how radical the hysterectomy is. From what I've heard preserving as much as possible of the cervix really helps with sexual function. Of course if your ovaries are removed it will make a difference too. Replacing hormonal balance isn't the walk in the park they make you think it is.
2
I may be about to go this route myself, and I'd still rather have form than scars if it comes to that--after two lumpectomies, I'm gradually recovering feeling and hoping, pending results of a biopsy, not to need more surgery. But I suspect the skill of the surgeon is paramount here. There are all kinds of ways to reconstruct. If doctors claims to be able to retain nipple sensation, they should be able to do so. Totally numb, after months, to the point where you can't feel a hug, sounds like something went wrong somewhere. http://www.thecriticalmom.blogspot.com
2
Many people are saying that a lack of sensation is better than cancer. That is true, but having reconstructive surgery after a mastectomy is optional -- you could always opt to "go flat," as a recent NYT article detailed. Perhaps that should be part of the discussion when surgeons are talking with patients.
10
Liz, it is indeed part of the discussion if a woman is fortunate and able to seek out the right doctors. Unfortunately not all women have that option based on income and/or knowledge. Patient advocates are available at most breast centers and women need to avail themselves of that option. Going flat is not an option for many women and I'm happy for those who make that choice, it's not as simple or pie in the sky as you make it sound. Even without reconstruction there will be numbness that is a certainty.
5
True enough -- my point was not intended to be that going flat was a perfect solution, but more that it should be part of the discussion. Reconstructive surgery, which the earlier article described as having risks even beyond the lack of sensation, is not the only possibility.
2
I absolutely agree with this. Amoena makes a silicone breast prosthesis that sticks to the skin. It feels and looks far more natural than the implant I had removed. Reconstructive surgeons should tell women about the alternatives. I elected reconstruction at a time when prostheses were not very good. After I had the implant removed prosteses had improved dramatically. I'm much happier without the implant, and Medicare makes them affordable.
4
I really wonder what is going on with the NY Times health reporting - specifically on breast cancer. I remember recently an article with pictures on the front page on women who did not have reconstructions. Now this. What does the Times have against women who choose breast reconstruction? The headline is sensational - 'unexpected blow'.
I had this surgery 9 years ago, in a midwest city, and was most assuredly told that my breast sensation would never be the same. I really am starting to feel that the TImes has some ax to grind here… I don't understand it.
I had this surgery 9 years ago, in a midwest city, and was most assuredly told that my breast sensation would never be the same. I really am starting to feel that the TImes has some ax to grind here… I don't understand it.
20
Is it possible, Pediatrician X, that you were told about the sensation issue because you are a physician?
1
thank you for this reply. You are right on and I wonder why more replies like yours are not prevalent. I felt the same way when reading the Going Flat piece.
I did reply this time though (see Phyl WE).
I did reply this time though (see Phyl WE).
1
No, that's probably not the reason. I had a mastectomy and reconstruction 10 years ago, and I was definitely told that it would be numb afterward. I am not a physician. It's a question of what each surgeon feels is important. Maybe the fact that I had a female surgeon made the difference? I don't know.
I do have to wonder how a person undergoes this type of surgery without doing any research. I read books and online forums and interrogated friends who had been through it. While I sympathize with the uninformed, I don't understand it.
And frankly, the numb boob is a joke among my breast cancer survivor friends. We laugh at our misadventures and "wardrobe malfunctions", because we all realize that this is the best case scenario. I'd rather have a numb boob and be ALIVE.
I do have to wonder how a person undergoes this type of surgery without doing any research. I read books and online forums and interrogated friends who had been through it. While I sympathize with the uninformed, I don't understand it.
And frankly, the numb boob is a joke among my breast cancer survivor friends. We laugh at our misadventures and "wardrobe malfunctions", because we all realize that this is the best case scenario. I'd rather have a numb boob and be ALIVE.
7
So if I understand this article, the implication is plastic surgeons are misleading breast cancer patients in an effort to create more two breasted women thus providing more breasts for all those horrible men out there who spend all their waking hours looking at breasts. This vast conspiracy must be stopped and as a proper feminists these cancer patients should live without one or both breasts in order to prove the point.
Talk about fake news. As a plastic surgeon I think this unsourced, unsupported nonsense more than qualifies.
Talk about fake news. As a plastic surgeon I think this unsourced, unsupported nonsense more than qualifies.
15
This article isn't about a conspiracy, it is about a lack of informed consent. Get a grip!
9
That's exactly what the article is addressing. Lies by omission and commission. Ignorance of professionals, including reconstructive surgeons and the refusal to accept that their skill seldom replicates perfection look. Assuming that misinformation from a physician is verifiable fact is of epidemic proportions in most populations. Those clinging to hope are particularly vulnerable. You are perfectly right, Doctor, sir.
5
Please don't abuse the meaning of "fake news."
13
Untruths from physicians? Not exceptional. We tend to lie by omission except when a patient is pretty direct and poses a question whose honest answer may not carry us on to our easy road. Then many of us commit to a barefaced lie or to one that is oblique and allows the patient's hopes to get them stumbling along the path to which we pushed them. Admission of ignorance is the last skill that so many of us acquire. Love of money above all else flavors this. There is a lack of character which many Medical Schools have recognized in the products which currently dominate the medical field. Some have broadened their intake to include students versed in Humanities and other areas outside of the traditional science curricula. No difference thus far except in a higher suitability for service to fellow beings. I have seen deadly consequences of ignorance, arrogance and racism all of which are more the norm in my profession. Choose any level from Professor Emeritus to first year medical student and those pathologies will be dominant. There are many more Dane McCrees along with some white women who may be regarded as collateral damage. The practice of medicine is not perfect and should not be assumed as infallible. What's normal today may just be malpractice shortly. When there's doubt the patient must be informed. "I don't know" is not an obscenity!
6
The lack of warning is perplexing. Even with the (comparatively) minimal damage done to chest nerves due to coronary bypass surgery, I was cautioned about lack of sensation and "numb feeling," which persisted for years.
5
For some women, such as those with Ms. McCrae's genetic considerations, mastectomy is a worthwhile option. However, my own experience with breast cancer and mastectomy in 2008 taught me that many things surrounding the disease are fraught with deception and outright lies. They spin "best tool available," "gold standard," and even "save your life." My mastectomy and reconstruction should not have been necessary.
The main thing that is misrepresented is how very poor--and late--is "detection" by mammography, and how much better and earlier is the use of MRI for breast cancer screening. As of recent census, there are 69 million plus women in the U.S. age 40 and over, all of whom need annual screening. Women are not told about MRI and how poor mammography is, because our health care industry cooperates with insurers who want to limit the use and cost of MRI scans. My and thousands of other mastectomies would not be necessary if our system were more transparent. You would not see such deception regarding prostate cancer.
I wrote my experience and findings into a story posted at
http://mammogramsanddcis.blogspot.com (mammograms and dcis)
Reading my story will not be a waste of your time. In fact, it could save your or a loved one's life.
The main thing that is misrepresented is how very poor--and late--is "detection" by mammography, and how much better and earlier is the use of MRI for breast cancer screening. As of recent census, there are 69 million plus women in the U.S. age 40 and over, all of whom need annual screening. Women are not told about MRI and how poor mammography is, because our health care industry cooperates with insurers who want to limit the use and cost of MRI scans. My and thousands of other mastectomies would not be necessary if our system were more transparent. You would not see such deception regarding prostate cancer.
I wrote my experience and findings into a story posted at
http://mammogramsanddcis.blogspot.com (mammograms and dcis)
Reading my story will not be a waste of your time. In fact, it could save your or a loved one's life.
11
MRI is not a cost effective or clinically effective tool for mass screening purposes of low to normal risk women. (Hell, even mammograms are being debated as to whether they are as well FWIW). It would raise costs 3-4x and have a negligible effect in affecting who dies from breast cancer across a population, the primary goal of an effective screening test. It is better reserved for patients with dense tissues or in high risk patients by personal/family history where it would be a more specific test in patients more likely to have disease.
2
There is huge deception around prostate cancer: a whole industry of scaring men into having surgery for cancers that are slow-growing and not a threat. The results of treatment include impotence and incontinence. The NYT has published many articles about this.
Thank you for sharing this little-known consequence to women after having their breasts removed. There is so much doctors do not share with the patient before having to make life-altering choices about caring for health. Your journalistic integrity is so needed, especially now.
On another topic- Besides the PAP, are there female reproductive cancer screens available to most women in our country today?
On another topic- Besides the PAP, are there female reproductive cancer screens available to most women in our country today?
4
I completely doubt that these are little known consequences. I believe the author is trying to sensationalize a rather common surgery, and a well known side effect.
12
@Pediatrician X, I wasn't informed seven years ago and many others weren't either. Reread the article.
9
All the respondents who are saying "Just be glad you are alive" are missing the point! The mastectomy saved your life. The reconstruction can be done many different ways, and that's what patients are questioning.
I had a unilateral mastectomy 8 years ago due to stage 1 DCIS, and a reconstruction with an implant. Yes, a number of people suggested I get bilateral, so my breasts would look similar and I would not have to fear getting cancer in the other breast, but I really didn't want to lose my one natural breast. 8 years later I am happy with that decision. However, my reconstructed breast no longer looks as promised, because of capsular contraction, a common problem apparently.
I do recall that much of the discussion about the reconstruction was about how squishy the new breast might be (to someone touching it) and the shape it would have, but they said I would have little or no feeling in my fake breast and underarm. Yes, I am happy that I am alive, and my experience was much better than my mother's in the 1970s, but I do sometimes wonder if I made the right choice regarding reconstruction. There seem to be so many options out there regarding plastic surgery, but when you have cancer you are just focused on getting rid of the cancer and you just want to get it over with. I wish I had had the time to talk to other women with reconstructions and get more information.
I had a unilateral mastectomy 8 years ago due to stage 1 DCIS, and a reconstruction with an implant. Yes, a number of people suggested I get bilateral, so my breasts would look similar and I would not have to fear getting cancer in the other breast, but I really didn't want to lose my one natural breast. 8 years later I am happy with that decision. However, my reconstructed breast no longer looks as promised, because of capsular contraction, a common problem apparently.
I do recall that much of the discussion about the reconstruction was about how squishy the new breast might be (to someone touching it) and the shape it would have, but they said I would have little or no feeling in my fake breast and underarm. Yes, I am happy that I am alive, and my experience was much better than my mother's in the 1970s, but I do sometimes wonder if I made the right choice regarding reconstruction. There seem to be so many options out there regarding plastic surgery, but when you have cancer you are just focused on getting rid of the cancer and you just want to get it over with. I wish I had had the time to talk to other women with reconstructions and get more information.
15
I had a bilateral mastectomy almost a year ago, and am two-thirds of the way through reconstruction, performed by colleagues of Dr. Ida Fox who is quoted in the story. I would like to say that my doctors at Washington University/Siteman Cancer Center were very clear with me about the loss of sensation, and I chose reconstruction knowing that the results would only be cosmetic.
Even with knowing how much sensation would be lost, it's one thing to be told and to have an intellectual knowledge of what this means and another to experience it. When I take a shower, it's very clear that I am not washing my original body parts. I'm not allowed to sleep on my stomach anymore, which is my preferred sleep position. The implants don't have natural movement.
I think in addition to the patient, the patient's friends and loved ones need to understand that even with reconstruction, the person has still experienced a tremendous trauma. This is a major body modification and can create physical limitations (especially if the person has radiation treatment for their cancer) and emotional baggage. People have spoken to me as though I'm getting some sort of really exciting gift as a result of my cancer, or that I'm getting porn boobs or something and that is just not the case. This is still a loss and the consolation prize is far from ideal.
Even with knowing how much sensation would be lost, it's one thing to be told and to have an intellectual knowledge of what this means and another to experience it. When I take a shower, it's very clear that I am not washing my original body parts. I'm not allowed to sleep on my stomach anymore, which is my preferred sleep position. The implants don't have natural movement.
I think in addition to the patient, the patient's friends and loved ones need to understand that even with reconstruction, the person has still experienced a tremendous trauma. This is a major body modification and can create physical limitations (especially if the person has radiation treatment for their cancer) and emotional baggage. People have spoken to me as though I'm getting some sort of really exciting gift as a result of my cancer, or that I'm getting porn boobs or something and that is just not the case. This is still a loss and the consolation prize is far from ideal.
23
Just for others reading this, note that with saline implants, one can sleep on one's stomach. The gel silicone don't allow that, which is one reason I picked saline.
4
I have silicone implants after a double
my plastic said it was ok to sleep on tummy when I roll over by accident but it does feel wrong. Is that accurate u can't sleep on belly unless they are saline?
Mine are numb and I miss the feeling tremendously. I was told I could do a partial but turns out the mammogram sono and MRI all missed a spot so doing full mastectomy was the right decision for me in the end.
Still doesn't make losing nipple sensation any easier.
my plastic said it was ok to sleep on tummy when I roll over by accident but it does feel wrong. Is that accurate u can't sleep on belly unless they are saline?
Mine are numb and I miss the feeling tremendously. I was told I could do a partial but turns out the mammogram sono and MRI all missed a spot so doing full mastectomy was the right decision for me in the end.
Still doesn't make losing nipple sensation any easier.
There's no reason to tell a patient with an implant reconstruction they can't sleep on their stomach. I've done about 1500 implant reconstruction cases personally, and it would never in a million year occur to me to instruct someone like that once out of the early recovery and the surround scar tissue matures.
1
Six months ago I was faced with the diagnosis of breast cancer in one breast. I needed a mastectomy and opted for reconstruction. I have not looked back with regret for one single moment. I was given all the information verbally and in writing by both my breast surgeon and my plastic surgeon. Information was readily available from the medical profession as well as the support group held at the breast center where my surgery took place. I read, scoured the internet and most importantly listened to those who had been there before me. Life without both breasts was not an option for me. Indeed that was my choice and the best one for me. However, faced with the diagnosis of cancer and the chance to be cured and still have two breasts made the decision easy. The numbness and the other side effects of a mastectomy are irrelevant to me and remind me every day of how modern medicine has allowed me to remain healthy, alive and still look the way I choose to look.
8
I had a double mastectomy in 2012 for Stage 1A breast cancer. Lumpectomy and radiation were not an option for me as I had cancer in more than one quadrant. Nipple saving surgery also was not an option as I had cancer directly under the nipple. I chose a prophylactic removal of the other breast.
Three years later, I had a regional recurrence. I was told I had only a 1.7% chance of this happening. Statistics were meaningless for me. I had cancer in 15 of 18 nodes. I also had cancer in nodes under the collarbone that are inoperable, making me Stage IIIC. I've completed 20 rounds of chemo and five weeks of daily radiation. I'm now looking to get into a clinical trial.
At the time of my double mastectomy, my plastic and cancer surgeons both told me - in no uncertain terms - that I would not have any feeling in my reconstructed breasts and most likely no feeling under my arms. So, I knew exactly what to expect. I chose implant reconstruction as I wanted to look nice when dressed. It just so happens, I also look very nice undressed thanks to superb work by my female plastic surgeon at Memorial Sloan Kettering.
However, I do not have any feeling in my breasts or under one arm. Do I miss the sexual aspects of breast and nipple stimulation? Yes. But, I am so grateful to be alive. I pray daily that I do not recur again. If I do, it will be fatal. This makes my numb breasts pretty insignificant.
Three years later, I had a regional recurrence. I was told I had only a 1.7% chance of this happening. Statistics were meaningless for me. I had cancer in 15 of 18 nodes. I also had cancer in nodes under the collarbone that are inoperable, making me Stage IIIC. I've completed 20 rounds of chemo and five weeks of daily radiation. I'm now looking to get into a clinical trial.
At the time of my double mastectomy, my plastic and cancer surgeons both told me - in no uncertain terms - that I would not have any feeling in my reconstructed breasts and most likely no feeling under my arms. So, I knew exactly what to expect. I chose implant reconstruction as I wanted to look nice when dressed. It just so happens, I also look very nice undressed thanks to superb work by my female plastic surgeon at Memorial Sloan Kettering.
However, I do not have any feeling in my breasts or under one arm. Do I miss the sexual aspects of breast and nipple stimulation? Yes. But, I am so grateful to be alive. I pray daily that I do not recur again. If I do, it will be fatal. This makes my numb breasts pretty insignificant.
33
Good luck to you! Agree-numbness is small potatoes.
14
Thanks so much! I'm praying and I'm hopeful, as are my doctors.
2
It all comes down to informed consent. Doctors know (or should know) that decreased sensitivity happens after reconstruction but don't always relay that info to the patient before signing the surgical informed consent. Although proactive research on the part of the patient is always a good thing (as well as a second opinion) it is ultimately the surgeons responsibility to avail her/his patients of all side effects.
9
One wonders if breast reductions or enlargement surgery brings about the same outcome. One also wonders if the for men with testicular cancer, does a similar thing occur. As much as plastic surgery may facilitate an individual look like everyone else, there is always a downside. Regardless of the severity of the downside in the opinion of the physician performing the surgery, an individual must be told of the good and the bad. A few sessions with a psychiatrist prior to surgery might also reduce greatly the number pf plastic surgeries performed but insure true informed consent.
4
I've already commented elsewhere, but yes to breast reduction. I had one 20 years ago, when I was 20 years old, and was made aware of the loss of sensation. Honestly, any surgery involving nerves probably runs that risk, so I'm finding the stories here hard to believe.
3
I had breast reduction surgery about 20 years ago, and I had a somewhat similar result. I lost sensation in the surface of my breasts (though not the nipples). And also, no one told me this would or could happen before the surgery.
2
So, so strange that you would've have been told that.
I know a number of women that have had reconstruction, enlargement, or downsizing of their breasts. They have varying sensitivity post surgery. There is always some loss of sensitivity, especially in the nipples. This is one reason some women opt against enlargement (cosmetic surgery). However, if one is concerned about breast cancer and has their breasts removed as a result of tests they can get, the goal is to avoid cancer.
Any woman that believes they can remove their breasts and get new ones with full sensitivity has not read up on the procedure or even reviewed the discussions on the Internet. I believe that doctors should tell patients, but am surprised that a patient doesn't know this. Surprised it's not a part of the consent form as well - those usually include everything, including recognition that you might die during surgery.
Any woman that believes they can remove their breasts and get new ones with full sensitivity has not read up on the procedure or even reviewed the discussions on the Internet. I believe that doctors should tell patients, but am surprised that a patient doesn't know this. Surprised it's not a part of the consent form as well - those usually include everything, including recognition that you might die during surgery.
16
I agree that the loss of sensitivity shouldn't be a huge surprise but I had no idea i would feel numb across my breasts, stomach and under my arms. Feeling came back after around 5 years but it's not unreasonable to expect to be informed of this before surgery.
5
Loss of sensation is in the consent as well as potential for infection, death and a number of other things short of death.
1
At age 31, two years ago, I had a prophylactic, bilateral mastectomy with expander to implant reconstruction because I am BRCA1 positive. I was "aware" I would lose feeling, but as the article stated, you cannot fully understand what that means until you have experienced it.
Please, however, consider my alternate perspective: I regained very little sensation over two years. While I respect the opinions of those who have also lost the ability to be sexually aroused through breast stimulation, this is a very small loss to me when compared to what my life would be like with cancer. My life has never been in jeopardy, I have never and will never go through chemo and/or radiation.
Additionally, and importantly, many women gain sensation elsewhere after losing sensation in their breasts! I don't typically share such private information, but I am glad to say my sex life has improved since my procedures. I'm don't have feeling in my breasts, but the excess sensation has certainly gone elsewhere!
Best of luck to the heroes who are cancer survivors, and to the women who chose to decrease their risk.
Please, however, consider my alternate perspective: I regained very little sensation over two years. While I respect the opinions of those who have also lost the ability to be sexually aroused through breast stimulation, this is a very small loss to me when compared to what my life would be like with cancer. My life has never been in jeopardy, I have never and will never go through chemo and/or radiation.
Additionally, and importantly, many women gain sensation elsewhere after losing sensation in their breasts! I don't typically share such private information, but I am glad to say my sex life has improved since my procedures. I'm don't have feeling in my breasts, but the excess sensation has certainly gone elsewhere!
Best of luck to the heroes who are cancer survivors, and to the women who chose to decrease their risk.
18
jKL I too am a BRCA woman and have had prophylactic mastectomies. I just want the readers to understand that we cannot say that we will never go through chemo or radiation. The surgeons cannot surgically remove ALL breast tissue during prophylactic surgery. so there is still a cancer we could get breast cancer, although a small chance. Also there is a chace for ovarian cancer too.
9
anon, completely fair points. There are never guarantees, and in this instance, I have kept the ovarian factor out of the discussion re: prophylactic mastectomies. Of course surgeons cannot remove every piece of tissue, but the 95% risk reduction through mastectomy is still sufficient for me.
2
I agree that guidance is lacking for what to expect after mastetomy and reconstruction. It is not only the loss of sensation but also the fact that it takes up to several years to be more comfortable in the new chest and pain free. Which exercises help to reestablish a sense of self and prevent pain? What to do if there are painful cords= blood clots in superficial veins after implants? Which effect does the cold and non-sensing breast after implant reconstruction has on a relationship? (Yes, in addition to loosing sensation, an implant reconstructed breast is also very cold because it is just covered with a small layer of skin (and maybe thin pectoralis muscle, no fat). I am an internist and did not know about theee issues before my mastectomy and was not told about it. When I mentioned the problems as they occurred I felt like a problem case, though I think these issues are very, very common. I also had one fat grafting from thigh to breast and for 2 years had numbness and paresthesias in on thigh, until it luckily resolved when the nerves healed. I was not told before that this could be happening (of course I should know it and read about it but providers should discuss these issues proactively). Plastic surgeons and their teams have to get better at this.
16
Not to diminish anyone else's experiences, but I had a double mastectomy at 36, and am super grateful for the reconstruction. The doctors and others I spoke with made clear all the implications, including loss of sensation. 17 years later, I'm alive and rarely think about cancer or the reconstruction. Of course it's not perfect, but seriously, I'm still so dang grateful for all my docs and surgeons!
15
I have a loss of sensation in my shin area post total knee replacement. Constant tingling goes with the tinnitus.
But frankly, most of the men I have had sex with didn't know what to do with the boobs anyway...
As you go thru life, you lose all kinds of things.. My teeth are mostly gone and implants are hideously expensive and dentures are painful. My ears have rung probably for 15 years and will ring for 15 more if I am lucky. Hopefully, I'll retain my vision. (some of it. Peripheral fades at about 50.) And at least I can walk without pain even if I am very awkward on stairs, post total knee replacement.
It is important to know what one can expect post any surgery... and PS two knee surgeries, same surgeon, very different recovery.
But remember your breasts are not you. Frankly, what's really disfiguring is bad plastic surgery -- those odd squinty eyes or too puffy lips.
In the old days, one had a special bra with a prosthesis insert post surgery. And for women who have had to have implants removed because of details like not enough blood getting to the area, that remains the alternative. Long and short, don't fret. The worst case I know of was my poor cousin who as a result of brain surgery for cancer lost her olfactory nerve (food did not taste0, had her eye droop down, and a cauliflower nose. Most of us saw the person within... (the repairs on the eye and nose were not totally successful!)
But frankly, most of the men I have had sex with didn't know what to do with the boobs anyway...
As you go thru life, you lose all kinds of things.. My teeth are mostly gone and implants are hideously expensive and dentures are painful. My ears have rung probably for 15 years and will ring for 15 more if I am lucky. Hopefully, I'll retain my vision. (some of it. Peripheral fades at about 50.) And at least I can walk without pain even if I am very awkward on stairs, post total knee replacement.
It is important to know what one can expect post any surgery... and PS two knee surgeries, same surgeon, very different recovery.
But remember your breasts are not you. Frankly, what's really disfiguring is bad plastic surgery -- those odd squinty eyes or too puffy lips.
In the old days, one had a special bra with a prosthesis insert post surgery. And for women who have had to have implants removed because of details like not enough blood getting to the area, that remains the alternative. Long and short, don't fret. The worst case I know of was my poor cousin who as a result of brain surgery for cancer lost her olfactory nerve (food did not taste0, had her eye droop down, and a cauliflower nose. Most of us saw the person within... (the repairs on the eye and nose were not totally successful!)
2
"As you go through life, you lose all kinds of things."
How right you are.
If we are lucky, we don't peak physically before 35 or so. After that peak, our bodies are on the downswing.
I used to roll my eyes when my grandparents talked about their aches and pains or medical challenges. Whiners!
Now nearing 60, with a growing assortment of health troubles and old and newer injuries I try to manage with a good attitude, I don't roll my eyes any more.
How right you are.
If we are lucky, we don't peak physically before 35 or so. After that peak, our bodies are on the downswing.
I used to roll my eyes when my grandparents talked about their aches and pains or medical challenges. Whiners!
Now nearing 60, with a growing assortment of health troubles and old and newer injuries I try to manage with a good attitude, I don't roll my eyes any more.
As a board certified plastic surgeon for 23 years I find this article very misleading and potential setback for reconstructive breast surgery. I reject the idea that "Doctors often promise patients that their reconstructed breasts will look even better than the breasts they had before. But they often describe the potential consequences of the surgery in ambiguous terms. Women say the fact that sensation and sexual arousal will not be restored is not made clear." This entire paragraph appears to be a fabrication by an author who is unfettered by actual scientific studies or data. This article is a nothing more than a contrived op-ed piece masquerading as scientific news. Where are the studies to back up her claims?
Breast reconstruction is not perfect, but for most women feel the result is much better than having no breast at all.
Breast reconstruction is not perfect, but for most women feel the result is much better than having no breast at all.
14
Some surgeons are more communicative (and caring) than others. I went in for a fat graft for reconstruction, and somehow came out with fat grafting plus a RAFT procedure, with suturing in/around my sternum, lower ribs, and near my clavicle. I couldn't take a breath. I had to gently pant for air. I couldn't move my arms or torso. I was in excruciating pain that narcotics didn't make even a tiny ding in, and was in too much pain for them to knock me out. When I saw my PS at first post op, I asked "What did you do to me?" He told me we had discussed this, but no, he didn't.
I was cleared to take ibuprophen, which made the pain more bearable. They sent me to PT. Finally almost 6 weeks later, the thing failed. The worst of my pain disappeared.
Months later, I still have the suture moving around, and poking and irritating those areas. He wanted to try it again. Not again. It was an expensive, painful fail that didn't consider my athletic lifestyle before cancer that I desperately wanted to return to.
So, just because you may be a very conscientious surgeon doesn't mean every surgeon is. And yes, I do like my PS for reconstruction, but that experience left me thinking that I have much more to lose than a breast.
I was cleared to take ibuprophen, which made the pain more bearable. They sent me to PT. Finally almost 6 weeks later, the thing failed. The worst of my pain disappeared.
Months later, I still have the suture moving around, and poking and irritating those areas. He wanted to try it again. Not again. It was an expensive, painful fail that didn't consider my athletic lifestyle before cancer that I desperately wanted to return to.
So, just because you may be a very conscientious surgeon doesn't mean every surgeon is. And yes, I do like my PS for reconstruction, but that experience left me thinking that I have much more to lose than a breast.
9
very misleading? ..."This entire paragraph appears to be a fabrication by an author who is unfettered by actual scientific studies or data"
Your 23 years of experience does not give you the right to claim that the fundamental claim is false. I have 7 years of experience to my claim: Reconstructed breast have no feeling to the touch. You should try it, and then let me know if my claim is a fabrication.
Your 23 years of experience does not give you the right to claim that the fundamental claim is false. I have 7 years of experience to my claim: Reconstructed breast have no feeling to the touch. You should try it, and then let me know if my claim is a fabrication.
6
Yolanda I completely sympathize with your plight and fully understand that many women often do not have sensation after breast reconstruction. The part I disagree with is that the author is indicating that doctors make unwarranted promises about results and mislead patients about the numbness on a regular basis. She is reporting these physician related failures as though it the are a widespread problem without any supporting evidence.
2
I had a mastectomy after a cancer diagnosis almost 25 years ago. A lumpectomy was a choice, but given my age, 34, and an intense discussion with my surgeon, we decided to go the full monty - the mastectomy and 6 months of chemo. I was told of the numbness, but it seemed minor at the time. It's not. Nor are the consequences of the chemo. I was in instant menopause, and ended up having almost all my girl parts removed shortly after because of uncontrollable bleeding. It's been dreadful, but I have to say, at this point, I prefer being alive. There is just no easy way to have breast cancer.
I had a bad reconstruction at the time, and had it redone just about 18 months ago. It took 3 surgeries to get it acceptable, when it should have taken only 2. I also have chronic fatigue syndrome, and the third surgery knocked me way back, we think the anesthesia. Is it a surgical practice business model to turn the expected 2 surgeries into 3, to get it "right"? Federal law makes insurance pay for cancer survivors until we are OK with the results. Has anyone else had this experience?
I had a bad reconstruction at the time, and had it redone just about 18 months ago. It took 3 surgeries to get it acceptable, when it should have taken only 2. I also have chronic fatigue syndrome, and the third surgery knocked me way back, we think the anesthesia. Is it a surgical practice business model to turn the expected 2 surgeries into 3, to get it "right"? Federal law makes insurance pay for cancer survivors until we are OK with the results. Has anyone else had this experience?
5
As a double mastectomy patient due to Triple Negative Ductal Carcinoma - yes I'm happy to be alive. But my physical and emotional situation has pretty much every aspect that is mentioned in these comments! A counseling session or two would be a great idea for anyone considering surgery. My PS was not communicative and actually pretty obnoxious overall. I would have made different decisions had I known all I would end up going through. One of my best moments during these discussions with this man; After I asked him why my implants looked so misshapened and unattractive? PS said well we don't improve the breasts we try to replace them as they should be (age - thus my football shaped boobs?) I then asked him, "so as a man, if you needed your penis replaced in a similar situation you'd settle for the same old thing or you'd expect a somewhat improved model?" He didn't seem to get it and I sure as hell didn't expect to have 3 surgeries and still have Frankenboobs! I learned too much too late!
4
David M – –
I assume that the writer of this piece is basing such assertions on many interviews with women who have had reconstruction. Yes, anecdotes. The standards for a newspaper article are not as high as the standards for scientific studies.
I'd like to point out that your own skepticism of the claim that some doctors provide inadequate pre-surgical patient "informed consent" education is apparently also only anecdotally based. You cite no studies to support the notion that most or all surgeons are observing informed consent procedures to your own apparent high standard.
Here is my own anecdote:
I have had two surgeries in my life, both elective.
One was abdominoplasty to correct a loose, hanging pouch after my pregnancies were completed. My excellent plastic surgeon provided extensive information about all risks, including local numbness, taking his time to talk to me rather than just handing me a pamphlet, and inviting my questions.
Informed consent grade: A .
The other was correction of myopia. The year was 1999, and, unknown to me, by then PRK had become a rare dinosaur procedure after the introduction of LASIK. The ophthalmologist did PRK, failing to inform me in advance of then-recent studies indicating that PRK in high-degree myopes like me had a 70% or greater risk of corneal clouding.
Informed consent grade: F.
And I live with the consequences every day.
I assume that the writer of this piece is basing such assertions on many interviews with women who have had reconstruction. Yes, anecdotes. The standards for a newspaper article are not as high as the standards for scientific studies.
I'd like to point out that your own skepticism of the claim that some doctors provide inadequate pre-surgical patient "informed consent" education is apparently also only anecdotally based. You cite no studies to support the notion that most or all surgeons are observing informed consent procedures to your own apparent high standard.
Here is my own anecdote:
I have had two surgeries in my life, both elective.
One was abdominoplasty to correct a loose, hanging pouch after my pregnancies were completed. My excellent plastic surgeon provided extensive information about all risks, including local numbness, taking his time to talk to me rather than just handing me a pamphlet, and inviting my questions.
Informed consent grade: A .
The other was correction of myopia. The year was 1999, and, unknown to me, by then PRK had become a rare dinosaur procedure after the introduction of LASIK. The ophthalmologist did PRK, failing to inform me in advance of then-recent studies indicating that PRK in high-degree myopes like me had a 70% or greater risk of corneal clouding.
Informed consent grade: F.
And I live with the consequences every day.
2
One is never completely the same after any procedure. A person may be better than before the procedure, but not better than before the development of the condition or disease that caused the need for the procedure.
10
This misses emotions experienced in cancer related consultations. I had a double mastectomy, reconstruction and chemo two years ago. It is an emotional time for patients and they may not be hearing all messages equally. On the other hand, some doctors minimize the emphasis of side effects out empathy for the patient / wanting to make them feel better in the moment.
Both issues can be helped with standards or planned messaging.
Surgeons should have to disclose their own complication rates with a surgery. One doctor disparaged nipple sparing. When prodded, she revealed her complication rate was over 10%. The doctor to whom I went for a second opinion advocated nipple sparing. When asked, her equivalent complication rate was 3%.
Patients should see before and after photos of patients on whom that surgeon has operated (they pick their success stories, but it helped frame reality for me.)
Side effect discussions + pamphlets should include occurrence frequency and range of severity. Prior to my chemo, the oncologist failed to spell out which were potentially life long issues vs. temporary, and glanced over them over all. Doctors are far from the day to day life of a chemo patient, which is handled by nurses.
I met one male plastic surgeon more focused on look than feel, who kept pushing larger cup size. But overall, I found empathy and avoidance to be the greater barrier to franker discussions.
Both issues can be helped with standards or planned messaging.
Surgeons should have to disclose their own complication rates with a surgery. One doctor disparaged nipple sparing. When prodded, she revealed her complication rate was over 10%. The doctor to whom I went for a second opinion advocated nipple sparing. When asked, her equivalent complication rate was 3%.
Patients should see before and after photos of patients on whom that surgeon has operated (they pick their success stories, but it helped frame reality for me.)
Side effect discussions + pamphlets should include occurrence frequency and range of severity. Prior to my chemo, the oncologist failed to spell out which were potentially life long issues vs. temporary, and glanced over them over all. Doctors are far from the day to day life of a chemo patient, which is handled by nurses.
I met one male plastic surgeon more focused on look than feel, who kept pushing larger cup size. But overall, I found empathy and avoidance to be the greater barrier to franker discussions.
12
I haven't had breast cancer but instead had stage 3 prostate cancer and surgery some years ago. My eminent surgeon, who pioneered a nerve-sparing technique, appeared in my recovery room to tell me that the nerve damage was so extensive that there would be lasting and severe effects. He was right. One has to reconcile survival to the loss of sensation and reckon oneself among the lucky to be able to experience a before-and-after. Only those who have been ravaged by cancer can appreciate this experientially and are not to be envied...
16
My father has been living with stage 4 prostate cancer, and had his third anniversary this month. I'm grateful he is still here with me, but wish his life were easier. I have been treated for breast cancer twice. I've learned that prostate cancer in men strongly parallels breast cancer in women, and all of the choices are awful. I hope your treatments have been successful, and that you are and remain cancer-free.
10
@ Bluebird, I am moved beyond all words to tell of it by your understanding and kind response and hope for the best in your father's case.
4
@Tournachonadar: Thank you for sharing your experience with us. I'm glad your surgeon was honest with you, at least, but am sorry you've had to deal with life-altering side effects.
1
Twenty-three years ago, at age 38, I was diagnosed with invasive ductal carcinoma in one breast, having had a lumpectomy in the other ten years prior. Big family history of breast cancer. My surgeons and oncologist told me everything they knew. I listened, asked questions, and went forward with a double mastectomy, chemotherapy and reconstruction. I knew going no in that I would have no erotic feeling in the reconstructed breasts. That I would suffer long-term side effects from surgery and chemo. I chose to stay alive. What troubles me most now is how little progress has been made since then. Too much has been about making women feel glamorous and not enough about using facts gleaned from research to make informed health care decisions in each situation. I stopped marching around with pink banners years ago because not enough of the money raised went directly to research. Too much focus on mammography in my view. We, the patients, lose when our health care system rewards doctors for performing more procedures.
20
Well said, Lisa!
I'll add - not enough resources (nor emphasis) are being prioritized for research on prevention of breast cancer, or any cancers! Other than some vague lifestyle options, a few genetic connections, and environmental suspicions, we are no closer to truly knowing the contributing factors in a general sense, let alone individually.
Could this be the status quo because such research would implicate some very politically powerful industries which each in small, yet cumulative ways contribute to the development of cancers, as well as other diseases?
I'll add - not enough resources (nor emphasis) are being prioritized for research on prevention of breast cancer, or any cancers! Other than some vague lifestyle options, a few genetic connections, and environmental suspicions, we are no closer to truly knowing the contributing factors in a general sense, let alone individually.
Could this be the status quo because such research would implicate some very politically powerful industries which each in small, yet cumulative ways contribute to the development of cancers, as well as other diseases?
1
I had a double-mastectomy with reconstruction in 2011 because I had cancer in the right breast and a strong likelihood of getting it in the left one. Yes, they are numb, but I am cancer-free. What could be better than that?!
16
Reconstruction surgery is additional surgery with some risk of infection and pain and these factors can stimulate cancer cells that might be in the body since breast tissue is intimately connected to the lymph system. Tumors can grow behind the implanted tissue or behind the silicone implants. Has there been a study done to find out if those who refuse reconstruction have less metastasis?
Metastasis after all is the real concern for any woman with breast cancer and cause the 40,000 women who die every year from that- not the initial surgery.
Metastasis after all is the real concern for any woman with breast cancer and cause the 40,000 women who die every year from that- not the initial surgery.
2
I think we (as commenters) need to make the distinction between mastectomies and reconstructive surgery. The mastectomies are the life saving surgery-not the reconstructive surgeries. Therefore implying that these women are "ungrateful" for receiving life saving surgery is ill-founded, as I'm sure none of them regret the surgeries that saved their life but rather the cosmetic surgery after.
8
Having had double mastectomies with reconstruction 9 years ago -- some of the feeling does come back. I was warned about the loss of feeling but not the immediate hyperesthesia after surgery as those thousand of little nerves in the skin adjusted to being cut. I have made a point to tell others about that - it kept me from using a seat belt for a year.
I do have a friend who had a "nipple sparing" mastectomy and then developed another breast cancer in the breast tissue left at the nipple. For my money less feeling is better than a recurrence or being dead.
I do have a friend who had a "nipple sparing" mastectomy and then developed another breast cancer in the breast tissue left at the nipple. For my money less feeling is better than a recurrence or being dead.
5
This is outrageous. I have chronic pain and do not wish it on anyone. Going into what is often a voluntary elected surgery, patients (purchasers of a doctor's services} should be informed by the doctor of the likelihood of the loss of these sensations and the possibility of chronic nerve pain.
1
It will be eight years this spring since my bilateral mastectomy and reconstruction at age 44. At the time of my diagnosis, I consulted with five top NYC breast surgeons and every single one made it clear there was a very low probability I would regain any sensation in my reconstructed breasts.
While it's likely there are surgeons who are not properly counseling BC patients, after spending time in several support groups, patients themselves play a critical factor here. First, in the shock of their BC diagnosis, it's not unusual for patients to have selective hearing during their initial consultations. Compounding this, many women are so riddled with fear and solely focused on ridding their body of cancer that their focus on reconstruction is (understandably) an afterthought. Further, not everyone brings a friend or spouse to their consults to be a second set of ears and/or to ask follow-up questions and request clarity.
It also doesn't help that far too many celebrities have shared extremely sanitized versions of their BC experiences, contributing to a cycle of disinformation. Readers are left thinking reconstruction is simply a "boob job" without a full understanding of the limitations of the procedure. This is a grave disservice to women who rely on these testimonials as a substitute for their own due diligence.
In other words, surgeons aren't solely to blame here -- BC "awareness" campaigns have contributed to a false narrative about many aspects of the disease.
While it's likely there are surgeons who are not properly counseling BC patients, after spending time in several support groups, patients themselves play a critical factor here. First, in the shock of their BC diagnosis, it's not unusual for patients to have selective hearing during their initial consultations. Compounding this, many women are so riddled with fear and solely focused on ridding their body of cancer that their focus on reconstruction is (understandably) an afterthought. Further, not everyone brings a friend or spouse to their consults to be a second set of ears and/or to ask follow-up questions and request clarity.
It also doesn't help that far too many celebrities have shared extremely sanitized versions of their BC experiences, contributing to a cycle of disinformation. Readers are left thinking reconstruction is simply a "boob job" without a full understanding of the limitations of the procedure. This is a grave disservice to women who rely on these testimonials as a substitute for their own due diligence.
In other words, surgeons aren't solely to blame here -- BC "awareness" campaigns have contributed to a false narrative about many aspects of the disease.
12
I remember discussing nipple-preserving surgery with the medical team and being surprised that the sexual sensation would still be lost. Given that this was a widely-heralded innovation, I was surprised that aesthetics were the improvement, not sensation. For many of us, what we feel from our breasts is more important than how they "feel" to our partners. Thank you for the article; I thought I was the only one who had this reaction.
9
Phantom pain after amputation of the breast occurs with other surgeries such as amputation of a leg. Immediate treatment of post operative pain using not opioids but strong pain meds such as Diclofenac with food ( in the same family as Aspirin and Motrin etc) should be used not only to prevent opioid dependency but also because opioids also stimulate cancer - a new discovery and you can look it up yourself on the internet.
Phantom pain should be supervised with a health care provider who is familiar with it.
Phantom pain should be supervised with a health care provider who is familiar with it.
1
Like other readers, I too have a BRCA1 mutation. I chose to have a double mastectomy (not only because of the discovered mutation, but because my mother had both ovarian and breast cancers at an early age). I had my surgery and reconstruction done at MSKK and I continue to feel that the doctors and hospital were incredible. While I agree that there was not an in-depth discussion about post-surgery breast numbness, I do recall that my surgeon and the nurses did discuss it with me. Now, three years later, I have no feeling in my breasts (other than a general numbness, discomfort and unpleasant feeling when they are touched) and hugging is a strange out of body'ish sensation. But all of this is a small price to pay for hopefully getting to live a longer life for my family. I would rather hug my kids against my new (and now beloved) alien-boobs and always have that little reminder that life is fleeting and that I am a very lucky woman.
7
I have the BRCA 2 gene and opted for the salpingo oophorectomy last year.
I researched all options relating to prophylactic mastectomy and none of the choices that I was offered at Brigham Women's Hospital were acceptable to me because of the repeated surgeries and the loss of sensation. Even a simple mastectomy seemed painful when I learned that the skin adheres itself to the rib cage and doesn't move smoothly with potential lasting pain.
Then, through a random blog, I learned about a new technique being used in Miami and Orlando. The BRAVA technique.
The BRAVA technique removes fat through normal body sculpting methods of liposuction. Then the fat is centrifuged to remove water and blood and without ever touching air, the same fat is injected into the breast. Suction cups which are worn over the breasts for 10 hours per day for a month to expand the breast. This type of vacuum stretching causes the fat to transplant successfully and for blood veins and nerves to regrow into the fat
I am fascinated with this technique and want to learn more about it. I would be thrilled with a small breast mound that retained much or most of my nerves and sensation.
I am very surprised this article and comments have not mentioned this procedure. Why not? Are there any women who have completed this technique?
I understand that fat from the liposuction can be injected into mastectomies from years ago and successfully transplanted to bring the return of sensation to the breast.
I researched all options relating to prophylactic mastectomy and none of the choices that I was offered at Brigham Women's Hospital were acceptable to me because of the repeated surgeries and the loss of sensation. Even a simple mastectomy seemed painful when I learned that the skin adheres itself to the rib cage and doesn't move smoothly with potential lasting pain.
Then, through a random blog, I learned about a new technique being used in Miami and Orlando. The BRAVA technique.
The BRAVA technique removes fat through normal body sculpting methods of liposuction. Then the fat is centrifuged to remove water and blood and without ever touching air, the same fat is injected into the breast. Suction cups which are worn over the breasts for 10 hours per day for a month to expand the breast. This type of vacuum stretching causes the fat to transplant successfully and for blood veins and nerves to regrow into the fat
I am fascinated with this technique and want to learn more about it. I would be thrilled with a small breast mound that retained much or most of my nerves and sensation.
I am very surprised this article and comments have not mentioned this procedure. Why not? Are there any women who have completed this technique?
I understand that fat from the liposuction can be injected into mastectomies from years ago and successfully transplanted to bring the return of sensation to the breast.
6
This is my version of reconstruction that I started last year. Unfortunately, fat graft survival varies, even from procedure to procedure, and liposuction leaves scars under the skin that can stiffen and making certain bending movements of your torso painful and challenging for a few months. My PS added a totally unexpected RAFT procedure, which was a pretty challenging experience of its own. All of that said, I feel like the BRAVA AFT is still a wonder option. It filled in my concave chest, and covered my lumpy bumpy ribs. I still don't have a breast yet.
1
Dr. Andrea L. Pusic, plastic surgeon at Memorial Sloan Kettering Cancer Center, says focusing on how reconstructed breasts feel to the patient, and not to others, is “the next frontier.” (What a telling statement: The woman is an object to please others. But the woman, herself, and her ability to feel where her body begins and ends, seems to be invisible. How a woman feels to herself is the "next" frontier. As the ad said: "You've come a long way, baby." Not so much...
(And, by the way, the whole notion of chopping off parts of one's body pre-emptively seems dubious.)
(And, by the way, the whole notion of chopping off parts of one's body pre-emptively seems dubious.)
3
Your last sentence indicates that you are unaware of the very high risk of a very grim prognosis facing women with BRCAs. The choice of prophylactic procedures has been a godsend to this population.
Do you really think that people want to "chop off body parts" for no good reason?
Do you really think that people want to "chop off body parts" for no good reason?
2
My perspective is very different. I had a breast reduction at age 20. I was warned about not having feeling, which is a significant difference between my case and those of the women profiled. Still, this article is a bit alarmist in its approach with language about "dangers", not feeling children's hugs, burning oneself, etc. My own experience with no sensation is nothing like that which is described here. If people are burning themselves, it's from sheer carelessness; ditto with alleged "wardrobe malfunctions."
I've never heard stories like these re: safety and emotional side effects re: loss of sensation from women who have had elective breast reduction. It's like any adjustment. You get used to it in short order and move on.
I've never heard stories like these re: safety and emotional side effects re: loss of sensation from women who have had elective breast reduction. It's like any adjustment. You get used to it in short order and move on.
2
Just because you're experience does not match others doesn't mean you should be dismissive of them.
3
Breast reduction removes only a portion of breast tissue, mostly from the lower quadrants of the breast.
Total mastectomy as described in this article seeks to remove as close to 100% of breast tissue as possible.
It is not surprising that the average outcomes of the two procedures pertaining to sensation, numbness and possibly persistent pain would differ.
Also please recall that people can and do have different experiences even if they have had the same procedure.
It's not helpful to assume that everyone else has experienced what you have experienced. It smacks of empathy impairment.
Total mastectomy as described in this article seeks to remove as close to 100% of breast tissue as possible.
It is not surprising that the average outcomes of the two procedures pertaining to sensation, numbness and possibly persistent pain would differ.
Also please recall that people can and do have different experiences even if they have had the same procedure.
It's not helpful to assume that everyone else has experienced what you have experienced. It smacks of empathy impairment.
My first thought is gheeze, be glad you are alive and if you have reconstructive surgery that relieves you from wearing a prosthesis in your bra it seems miraculous. This woman couldn't feel her kids hug her if she was dead either.
4
It is possible to be "glad to be alive" as a result of the mastectomy while regretting the decision to have the reconstruction.
Ms Romero, the patient with post-surgical pain, if you're reading this, please see a neurologist or rheumatologist about a condition called CRPS/RSD. It's a very rare chronic pain condition that can be triggered by surgery. There's a documentary called "Trial By Fire" about it.
2
I researched the surgery and discussed it with the surgeon. It is one of the side effects of removing nerves -- which are part of the tissue removed in a mastectomy.
I am very sorry that women were not given the information and did not research it.
I am very sorry that women were not given the information and did not research it.
18
A minimally invasive mastectomy saved my femininity and my soul. Instead of a radical procedure, so enthusiastically offered by MT. Sinai, I found DR. Hilton Becker and Dr. Coletta , head of breast surgery at Boca Raton Hospital. They kept the flesh and my nipple, scooping out the inside and filling it with saline. My breasts look beautiful, hardly a scar to be seen. I could not be happier with the results compared to the alternative.
Upon my second diagnosis with breast cancer, thirteen years after the first time,
the DR.s called it new episode and wanted to give me a mastectomy. I could not bring myself to mutilate my body so radically as to cause myself certain extenuated depression. I had witnessed my Mother's surgery. A reconstruction took four surgeries and intermittent painful stretching processes. At the finish, the DR. so sensitively offered to tattoo replacement nipples, the thought of which sickened me. Did he really think that artifice, that paltry excuse for an aureole would give me solace. It was like offering someone dying of thirst a drop of vinegar.
WE do not have to get Radical Mastectomies, we can have this new procedure.
Tell everyone.!!!!!
Upon my second diagnosis with breast cancer, thirteen years after the first time,
the DR.s called it new episode and wanted to give me a mastectomy. I could not bring myself to mutilate my body so radically as to cause myself certain extenuated depression. I had witnessed my Mother's surgery. A reconstruction took four surgeries and intermittent painful stretching processes. At the finish, the DR. so sensitively offered to tattoo replacement nipples, the thought of which sickened me. Did he really think that artifice, that paltry excuse for an aureole would give me solace. It was like offering someone dying of thirst a drop of vinegar.
WE do not have to get Radical Mastectomies, we can have this new procedure.
Tell everyone.!!!!!
13
If you had not had the nipple sparing, less complete surgery perhaps you would not have had a recurrence. There is always residual breast tissue with nipple sparing. Too much emphasis on the "femininity" of breasts and not enough on what the risk of recurrent cancer is! I was offered nipple sparing surgery for my invasive cancer and declined - as a breast radiologist I have seen too many women with substantial residual breast tissue after nipple sparing surgery ( especially prophylactic mastectomies with nipple sparing) and too many new cancers in these patients. Not worth it.
8
I'm looking into just this issue for a relative and I'm very interested in finding out more about your experience. Two questions that could help clarify your statement:
1) When you say the Doctor "kept the flesh and the nipple" -- does the flesh you are talking about mean the skin or was it more, such as most of the tissue inside your breast?
2) Was it a saline implant that was put in?
Thanks for any possible response.
1) When you say the Doctor "kept the flesh and the nipple" -- does the flesh you are talking about mean the skin or was it more, such as most of the tissue inside your breast?
2) Was it a saline implant that was put in?
Thanks for any possible response.
1
It really depends on where the tumor is in the breast and how much "clean margin" breast tissue is available. The procedure that you describe is not an option for everyone.
I would do cartwheels if I had only numbness. I had a prophylactic bilateral mastectomy without reconstruction 9 years ago. I did not have reconstruction because I thought that might prevent complications. My surgeon said absolutely nothing about chronic post mastectomy pain even though it was well documented as a significant risk. Now I live with pain that feels like day two after major surgery but it never gets better. Pain meds help a little but are stupefying. If I had been told about this risk I would not have had this surgery. I was eligible for breast MRI which is pretty accurate for early detection. Bottom line is if my surgeon had informed me of this known risk like she was required to tell me of other risks I would be well today. Instead my life is ruined. There has to be some action to make breast surgeons disclose these risks. I can't think of any other type of surgical procedure for which the surgeons are given a pass year after year on a terrible oversight. These risks are not new.
45
Dear Marcia,
I am sad to read about your chronic pain. I am a 10 year (today!) BRCA-1 survivor and had chemo, radiation, bi-lateral mastectomy w/flap reconstruction and oopherectomy. To make matters worse, I have fibromyalgia and peripheral neuropathy. So -- I can relate to your chronic pain. I want to tell you about some things that help me. I am also an athlete and will be 65 years old soon. The main thing that helps me is stretching. It can be painful, but it is essential to stretch, even if just gently. I do Bikram Yoga (have for years, even before my diagnosis and through my treatment); I swim as often as possible (I live in a warm climate) and I rock climb (which, believe it or not, helps with my flexibility and strength, as well as makes me feel happy). I also take a liquid form of Vit. B, which helps with the neuropathy. I am never pain free, but my Yoga instructors and coaches gently push me beyond my pain threshold, so that at least I have greater flexibility and strength. It is also FUN!! If you cannot do that, I would recommend treadmill walking. It gets the endorphins moving. I feel HAPPY after a 20 minute walk on the treadmill. Even a gentle aerobics class with upbeat music is great; a gentle spin class -- just to get your body moving, be with other people and get those healthy pain fighting endorphins moving. I sincerely empathize with you and hope that some of these recommendations help! (BTW- I never take pain meds. I prefer ice and heat.)
I am sad to read about your chronic pain. I am a 10 year (today!) BRCA-1 survivor and had chemo, radiation, bi-lateral mastectomy w/flap reconstruction and oopherectomy. To make matters worse, I have fibromyalgia and peripheral neuropathy. So -- I can relate to your chronic pain. I want to tell you about some things that help me. I am also an athlete and will be 65 years old soon. The main thing that helps me is stretching. It can be painful, but it is essential to stretch, even if just gently. I do Bikram Yoga (have for years, even before my diagnosis and through my treatment); I swim as often as possible (I live in a warm climate) and I rock climb (which, believe it or not, helps with my flexibility and strength, as well as makes me feel happy). I also take a liquid form of Vit. B, which helps with the neuropathy. I am never pain free, but my Yoga instructors and coaches gently push me beyond my pain threshold, so that at least I have greater flexibility and strength. It is also FUN!! If you cannot do that, I would recommend treadmill walking. It gets the endorphins moving. I feel HAPPY after a 20 minute walk on the treadmill. Even a gentle aerobics class with upbeat music is great; a gentle spin class -- just to get your body moving, be with other people and get those healthy pain fighting endorphins moving. I sincerely empathize with you and hope that some of these recommendations help! (BTW- I never take pain meds. I prefer ice and heat.)
2
Dear Marcia,
It's heartbreaking to see you write that your life is ruined. I'm so sorry. I too have struggled with post mastectomy pain syndrome. I tried everything from multiple courses of physical therapy, acupuncture, pain meds, etc. Every time I'd be optimistic that this new approach would be the one that worked. My surgeon didn't get it: I cried in his office and told him the pain was as if I'd just had surgery the day before. His respond was to pass me the card for a psychotherapist. At some point I gave up. I started out with a lumpectomy, but because the cancer was more extensive, my doctors advocated for the mastectomy. There are many days when I wish I'd stopped with the lumpectomy and taken my chances with the cancer.
It's heartbreaking to see you write that your life is ruined. I'm so sorry. I too have struggled with post mastectomy pain syndrome. I tried everything from multiple courses of physical therapy, acupuncture, pain meds, etc. Every time I'd be optimistic that this new approach would be the one that worked. My surgeon didn't get it: I cried in his office and told him the pain was as if I'd just had surgery the day before. His respond was to pass me the card for a psychotherapist. At some point I gave up. I started out with a lumpectomy, but because the cancer was more extensive, my doctors advocated for the mastectomy. There are many days when I wish I'd stopped with the lumpectomy and taken my chances with the cancer.
I wish science can concentrate on preventing breast cancer more It seems very possible
An increased interest can make breast cancer prevention a reality since it is already known estrogen receptor blockage at breast tissue prevents breast cancer Just need to limit it to breast
An increased interest can make breast cancer prevention a reality since it is already known estrogen receptor blockage at breast tissue prevents breast cancer Just need to limit it to breast
6
I appreciated this article. I had no idea that women experienced a loss of sensation with mastectomies.
42
I had a unilateral mastectomy with reconstructive surgery in 2007. I was 46 at the time. Nearly a decade has passed. I am cancer free and I am grateful. But I would be doing a great disservice to those in the throes of decision making – because often the path is not clear and choices have to be made – not to say the following: I do not have nipple sensation on the reconstructive side and little sensation on the other side where I had a small implant for symmetry.
Countless times over the last decade I have thought about the conversation I had with a friend who helped me navigate breast cancer and the decision-making process. She told me that she chose to have a lumpectomy with chemo and radiation because her doctor told her that she would not have sensation if she had a mastectomy + reconstruction. She spoke with great candor.
I am a private person, a modest person. But this aspect of mastectomy and reconstructive surgery – loss of sensation --- is not talked about enough and needs to be.
Of course, health and survival above all else. Of course, there are other means of arousal. But being fully informed is critical.
I do not write in regret. But I would deeply regret not submitting this comment.
Countless times over the last decade I have thought about the conversation I had with a friend who helped me navigate breast cancer and the decision-making process. She told me that she chose to have a lumpectomy with chemo and radiation because her doctor told her that she would not have sensation if she had a mastectomy + reconstruction. She spoke with great candor.
I am a private person, a modest person. But this aspect of mastectomy and reconstructive surgery – loss of sensation --- is not talked about enough and needs to be.
Of course, health and survival above all else. Of course, there are other means of arousal. But being fully informed is critical.
I do not write in regret. But I would deeply regret not submitting this comment.
98
I have BRCA1 and they found a large DCIS is one of my breasts during an MRI this last spring. A double mastectomy was the over-riding recommendation at 2 of the 3 cancer centers I consulted. But I went for just one for now (I'm 62) and so I am a "uni-boob" as my adult daughters like to tease me. No reconstruction. No chemo. No radiation.
Why not have them both off? Because I knew I would lose the sexual sensations in my nipple that, at my age, are still very important to me. It's worth the small risk that "leftie" will develop a cancer as well. Why no reconstruction? Because a fake breast with no feeling is still not my breast. It's just for show. And reconstructive surgery is more surgery. If I do have the second mastectomy, I will be evenly flat. It's a decision I can live with.
BTW, I do have a great deal of feeling (pressure, heat, cold, etc) in most of my chest where my breast was. It just feels like a chest now. I wonder if that's more common without reconstruction?
Why not have them both off? Because I knew I would lose the sexual sensations in my nipple that, at my age, are still very important to me. It's worth the small risk that "leftie" will develop a cancer as well. Why no reconstruction? Because a fake breast with no feeling is still not my breast. It's just for show. And reconstructive surgery is more surgery. If I do have the second mastectomy, I will be evenly flat. It's a decision I can live with.
BTW, I do have a great deal of feeling (pressure, heat, cold, etc) in most of my chest where my breast was. It just feels like a chest now. I wonder if that's more common without reconstruction?
29
I think that we women have to do a better job of taking care of our health and not relying on doctors, expecially male doctors, to have all the answers. Unfortunately, breasts have for too long been looked upon as just physical objects meant to please men's eyes. Instead, they are food containers for our babies and very, very sensitive and erotic parts of our body. Even without a doctor's advanced notice how could we women NOT know that cutting and removing our breasts will forever change our lives.
4
I had something of the same situation in 2011, except my main issue was not the lost and reconstructed right breast. I took it as a given that there would be a significant, if not total loss of feeling TO ME. It was the 'spruced up' left breast that the plastic surgeon urged me to get done at the same time "to even them out." What a giant mistake that was, as the result was almost no feeling in my left breast as well, including very very limited sexual arousal. If ANYONE had told me there was even the slightest chance of losing that feeling in my 'good' left breast I would have not proceeded. For me, as a 62 year old woman, the loss of any sexual feeling in my breasts has been life changing. I would have preferred lopsidedness over this lack of sensation. Be warned!!
44
Same. The lift and implant and lipectomy (fat removal) to my remaining natural breast has left it numb as well.
I understand why women want to undergo reconstructive surgery after mastectomies.
Although it is a purely cosmetic procedure with some pretty clear drawbacks regarding sexual function, there is value for some women in retaining their pre-op appearance.
Of course, I would like to see the Times present as sympathetic a view of men with erectile dysfunction. That is an actual functional, not cosmetic, sexual, yet the majority of the time the remedies for it are presented as either a punchline or a bargaining chip.
"You can have your viagra if I can have my birth control."
Sure.
And she can have her breast reconstruction if he can have his medication.
See how callous and juvenile that sounds?
Although it is a purely cosmetic procedure with some pretty clear drawbacks regarding sexual function, there is value for some women in retaining their pre-op appearance.
Of course, I would like to see the Times present as sympathetic a view of men with erectile dysfunction. That is an actual functional, not cosmetic, sexual, yet the majority of the time the remedies for it are presented as either a punchline or a bargaining chip.
"You can have your viagra if I can have my birth control."
Sure.
And she can have her breast reconstruction if he can have his medication.
See how callous and juvenile that sounds?
9
Do some searches in the archive . The New York Times has covered this issue with sensitivity and in depth on numerous occasions.
Erectile dysfunction is no joke to those who have been affected by it.
Erectile dysfunction is no joke to those who have been affected by it.
It is not a "purely cosmetic procedure"! Imagine a big part of your body removed! Also, you sort of lose your identity. It is devastating.
The same thing happened around my c-section scar. No feeling on the surface of the skin because nerves were cut (17 years ago). Not even close to what these women have had to go through but I bet it's pretty common. Surgery is a serious business and these women should be fully informed before making the final decision. Surgeons probably aren't intentionally withholding information but they need to treat the whole patient - not just the cancer.
16
To say nothing of the permanent numbing of the peritoneum between vagina and anus with the standard cut to "facilitate" childbirth. I had my baby at 19. A certain profound part of my sexuality was literally cut out of my life the day I gave birth.
1
Having had many orthopedic procedures, both minor and major, full disclosure for any and all was never made. Did the research and asked questions. Most surgeons are occupied with surgery and not preparing patientsa. While benefit is gained, something is always lost. No procedure makes you as good as new.
2
The cut is made to prevent a tear which itself could have caused incontinence of feces.
1
Yup. As one of my new docs just told me, "The problem you're having is 'survivorship.' We're 10 years behind where we should be on living after breast cancer."
18
Anyone facing mastectomy should consult with others who have undergone the procedures with the Drs you will be using. They will tell you the detail - How could you not know this??
19
Why the judgement?
4
The surgical team should provide this infromation. Why judging patients? As a physician myself, at that time I did not have time to talk to others.
7
Other surgical procedures also result in numbness and it often comes as a surprise. Surgeons need to disclose FULLY!!!
24
Retaining the nipple gives the prosthetic breast a realistic look. The alternative is a tattoo. It should be made clear that the purpose is to make you feel like you look whole. Of course you have no feeling in them..they are not real. The pain is another matter entirely... and I would like to learn more about that...that is a much bigger issue to me... is it the skill of the surgeon..the lymph nodes if they are involved..is it due to metastasis?
As I watched my sister fight and lose to lymphoma at the age of 28, i can assure you that the minute I get a breast cancer diagnosis I will select a double mastectomy as early as possible.
As I watched my sister fight and lose to lymphoma at the age of 28, i can assure you that the minute I get a breast cancer diagnosis I will select a double mastectomy as early as possible.
19
Visually reconstructed breast looks fantastic It is true you have no feeling I do not regret having bilateral mastectomies due to peace of mind I was told prior to surgery that I will not have feelings I was still surprised by the densnes of the numbness It is like there is a hole at your chest It really effects your perception of the world It is amazing to realize how much we feel trough our breasts
Also there is pain like I am wearing a very tight iron bra It is present at night day time I do not feel it I got used to it
Still today I would choose the same as cancer devastated my Family and I understand this the price I need to pay to stay alive
Also there is pain like I am wearing a very tight iron bra It is present at night day time I do not feel it I got used to it
Still today I would choose the same as cancer devastated my Family and I understand this the price I need to pay to stay alive
16
Dear Deirdre.
First, I want to say how sorry I am about the loss of your sister. As I mentioned to a reader above, I am a 65 yr old BRCA-1 survivor; bi-lateral mastectomy, oopherectomy, reconstruction (no tattoo). I have had chronic pain my whole life due to fibromyalgia. I believe that the key to pain management is exercise, and after surgery, especially stretching. I live with chronic pain, but the combination of regular exercise (including stretching!), and ice helps. Start now, my dear -- don't wait until you get sick. At your age, I would recommend a good routine of Yoga [I personally prefer Bikram] and any other strenuous exercise that you enjoy. Stay healthy. I pray that you never need a double mastectomy. (I also suggest that you get tested for BRCA. Hopefully, you will be able to put that worry out of your mind for good!)
First, I want to say how sorry I am about the loss of your sister. As I mentioned to a reader above, I am a 65 yr old BRCA-1 survivor; bi-lateral mastectomy, oopherectomy, reconstruction (no tattoo). I have had chronic pain my whole life due to fibromyalgia. I believe that the key to pain management is exercise, and after surgery, especially stretching. I live with chronic pain, but the combination of regular exercise (including stretching!), and ice helps. Start now, my dear -- don't wait until you get sick. At your age, I would recommend a good routine of Yoga [I personally prefer Bikram] and any other strenuous exercise that you enjoy. Stay healthy. I pray that you never need a double mastectomy. (I also suggest that you get tested for BRCA. Hopefully, you will be able to put that worry out of your mind for good!)
1
I thought everyone knew this... same thing if you get breast implants. They might LOOK fantastic, but there is no sensation... (I think they have to cut the nerves to perform the operation. Not sure.)
9
Not true! All sensation remains with a BA.
3
The breasts look and feel natural to the man, not to the woman. Same thing with breast enlargement. The woman loses feelings in her breast just to arouse the man. The doctors are mainly men.
56
As a plastic surgeon for 23 years I can attest that this is simply untrue. Women very rarely lose sensation after breast enlargement.
1
They do not feel natural to the men if they are implants. They are cold.
3
Thank you for saying so. Until BC and online forums, I never knew that implants were and stayed cold against your chest. I never knew that the men in our life would feel implants as cold, too.
I had a mastectomy followed by reconstruction in 2001. I don't recall whether or not my doctor explained there would be numbness, but I just made that assumption. The entire breast was removed! How was I getting "feeling" back? If you have cancer, you're never the same again. I'm not willing to trade the last 16 years for nipple sensitivity.
19
I was made aware of the loss of feeling before my mastectomy and reconstructive surgery. It's a small price to pay for my health and my life. However, after six years (HOORAY!) the good news is that I have regained SOME feeling in the skin, and there is not as much underlying nerve pain. It does get better.
Nothing about breast cancer is easy, but thank goodness for the advances in medical treatment. It is lightyears ahead of what my grandmother endured even twenty years ago.
Nothing about breast cancer is easy, but thank goodness for the advances in medical treatment. It is lightyears ahead of what my grandmother endured even twenty years ago.
23
Nothing is the same after any surgery. Numbness is quite common with nearly all types of surgery. Doctors should discuss this as a common side effect.
24
A few thoughts from a bilateral mastectomy survivor: 1) this is tissue removal surgery. You are not going to have what you had any more. Anyone who tells you otherwise is lying. 2) After surgery, you have to protect the surgery site, as it will feel weird for a while & maybe forever. Knives went in. 3) The nipple is not the only source of erogenous stimulation. Your breast will still have heft & beauty. Women who have had clitorectomies can still have orgasms. 4) You didn't put yourself through this ordeal on a whim. You did it for good reasons. Grief is natural---don't punish yourself by interpreting it as regret.
40
At the risk of sounding completely insensitive (no pun intended), aren't people just glad to get rid of the cancer? Terrible things happen to people and sometimes life is not the same afterwards, but it is still LIFE. Something to cherish and appreciate.
19
True. But that does not justify suboptimal medical care, including information, education, guidance.
1
Meh. Would take numb breasts in a heart beat over cancer.
26
I stopped reading when you brought in a "gender studies" professor from Wesleyan to comment on what should be a discussion about anatomy and physiology. What a disaster. Why do I ever expect that your organization will change?
14
Except that the drs who make these pronouncements have a complete lack of understanding of what it means to be female. IF it were just about anatomy and physiology, there wouldn't be a problem.
And when has there been a case where too much information hurt anyone?
And when has there been a case where too much information hurt anyone?
1
Somehow and rather predictably this will be spun as yet another reason to bash males.
6
Not males but the surgical teams. And they are influences by mainstream cultural ideas.
Why is the NYT obsessed with maligning breast reconstruction? I had it and the loss of sensation is a non issue. I was told I might lose sensation and I did. What a stupid thing to complain about in the grand scheme of cancer.
31
I think the issues they raise are valid. Women who get elective mastectomies because of breast cancer genes need to know what they are losing. It's not a simple "swap-out." I get why this would be a non-issue if you are actually dealing with cancer. But the jury is still out on prophylactic mastectomies....we still don't know the details of most of the hundreds of variants of the breast cancer genes.
I am BRCA1 positive and have chosen to keep my left breast (after finding a large DCIS in the right one and, consequently, having a single mastectomy with no reconstruction) for the time being. I do not want to lose that sensation unless absolutely necessary.
I am BRCA1 positive and have chosen to keep my left breast (after finding a large DCIS in the right one and, consequently, having a single mastectomy with no reconstruction) for the time being. I do not want to lose that sensation unless absolutely necessary.
9
With BRCA1, prophylactic, in other words, elective removal is similar to colon polyps removal, effective cancer prevention. This was known 30 years ago.
When people feel bad, it isn't stupid.
1
After a mastectomy because I had three spots of cancer, I was pressured by doctors and health professionals to have reconstructive surgery. Happily, I resisted. They wanted to take healthy abdominal muscle to create a fake breast which would have weakened my back and torso. The most insulting comment, repeated by many health professionals, was that because feminism is so strong all this is covered by insurance. Perhaps if feminism were really strong women would not think they need a fake breast.
71
As a feminist your comment outrages me. Most women have reconstruction for themselves, not for a man. And as someone who has lived flat and had reconstruction, I can say with certainty that having flesh on my chest is much more comfortable. Sure there's a surgical price but to me it was well worth it. I am sick of the hudgment of other women on this very personal issue.
4
Yes! The idea of weakening my back or abdomen in order to create a visual replica of a breast was ridiculous and abominable in my mind.
Thankfully my well-informed chiropractor helped me make good decisions. She took into consideration all the types of motor movement, lifting, standing, walking,I would have to do for the rest of my life. That was more important than how I might look.
I did not come to this quickly or easily. First, a biopsy. Then a lumpectomy. Then one mastectomy after which I lived for over 14 months with only one breast which made strange back aches. That procedure included a lymphedectomy. Lastly, the other breast was removed.
I would've preferred a simple double mastectomy at the outset had I known what lay ahead.
All this because at the Veterans Administration, their focus was preserving my "femininity" by appearance only. Devil be damned what my health might be: "Didn't I want to keep the appearance of tits?!" Their offers of help had little to do with true, whole wellbeing.
Thankfully, a sympathetic plastic surgeon who donates his time to veterans saw what would be best in my situation and completed the final mastectomy and tightened up the horrid scars left by the general surgeon's first three outings.
I am flat chested now.
Luckily /sarcasm\ with all the bathroom bills and silly stupidity going around about where one should pee, I now can deal with the politics of being breastless.
Thankfully my well-informed chiropractor helped me make good decisions. She took into consideration all the types of motor movement, lifting, standing, walking,I would have to do for the rest of my life. That was more important than how I might look.
I did not come to this quickly or easily. First, a biopsy. Then a lumpectomy. Then one mastectomy after which I lived for over 14 months with only one breast which made strange back aches. That procedure included a lymphedectomy. Lastly, the other breast was removed.
I would've preferred a simple double mastectomy at the outset had I known what lay ahead.
All this because at the Veterans Administration, their focus was preserving my "femininity" by appearance only. Devil be damned what my health might be: "Didn't I want to keep the appearance of tits?!" Their offers of help had little to do with true, whole wellbeing.
Thankfully, a sympathetic plastic surgeon who donates his time to veterans saw what would be best in my situation and completed the final mastectomy and tightened up the horrid scars left by the general surgeon's first three outings.
I am flat chested now.
Luckily /sarcasm\ with all the bathroom bills and silly stupidity going around about where one should pee, I now can deal with the politics of being breastless.
In 1984 one breast was removed and reconstructed, with nipple sparing, and the other was changed to "match" it. The paraesthesia took 5 years to subside. No one told me that I would lose erotic sensation, and I waited a long, sad time to realized that the sensation that was, for me, dominant in my sexual arousal would never return. After the first year, I wrote to the plastic surgeon about how sad I felt, not expecting to hear back, and never did. I'm surprised it's taken so long for this concern to rise to public awareness. I'm certain it has to do with physician concern that women might refuse treatment if only they knew... The standard of care SHOULD BE to fully inform women AND refer them to a sex therapist to help shift and develop erotic practices for enhanced sensation. (Such as OMing)
Further: the word "feel" and "look" truly have been in reference to the lookers, not the "carriers" (because that's what being numb feels like). Also: the reconstructed breast that I have was implanted sub-pectorally, (not necessary) so when I use my arm, my "breast" deforms. Was I expected to stand still in order to look "good?" I have to wear bras that camouflage the distracting reshaping that happens when I use my arms.
I still feel torn about writing this at all: I am grateful to be alive, and don't want my writing to have an inhibitory effect on others. The message here is this: breasts are not "extra" any more than penises are. So get treatment for cancer AND erotic life.
Further: the word "feel" and "look" truly have been in reference to the lookers, not the "carriers" (because that's what being numb feels like). Also: the reconstructed breast that I have was implanted sub-pectorally, (not necessary) so when I use my arm, my "breast" deforms. Was I expected to stand still in order to look "good?" I have to wear bras that camouflage the distracting reshaping that happens when I use my arms.
I still feel torn about writing this at all: I am grateful to be alive, and don't want my writing to have an inhibitory effect on others. The message here is this: breasts are not "extra" any more than penises are. So get treatment for cancer AND erotic life.
23
THere are many gaps in information that should be given to cancer patients. Part of the problem is that you have a team of doctors who do not necessarily operate as a team. Each sees their specialty and if you are not lucid enough, intelligent enough, and courageous enough to question them ad nauseum you are liable to end of damaged and/or dead.
Moi? When they kept trying to persuade me to do the reconstructive thing with nipples I looked him in the eye and said at my age (still young enough to enjoy sexual sensation) I. Do. Not. Want. Big. Breasts. Or. Nipples.
Best decision I made.
My pet peeve is that no one and I mean no one tells you about hearing loss due to chemo. Aarrrrgh!
Moi? When they kept trying to persuade me to do the reconstructive thing with nipples I looked him in the eye and said at my age (still young enough to enjoy sexual sensation) I. Do. Not. Want. Big. Breasts. Or. Nipples.
Best decision I made.
My pet peeve is that no one and I mean no one tells you about hearing loss due to chemo. Aarrrrgh!
6
Yes, and there can be heart problems caused resulting from the chemo...
2
I believe it was said earlier, but worth repeating that it's the masectomy, not the reconstruction that is causes the loss of sensation. It's false to say that reconstruction is causing this issue. If your surgeon or oncologist hasn't informed you that you have a loss of sensation, that's who you need to speak with about better information. I would also say to those that think it's terrible that the plastic surgeons are focusing on women's looks, well, that's the point. A large reason for having breast reconstruction is to have the same "look" that you did before. I've not run into a plastic surgeon yet who told me that everything was going to feel the same as before - but they helped me make my body look the similar, almost the same, which was important to me.
2
Ridiculous. Yes I no longer have "real" breasts, but ten years after my mastectomies for Stage III cancer in my right breast, I am still alive and have had no reoccurrence. That's a fabulous trade-off in my opinion!
14
For now, mastectomy is the only option brca mutation carriers have to virtually eliminate a disease that will either kill or put a woman through hellish treatments while keeping her scared of recurrence for the rest of her life. So, um, I'll take it. I would urge other brca carriers not to let this dissuade them from doing what they know they have to do. No one said life was fair.
5
This is why some women do not get reconstruction. I have feeling throughout my chest after a double mastectomy with no reconstruction. I wear prosthesis when I go out and I forget that they aren't regular breasts.
I know many women who have chosen reconstruction and that is a perfectly valid choice. However, that choice should be an INFORMED one.
I know many women who have chosen reconstruction and that is a perfectly valid choice. However, that choice should be an INFORMED one.
6
This is not just common to mastectomies. I had breast reduction surgery by someone with a national reputation, and have almost no erotic feeling in my nipples. They are also MUCH smaller--almost pre-pubescent.
4
As I understand the article, it is not a choice between having cancer or not having cancer - it is knowing in advance what to expect as collateral damage of removing the cancer. I doubt any woman would ordinarily refuse a mastectomy if one were needed, but to not know in advance that sensation will be lost would be an awful shock. Not that it's anyone's business, but if you have very sensitive nipples, you can practically reach orgasm that way. Now, that would be something to be sad about, but at least if you know in advance, you have a chance to come to terms with it, and not be blindsided.
14
Thank you for writing about this. I first heard about it a few years ago, and I've been surprised ever since that it isn't talked about more often.
I think the low priority that is given to making patients aware of this issue speaks volumes about the cluelessness, and probably the sexism, of the medical community. It's all about appearance.
They're working on penis transplants. I wonder if they're focusing only on the appearance of it, and ignoring sensation. Something tells me sensation is at the top of the list. Maybe I'm wrong. But medical professionals have given short shrift to women's health for centuries, and I think that's a big reason why they apparently, and astoundingly, dont talk to women about such a major issue.
I think the low priority that is given to making patients aware of this issue speaks volumes about the cluelessness, and probably the sexism, of the medical community. It's all about appearance.
They're working on penis transplants. I wonder if they're focusing only on the appearance of it, and ignoring sensation. Something tells me sensation is at the top of the list. Maybe I'm wrong. But medical professionals have given short shrift to women's health for centuries, and I think that's a big reason why they apparently, and astoundingly, dont talk to women about such a major issue.
20
I had a double mastectomy last year after finding out that--like Angelina J.--I was BRCA 1 + and had 70+% chance of getting breast cancer. (Thank you, Angelina, seriously.) The decision was a no brainer for me: I have 2 kids; I want to watch them grow up. I didn't want surveillance--yearly mammogram, MRI + 2 dr's visits; each time they think they find a lump--biopsy+a dart in the breast to mark where there was nothing. I never had breast cancer, and I selfishly thanked my mother as she survived every step for having saved me from going through it too.
So, if you don't have BRCA, a lumpectomy may be right for you. Your cancer in one breast may not be related to the other breast, but please don't put other people at risk by making bad comparisons. If you have BRCA, I recommend a support group like Force for information.
Nipple sensation: I have seen bad recons in the process of planning. Nipple sparing is relatively new, so there are only 3 or 4 breast/plastic teams in the US I trust. Flap is more complicated. If your surgeon hasn't done these exact surgeries hundreds of times, you are in the wrong place. If they are evasive or refuse to spare your nipples or transfer only fat, find another dr. I got the right warnings, but I do have feeling in all but a triangle of both breasts, full nipple sensation in one (including orgasm) and less intense in the other. I won't say their names but my drs are in Tarrytown, NY. My breasts look and feel amazing, including to me.
So, if you don't have BRCA, a lumpectomy may be right for you. Your cancer in one breast may not be related to the other breast, but please don't put other people at risk by making bad comparisons. If you have BRCA, I recommend a support group like Force for information.
Nipple sensation: I have seen bad recons in the process of planning. Nipple sparing is relatively new, so there are only 3 or 4 breast/plastic teams in the US I trust. Flap is more complicated. If your surgeon hasn't done these exact surgeries hundreds of times, you are in the wrong place. If they are evasive or refuse to spare your nipples or transfer only fat, find another dr. I got the right warnings, but I do have feeling in all but a triangle of both breasts, full nipple sensation in one (including orgasm) and less intense in the other. I won't say their names but my drs are in Tarrytown, NY. My breasts look and feel amazing, including to me.
16
I am also BRCA1 and have had one mastectomy with no recon. I still have my other breast as I didn't want to lose that nipple sensitivity. But......I probably do need to have another mastectomy. It was recommended.
Can I ask what kind of recon you got? And perhaps some more hints about where you went?
Can I ask what kind of recon you got? And perhaps some more hints about where you went?
4
Had a mastectomy nearly 5 years ago and just got a breadth cancer ribbon tattoo on it that was excruciating. Nerves can regrow and innervate skin covering a reconstructed breast but of course it will never feel the way it did prior to surgery.
1
I just had a double mastectomy due to DCIS diagnosed in one Breast. I knew I wanted to avoid undue pain and further surgeries and was not interested in reconstruction. Despite being absolutely happy and resigned to the idea of being flat, all 3 extremely accomplished doctors (Cooper, Sloan Kettering, Weill Cornell) INSISTED I probably did and really needed to think about it some more. One even told me he wouldn't agree to the surgery until I had at least consulted with the plastic surgeon. Nope! I knew what I wanted and every single nurse told me in the sly that I was doing the right thing. Incredibly fast recovery (back at the gym - working lower body by day 3 after surgery) , little pain (didn't need painkillers), back to normal 4-5 weeks afterwards and I can feel everything!! (No nipples but who cares?) I am now 7 weeks post and have full movement . Of course this is due to one of these surgeons doing an impeccable job sewing it up. I did bring a photo of how I wanted it to look. I love being flat!!
52
Good for you! So happy you are doing well and continued great health.
10
My story is essentially the same. Two mastectomies, two years apart, no reconstruction. I was driving and back at the gym as soon as the drains came out. I'm flat and healthy and quite happy. No prosthetics.
3
Unless you carry a mutation in a gene which puts you at high risk of breast cancer recurrence, I am surprised that your super specialists did not discourage you from having the surgery at all. The outcomes of women with DCIS are the same or better without mastectomy. In my case, I made a similar decision to yours, mastectomy without reconstruction, but this was as a result of being found to have a BRCA1 mutation and having been diagnosed with, and treated for ovarian cancer.
Women are "still" judged by their appearance? Yes, indeed.
Women will always be judged by their appearance. And men will always be judged by their strength and ability to acquire resources.
Human nature does not change, liberal hopes notwithstanding.
Women will always be judged by their appearance. And men will always be judged by their strength and ability to acquire resources.
Human nature does not change, liberal hopes notwithstanding.
8
I had the procedure 30 years ago. My only concern was survival. I had immediate reconstruction which is apparently not done now. It never occurred to me that my new breast would feel like my real one did. Of corse my doctor never told me it would feel the same. What did these women think the outcome would be?
I am told that women today do lots of research before having breast cancer treated. Mine surgery was before the internet - sorry but these surprised women did not do their homework.
I am told that women today do lots of research before having breast cancer treated. Mine surgery was before the internet - sorry but these surprised women did not do their homework.
6
Pain after an mastectomy is frequently dismissed as reported by Michelle Lamon Romero in this article. Yet, Spanish and other studies of post-mastectomy pain demonstrate that myofascial pain and trigger points are common contributing factors, that with proper treatment can significantly improve the quality of life and reduce the pain. See for example:
1. Fernandez-Lao, et al. 2010. Myofascial trigger points in neck and shoulder muscles and widespread pressure pain hypersensitivtiy in patients with postmastectomy pain: evidence of peripheral and central sensitization. Clinical Journal of Pain, 26, 798-806.
2. Fernandez-Lao, C, et al, 2012. Development of active myofascial trigger points in neck and shoulder musculature is similar after lumpectomy or mastectomy surgery for breast cancer. Journal of bodywork and movement therapies, 16, 183-190.
3. Shin, HJ, et al. 2014. Application of ultrasound-guided trigger point injection for myofascial trigger points in the subscapularis and pectoralis muscles to post-mastectomy patients: a pilot study. Yonsei Medical Journal, 55, 792-799.
4. Torres Lacomba, M, et al, 2010. Incidence of myofascial pain syndrome in breast cancer surgery: a prospective study. Clinical Journal of Pain, 26, 320-325.
1. Fernandez-Lao, et al. 2010. Myofascial trigger points in neck and shoulder muscles and widespread pressure pain hypersensitivtiy in patients with postmastectomy pain: evidence of peripheral and central sensitization. Clinical Journal of Pain, 26, 798-806.
2. Fernandez-Lao, C, et al, 2012. Development of active myofascial trigger points in neck and shoulder musculature is similar after lumpectomy or mastectomy surgery for breast cancer. Journal of bodywork and movement therapies, 16, 183-190.
3. Shin, HJ, et al. 2014. Application of ultrasound-guided trigger point injection for myofascial trigger points in the subscapularis and pectoralis muscles to post-mastectomy patients: a pilot study. Yonsei Medical Journal, 55, 792-799.
4. Torres Lacomba, M, et al, 2010. Incidence of myofascial pain syndrome in breast cancer surgery: a prospective study. Clinical Journal of Pain, 26, 320-325.
5
Why in the world would any woman who has gone through a mastectomy would also want to go through a brutal reconstructive surgery? Breasts are mammalian glands that become useless and cumbersome later in life. The only people who benefit from it, are the surgeons who are usually men. Women enjoy your freedom, stop wasting your money on useless procedures that may be harmful to your health just please somebody else.
2
I did the Reconstruction because I was young and didn't want to look altered. With a bilateral mastectomy at 45 I wanted to look like the woman who had nursed 3 boys for six straight years. My body.
At first I was told that I didn't have enough material to make two autologous breasts from my abdomen so I was given expanders for implants. They didn't work well for me and having to move to LA in the midst of the drama introduced me to another cancer research center's plastics team. They gave me the Free Flaps. My own body with the help of a very talented surgeon gave me two breasts. Not as lovely as the original but able to fill a bra. My toddler once again could cosy on my chest. Yes, numb for the first year or two they eventually began to feel as if they were a part of my body.
Yep. Lots of surgery. But worth it. This is one reason why many of us choose lengthy reconstructive surgery.
At first I was told that I didn't have enough material to make two autologous breasts from my abdomen so I was given expanders for implants. They didn't work well for me and having to move to LA in the midst of the drama introduced me to another cancer research center's plastics team. They gave me the Free Flaps. My own body with the help of a very talented surgeon gave me two breasts. Not as lovely as the original but able to fill a bra. My toddler once again could cosy on my chest. Yes, numb for the first year or two they eventually began to feel as if they were a part of my body.
Yep. Lots of surgery. But worth it. This is one reason why many of us choose lengthy reconstructive surgery.
2
This is pretty insensitive. Its a very personal choice. I am one of many women who did not find living with one breast 'freeing.' And after 18 months living like that, I definitely did not want to go completely flat. I reconstructed to please myself: to be warm and comfortable and feel like my old, healthy self. I went into it very well informed and am thrilled with the results. Please do not judge if you have not been through the nightmare of diagnosis, chemo, radiation-- then having to make difficult reconstruction decisions.
7
Men whose partners have lost breasts or nipples as erogenous zones can help by becoming more adventurous and helping each other realize they may have overlooked some additional less obvious yet equally pleasurable areas. There are many.
7
This made me sad at first, and then immediately I asked myself "why the lack of information provided to the patient?"
I'd not heard of the numbness issue, but am all too familiar with other bad side effects. My mother had a mastectomy in 1999 and up until her death in 2016 she suffered from high-level nerve pain. Not one doctor was able to explain what caused it, just said it probably happened during the surgery; maybe they cut a main nerve. Not very comforting.
I wish with all my heart that my mother didn't have to live with that pain for so long. She was a trooper though. Fentanyl patches helped a bit. But do you know that we finally found something that brought her pain level down? And sadly she was only able to try it once. When we went into the office her pain was a 7 out of 10. During the 45 minute procedure it was 0. Nothing. No pain. And then for the next few days it was a 2 or 3.
It's called scrambler therapy. It's also known as Calmare therapy. And they recommend a series of treatments for best effect. We weren't able to do the whole series of treatments, but boy oh boy... that was one of the best hours my mom spent in her life. Happy to have found it even for that brief respite from the pain.
Good luck to all who have to deal with this. Keep searching for answers, and know that you are not in this alone.
I'd not heard of the numbness issue, but am all too familiar with other bad side effects. My mother had a mastectomy in 1999 and up until her death in 2016 she suffered from high-level nerve pain. Not one doctor was able to explain what caused it, just said it probably happened during the surgery; maybe they cut a main nerve. Not very comforting.
I wish with all my heart that my mother didn't have to live with that pain for so long. She was a trooper though. Fentanyl patches helped a bit. But do you know that we finally found something that brought her pain level down? And sadly she was only able to try it once. When we went into the office her pain was a 7 out of 10. During the 45 minute procedure it was 0. Nothing. No pain. And then for the next few days it was a 2 or 3.
It's called scrambler therapy. It's also known as Calmare therapy. And they recommend a series of treatments for best effect. We weren't able to do the whole series of treatments, but boy oh boy... that was one of the best hours my mom spent in her life. Happy to have found it even for that brief respite from the pain.
Good luck to all who have to deal with this. Keep searching for answers, and know that you are not in this alone.
4
This is exactly why I didn't have reconstructive surgery after my double mastectomy two years ago. I have no regrets about going flat, since it is clear that the reconstructed breasts that I would have been given after surgery would have been for others, not me.
10
I don't regret my mastectomy five years ago. It was the better choice for me and for my cancer, and, truth be told, a lumpectomy is no cakewalk because of the radiation and hormone therapy, which I did not need to have. The numbness is not a deal breaker, but for a while it made me feel that part of my body was alien. In my view, the word "reconstruction" is a set-up. Why not call it a replacement or an internal prosthesis?
8
Yes! And know this : we are double amputees many of us.
If anybody *else* got anything •else• cut completely off of their bodies they would be claiming amputee status.
The removal of these organs has definitely curtailed my ability to lead life as I was born to do. I no longer have the breasts that were mine. I am living a life without being home. I am a double amputee.
If anybody *else* got anything •else• cut completely off of their bodies they would be claiming amputee status.
The removal of these organs has definitely curtailed my ability to lead life as I was born to do. I no longer have the breasts that were mine. I am living a life without being home. I am a double amputee.
1
I'm not sure why this is such a surprise. I knew full well that when I chose to have a bilateral mastectomy (with reconstruction) that I would lose ALL feeling in my chest. I went into the surgery knowing this would be the case and accepted it. For me it was a personal decision and I have no regrets. I really can't understand how anyone would think that sensation would be restored? Even the area under might left arm (where I had a sentinel node biopsy) remains numb.
Do I miss the sensation? Yes. Do I regret my choice? Not once in 15 years.
Do I miss the sensation? Yes. Do I regret my choice? Not once in 15 years.
7
I had breast cancer and a double mastectomy and chemotherapy. of course, I have no feeling in my breasts. so what? I have a very active and fulfilling sex life, nonetheless. I thank medical science and my accident of birth in this era that I could have reconstruction instead of wearing prosthetics as women did in the 1970s upon having a radical mastectomy. seriously? you are able to find out if you have the brca gene and take preventative action to prevent cancer, as can your daughter's. get over yourselves.
9
When I had a double mastectomy 17 years ago, my doctor told me that the new breasts "may not feel the same" afterward. So I can't say that I didn't know that going in. Afterward, despite their enhanced size and shape, which I liked, I realized the new breasts felt 'dead' to me. Learning to factor that new numbness into my body image was an adjustment process, as well as a grieving process. I do not regret having the mastectomies... I've had no recurrence, and do not worry about having one in the future. I like the way I look in clothes and I've made peace with the rest. As I see it, one of the tasks of healthy aging is learning to let go of the younger body I once had. This is just one more change in my continuing process of aging.
5
I am just astonished by all the comments saying women should know their reconstructed breasts will be numb. This is something that never occurred to me. Not all of us are knowledgeable about surgery.
Especially since any number of doctors tell the women their breasts will feel normal. Who on hearing that would think normal to someone else, but not to themselves?
I am grateful for this article. If, God forbid, I ever have breast cancer, I will know not to have breast reconstruction, since I assume my flat chest will have enough sensation to warn me of burns, etc. At least, I would hope that it would, something to ask my doctor whom I would hope would tell me the truth.
Especially since any number of doctors tell the women their breasts will feel normal. Who on hearing that would think normal to someone else, but not to themselves?
I am grateful for this article. If, God forbid, I ever have breast cancer, I will know not to have breast reconstruction, since I assume my flat chest will have enough sensation to warn me of burns, etc. At least, I would hope that it would, something to ask my doctor whom I would hope would tell me the truth.
17
I had breast cancer surgery 5 years ago. I was put under a great deal of pressure to have a mastectomy and reconstruction. However, at 69 I wanted most of all to keep the procedure as minimally invasive as possible. I am glad I did, but I certainly could have missed out hearing about the two female doctors in the surgery saying that they really wouldn't want to look as I do.
6
I had a mastectomy followed by breast reconstruction 11 years ago. After a few years, the new breast - with all its strangeness - became a truly beloved part of my body. I rarely notice the numbness anymore. But at first, it was alarming, even though someone did warn me ahead of time. What is really hard to remember after all these years is the acute fear of dying of cancer that I experienced shortly after diagnosis. That faded too. Life goes on.
10
This is mostly rubbish. I had breast reconstruction surgery 30 years ago and was told clearly at the time (and was not surprised, given the information widely and publicly available then, even without my own doctor's advice) that loss of sensation was a possible if not likely side effect. With so much more and better information available now, a woman herself has some responsibility for understanding the risks as well as the benefits of undergoing any kind of surgery. Yes, your doctor has a duty to tell you, but I can't imagine such surgery would be given without informed consent, with all risks disclosed. Sometimes people hear and read only what they want, out of fear or misplaced hope. Women, you are not helpless children. Take responsibility for yourselves and your bodies!
9
This is not rubbish. I had a DIEP flap procedure almost 3 years ago, and despite asking detailed questions of my surgeon and plastic surgeon, the potential numbness and other side effects were minimized by both doctors. Three years later, and I have total numbness in my "reconstructed" breast, numbness in my arm, and radiating pain in my abdomen at the site where the tissue was removed. Neither physician wanted to hear about any of the side effects post-surgery as both were focused on what they perceived to be the "natural" appearance of my reconstructed breast. With regard to being an informed patient, there is an overwhelming amount of information available on the internet, and most of it is outdated because treatment regimens change so quickly. That's why it's so important to work with physicians who are current on emerging treatment protocols and who can help patients filter and digest information regarding the treatments they recommend.
19
Medical operations are not matters of "survival." I was cured of prostate cancer. I couldn't have done the operation myself. I was cured by a doctor. Survival is when a plane crashes in the Andes and the "survivors" hang on for months, and perhaps resort to cannibalism; or maybe a sailor lost at sea. So consider stopping the survival meme; you're too full of yourself, like the people in the article who did not even do the research to find out for themselves the side effects of their operation. Stop placing too much emphasis on yourself and feel lucky to be cured and alive; it is the medical professionals who actually performed the work that made your survival even possible.
7
Frank I have two perspectives. I had bilateral prophylactic mastectomy 9 years ago and my life is ruined by chronic severe chest wall pain. Think of it this way: Before any surgery your doctor gives you a description of the side effects. Why would anyone suspect that the surgeon is leaving major side effects out with no mention at all? I now know that I did not have an unusual surgeon. Most of them do not disclose the risk of permanent severe disease. If I had known I would have opted for the MRI ultrasound biopsy the maybe omas route. My choice, if I were given one. Others would choose differently.
Times readers have a high proportion of people who do research on all kinds of topics including their healthcare. I was a hospital executive and a managed care executive for total of 35 years and it is very well understood for a decade now that there is a high degree of struggle in what is known as health literacy even among people with College and graduate education. Most people do not even understand the basic terms of their health insurance policies and never bother to research,ask questions or in anyway improve that knowledge.
Given that, it seems a bit harsh to blame people for doubting the list of complications given by the doctor, then finding and understanding the medical studies that reveal the risks that doctors almost uniformly withhold. Oh, and try to tell your story to women you know who are considering the surgery? They rely on their doctors. Who don't tell.
Times readers have a high proportion of people who do research on all kinds of topics including their healthcare. I was a hospital executive and a managed care executive for total of 35 years and it is very well understood for a decade now that there is a high degree of struggle in what is known as health literacy even among people with College and graduate education. Most people do not even understand the basic terms of their health insurance policies and never bother to research,ask questions or in anyway improve that knowledge.
Given that, it seems a bit harsh to blame people for doubting the list of complications given by the doctor, then finding and understanding the medical studies that reveal the risks that doctors almost uniformly withhold. Oh, and try to tell your story to women you know who are considering the surgery? They rely on their doctors. Who don't tell.
5
I don't know why doctors don't fully inform patients about what to expect following surgery. It seems to me that informed consent would require them to let women know about the permanent numbness following mastectomy. That said, my doctor didn't tell me about this when I had one in 1982. She also didn't tell me about the chest pain I would have randomly that sent me to the ER frequently over the years thinking I was having a heart attack. Finally I learned that those pains could be caused by adhesions. Knowing that and knowing my heart is just fine, I finally ignore the occasional heaviness I get in my chest. In the meantime, it cost a lot of money to eliminate a diagnosis of heart attack.
3
After having kids I decided to get my breasts firm again. I went to a good plastic surgeon to have them lifted and had implants put in since I had lost a lot of volume. I was shocked to find out that I had no more nipple sensation afterwards. I couldn't believe it. I said nothing thinking that maybe I should have expected it? Or that it was "normal" for that to happen and I should not make a fuss? But I sure do miss the sensation! and think I'd rather have saggy breasts then give up the sexual stimulation that I got from my nipples.
4
When I had breast reduction surgery about eight years ago the surgeon told me quite specifically that withe this procedure, 25% of patients lose sensation, 25% have better sensation and 50% would experience no change. I guess I'm grateful that I had a [woman] surgeon who made a point of stating this clearly in advance.
4
Thank you for this article. I had a mastectomy two years ago and still feel the worst thing I suffered was not the cancer, not the loss of my breast, but the lack of information I was given. No one told me my breast would be numb, or that I might develop capsular contraction that will make my breast look like cottage cheese (which has happened) or that it would be impossible to match my breasts. I think all of this would have been so much easier to deal with if I had had known what to expect. I believe the job of the doctors, the plastic surgeons especially, should be to answer the questions the patients do not know to ask.
5
Nearly three years ago I had treatment for breast cancer which included a mastectomy. Reconstruction is generally not offered to men, and I didn't pursue this further. Now I am without a nipple but I have feeling in my chest where the breast was.
Six months ago I was diagnosed with an aggressive prostate cancer and I had a prostatectomy. My surgeon says I have got a 30% chance of achieving an erection in two years time.
So, getting rid of cancer has its drawbacks and these should be clearly spelt out before you decide on your course of action.
Six months ago I was diagnosed with an aggressive prostate cancer and I had a prostatectomy. My surgeon says I have got a 30% chance of achieving an erection in two years time.
So, getting rid of cancer has its drawbacks and these should be clearly spelt out before you decide on your course of action.
4
Thank you for the reminder that men suffer breast cancer also. Best wishes on your double cancer survivorship.
5
When I had cancer 8 years ago, I heard very little doctor had to say after the word "cancer". Even though I brought a friend with me to every appointment, my mind wasn't functioning normally. I just wanted to live. The last thing on my mind was sexual arousal. I opted for implants after a double mastectomy and I hated them. They were cold to the touch, didn't fit my body, and I couldn't sleep on my stomach. Another doctor recommended the "Trans flap" procedure to me and so I had it done. I have gotten use to having no feeling in my breasts and they look more natural on me. I'm now cancer free and nothing else really matters that much.
8
Well, call me surprised. The only way surgeons can tell women that "breasts will look and feel normal after surgery" is if the breast is an object to be looked at and felt by others, not by the human inside the body in question. When will our citizens realize that women are not full human beings yet and demand real change? The sentence "breasts will feel normal" even when nerves are not reattached (or reattachable) is completely incomprehensible unless we see this truth about gender. Oh, we saved the nipple! That is, we saved the appearance of the nipple without the nerves. In what sense is the nipple saved? Only for those who matter -- which clearly do not include the female human in question. I will use this article as perfect evidence that the male gaze is the standard next month in my Kenyon College first year seminar Quest for Justice section on Feminism.
3
I personally believe that a lot of post-mastectomy pain could be avoided by a if this issue was higher on the agenda. Greater attention to nerve paths and the healing process after mastectomy could spare a lot of women a great deal of suffering. Noone told me about the pain, but then again I would have had the surgery anyway. Yet I and other breast cancer patients I know suffer debilitating pain for years and years after mastectomy. In Sweden at least, we find that surgeons and oncologists neglect and downplay this suffering as just whining. Or that the chronic pain we suffer is an unavoidable consequence of mastectomy. If we patients instead were listened to, I believe surgeons could learn to improve their skills.
2
I am a 53 year old woman and I had this procedure last March. I carry the BRCA1 gene and I lost a great grandmother, a grandmother and a mother to this cancer - all in their 40's and early 50's. Now in 2016 not only did I get warning (thanks to advances in genetics) that I was at risk, I could avail of new surgical techniques that gave me just a 2.5 hour operation (down from 7-8 hours) with one night in hospital. I get to preserve the aesthetic look of my breasts - (and yes they do look better than before) with no visible scars but most incredibly my risk of getting this cancer is now down from 85% to 5%. I have no pain. I am able to do ALL the sport (including extreme sports) that I did before I had this operation. Yes there is reduced sensation - for me 70%- 80% but it has had zero effect on my libido and sense of who I am as a woman. I watched as they butchered my mother with her mastectomy in the 1980's then gave her a bra with fake breasts and told her to go home and be thankful. I dislike the phrase first world problems but this article is a perfect example of this for me. I travelled to the US to have this procedure because I did not have the option of a nipple sparing operation in my country. I was told I could have a tattoo or prosthetic nipple. The advances that have been made in this area in one generation are enormous. Most amazing of all is I will now likely be the first mother in four generations of my family to live to see her grandchildren.
8
I think this article is deceiving. I had a double mastectomy with reconstruction two years ago and both my surgeon and my plastic surgeon warned me about the loss of sensitivity so it did not come as a surprise. I am sure that professional and serious doctors warn patients about this and I cannot imagine how this can come as an unwelcome surprise.
I have to say that two years in my sensitivity has improved but I had no expectations about it.
By the way, my plastic surgeon was Dr Pusic, mentioned in this article, and she was absolutely great!
I have to say that two years in my sensitivity has improved but I had no expectations about it.
By the way, my plastic surgeon was Dr Pusic, mentioned in this article, and she was absolutely great!
3
I had a lumpectomy in 1997 followed by a bilateral mastectomy in 2003. I did not have reconstruction because my odds of beating the cancer were better without it. I regard both surgeries as having saved my life, and my decision to be flat as the best one for me. However, my right breast was so painful after the lumpectomy that I've actually been grateful for the mastectomy that eventually removed that breast. Even though I do have debilitating pain from post mastectomy pain syndrome. What makes me angry was that every doctor (except one) acted like they'd never seen that kind of pain before, and that I must be making it up. If 25% to 65% of mastectomy patients experience pain, they must MUST have seen it numerous times. The one doctor who didn't act shocked was the one who treated my pain. Even pain beats the heck out of the alternative. But no one informed me of the numbness or pain that might result from the surgeries. I actually came to believe that if they had, noone would do it. But they ought not to act surprised, and make it be my fault. Refusing to treat intense pain because it's "in my head". That's what makes me angry.
10
Am I to believe that it is the fault of misogynistic doctors that women get breast-reconstruction surgery after mastectomies--that doctors are only concerned that these disfigured women replace their breasts because it is important to them that women look beautiful in the ordinary, masochistic way?
That these women bear no responsibility for wanting to look like they did before having their breast tissue excised?
This is plastic surgery. Results will inevitably vary. And I bet no doctor guaranteed any of these women that their nipples would retain the feeling they had prior to the surgery. I bet everyone one of these women were warned otherwise. Legal liability would demand nothing less. I bet the women just ignored the warning for the hope that they might be the exception.
That these women bear no responsibility for wanting to look like they did before having their breast tissue excised?
This is plastic surgery. Results will inevitably vary. And I bet no doctor guaranteed any of these women that their nipples would retain the feeling they had prior to the surgery. I bet everyone one of these women were warned otherwise. Legal liability would demand nothing less. I bet the women just ignored the warning for the hope that they might be the exception.
5
Six weeks out from my double mastectomy with reconstruction. I wish the article had mentioned that if you google breast reconstruction, all of the sites do clearly mention the loss of feeling. I can't remember if any of my doctors mentioned it, but I also given various handouts that included it. I think it is very, very far from being the big secret that this article makes it seem like!
Also, echo the earlier the poster that the numbness is from the mastectomy, not the reconstruction, but obviously having numb appendages is more noticeable than a numb flat chest. For those who want reconstruction, I think it can provide a huge psychological boost during a tough time. It has for me. It's not a perfect technique, and it's not uncommon for women to have problems, but I am extremely grateful that it has come as far as it has. I think the results generally look quite good these days. I disagree that this cosmetic procedure it just for other people (men). When I see my still-in-progress boobs, it makes me feel good! Let's remember that the main thing that sucks is having your breasts cut off because of cancer (assuming lumpectomy is not an option for you)--the reconstruction is a gift as far as I'm concerned!
Also, echo the earlier the poster that the numbness is from the mastectomy, not the reconstruction, but obviously having numb appendages is more noticeable than a numb flat chest. For those who want reconstruction, I think it can provide a huge psychological boost during a tough time. It has for me. It's not a perfect technique, and it's not uncommon for women to have problems, but I am extremely grateful that it has come as far as it has. I think the results generally look quite good these days. I disagree that this cosmetic procedure it just for other people (men). When I see my still-in-progress boobs, it makes me feel good! Let's remember that the main thing that sucks is having your breasts cut off because of cancer (assuming lumpectomy is not an option for you)--the reconstruction is a gift as far as I'm concerned!
9
Thank you for this article. Although I feel it is a bit one-sided, as a reconstructive surgeon, I agree that we need to do more to educate patients about what will and will not be preserved after these operations. One point of clarification that I feel is important: the loss of sensation is not due to the reconstruction, per se, but the mastectomy. Cutting out all the breast tissue by necessity includes removal of nerves that run through that tissue. Put another way: Ms. McCree would be just as numb in her chest if she had not had reconstructive surgery as she is today after it.
I think that part of the problem comes from unrealistic expectations. I have actually had a patient tell me she was happy she had breast cancer, because now she could get the breasts she always wanted, and have insurance pay for it! Patients often assume that the process of, and the results from, breast reconstruction will be very similar to the breast augmentation they or an acquaintance has had, when the reality could not be further from the truth. Any plastics surgeon who states that "reconstructed breasts will look even better than the breasts they had before" are doing their patients a great disservice. As more and more patient today are able to keep their own nipples, they understandably assume that this means they will still feel the same. I try to always discuss this topic at length with my patients before surgery, so they are not surprised afterwards.
I think that part of the problem comes from unrealistic expectations. I have actually had a patient tell me she was happy she had breast cancer, because now she could get the breasts she always wanted, and have insurance pay for it! Patients often assume that the process of, and the results from, breast reconstruction will be very similar to the breast augmentation they or an acquaintance has had, when the reality could not be further from the truth. Any plastics surgeon who states that "reconstructed breasts will look even better than the breasts they had before" are doing their patients a great disservice. As more and more patient today are able to keep their own nipples, they understandably assume that this means they will still feel the same. I try to always discuss this topic at length with my patients before surgery, so they are not surprised afterwards.
15
To assert, as several commenters have, that the devastation a woman feels after having lost one or both breasts to cancer surgery should be somehow subordinate to feelings of gratitude for "having her life saved" (which may or may not have occurred as the result of surgery, chemotherapy, radiation, or hormonal therapy, singularly or in combination) is to diminish the value of quality of life. I had a right mastectomy 6 years ago. I know, in no uncertain terms, the difference between one breast that has feeling, and one that has none. It is something you get used to, but never fully recover from. I carry the reminder of what cancer treatment did to me every moment of every day: I cannot escape the sensations, let alone the feelings they evoke.
I am not unappreciative of what my doctors did for (and to) me. However, I do not feel I owe a debt of gratitude for what is really, in the end, luck (even if it might have been abetted by science). The very fact of this alteration has profoundly impacted every aspect of my life, physically, psychologically, socially. Please do not minimize quality of life -- in my opinion, this is an admonition equivalent to those uttered by the most stringent "life-at-any-cost" sloganeers.
I am not unappreciative of what my doctors did for (and to) me. However, I do not feel I owe a debt of gratitude for what is really, in the end, luck (even if it might have been abetted by science). The very fact of this alteration has profoundly impacted every aspect of my life, physically, psychologically, socially. Please do not minimize quality of life -- in my opinion, this is an admonition equivalent to those uttered by the most stringent "life-at-any-cost" sloganeers.
9
I find it hard to believe that surgery on a man's penis with a high probability of numbness would be described as leaving the man with a penis that feels normal (to anyone touching it but nub to him). I recently underwent back surgery and one approach I considered carried a small risk that I would be temporarily infertile (I'm 53!) but fully functional and with no loss of sensation. The doctor was very clear that I needed to be OK with this potential complication. Sometimes it really pays to be a guy.
3
Well, as long as doctors consider breasts diseased appendages to be excised, rather than complex organs whose biology we still understand little about, this will continue to happen.
Do we really know, as one commenter below says, that "mastectomies save lives?" We've had plenty of articles about breast cancer recently, and plenty of anecdotal stories by women convinced that surgery saved their lives, and stories about friends or family who died, and we still don't know how many subsets of disease cancer represents, and who has what, and what that means.
Surgeons love to do surgery--removals, reconstructions, everything in between. Oncologists love to render treatments. But we still know less than we need to, about every form of cancer.
Do we really know, as one commenter below says, that "mastectomies save lives?" We've had plenty of articles about breast cancer recently, and plenty of anecdotal stories by women convinced that surgery saved their lives, and stories about friends or family who died, and we still don't know how many subsets of disease cancer represents, and who has what, and what that means.
Surgeons love to do surgery--removals, reconstructions, everything in between. Oncologists love to render treatments. But we still know less than we need to, about every form of cancer.
7
Many women who desire breast reconstruction have basic if any knowledge of what procedures are available by the time they first speak with a plastic surgeon. It is often difficult to explain various procedures as well as all potential risks and benefits during a 1hr consultation. Often times, multiple consultations are required prior to surgical reconstruction. It is important women have access to a good education resource for breast reconstruction. Check out: www.bravebras.org
2
I had to wait 18 months for reconstruction after undergoing an emergency mastectomy, followed by chemo and radiation. I researched my oprions and asked lots of questions and I believe was given an honest picture of the loss of sensation after a bilateral DIEP procedure. From my perspective, having realistic-looking 'breasts' that feel warm and comfortable is a thousand times better than having to stuff my bra and struggle with the emotional highs and lows of living with surgical disfigurement. I suggest that whether you lose a breast to cancer or opt to remove a breast/s prophylactically, that you do your research, see if you are comfortable living flat, and therefore further avoid complex surbery, and join online peer support groups. Plastic surgeons do not bear all the responsibility for an information vacuum, the truth reall is out there. While teconstruction has not been a straight line, I feel i credibly lucky to have had the options that my grandmother did not have.
2
False. I had a bilateral mastectomy and 23 lymph nodes removed. I did not have any form of reconstruction and I retain all sensation, including erogenous. I do not have any pain. I went breast free because I was fortunate enough to do my homework and learn that 50% of reconstructive surgeries result in major complications. Once I informed my doctors of my decision I heard from them, "that's good - we see a lot of people with chronic pain," "it doesn't look good anyway," etc. They don't tell you these things because they assume all women want any semblance of a breast of given the option. Do as much research as possible to make your own informed decision.
3
Similar sexual sensation difficulties occur with hysterectomy and removal of ovaries. Some women do well post surgery, but orgasmic function and arousal for some women with hysterectomy and/ or removal of ovaries is diminished or lost and never regained. Most doctors still do not discuss this with patients or think it us all in their heads. Sigh.
4
As a practicing plastic surgeon, i am surprised by the vehemence of some of these comments. The nerves that provide sensation to the breast and nipple run through the substance of the breast tissue and by necessity will be divided by the mastectomy. It is not that there are techniques available to easily restore sensation to the breast which are not being done because of some misogynistic choice. The techniques that Dr Spiegel and others are working on appear to improve sensation and may improve quality of life but certainly will never restore normal sensation.
Virtually all women who choose breast reconstruction do so for a mix of conscious and unconscious reasons that we do not fully understand despite examining the question at length. Much more work remains to be done.
Work by Schain and others tells us that breast reconstruction assists in restoration of sexual health after mastectomy. Sensation is an important part of that-but not the only factor. Poor sensation does not make the whole effort worthless. Improvement in sexual functioning is present (for most women) even with poor sensation. And this is not the judgement of the surgeon but by self-reported outcomes.
Breast reconstruction has evolved remarkably over the past decade. The importance of informed choices for all women about reconstruction is no longer questioned. Improvements which are guided by the findings of Drs Pusic, Wilkins and others will continue to be made.
Virtually all women who choose breast reconstruction do so for a mix of conscious and unconscious reasons that we do not fully understand despite examining the question at length. Much more work remains to be done.
Work by Schain and others tells us that breast reconstruction assists in restoration of sexual health after mastectomy. Sensation is an important part of that-but not the only factor. Poor sensation does not make the whole effort worthless. Improvement in sexual functioning is present (for most women) even with poor sensation. And this is not the judgement of the surgeon but by self-reported outcomes.
Breast reconstruction has evolved remarkably over the past decade. The importance of informed choices for all women about reconstruction is no longer questioned. Improvements which are guided by the findings of Drs Pusic, Wilkins and others will continue to be made.
21
The misogyny is in the dismissive lack of forthright, transparent, prior information and, as in your implicit assumption, that appearance to others is a factor equal or superior to one's own sensation and subjective experience.
4
Thirteen years ago, I had a mastectomy without reconstruction. After that mastectomy, my body healed quite nicely. Other than numbing, I felt great. A year and a half later, I had another mastectomy and reconstructive surgery. I chose a reconstructive procedure called an LD skin flap, which used the tissue and blood supply from a muscle in my back. Since the reconstruction, I've been in constant discomfort and pain. I feel that my entire torso is being constricted. I have tightness and pulling in my torso. I cannot maintain a forward or side bend without cramping. The plastic surgeon never mentioned these possible side effects, and the video and literature provided by the health care provider painted a pretty rosy picture as well. I'm sure surgeons make a lot of money off of these procedures and maybe that's why they're not forthcoming about negative outcomes and why they overstate the positive.
I would without hesitation have the mastectomy, chemo, and radiation again. That treatment saved my life. However, had I known all these years later that the outcome would cause me so much discomfort, I would have opted to be flat and proud of it, and I would have skipped the reconstruction.
I would without hesitation have the mastectomy, chemo, and radiation again. That treatment saved my life. However, had I known all these years later that the outcome would cause me so much discomfort, I would have opted to be flat and proud of it, and I would have skipped the reconstruction.
7
This article is deceiving. I had a double mastectomy with reconstruction two years ago and I never had the expectation to keep sensitivity in my breasts. Both my surgeon and my plastic surgeon, (who is Dr Pusic mentioned in this article and she is great!) made me aware I would lose sensitivity. I thought that any doctor would make their patients aware of this. Two years in things have gotten better, but since I had no expectations, I am just happy for what I have and most of all I am happy that I am cured. Not a big deal the loss of sensitivity.
3
I was diagnosed with breast cancer last summer. There is nothing more bewildering than being an otherwise healthy person entering into the world of treatment. There are real choices that the patient must make, and, we patients must believe that the doctors are serving us in our best interests, not theirs. However, like any consumer of a service, it's up to the patient to make the decisions that are right for her. Seek counseling, read the thousands of blogs that exist, talk to partners and spouses and trusted friends.
4
Speaking from experience, loss of nipple sensation can happen even when only a lump is removed. Surgeons are just not focused on the nerves they are damaging and what the experience of that will be. Years ago, before needle biopsy I had a benign cyst removed, leaving me with years of pain in the nipple when it was touched, gradually shifting to pain intermittant with numbness, now numbness.
23
I am a breast cancer survivor. The wonderful doctors I had convinced me that I did not need a mastectomy. A large clinical trial has shown that mastectomy does not provide a better long term outcome compared to a lumpectomy. However, outside my doctors office I experienced a lot of societal pressure to have a mastectomy. More than one person told me , oh you get to have new breasts.
The women I met through breast cancer treatment all tell the types of stories here or worse. Not only can they not feel their breasts which is devastating but they often need to go back again and again to fix problems in their new breasts. Infected sites and other failures of surgery are expensive, time consuming ,and depressing.
Women have essentially been lied to about what life will be like after a mastectomy. The BEST a woman can hope for are breasts that look ok to others but that do nothing for her.
The medical release form and the informed consent discussions prior to mastectomies needs to be changed to reflect the reality that 1. For most women there is no medical need for a mastectomy. 2. The new breasts will be nothing like a real breast.
The women I met through breast cancer treatment all tell the types of stories here or worse. Not only can they not feel their breasts which is devastating but they often need to go back again and again to fix problems in their new breasts. Infected sites and other failures of surgery are expensive, time consuming ,and depressing.
Women have essentially been lied to about what life will be like after a mastectomy. The BEST a woman can hope for are breasts that look ok to others but that do nothing for her.
The medical release form and the informed consent discussions prior to mastectomies needs to be changed to reflect the reality that 1. For most women there is no medical need for a mastectomy. 2. The new breasts will be nothing like a real breast.
86
The large clinical trial you are referencing is likely the one that showed a survival advantage with lumpectomy rather than mastectomy. The survival advantage may be the result of radiation therapy sterlizing more cancer cells in the region of the breast than surgery can remove. So, you get to keep your breast and nipple sensation while perhaps having a survival advantage. Now, not all breast cancer patients are candidates for lumpectomy, but many women who choose mastectomy because they falsely believe that would give them the greatest survival advantage, are candidates for lumpectomy.
3
I respectfully disagree. While my 'breasts,' created from my own body fat, may have lost sensation, they feel warm and real. And it means I do not have to relive the nightmare of diagnosis, surgery and treatment every time I look in the mirror. Do not discount the psychological value of reconstruction. I admire women strong enough to stay flat but it has its own special challenges. Its an individual decision, each case poses a different challenge for surgeons. Its up to us to get the facts, and make a choice that's right for us. I formation is easily found online.
2
I hope you will be more cautious about giving sweeping and misleading medical advice such as "For most women there is no medical need for mastectomy." Whether or not mastectomy is the correct choice in a given case is a complicated medical question. The specific type/subtype of cancer, family history, location of the cancer, degree to which it has spread and many other factors affect the final decision. The fact that YOU didn't need a mastectomy does not mean that others do not. You also equate mastectomies and reconstruction; having a mastectomy is a decision separate from whether or not to have a reconstruction. Stick with what you know about, which is your own experience.
12
The answer to an earlier letter is that the original mastectomy causes the numbness, not the reconstruction, as this article implies. If a woman chooses not to undergo reconstruction, her chest will still be numb. Millions of woman receive implants each year during elective breast augmentations, and they retain feeling in their breasts and nipples.
45
The impact of numbness is greater if you have tissue expanders and then implants, enlarging the amount of numb chest area.
FWIW I had a bilateral mastectomy with no reconstruction and have numbness only in one axilla where some nodes were removed. The front flat chest all has sensation. However, sweat glands are removed too with a mastectomy and node dissection. One side doesn't sweat any more, and there's lots more perspiration on the scalp and forehead, leading to chronically irritated eyes. I have no idea if this is the general experience or not. But it is better than burns or a pain syndrome or watching someone try to arouse me by caressing my implants. How weird that would be.
FWIW I had a bilateral mastectomy with no reconstruction and have numbness only in one axilla where some nodes were removed. The front flat chest all has sensation. However, sweat glands are removed too with a mastectomy and node dissection. One side doesn't sweat any more, and there's lots more perspiration on the scalp and forehead, leading to chronically irritated eyes. I have no idea if this is the general experience or not. But it is better than burns or a pain syndrome or watching someone try to arouse me by caressing my implants. How weird that would be.
2
I didn't have reconstructive surgery after my double mastectomy and I have wonderful sensation throughout my flat chest. I love it when my husband massages my chest during sex or otherwise.
2
Not true. I didn't get reconstruction and can feel everything so the original mastectomy did not cause numbness. Also, the reconstruction requires more substantial surgery and they must pull muscle away from the chest wall to place the implants underneath so it argues that that procedure results in numbness more often.
2
This comment may sound awkward coming from a man, but a) as a physician and b) as a patient, I can relate to the physiology of sensory nerve damage after trauma - which is what any surgery and many forms of trauma effectively are.
I broke my lower leg many years ago and as a result I lost virtually all feeling in the top of my foot for about a decade. After that, the feeling came back and now, almost 40 years later, it is indistinguishable from my other, non-affected, foot. I.e. the feeling has completely recovered. What will determine how fast this happens is the distance the nerves have to regenerate to repopulate the damaged area.
When considering this, I can only advise all women to consider a) the risk of NOT having surgery that could save their lives and b) the - admittedly - somewhat unpleasant drawbacks of the limitations of human physiology and 21st century medicine.
Bottomline: You can't have your cake and eat it! (Nevermind what Boris Johnson says about 'Brexit')
I broke my lower leg many years ago and as a result I lost virtually all feeling in the top of my foot for about a decade. After that, the feeling came back and now, almost 40 years later, it is indistinguishable from my other, non-affected, foot. I.e. the feeling has completely recovered. What will determine how fast this happens is the distance the nerves have to regenerate to repopulate the damaged area.
When considering this, I can only advise all women to consider a) the risk of NOT having surgery that could save their lives and b) the - admittedly - somewhat unpleasant drawbacks of the limitations of human physiology and 21st century medicine.
Bottomline: You can't have your cake and eat it! (Nevermind what Boris Johnson says about 'Brexit')
54
I think you've misunderstood the point of the article. Women aren't trying to have their cake and eat it, they just want to be informed about the realities of a surgery before they have it. Basic stuff.
4
I concur with your comment until : "You can't always have your cake and eat it" .
That does sound insensitive.
That does sound insensitive.
4
I have been reading for decades that even purely cosmetic breast surgeries can lead to partial or total loss of sensation in the breasts and nipples, so I can't understand why these women were taken by surprise. Also, with mastectomies, there may be removal of lymph nodes and nerve damage that can result in loss of sensitivity in the chest area regardless of whether implants were inserted or not.
My mother had double knee replacement surgery at 80, and six years later still complains that she has occasional knee pain although she is active, walks without a cane or walker, and is more active than many women in their 60's. No replacement body part can stop aging, and few surgeries are without risk.
My mother had double knee replacement surgery at 80, and six years later still complains that she has occasional knee pain although she is active, walks without a cane or walker, and is more active than many women in their 60's. No replacement body part can stop aging, and few surgeries are without risk.
63
I totally agree that few surgeries are without risk. I can't think of ANY that are without risk. However, each person needs to understand exactly what the effects will be - you could call them risks, also "unwanted" effects that aren't risks at all but rather certain consequences. People considering procedures don't always know what questions to ask. I know that some medical professionals are wonderful in describing the certain consequences, the likely consequences, and the less likely consequences (risks). All of them need to be wonderful in this area.
2
Any time you cut through skin and tissue there is the potential for nerve damage and lost sensation. When I had abdominal surgery, the area was numb for 2 years. It helps though if Drs. provude this info to patients in non emergent surgery situations.
Do you really assume that because you have been reading for decades about a particular topic others must have been reading the same thing as you? And does their not reading about it really matter if they expected their physicians to fully inform them of potential problems?
Maybe I don't have a 'right' to comment since I am a male. The first thing most humans ask after they receive the news that they have cancer is, "Will my life be saved?" Even that is 'asking for the moon.' But once our life is spared then humans become unreasonable and want what they had.
40 years ago I had my leg amputated and reattached as the result of a pedestrian/auto accident. At the accident a physician nearby was overheard to say, "He will be lucky to make it to the hospital." I remember thinking in the ambulance, I will give up my leg in order to live.
I never expected to be 'whole' again despite the fact that I ran 5 miles after 18 months and routinely rode 25 mile bicycle rides. I have had residual foot drop made tolerable by an orthotic, have had my knee replaced in the reattached leg and have a limp.
I have had a fabulous life and professional career. When we ask physicians and surgeons for the moon and they only give us our lives...we need to learn to be grateful. I am.
40 years ago I had my leg amputated and reattached as the result of a pedestrian/auto accident. At the accident a physician nearby was overheard to say, "He will be lucky to make it to the hospital." I remember thinking in the ambulance, I will give up my leg in order to live.
I never expected to be 'whole' again despite the fact that I ran 5 miles after 18 months and routinely rode 25 mile bicycle rides. I have had residual foot drop made tolerable by an orthotic, have had my knee replaced in the reattached leg and have a limp.
I have had a fabulous life and professional career. When we ask physicians and surgeons for the moon and they only give us our lives...we need to learn to be grateful. I am.
204
Gerald, what a gracious and humbling perspective. Thank you for sharing the life-altering consequences of your leg amputation.
As someone who is not an amputee, I can't imagine what it must be like to lose a part of my body. However, as a woman who has both legs and female breasts, I can tell you that a breast to a woman is imbued with so much more meaning - gendered, sexual, social, biological - that a man cannot begin to comprehend.
Several years ago, I had jaw surgery that left part of my face numb. I guess I should have realized there was that risk, but it was not made explicit to me, and it remains an outrage to me.
Women's bodies are manhandled and manipulated by men nearly all our lives. If I were a grateful cancer survivor trying to make herself whole again, I would be beside myself if my expectations of fully recovering my physical sense of self and womanhood were not carefully managed. The disappointment is one thing, the patronizing oversight is unacceptable.
As someone who is not an amputee, I can't imagine what it must be like to lose a part of my body. However, as a woman who has both legs and female breasts, I can tell you that a breast to a woman is imbued with so much more meaning - gendered, sexual, social, biological - that a man cannot begin to comprehend.
Several years ago, I had jaw surgery that left part of my face numb. I guess I should have realized there was that risk, but it was not made explicit to me, and it remains an outrage to me.
Women's bodies are manhandled and manipulated by men nearly all our lives. If I were a grateful cancer survivor trying to make herself whole again, I would be beside myself if my expectations of fully recovering my physical sense of self and womanhood were not carefully managed. The disappointment is one thing, the patronizing oversight is unacceptable.
2
I appreciate your comments and perspective, Gerald. I had a double mastectomy a few years ago after a breast cancer diagnosis. I have nothing but gratitude for my amazing doctors who, unlike what seems to be represented in this article, made it clear that I would have limited, if any, sensation in my reconstructed breasts. Small price to pay to have the cancer removed IMHO. I now have extremely limited sensation and, guess what? I don't care. I'm alive and grateful, and so is my husband.
1
I am, of course, very grateful to be a 35 year survivor of breast cancer, but I have had intermittent chest pain as the result of the surgery. It would have been nice to know that could happen.
2
What exactly exactly where they expecting. As a prostate cancer survivor I can attest that major surgery has risks. Numbness and loss of functionality are the risk you take in order to survive,
87
risks explained yes. unexplained risks no. No one mentioned to me that taking out lymph nodes would result in lymphedema. It was a big dirty secret.
I think the point is that they weren't told to expect something different from their natural breast. It's a failure of informed consent.
2
Yes, of course, but don't you think women should be informed?
3
It makes it sounds like the doctors are focused on looks rather than what is best for the woman herself. Pathetic, but not surprising.
53
But appearance is what every woman I know who has had a mastectomy worries about! Whether it is how they see themselves or wanting others to see them as "normal" - it IS about appearance. The doctors are giving women what they very badly want.
4
Your user name, in light of your comment, is quite ironic.
Women get reconstruction because looking normal makes them feel better.
So, male doctors aren't insensitive jerks. They're men; they don't think like women. They think "she says she wants to look good," and that's what they're trying to deliver.
They're doing their best.
You can always go to medical school and do better than they are.
Women get reconstruction because looking normal makes them feel better.
So, male doctors aren't insensitive jerks. They're men; they don't think like women. They think "she says she wants to look good," and that's what they're trying to deliver.
They're doing their best.
You can always go to medical school and do better than they are.
5
How about some tolerance for other people's decisions for their own decisions regarding their bodies.
9
I just had this procedure 3 weeks ago, and was informed by multiple doctors about the numbness. So it is definitely not all doctors that don't inform patients of this side effect. And while it is weird, I am mostly grateful that they got all of the cancer and that when I look down at my body I still see something that looks like the breast it replaced.
139
I'm with you! I like my Frankenboob, as I affectionally call it. The numbness will make it easier to tattoo. Imma wear backless tops and dresses rocking into my 70's now.
What no one has said so far is how lousy the belly where the reconstruction fat/blood supply, etc. was harvested feels. Yuck! No feeling from above pubic bone up to sternum - a broad, diamond-shaped dead zone. First, it felt as though my chin were sewn down to my pelvis, now, it feels as though a blob of dead gelatinous matter has been sewn onto the front of my belly. No more delicious stretches, no more bending over and sucking my belly in and up towards my spine under the diaphram with a nice squeeze. Aparently all the folks with tummy tucks know what I'm saying. What a trade off! Glad I did it as a (dubious) perk of staying alive, not only for show. I would have felt really stupid cuz it sucks!
What no one has said so far is how lousy the belly where the reconstruction fat/blood supply, etc. was harvested feels. Yuck! No feeling from above pubic bone up to sternum - a broad, diamond-shaped dead zone. First, it felt as though my chin were sewn down to my pelvis, now, it feels as though a blob of dead gelatinous matter has been sewn onto the front of my belly. No more delicious stretches, no more bending over and sucking my belly in and up towards my spine under the diaphram with a nice squeeze. Aparently all the folks with tummy tucks know what I'm saying. What a trade off! Glad I did it as a (dubious) perk of staying alive, not only for show. I would have felt really stupid cuz it sucks!
3
Base on your experience, it sounds like doctors are finally getting the idea that patients want to know these things. You are lucky if you look down at your body and still see something that looks like a breast. I went through it after a mastectomy in 1982, and it was completely unsatisfactory. It looked nothing like the old one or the remaining one. When the contents leaked and threatened my health I had it removed. I get along just fine with a stick on prosthesis that looks a whole lot more like a breast.
2
I'm six years in, and it all gets better. I'm with you! I'm so glad you are cancer-free!
2
I have always felt is was misleading for doctors to call these procedures "breast reconstructions." We need a new name that will accurately convey to the patient what is being done, what is being promised. This is awful.
51
You're kidding right? The alternative is death from cancer. That choice is a no-brainer for people who have the capability to reason.
5
“Women say the fact that sensation and sexual arousal will not be restored is not made clear.” This sounds like medical malpractice to me. I thought that benefits AND RISKS were supposed to be clearly communicated to patients BEFORE they undergo a treatment, not discovered by the patients themselves afterward.
“Surgeons who use a woman’s own tissue to recreate a breast might tell the patient that it will “feel” like a natural breast, referring to how it feels to someone else, not the woman.”" And this sounds like HUGE male bias. "“We don’t always mean what’s important to the patient,” Dr. Lee said.” So exactly to WHOM is this so-called feeling like a natural breast important??? Unbelievable!
The focus is on the look and feel to OTHER PEOPLE, not the patient. Words cannot begin to describe my complete and utter contempt for and disgust with the medical field. And apparently, over arching misogyny!!!
Women should not just be relieved that they are not alone in the adverse symptoms they experience, but rather they should also be angry, no furious, with their doctors.
And I speak as someone with breast cancer. I personally would not undergo reconstructive surgery; I don’t care how I look, but I DO CARE about how I feel. But I respect that others may come to different conclusions. But they should be allowed to base their treatment decisions on all the facts, not just medical misogynistic fantasy.
“Surgeons who use a woman’s own tissue to recreate a breast might tell the patient that it will “feel” like a natural breast, referring to how it feels to someone else, not the woman.”" And this sounds like HUGE male bias. "“We don’t always mean what’s important to the patient,” Dr. Lee said.” So exactly to WHOM is this so-called feeling like a natural breast important??? Unbelievable!
The focus is on the look and feel to OTHER PEOPLE, not the patient. Words cannot begin to describe my complete and utter contempt for and disgust with the medical field. And apparently, over arching misogyny!!!
Women should not just be relieved that they are not alone in the adverse symptoms they experience, but rather they should also be angry, no furious, with their doctors.
And I speak as someone with breast cancer. I personally would not undergo reconstructive surgery; I don’t care how I look, but I DO CARE about how I feel. But I respect that others may come to different conclusions. But they should be allowed to base their treatment decisions on all the facts, not just medical misogynistic fantasy.
164
What she said. I am angry beyond words. We have to assume our doctors a blind to our best interests. Yes, blind.
2
"Your penis will look and feel like a regular penis (fine print: except it will feel completely numb)." Gee, why would someone have a problem with that?!
3
Read the forms you sign.
I had one mastectomy in 1992 when I was 37 and another one in 1997 when I was 42. I chose to have implants both times. Yes, there was loss of sensitivity. However, I was so grateful to be alive that it did not and still does not matter. It's not as though I had lost a limb, which, I filet would have been far more difficult. I was at the time and still am single. I am 62 years old and having the best sex of my life. The men I have had in my life over the years have been wonderfully generous and helping me to discover others of my upper body that have heightened sensitivity and serve as an erogenous area, perhaps in response to lack of breast/nipple nerves. Fortunately, my libido never wained and my medical doctor has found a non-estrogen compounded prescription has helped tremendously with vaginal dryness. I am so grateful to be here and never felt short changed about loss of sensitivity due to mastectomies.
109
What is the non estrogen compound that helps with vaginal dryness? I have had bilateral mastectomies and have been on AIs. Thanks for the information so that I can provide that to my doctor.
3
I remember all the mastectomies in the 1970's before lumpectomies were common and how mutilated these women felt. So I have been concerned about the recent rise in the procedure even with reconstruction. This article is alarming because it seems to me that the medical community is "selling" reconstructions without clearly outlining the negative and using celebrities like Angelina Jolie as examples. I have heard from friends about their new breasts that have pain or numbness, constricted breathing, uneven results. I hope this article helps women explore all their options and become truly informed before they make this very life altering choice.
40
Great article. Very good information. You come out with bigger, better looking boobs, but they have no sensation---or worse, extreme pain.
There should be a legal procedure where patients are completely informed of these risks prior to surgery. I wonder, how does a woman's chest feel when she does NOT get reconstruction?
it's good to know that this is an issue which is a known problem and can be researched.
There should be a legal procedure where patients are completely informed of these risks prior to surgery. I wonder, how does a woman's chest feel when she does NOT get reconstruction?
it's good to know that this is an issue which is a known problem and can be researched.
25
There is already a legal procedure for informed consent in every licensed hopital or qualified doctor's surgical suite. Read before you sign!
4
You can still have the same numbness with just a mastectomy.
4
anon,
In fact, you do (or would). The numbness comes from the damage to the nerves that were cut out during the mastectomy, most likely NOT during the reconstructive phase.
In fact, you do (or would). The numbness comes from the damage to the nerves that were cut out during the mastectomy, most likely NOT during the reconstructive phase.
I read this and my immediate reaction was... Duh.
When you cut through nerves there will be numbness. I don't believe these women weren't warned. I bet if they read through consent forms they signed before surgery there will be a warning about possible local numbness at the site of the surgery. It's pretty basic stuff.
Now if they read that consent form is another matter, or if even the doctor actually warned them of such an effect.
When you cut through nerves there will be numbness. I don't believe these women weren't warned. I bet if they read through consent forms they signed before surgery there will be a warning about possible local numbness at the site of the surgery. It's pretty basic stuff.
Now if they read that consent form is another matter, or if even the doctor actually warned them of such an effect.
37
The reality is that few people take the time to read the consent forms they sign....having cancer is so traumatic already, and they just want it to be over.
I had breast reduction surgery, 25 years ago and while I am NOT saying it is anything this dramatic or traumatic...it was major surgery and it cut nerves, especially around the nipple, and I never had a return of full sensitivity. However, my doctors DID explain this to me, and that different women may have different degrees of loss of sensation -- from full loss to very minor loss -- and that time does return some sensation, but probably not close to all.
And I went into it KNOWING it was a trade-off and I was willing to make that sacrifice to be more comfortable and lose the neck & back pain.
I know if I had had cancer....this would be a "no-brainer". I am not sure what they think the alternatives were? after a mastectomy, you lose sensation too! and your body is very different and will never feel exactly the same.
I had breast reduction surgery, 25 years ago and while I am NOT saying it is anything this dramatic or traumatic...it was major surgery and it cut nerves, especially around the nipple, and I never had a return of full sensitivity. However, my doctors DID explain this to me, and that different women may have different degrees of loss of sensation -- from full loss to very minor loss -- and that time does return some sensation, but probably not close to all.
And I went into it KNOWING it was a trade-off and I was willing to make that sacrifice to be more comfortable and lose the neck & back pain.
I know if I had had cancer....this would be a "no-brainer". I am not sure what they think the alternatives were? after a mastectomy, you lose sensation too! and your body is very different and will never feel exactly the same.
46
Aristotle Gluteus Maximus, I don't believe that these possible adverse outcomes are in fact communicated to women by their doctors -- and these doctors should not be allowed to shift that responsibility off onto a consent form. Consent forms are very generic, and don't actually apply to an individual patient's particular situation. Moreover, I have to tell you, consent is not really "informed" when faced by a cancer diagnosis (or any devastating diagnosis), due to the emotional reactions -- and it's certainly not "informed" by a consent form written in very fine print. You sound as though you are blaming the patients for not knowing about risks. You are wrong.
4
This is exactly right. I can confirm the truth both as a former hospital executive and as a person with severe post mastectomy pain.
I was given no info on risks of chronic pain. My attorney reviewed the consent form and affirmed the obvious, that it did not inform of this well known risk.
I am changing the emphasis of this discussion from sensation to post surgical pain. There is still an opportunity for the NYT to do a corollary article on the need to better inform about pain. Times could make a difference here, please.
I was given no info on risks of chronic pain. My attorney reviewed the consent form and affirmed the obvious, that it did not inform of this well known risk.
I am changing the emphasis of this discussion from sensation to post surgical pain. There is still an opportunity for the NYT to do a corollary article on the need to better inform about pain. Times could make a difference here, please.
2
There is lots of money to be made by such surgeries. Maybe the NYT can research the reliability of these so-called genetic susceptibility tests.
Too bad people can't see how surgeons really operate and how brutal and aggressive they are when cutting and shoving tissue around when someone is under anesthesia. The retractors alone cause nerve damage.
Too bad people can't see how surgeons really operate and how brutal and aggressive they are when cutting and shoving tissue around when someone is under anesthesia. The retractors alone cause nerve damage.
28
That is an astonishingly ignorant and ungrateful response.
Yes, surgery looks ugly but it saves lives.
Do you refuse EYE surgery if you have (say) cataracts? Eye surgery is about as gross and upsetting as anything you've ever seen. But it saves people from blindness.
These surgeries SAVE WOMEN from CANCER....and give them a reasonably good approximation of a normal appearance. Nobody ever claimed it would give them their old breasts back -- NOBODY CAN DO THAT. Doctors are not magicians or gods. They do the best they can. Many do absolutely miraculous work. It is very churlish to be so ungrateful for something so amazing.
Yes, surgery looks ugly but it saves lives.
Do you refuse EYE surgery if you have (say) cataracts? Eye surgery is about as gross and upsetting as anything you've ever seen. But it saves people from blindness.
These surgeries SAVE WOMEN from CANCER....and give them a reasonably good approximation of a normal appearance. Nobody ever claimed it would give them their old breasts back -- NOBODY CAN DO THAT. Doctors are not magicians or gods. They do the best they can. Many do absolutely miraculous work. It is very churlish to be so ungrateful for something so amazing.
79
This article mentions people who have mastectomies who do not have cancer. They just have a so-called genetic marker that indicates they may have a predisposition to get breast cancer. Such genetic tests are sufficient reason for these people to have elective "preventive" surgery. There is no actual proof that it saves lives. It's a gamble against statistics. That is a different situation from a person who actually has a diagnosis of breast cancer.
2
I think you'd be surprised how many women are told something like, "It'll be as good as new!" So yes, women do find in many cases that they didn't get good information and the negative effects were minimized or omitted from the discussion.
7
Frankly I'm shocked these women expected to have normal feelings in what are essentially "fake breasts". My left breast & 20 lymph nodes were removed 15 yrs ago and my armpit is still numb but I am cancer free. I was in my early 40s so understand their adjustment to a breast lacking in feeling. It is not normal but it is a new normal that comes with navigating through their cancer journey & a return to wellness.
84
I miss my breasts, terribly. I don't miss the cancer, like at all!
I had 6 surgeries in total, my nipples never survived - I can't feel a thing, numb to the bone. But I am glad am alive - but I miss having sex without them! I am now on the quest to try and figure out how to have sex without my breast sensations. It's all a matter of finding solutions...
Funny, my boobs do bump into people all the time, I have no chest spacial awareness.
It's been 3 years (woo hoo).
My suggestion; if your going to reconstruct get small ones - and know they won't be the same ever again. And yes surgery sucks, liposuction hurts, I have nerve damage and pain, I bump into people, and I can't figure out sex without them (YET). But, I am alive - and that's all we really got! We have to stick together and thrive, not just survive. Love to all