My high school girlfriend for two and a half years broke up with me after the first year of college because my mother told her we shouldn’t be together. Annie flunked out of college after spending the year knitting me a sweater.
I didn’t know this at the time nor did I realize my mother was mentally ill with bipolar disorder just as her mother had been.
Annie went on to marry an architect, finish college and become a photographer. After having one son she was diagnosed with breast cancer at 44 years old and died one year later.
After I found out what my mother had done I vowed to never speak to her again.
Annie was the love of my life!
12
The diagnosis of ductal carcinoma in situ (DCIS) is probably a classic example of over diagnosis.
Any woman who has received such a diagnosis might want to ask the following questions:
1- Do I really have breast cancer? Answer: No one really knows but in most cases, "probably not".
2- Why has there been such a large increase in the diagnosis of DCIS over the years. Answer: Because there has been a concurrent increase in the incidence of mammography and DCIS is, in large measure, found on mammograms.
3- Will my DCIS progress to invasive breast cancer? For the vast majority of women who receive the prescribed treatment (and many who do not), NO; it will not progress.
4- Which cases of DCIS have the propensity to progress to frank invasive breast cancer? Answer: That is the $64,000. question and one for which there is no present answer.
Suffice it to say, a large majority of women will live their lives without any problems related to that diagnosis.
12
DCIS is not cancer ( that’s why it’s “graded” as a zero ). Despite what the author writes, a tumor only becomes malignant once it has invaded the breast tissue. I can certainly understand the fright the author must have experienced when she first learned of her diagnosis. Unfortunately, given that she is misinformed, she is unnecessarily frightening other women.
I am a two-plus year survivor of what is called Triple Negative Breast Cancer, one of the most aggressive forms of breast cancer. So, I probably know whereof I speak.
10
I had put off my mammogram screening, but kept hearing the October reminders in 2012. I knew from those commercials I had better go in. I too was stage 0 DCIS. I had a double mastectomy and reconstruction. No breast cancer in my family, but my brother and father died from lung cancer. Also, I knew women who had lumpectomies and the cancer returned.
After my surgery, the surgeon said I did the right thing because he found another tumor near my sternum. I am happy with my decision. I have had ongoing shoulder problems because of scar tissue however. I feel it is a personal decision. God be with all of you. My heart goes out to all of you.
2
After postponing my mammogram several times due to other, more pressing medical problems, it is now scheduled for Monday and I intend to go. I've had several "suspicious" areas appear on previous mammograms, but ultrasound and a biopsy proved them to be benign.
I've already been through cancer - recurrent malignant melanoma - twice. The first diagnosis was not a big surprise, as I had a mole on my chest which enlarged and had irregular edges. Surgery removed it along with a fairly large area of flesh surrounding it. A sentinel node test found no evidence that it had spread to my lymph nodes.
It was the second diagnosis, less than two years later, that sent me down into the chair behind me when the doctor informed me that it was Stage 4 and needed to be treated right away. The cancer was in my lymph nodes on the same side as the first cancer had been.
Several surgeries and 9-1/2 months of Interferon followed. I lost my health, my hair, my life savings and my job. But now, 17 years later, I'm still in remission. I'm extremely grateful for the doctors, technical staff, office personnel and all those who helped me to overcome this horrible disease.
And I'm vigilant in getting the tests available to diagnose cancer early. But I still wonder why and how my second cancer came so quickly after the first one and wasn't revealed by the test. (It was the surgeon, performing my annual follow up, who found it by touch.) I doubt I'll ever know if I could have prevented it.
1
OK time for women and men to face the reality of cancer. With PFOS-Teflon being found in water everywhere and yes even in breast milk in remote parts of the planet, we are all candidates for breast cancer and testicular cancer. They are now putting Teflon in the tobacco in cigarettes as a fire retardant so they will go out if left unattended.So your house won't burn down but you will for sure die of cancer, not from tar or nicotine tho. All those cig filters loaded with teflon just floating on the lakes and oceans to affect us all.
DuPont-Monsanto-Dow whatever there name is now, should be paying for ALL the healthcare in this country and the world. It is time we stop playing whack-a-moe with the poisoners of the species just for a gold brick. Just sayin.
6
We had to deal with my wife breast cancer,stage 1, both breasts 15 years apart.Thanks to the wonderful team at Sloan Kettering(that is especially you, Dr. Van Zee) she is fully recovered even if there is some discomfort. It's a long and tedious process and family and friends support is crucial.Hang in there young lady.You'll be fine
1
I enjoyed the note of humor about the experience of ultrasound-guided needle biopsy, where you lie on a table with your breasts hanging through two holes on the table. Yes, it’s just like a car up on the rack for service! What an apt analogy. I found it hilarious at the time, but maybe the one 57 cent Xanax I took beforehand contributed to that.
2
I just went through the surreal year that it takes to be treated for cancer and come back to normal. I was older (57) but have no family history and had a total of 6 years of breastfeeding in my history so I felt I would never get BC. Wrong! TNBC, stage 3. Luckily I achieved a a complete pathological response to chemo; then Lumpectomy and radiation.
A few points--
1. Mammograms do NOT suffice for fast moving/ high grade/ virulent cancers or very dense breasts. Lobular carcinoma is one form of BC very hard to pick up in imaging. Self exams are IMPORTANT. I found my lump between mammograms. (Lie down, put your *arm above your head* and use opposite hand.)
2. The "terrain" of the body is IMPORTANT. There are cancer-friendly conditions such as inflammation, diabetes, etc that we cause with poor diet, lack of proper nutrients, not enough exercise etc. I saw an integrative oncologist for a 2nd opinion and he totally rejiggered my diet, supplements, and other routines. He wanted to help me withstand chemo.
3. Toxins, pollutants, preservatives and "corporate" foods are very cancer-friendly.
4. I did MANY complimentary therapies: high dose C by IV, hyperbaric oxygen, hyperthermia, periodic fasting. Most oncologists do not even mention these approaches, but they all help boost the efficacy f chemo.
1
Wonderful article. Just wanted to point out that BIRADS does not refer to breast density. It refers to the degree of suspicion of cancer, 0 to 6 based on imaging. Breast density is on a scale of 1 (least dense) to 4 (most dense). With many people reading their own mammogram reports it's important nto to sew confusion regarding this terminology.
6
Thanks for sharing your journey. As a woman whose maternal grandmother and mother had breast cancer, I worry about my chances. I am annoyed that after each annual mammogram I get a letter saying they found nothing but that I have very dense breasts. How is that helpful for me to know? I ask my doctor and get a shrug. "Some women's breasts are just more dense so it's harder to detect anything." I'm not seeing any value of the dense breast report.
2
That's my story too. My first thought was "What? that's crazy! I don't have any breast cancer in my family." Mine was in my milk ducts and at stage 0 so I was incredibly lucky to be able to find it so early through a mammogram. I remember Angelina Joli boldly deciding to have a double mastectomy with reconstruction because she had a high probability of getting breast cancer. She was so frank about it I didn't hesitate to go for the mastectomy too because I didn't want to have to go through chemo & radiation. I'm 3 years in and am going to get a beautiful tattoo on my reconstructed breast when I pass the five-year mark so there's something I can smile about when I see myself in the mirror every morning.
2
About three years ago I was diagnosed with stage 1 breast cancer, which is a “real” cancer —unlike DCIS. I had the small tumor extracted in an operation, got radiation during the procedure, and was told that no nodules were affected. Later I took issue with the treatment I was prescribed after the operation.
Aromatase inhibitors are now the standard treatment for breast cancer, especially for post-menopausal women. It functions by inhibiting a crucial path in the synthesis of estrogen, the hormone that is known for enhancing the growth of most breast cancer tumors.
Recent research has shown, however, that aromatase inhibitors can impair the memory of women being treated for breast cancer. This is most likely due to the inhibition of estrogen production in the brain cells called "astrocytes". Yes: estrogen is also synthetized in the brain, not only in the ovaries.
My point is that the use of aromatase inhibitors for stage 1 BC may also be a case of over-treatment, considering the side-effects involved. Without the drug, my chances of recurrence are equal to that of any other women at my age. I decided to stop taking it.
Two years ago I switched to a plant-based diet after reading about the association between diet and cancer. The four oncologists I consulted did not told me about this (see https://nutritionfacts.org/)
I'm confident with my treatment decisions. I can only hope that most oncologists can feel as confident regarding their recommendations to patients.
2
Jenny
This is your story and is like many others. I am working with an imaging team that for over 25 years have been finding ways for earlier detection of breast cancer. We have seen breast density as a primary risk factor for people your age (35 to 50).
Mammography can see DCIS, which is calcifications, precancerous Stage 0, but ilumps and bumps in dense tissue are hidden and not visible w mammo. You experienced that. Knowing you have dense tissue (from your mammogram), ultrasound of the both breasts could have been the next step.
I hope for the best to you -- and keep watching sponge bob and reading scifi
Reading the comments is a master class on the problems we have with the medical system in this country as well as the hopelessness of finding a solution that will not be disruptive.
DCIS was originally thought to be an early cancer because of the morphology of the cells and its association in some cases with intraductal carcinoma. As diagnostic procedures became more refined, it was possible to diagnose it without it accompanying an actual cancer. It was assumed to be an early cancer. This allowed the medical profession to diagnose and treat a nonentity that had no adverse health consequences as an early cancer. That treatments 'saved' the life of the patient and in the end made everyone feel good. It also was good business.
Now comes the kicker, further data shows that it is not associated with shortened life expectancy, it is not a precancer. What to do with it and how to communicate this to the public. Difficult problem.
Will the medical profession admit they have been wrong all these years. Who pays for this? What happens to all the resources presently going to this 'illness'?
More importantly, even though the death rate is the same in women with or without DCIS, some do die of breast cancer. If advised they do not have a fatal illness and end up with a breast cancer will they sue the bejesus out of the professiionals involved?
You bet they will.
This is not the only 'disease' with this social impact.
Good luck.
6
I agree: after hearing those words I nearly fainted. At 37, I went for a routine checkup to my gynecologist and when he sat down to chat post exam I was expecting to leave shortly. Then came those words: “you have a lump in your breast. I’m sending you to get a mammogram in an hour.” A lumpectomy, radiation and a double mastectomy have left me cancer free.
There is no history of breast cancer in my family. None.
It’s been three years and I still:
A.) Can’t believe I had cancer.
B.) Hate looking at the massive scars across each breast.
C.) Daily live with the fear it will return.
But.... my friends were by my side the whole time and something interesting happened as a result of such trauma: I learned to stop and smell the roses. I don’t take anything for granted these days and feel so lucky to have such wonderful friends.
Thank you for sharing your story.
82
@Victoria Browning Wyeth
I was 37. My sister had breast cancer at 55 and she urged me to have my first mammogram as soon as possible. I had a tiny hard 'something' right by my nipple. Bad news, mastectomy. Good news....they found a second independent primary site deep in the supporting breast tissue. I would never have felt it until it was too late. Best news....I am now 77 and still cancer free! Forty extra years and counting. That's pretty darn good. Early detection saved my life.
65
Thank you for putting into words what was my same experience a year ago. Same diagnosis but I chose a mastectomy because of my own “lack of tissue.” I’m grateful I ignored the advice of waiting to have a mammogram and have shouted from the rooftops to all my friends that they shouldn’t wait either.
21
I also have dense breasts and was diagnosed in March 2018 with Stage 2A breast cancer in the ducts and lobules.
It was discovered as an area of architectural distortion - meaning the lines of the breast were different that my last mammogram. THERE WAS NO LUMP.
If I wasn't vigilant about getting mammograms, who knows how far it had spread - there were already some cancer cells in my sentinel lymph node.
Early detection allowed me to live on, and the Oncotype test allowed me to skip chemo. Radiation and now Tamoxifen are not fun experiences, but I'm grateful every day that modern medicine and technology saved my life.
14
Reading the author's account brought vivid memories of my own experience. Feeling like a car up on a lift for my first biopsy. Getting the call at work about the results. TNBC stage II. No family history. Just turned 42 (had baseline at 35 then first screening mammogram at 40. No family history or issues so plan was every 2 years until age 50.). Having a lumpectomy + axillary node dissection, chemo and radiation. N & V that wouldn't stop. Bone-numbing fatigue. Repeating all that 7 years later with a new primary in the other breast. TNBC Stage II again. That time the chemo left me with neuropathy. Hair loss again too. And horrendous fatigue. A few years ago, with expanded genetic testing, we found out that I have a mutation in a relatively newly discovered gene -- PALB2 (in the BRCA2 pathway). I am thankful for the well-informed, compassionate physicians both times -- surgeon, medical oncologist and radiation oncologist. And friends, co-workers and family who were so supportive. I know that I am lucky to still be here. Though we are forever linked by a diagnosis of cancer, our journeys are our own.
2
At 74 I was diagnosed by my dermatologist PA (who I’m going to see today) with suspicion of Paget’s Disease which is a form of DCIS. She did a needle biopsy(ouch) which came back positive. Went to a breast surgeon for further testing and treatment. When given a choice of mastectomy and no follow up or lumpectomy and 6 weeks radiation I opted for the full mastectomy. Lymph nodes were clear...now almost 2 years later I’m healthy and active and have no regrets. I’ve avoided allopathic medicine most of my life using traditional providers for diagnosis and figuring out natural tx except when it’s something I don’t want to take a risk with. Had a close friend die of treatable cervical cancer because she would only do alternative tx. Happy with my choices...and my new perky boob. And yes I recognized I didn’t have cancer...
1
Please see the article from the New England Journal of Medicine by Kalager et al, NEJM 2010; 363 (13): 1203-1210. Screening mammography appears to decrease breast cancer mortality by 2%, or 2.4 deaths for every 100,000 screened person years. I am a retired radiologist who lived through the history of screening mammography. My advice: just try to enjoy your life.
13
Nothing but good wishes for the author. But, DCIS is not cancer. It is cells who are thinking about becoming cancer but will never kill you. Many doctors want to change the name of it precisely because of the anxiety associated with “cancer”. The more we image, the more we find and often to no benefit to the patient.
15
I was diagnosed with DCIS 10 years ago
I was so frightened,
I opted to have a bilateral mastectomy.
I chose a female surgeon because I mistakenly thought a women would provide more supportive services.
I unfortunately had moved to a new city and was basically alone.
Stunned by the diagnosis,
I failed to do due diligence, which had been my normal reaction to trauma in the past.
I appreciate this story,
I remember taking my car through a car wash
Shortly after the surgery,
And telling the young innocent car wash attendant
That I just had breast cancer and a mastectomy
I started crying
He was very tender and kind,
And said yes....
His mother had just gone through this.
I received this kindness with utmost gratitude
After heart cracking open events,
One feels intensely
The benevolence of tenderness and
The oneness
That we all are.
It can make you cry.
1
I do not wish to discount any aspect of your experience. It was real, and the emotions and fears were yours. But like other commenters here, and as someone who got the call that I had aggressive stage 2 breast cancer when I was 39, there is a part of me that balks at your suggestion that your diagnosis was the same as mine. My tumor — just like all true breast cancer tumors — was invasive. Left untouched and untreated, it would eventually kill me. That is not the case with DCIS. Yes DCIS could eventually morph into invasive breast cancer. But it might not. Still frightening to be sure — anything that puts you a degree of separation away from cancer is life-changing. But it is not the same thing as a true cancer diagnosis. I’m sorry it’s just not. My wish for you is that you never experience the difference between those two scenarios firsthand.
20
@LM Thank you! I had just turned 39 when i got the IDC diagnosis (stage 2b). Even with those who are diagnosed with invasive breast cancer, there's a distinct difference for those who are considered young vs the post-menopausal cohort. Only 4% of women under are 40 are diagnosed. For us, it's harder to detect, often more aggressive, has a greater impact on life (finances, having children, body image) and treatment option are more limited. I don't want to minimize someone's experience, but i fully agree - It's just not the same.
3
Awesome article that captures the shock of hearing the diagnosis. I, too, was only 41 when diagnosed. I was in the best health of my life and just finished a half marathon. I have zero family history and have had mammograms since age 35 due to having a progressive female physician. I was diagnosed with DCIS-Stage 3-without feeling any lump in the itty bitty left breast. It’s been quite the ride but I have been surrounded with an amazing medical team. It’s been 7 years since chemo, radiation and a lumpectomy that eventually led to a bilateral mastectomy. I feel blessed that this was caught before it metastasized somewhere else. Thanks for representing our warrior club!
3
BC at 41 -- ask for gene studies. The new panels are 40+ tests, not just BRCA 1 & 2.
Other mutations raise risk of cancer, including BC.
I am in the club you never want to be in. I made my decisions based on genetic testing (-) and family history (+).
My surgeon and oncologist wanted me to do the standard treatment for DCIS/stage 0. While there are now studies looking at doing nothing which is called watchful waiting,
each women must make their own, educated decision.
I made mine.
Very happy 4 years and 11 month later.
Wishing you all the best health.
2
This multiple cancer fellow young survivor wishes you well. I wish for your sake that they would emphasize that stage 0 is, in fact, pre-cancer. One comment, however, is that I really, really wish that people would stop reducing chemotherapy (which is systemic, i.e. whole body, vs radiation, which is localized treatment (I have had both)), down to hair loss. Hair loss is the most visible but LEAST bad aspect of chemo. Beyond the immediate suffering of chemo (nausea, pain, weakness etc), I now have permanent neuropathy, heart damage, greatly shrunken gums (so dental implications), accelerated bone loss, my nails split, then peeled off and are now paper thin. I could not care less about my hair... which is now also a bit thin and strange. My oncologist told me that post-chemo radiation would feel like a little daily nap in comparison, despite the burn, and he was right. This is not a competitive suffering, I am a former athlete too, did everything right health-wise and mourn my former life, desperately wish it was not what it is now reduced to. But please be aware that most chemo patients do an inward eye roll when people reduce the experience to hair loss.
23
I am surprised to see this article - it's as if all the revelations in recent years about over diagnosis in medical practice had never happened. Mammograms, prostate cancer tests, even testing for strep throat, have all been found to often be unnecessary and overused. The idea is that if you look for problems, you'll find them. But there is a big trade off - and this account details the trade-off. Worry, pain, expense, long-term side-effects from surgery - for zero stage cancer? It's a very personal decision, of course. But doing nothing is as legitimate, if we are informed and willing to take responsibility for our health. Life is full of risk, and medicine is an evolving science.
33
@Lily completely agree!! Also radiation and chemo for DCIS is like killing a fly with an atomic bomb.
7
The great divide on this thread - as is always true, I suppose, with comment strings about illness - is between those who have been diagnosed v those who haven't. My own BC diagnosis (stage 1, grade 2) was just under two years ago. I am extremely thankful for my wonderful doctors and nurses and for the excellent treatment I received, as well as for the fact that my cancer was diagnosed early, via a routine mammogram. What I have absolutely no patience for is people who have not experienced a cancer diagnosis who nevertheless would smugly second-guess the choices made by people who have. Unless it happens to you, you can't possibly know what decision you would make.
30
Six years ago this week, I had a very similar experience. I went in for my annual mammogram. A few days later, I had a phone call from my doctor, just as I was getting ready to go into a meeting at work. They found a suspicious spot on my mammogram when they compared it to previous mammograms. They recommended an MRI since I have very dense breasts but nothing urgent. I have no family history of breast cancer and no outward signs of a lump or tenderness. After the MRI, I had a biopsy which found Ductal In Situ Carcinoma, Stage 0. I had similar treatment as that described in the article. Even an early stage cancer diagnosis can have a profound impact on your life. At age 62, I was in a very stressful job and was toying with the idea of retirement in a couple of years. My fiancé and I were thinking about getting married in a few years. During my cancer treatment, he was diagnosed with stage 2 prostate cancer with a recommendation of surgery. After this, we decided not to wait for a happier life. I retired as soon as I recovered from surgery. My fiancé and I were married in a civil ceremony at the courthouse. Then, I started planning a big blowout destination wedding to celebrate life with my family and friends. Six years later, we are both healthy and determined to live our best life.
37
Susan Sontag wrote (and I may be paraphrasing) that cancer is the disease that doesn't knock before it enters. Accepting this has made it easier for me to deal with my own breast cancer that has upended my previously healthy life. I chose to answer the door and reluctantly welcomed the spectrum of unpleasant treatments that hopefully will minimize the prospect that this uninvited guest will return. Breast cancer is a mean disease - seek good care, get all the facts, weigh the benefits and risks of treatment and make the most reasonable decision that you can. I wish the best for all my breast cancer sisters.
14
@Kate Well said. I wish the best for you as well. Reading the author's account brought vivid memories of my own experience. Feeling like a car up on a lift for my first biopsy. Getting the call at work about the results. TNBC stage II. No family history. Just turned 42 (had baseline at 35 then first screening mammogram at 40. No family history or issues so plan was every 2 years until age 50.). Having a lumpectomy + axillary node dissection, chemo and radiation. N & V that wouldn't stop. Bone-numbing fatigue. Repeating all that 7 years later with a new primary in the other breast. TNBC Stage II again. That time the chemo left me with neuropathy. Hair loss again too. And horrendous fatigue. A few years ago, with expanded genetic testing, we found out that I have a mutation in a relatively newly discovered gene -- PALB2 (in the BRCA@ pathway). I am thankful for the well-informed, compassionate physicians both times -- surgeon, medical oncologist and radiation oncologist. And friends, co-workers and family who were so supportive. I know that I am lucky to still be here. Though we are forever linked by diagnosis, our journeys are our own.
5
We all have expectations, even when we suspect the worst. And nothing can ever prepare you for the news when it involves the dreaded C word.
I felt a painful lump in my breast in 2012, when I was in my mid 30s, that I went through all the medical rigamarole for - mammogram, needle biopsy, surgical biopsy, follow-up mammogram. All while holding my own individual health insurance plan because I was a freelancer. Anyway, it all came back clean. Except that pesky lump persisted. At that point I thought maybe it was scar tissue from the first surgical biopsy. I certainly didn't want to re-open that can of worms. It was my gyno in 2015, who was concerned and wanted to have it re-checked. Reluctantly, I went along. After the second surgical biopsy, they found it. Invasive cancer. I suspect it had been there in 2012 also. I guess one good thing was that I had better insurance through an employer by that point, but I really wish they could've caught it sooner.
I have dense breasts so I know it can be a challenge to see things in imaging and doing needle biopsies is next to impossible. I had no idea it was now a law to disclose the density issue to people.
When I went for my mastectomy they didn't give me the option to do a double so now I have to go every year for this mammography torture all the while knowing it could be missing something very serious.
7
Media reporting makes it sound that a woman's risk of developing breast cancer is way higher if she has a family history of it. This is true if she carries the BRCA gene mutation. Overall though, breast cancer heritability is about 10%. Heritability is a highly technical term, but in plain English, 10% means a very high proportion of women who develop breast cancer will have no family history of it at all. Thus it is wise to get regular mammograms regardless of your family history of breast cancer.
9
My wife was diagnosed with DCIS at 58 the day after I lost my job (thank you to someone in DC for COBRA!). Lumpectomy. Didn't get "good margins" which meant a second lumpectomy. Seriously, a surgeon would rather perform two surgeries rather than take a millimeter more flesh out the first time? One wonders at the motivations there. Then came the radiation. As with you, no chemo, so her hair didn't fall out. But there were definitely side effects and still are to this day 8 years later. Thankfully, no recurrence of the cancer. But again, one must wonder about whether DCIS ( IS = in situ, meaning in place) deserves such radical treatment.
11
Congratulations on the happy feeling of finding cancer at it's earliest stage, 100% curable. For now, conservative surgery is the solution. This, even though it has been shown that perhaps 10 to 15% of women who undergo an autopsy are found to have DCIS, a feature suggesting that it could have been just followed without surgery; but we are not there yet, as we are missing the link to guide us who is not immune to develop an invasive malignancy...and the suffering plus early death as a result. Thanks for sharing your story...and making it truly, palpably, human.
4
Would this perhaps fall into the category of overdiagnosis? Don't the studies say that the rate of death from breast cancer has not changed even with all the pink ribbons and screening with mammography? The information is VERY CONFUSING to say the least. I went in for an MRI of my spine (back pain from a lifting injury) and I came out with a diagnosis of papillary thyroid cancer after they found some nodules and did about 33 needle biopsies. An 'incidental finding'. I was getting ready to have my thyroid removed when I did a Google search and found out that Sloan Kettering and other hospitals were not always removing these 'cancers' because most of them never grew. They had done autopsy studies and realized that many people had these 'cancers' and died of old age. So.
I found out that there are studies called 'Active Surveillance' where they sonogram your neck twice a year to make sure it's not growing and you hopefully never have another problem. Apparently there are similar breast 'cancers'. It is all very confusing. Because of my online research I don't feel that I have 'cancer'. My sense is that I have some abnormal cells and the medical profession hasn't figured out a better classification so to them it is 'cancer'.
So I still have my precious thyroid and I am still confused about what is overdiagnosis and what is not. Reading a book about overdiagnosis by H. Gilbert Welch was helpful.
31
My incidental cancer (DCIS) had completely filled my milk ducts and would have metastasized in short order without the “over-diagnosis”. I’m incredibly happy to be among the living and recommend others take the complete diagnostic risk
3
In the U.S. today, we (meaning ordinary, average people) are little cogs in a massive healthcare-industrial complex whose ultimate goal is revenue and profit. Similar to the military-industrial complex, the healthcare industry plays on fear. Everyone has to decide for themselves how much, and when, to submit to treatment, but, at the least, we need to ask a lot more questions of our doctors, insurance companies, and clinic/hospital billing departments, before going down the minefield-laden path of cancer treatment. And remember, no doctor can, or will, tell you upfront how much treatment will cost—because they don’t know either. What is wrong with that? Everything.
14
Eleven years ago I experienced a summer of marathon breast diagnosis at a major university medical center in Los Angeles. A screening mammogram revealed a suspicious lesion. Follow up mammography exonerated that one but found another. In total five lesions were explored, bouncing back and forth between breasts, with six and a half mammograms, two ultrasounds, an MRI with contrast, and finally a biopsy. When the biopsy was negative, I thought we were done: but no; two weeks later I got a call referring me to a surgeon, “because we didn’t sample all the cells.”
Coincidentally about this time I began reading data—the first article I saw was in The New York Times—indicating that major longitudinal studies in Switzerland, Montreal and the US had concluded that screening mammography has no statistical effect on death rates. (The Canadian Medical Association wrote, in an editorial in their journal, that if screening mammography “were a drug it would be removed from the market.”) Most of the “cures” were of benign lesions that would never have invaded nor harmed the patient. Carcinoma in situ was cited as a common example of this. The truly invasive lesions apparently grow so fast that the damage is done between routine screenings.
So while the possibility of a routine screening mammogram locating such a cancer in time to stop it is real, the likelihood is nowhere near what we have been led to believe. I never had another mammogram.
19
I have been going for routine mammograms for over ten years, and ever since NYS made it a law to inform women with dense breasts that they have them, I anticipate the letter that is forthcoming. Except this year I got a different letter.
I am now in that awful waiting period between the letter and the diagnostic mammogram and ultrasound, which will happen next week.
Even though I know the odds are in my favor, even though my mother, grandmother, and mother in law have all had breast cancer and survived long term, even though I know that the most likely outcome next week is that I will be annoyed that I had to use my floating holiday for this, I am terrified.
I also have a chronic, incurable neurological disorder that has taken over my life at times. Just when I think I have it under control....
And there we have the lesson.
10
41 doesn't sound early to me. I was 35, no family history, kids were 1 and 3, yada yada yada.
5
"...there’s no history of any of this anywhere in your family." The public has been hooked on the belief that cancer and other diseases must be genetic. The denialism is amazing. Take a look at the 3-5 pounds of what you put into your mouth 3 or more times a day.
5
@JCX Agree. I'd also like to ask women to think about what the term "dense breast tissue" means because it seems this is the new BC scare-buzzword. The official definition seems to hinge on the ratio of fatty tissue or fibrous tissue and it varies according to the so-called expert source. People, ALL breast tissue is dense.
I cannot wait for the day when our smartphones will have digital-thermography scan apps and we can monitor our health ourselves without this interminable scare-mongering.
Please don’t blame the “victims” unless you know for a fact that specific foods are what causes cancer.
4
Very moving, I teared up! Being a mom and nearing 40, I will definitely push for a mammogram!
2
Happy Belated Birthday and may you celebrate many more. And get that deck built..
4
Happy birthday and many many many happy returns
3
“I do not consent” - said the same thing when I was diagnosed with Invasive Ductal Cancer a couple of months ago. If only my consent matter!
1
I am happy you are well!
After a mastectomy, I was told that I did not have cancer, never did. Oh how I wish I was brave enough to refuse after the DCIS
prognosis. This was more than ten years ago when the doctors still laughed at the kind of free will I had.
17
I was diagnosed with breast cancer and went through treatment at 71. It was found during a routine mammogram, also with no cancer in my family. Rather than keep it secret (why?) I told everyone fast: my 5 sisters, my friends, anyone who'd listen to: "Get a mammogram." Their love and support helped me through the fear and discomfort. But more importantly, I got to share an important message with them that may save their lives someday: a cancer-free family doesn't mean cancer won't find you. Something to think about for those of you on Tamoxifen; I'm on anastrozole which has fewer side effects. Ask your oncologist.
6
early detection is key. And 3D mammography is the way to detect. it's a bummer for sure--surgery, maybe more than once, radiology, and if your hormones are involved, chemo. But it can be done and it works ... early stage bc is very common and the protocols for treatment very clear and successful. The worst thing is not to get screened and discover something at a much further stage of development. Moreover, because early stage stuff is so highly treatable, there are a lot of treatment centers and great oncologists outside the major cities.
7
@sw,
Pushing screening mammograms on women is doing an enormous disservice to them. It will not save their lives - studies with over 600,000 participants show no mortality benefit. Pushing screening mammograms just exposes women to the very real risk of overdiagnosis.
2
@sw
Hormone involvement doesn't automatically mean chemo.
1
@KittyKitty7555
It saved my life. I am cured/
It was pushed on me; it was a rational decision to have this annual screening.
I was HR2 positive, it turns out.
The results of medical tests should never be taken for granted. Properly chosen for good reason, every medical test has the possibility, however small, of being positive: cancer screening, HIV testing, prenatal screening, whatever. That's why they are done in the first place! As a physician, I always approach my own personal medical tests with the thought that they could bring news I'd rather not hear -- but with the confidence that knowing is almost always better than not knowing.
4
Thank you for writing this article. I went through DCIS, two lumpectomies and radiation last year at 59, all without telling anyone but my son and my husband. It was excruciating but I felt that the fewer people who knew, the more normal I would feel.
I have since retired from my job and am taking this experience as a wake up call to get off the treadmill and enjoy life. While I had great difficulty tolerating the aromatase inhibitors, I’m now on Tamoxifen, and hopefully I can tolerate that for the next five years.
For those of you who say not to treat this like cancer I ask: how do you do that when all your doctors are at Sloan-Kettering?
For those of us taking it seriously, I say keep fighting!
9
Thank you for sharing your story. I’ve had mammograms because of dense tissue since age 35. I’m 67 and thankfully no problems (one bad mammogram leading to sonogram which showed nothing). My Medicare and supplement are about to get me a abdominal CT scan just to make sure all my internal organs as of now are fine (odd symptoms of late). I pay about $6000 a year for my various insurances, no copays or deductible. I’m lucky.
I’m happy Ms. Rose will be well.
1
DCIS is NOT BREAST CANCER. It is a term that needlessly frightens hundreds of thousands of women each year. We have to come up with a more accurate, and less frightening, term to describe these abnormal, but not cancerous (or even pre-cancerous) cells. Even the treatment of DCIS is controversial.
I do not profess to be an expert, but early mammography in low-risk women seems to result in a disproportionate number of false-positive and/or frightening, yet benign, results.
52
@Famdoc I agree, but with reservations. I was diagnosed with DCIS 4 years ago. I saw this as a warning, but not a reason to jump into "conventional" treatment because cancer by definition is invasive, no? I took a natural approach with diet and supplements, but an MRI six months later revealed a very small but invasive tumor. I quickly got it removed.
My DCIS was grade 3 and extensive. I would tell anyone with the same to get it removed asap (though radiation seems a little extreme, given the risks it carries). Lesser grades aren't as urgent, and I know women who successfully were rid of it through natural treatments, but I certainly understand one's desire to get it out of the body.
2
@Famdoc Counting DCIS as a breast cancer is just one of the ways that the American Cancer Society and other fund-raising groups torque their statistics to strike needless fear into the hearts of American women. Breast cancer is terrifying enough without pretending that DCIS is a cancer or that it carries a death sentence. It doesn't.
4
All women should have a mammogram by 40. I had a lousy one, so I had to go to the Cancer Hospital and get a sonogram, showed nothing (I had bleeding from my right breast).. Cancer doc said: To be sure you need an MRI, I said okey dokey, my insurance company said NO WAY, yup I did not have the BRCA gene, no breast cancer in my family (none of them lived long enough is my opinion on that), so my cancer doctor fought with my insurance company all the way to the end, I was 63 then btw. So we decided to pay for it ourselves, 2,800.00$ plus radiologist reading etc. Nothing showed, BUT what if it had? I don't think people should have to get a home equity loan to pay for a perhaps life saving MRI. Very happy to read this woman's ductal cancer was caught very early. Among my friends (all my age) 2 out of 6 of us have had breast cancer, no one had the BRCA gene. We are a shame of a country.
8
"A diagnosis of ductal carcinoma in situ (DCIS)....This is what mammograms are looking for" is actually a pretty controversial statement, as DCIS is far more common than invasive cancer.
Identifying these lesions, many of which will never progress to cancer, has led to overdiagnosis and overtreatment, much of it debilitating, without clear evidence of reduction in breast cancer mortality.
39
@cornell
Agreed. I just finished treatment for stage 2b IDC with a grade 3 tumor (I had some DCIS as well). I'm shocked that so many stage 0 patients have double mastectomies and other invasive treatments. I hope that in the future, this will stop.
24
@cornell I'm not sure, but I believe that the DCIS can be checked for the type of cells, some of which are 'garden variety' and some of which may be very aggressive. Also, one can have a lumpectomy without having radiation or further treatment. It even can be done under local anesthetic. Perhaps this would alleviate anxiety over the DCIS becoming a future problem without undergoing more drastic surgery or treatments.
2
Had the same situation, only difference was 7 weeks of radiation and it was in 2002. I was in my 40s, no family history. Big warning: 15 years pass, and then diagnosed with soft tissue sarcoma tumor in the same breast CAUSED by the radiation, which resulted in a mastectomy because this sort of tumor apparently likes to invade the lungs. Did genetic testing, and I carry no cancer genes. Wish that in 2002 I had just had a lumpectomy and no radiation.
34
Thank you for your story. I had DCIS and a lumpectomy 5 years ago. I am SO grateful for mammograms and breast cancer researchers for making our stories have a happy ending. Happy Birthday!
6
My best friend, who had no prior family history, was diagnosed with breast cancer and chose to only have a lumpectomy. The cancer returned and her surgeon advised her to have a double mastectomy. She chose, instead, to seek alternative treatment from non western approaches. When she died at 47, she had an open wound, the tumor was pushing through her breast. I did not judge her choice to not have standard treatments because every person should be allowed to decide their own options. But last year when my own Mammogram showed up micro calcifications, I cried with relief when they were determined to be benign. I knew I would do anything to live. You were brave to go through this, thank you for sharing your story.
13
Carcinoma in situ is not cancer, in the same manner that a wart resulting from human papilloma virus is not cancer. Carcinoma in situ is dysplastic tissue, which means that the cells are growing abnormally. Dysplastic tissue is reversible, meaning that these cells can revert to their normal shape and function. There has been a widespread movement in the cancer community to discontinue the use of the term carcinoma in situ because of the obvious impact on patient perception of their condition.
56
@Mark Curry this reminds me of what I have discovered about my papillary thyroid 'cancer'.
I did layperson online research and have kept my thyroid and I'm in an Active Surveillance study at Cedars Sinai in L.A.
4
@Mark Curry
I recommend that you read the comment that has been posted by an oncologist, who disagrees with your argument.
I read somewhere an alarming statistic, a large percentage of breast cancers are first detected in women over 70 years old. Be alert and get those mammograms.
6
Four years ago, I was diagnosed with DCIS at age 60. During the discussion of treatment options and probabilities, I learned that the highest cause of breast cancer is age. So yes, continue to get the mammograms as you get older.
1
I was diagnosed with early stage breast cancer at 71. My 45 year old daughter who lives in London and is covered by NHS tried to get a mammogram because she had previously had a suspicious result and biopsy when she had lived in the US. NHS wouldn’t cover it because they limit mammograms to those over 50.
Worse, NHS will not cover mammograms in women over 70. I would not have been diagnosed, treated, nor gotten the one-year cancer-free clearance I recently received.
Remember that when you support government-managed health care. Will they make such rules in the US? I can’t imagine American women tolerating this.
5
@Eero
I used to work at a major cancer treatment center, my job being to interpret statistics. Women over 70 are diagnosed with breast cancer in larger numbers than in the past because they are living longer, having escaped some of the classic killers of women in history: childbirth, for one, and many of the diseases that we've either conquered or quelled. such as TB. It's not an epidemic of over -70 women. Something is going to get us, and more than likely it will be from the heart and circulatory system. For years, studies on these areas focused almost exclusively on men.
Although screening mammograms pick up most cancers, they also pick up lots of abnormalities that are not cancer and are not dangerous. Although I sympathize with the authors illness and worry, I would suggest that readers also consider this study:
Researchers from the University of North Carolina pooled data from six mammography registries in the United States. Their data included 117,738 women who underwent their first mammogram between the ages of 18 and 39. The researchers then followed the women for a year to determine the accuracy of the tests, evaluate the recall rate, and measure the cancer detection rates. The study included women who had screening mammograms as well as those who underwent diagnostic mammograms (due to a symptom such as a lump). It was concluded that “in a theoretical population of 10,000 women aged 35-39 years, 1,266 women who are screened will receive further workup, with 16 cancers detected and 1,250 women receiving a false-positive result.” They found no cancers in women under the age of 25 and a poor performance of screening mammography in women ages 35-39.
Yes that means that screening women from ages 35-39, 99% of those women who get abnormal results will NOT have cancer. Mammograms perform poorly in younger pts.
The lesson of this study is that not all screening tests are perfect and some tell you answers that are nearly always false. The anxiety and anguish that 99% of the patients go through is real and should not be taken lightly.
38
@TM Quite right on the false positive problem.
Furthermore, "Stage 0" is not a thing. There is no way at this time to tell whether DCIS will progress or not, so stage 0 was invented. It's maybe-malignant.
7
My medical story is nearly identical to yours. Except I was a tad older when diagnosed and treated. That was over a decade ago and have been well ever since. I'm a big proponent of the movement to prevent over-diagnosis and over-treatment. And often questioned whether I needed all that happened as a result of this diagnosis. The doctors assured me I did. I have come to peace w the evolving science and their ongoing reassurance.
15
I, too, was diagnosed with DCIS, and was immediately sent to a “navigator” who would help me schedule all the procedures - lumpectomy, radiation, etc. I went home, did my own research, and declined it all. I was 72 when diagnosed, and I’ll most likely die with DCIS, not from it. This is the right decision for me.
21
I was diagnosed with DCIS as a result of my first mammogram, when I was 37. The first thing I did was to go on the Web and discover that the 10-year mortality rate was 1 in 2000 (if memory serves); that calmed me down. I was apprehensive about the treatment and didn't feel my best during the weeks of radiation, but I wouldn't call the experience life-altering for me.
It did, however, lead me to learn more about our health care "system". Now whenever my health insurer calls with suggestions for my care, I say, "If you think I'm going to take medical advice from the industry that brought us the outpatient mastectomy, you're crazy!"
31
@Tamar R Thanks for providing such level-headed perspective. I found a lump in my breast at age 42. Invasive, so actually cancer. Even then I didn’t consider it all that life-altering to go through routine treatment, and quickly relegated the experience to the dustbin of my personal history once it was over. When I was diagnosed stage 4–and a very bad stage 4 with both visceral and bone metastasis—less than 18 months later, now THAT was life altering. While I’m glad the author is doing well, I think her entire experience is very different from having actual, indisputable cancer at that age, but the general population just hears “cancer” (even if it’s DCIS) and considers it all the same thing. Which inflates one experience and diminishes the other.
10
@L. Veen
Please accept my wishes for your healing.
it's not the cancer Olympics
1
Enough!!! We need more research into the cause of this epidemic. In non-industrialized societies, the rate of breast cancer is about 1/20, but in our country since the 1960s, the rate has skyrocketed to 1/8. "Overdiagnosis" only partly explains the increase. Meanwhile, our environment is saturated with 85,000 untested chemicals. (See the Breast Cancer Action website.) Would cancer of a male organ seem like more of a public health emergency?
23
@DL I agree fully with you that more research should be directed at understanding breast cancer causes that can then be used to promote breast cancer prevention. However, there IS a very common cancer that affects a male organ -- the prostate -- and, very similarly to breast cancer, it is over-diagnosed and overtreated without there being much focus on prevention.
13
@Jerry Bland-- There are, for sure, similarities between breast and prostate cancers! As a healthy, asymptomatic 65 yr old, I now say "No thank you" to mammograms. Just as I would say "No thank you" to PSA testing if I were male. The morbidity and mortality associated with an Undiagnosed breast/prostate cancer (at my age) looks much more attractive than the M/M of a diagnosed cancer. NextGenMED: When to STOP looking for cancer!
4
@DL researches know what has caused the increased rate in breast cancer. it's simple, but not what you'll want to hear: the large increase in the average age at which women now bear their first child. This is why the occurrence is so much higher in developed countries. The epidemic is actually a lifestyle epidemic. We need better and more humane treatments for breast cancer. But with women having babies in their 30s and 40s, breast cancer won't go away.
3
Best wishes to the author on successfully completing treatment. I am sure it was not easy.
But it should not be lost on us that DCIS (stage 0 breast cancer) is a controversial diagnosis. Many research MDs believe that it should not be called cancer at all because it is clear that MOST of the time it never turns into a life-threatening illness even without treatment. From a NYT article in 2015:
“The study analyzed data from 100,000 patients followed over 20 years, the most extensive collection of data ever analyzed on the condition. It found that there was essentially no difference in the death rate from breast cancer between the group that had lumpectomies with or without radiation and the group that had mastectomies. In both groups the risk of dying from breast cancer after 20 years was very low, about 3.3 percent. That is close to the odds that an average woman will die of breast cancer.”
If DCIS was truly a life-threatening illness the women who received the most aggressive treatment would have had better BC survival. That every group’s risk was similar to average women who have never had breast cancer is an indication that much of the treatment was unwarranted.
Unfortunately there is no way to tell if DCIS will progress, go away, or stay the same. So pretty much every woman gets draconian, life-altering treatment. Despite the fact that it is probably unnecessary in the vast majority of cases. This is called overdiagnosis.
59
KittyKitty- Were you diagnosed with DCIS? Have you experienced Stage 0 DCIS? I did, at 42. Thankfully I trusted the medical establishment and not the New York Times article. My DCIS, post mastectomy with pathology report, showed a small amount on invasive breast cancer. Had I trusted the alternative pathways of wait and see, my cancer would have spread undetected until possible metastatic breast cancer. At the time of diagnosis, I had a 5 and 3 year old. No chance I’m going to let it sit and have to go through mammo and mammo, biopsy after biopsy just waiting. No way any young Mom is taking that chance!
24
@EMS,
I will never be diagnosed with DCIS because after an enormous amount of research I have made an educated choice to opt out of screening mammography. The benefits are just not there, and the possible downside (overdiagnosis) is huge. That said, if I had a family history of BC I would screen regularly.
7
I too was diagnosed with DCIS. I read all there was to read, including the whole "not really cancer but pre-cancer stuff" and opted for a lumpectomy (actually 2 to get clean margins) and a abbreviated form of radiation (external beam) 2 x a day at high grays for 5 days. Now I am 7 years out and looking forward to retiring next year. I disagree with Dr. Esserman's wait and see approach to this diagnosis. DCIS "is" cancer - just can't break out of the ducts yet. But, without treatment, it could morph and become deadly. Don't let that happen.
The breast cancer community is filled with women who despite treatment for DCIS have gone on to have invasive BC, even 20 years later. This early type can and should be a warning or a marker for possible later trouble. Be vigilant and live your life to the fullest!
21
You are absolutely correct - and I’m proof of that
2
I was 43 when I got the diagnosis of Invasive ductal carcinoma (IDC). Because I had dense breast tissue, my gynecologist ordered an ultrasound my annual mammograms which turned out to be the best luck ever because the mammo was clean but the ultrasound showed a tiny spot. I also had DCIS in my other breast that the MRI revealed.
I couldn’t believe it because I had no family history of any kind of cancer, let alone breast cancer, and had 2 young children, a busy job, and well, a life to live. Bilateral mastectomies, 6 months of chemo and years of tamoxifen was my fate and after 3.5 years, I am cancer free.
I felt a little sorry for myself at being so young and having to deal with BC. The hospital I went to for treatment asks for your birth date at check in (instead of name) and each time I noticed there were more and more women with birth dates in the 1980’s and even one woman with a birthdate of 1991 (she would have been 25 at the time)! This is no longer a disease for our moms and grandmas. I hope every woman can get a mammogram (and ultrasound if they have dense breasts) to knock this awful disease out early. Better yet, I wish we could figure out how to prevent it altogether.
16
My mom was first diagnosed at age 35, then again at 50. I work in biostatistics, but I'm not at all comfortable with the upward revision of the screening age.
My wife - with a strong family history of early breast cancer (both aunts) - had to fight insurance tooth and nail to get checked at 35.
11
https://www.nytimes.com/2015/08/21/health/breast-cancer-ductal-carcinoma-in-situ-study.html?smid=nytcore-ios-share
Sorry what the writer had to go through. Especially since there is a high chance that it was completely unnecessary
27
As a man diagnosed stage 3 prostate cancer at 41 your story moves me immensely. I’ll never take anything for granted. And even though after recurrence my prognosis looks good, it was disheartening to think myself as lucky when so many are not. It’s shocking to hear the word “cancer” at our age and I very much appreciate your sharing this reflection.
35
I had the same DCIS diagnosis at 50. I opted for a unilateral mastectomy. A few days after my surgery, I drove my son to an activity and stopped in Panera for a coffee. The young woman behind the counter said "It's on me". I protested, but she insisted. That act of kindness still brings tears to my eyes. I don't know what struck her in that moment, but I am forever grateful and try to pay it forward.
33
@Leah Why would you do that for a diagnosis of DCIS? Why would you go for the most invasive therapy? I was diagnosed with Stage 1 breast cancer 20 years ago. I took the path of least resistance, lumpectomy, chemo and radiation. I only could stand the after therapy for three years and then stopped it. Unfortunately for me, I had a recurrence and needed a mastectomy. I still don't understand why I needed a mastectomy. The cancer cells they found, while taking out a benign mass, were smaller than my fingernail. I would have gladly gone back every three months to save myself from major surgery.
I think patients are jumping to the most radical treatment which are just not necessary.
2
Little kindnesses mean so much. I’m glad someone saw you that day. My sister with cancer was too ill to hold her head up at the hairdresser one visit - amazing she kept her hair through radiation and chemo. But going made her feel so much better. The hairdresser cradled her head gently and held it for her the whole time so she could get it washed and cut and colored. Then didn’t charge her. We all cried.
5
@Anonymous Cancer treatment is an intensely personal decision. I respect that and do not question choices others have made that may be different from my own. I'm glad your choice worked out for you. Mine has worked for me.
3
This was similar to my experience. With a mother who had breast cancer at age 51, at ages 33 to 45 I had numerous biopsies/checkups/mammograms that showed only calcifications but, nonetheless worrisome. Ah-ha, along comes age 50 and I have instead, early stage uterine cancer, I am fortunate now at age 70 still cancer free.
But I am not exactly free, it’s always there, that cancer scare.
Day by day we are ourselves free to react to that scare and live free. Courage.
14
I also had my breast cancer diagnosed through a mammogram and a biopsy. Like this writer, my was early stage and on only one side, so I also had a lumpectomy. I opted for radiation through the "savvy" method, which is a more targeted method done with a tube in your breast for a week and then a hook up to a radiation machine which shots the radiation into your breast where the cancer was. This is done twice a day for only 5 days. It's not fun to have this in you, but it eliminates the effects of external radiation and is done a lot sooner. I am now six years cancer-free and thank God each day. You know, everyone takes their cancer experience a different way, but I actually thank God for mine and what it taught me - gratitude, higher appreciation for life, and an incredible respect for all of the amazing medical professionals who did so much in such kind and amazing ways to care for me. God is good.
17
I am so glad that you were treated early and that it was successful. You are a very brave woman. Your last sentence got my attention : "The deck didn't get built because we couldn't afford it with the cost of my care". In the richest country in the world, cancer treatment should be affordable to everyone. I hope the next president will offer the same health care we are accustomed to in Europe.
48
Thank you for writing this powerful article. Your description of what it felt like to get the diagnosis reminded me strongly of the rush of emotions and fears I felt when I first learned I had bladder cancer. Like you there was no family history, I was not a smoker and I was much younger than most who get the diagnosis.
I went through the MRI’s, multiple operations and chemo which was local so not difficult to take. And I have to go every 3 months for check ups. Thanks to a great doctor and modern medicine the cancer has not come back.
The entire process was initially terrifying but we humans are very adaptable and over time I became more and more accustomed to the invasive checkups.
My advice is to make sure you go immediately to a doctor if you suspect something is wrong. There were small tell tale signs in my case but nothing obvious like blood in my urine. But I listened to my body and went to see a doctor. Like the author, if you find a cancer early enough the chances of nearly complete cure are much higher. Don’t wait!!
13
With no family history of breast cancer, I was found to have cancer in both breasts at age 47, during my second-ever mammogram. Even the breast surgeon could not feel it, but it was already in the lymph nodes on one side. I had lumpectomies, chemo and radiation on both sides, plus five years of tamoxifen. That was 20 years ago. I am deeply thankful for the tests and treatments that saved my life. But I think this article would have served readers better if it had presented a more nuanced picture of DCIS.
17
Maybe the argument here is more women should have mammograms earlier, especially if there has been some indication of abnormality. My youngest daughter was reluctant to feed from one of my wife's breasts - the breast that later showed cancer well beyond DCIS. My wife had 2d mammograms regularly but dense tissue hid the calcification and cancer. It was the 3d mammogram that revealed, clearly, the changes indicating cancer. My wife is fine now but had to go through much more aggressive treatment and surgeries than the writer.... If it had been found two years sooner perhaps much of that really difficult and debilitating treatment could have been avoided. Jenny, was your mammogram 2d or 3d?
14
And then there are those of us who were 33 years old when I found my stage 2 lump with no breast cancer in the family, and when my daughter was 8 months old. Thanks to luck and my doctors, I’m now a 20 year survivor.
40
@Stephanie Meyer Me, too, Stephanie. 34 yrs. old w/ a two year old. Stage 2 w/four nodes. Full mastectomy, 8 rounds of CAF (Cyclophosphamide, adriamycin, 5-fluorouracil), all the side effects, reconstructive surgery (with no problems whatsoever), and no more children recommended. No family history, no BRCA gene. That was 32 years ago and I am humbled and grateful everyday. So, yes, your statement, "And then there are those of us .... " strikes a chord with me.
1
I wish the NYT editors had provided the perspective that DCIS is pre-cancer. It's not yet cancer. I worry that our health system has become so profit driven that their marketing approach to "consumers" is "you have cancer and we can save you" with expensive surgeries and radiation that you might not need. This strategy is especially successful with young women. If you are faced with a DCIS diagnosis, google Dr. Laura Esserman/UCSF or Dr. Gilbert Welch/Dartmouth on this topic.
92
@Judy J Except that they are learning more and more about DCIS. And you might feel completely differently if you get that diagnosis . . . I, too, felt if I ever had DCIS, I would wait. But when faced with DCIS, all I could think was "Get it out, get it out, get it out . . ." The radiologist said it would need to get removed because it would grow. And the surgery pathology confirmed that: The tumor was nuclear grade 3, the most aggressive. I had a lumpectomy and radiation, perhaps saving myself a total mastectomy down the road. DCIS is not always benign.
32
As an oncologist, allow me to correct you. Current staging systems and insurance claims consider DCIS a type of non-invasive malignancy ( stage 0). It is not considered life threatening because it does not spread. It’s considered a marker for higher risk of developing invasive cancer, which can be life threatening. Treatments for DCIS , including surgery, radiation and in some cases anti estrogens, are meant to lower the risk of having invasive cancer in the future, not prolong life. Treatment of a non life threatening condition, cannot in itself prolong a woman’s survival. Studies are ongoing to determine which women can be spared radiation and more aggressive surgery, although we are not ready to recommend this today, particularly in a woman as young as the writer.
81
And that’s why they treat it with lumpectomy and radiation.
10
I went through exactly the same thing as you. Mine was later - I had just retired in 2017. I was looking for a summer of loafing around at home. Instead it was filled with a biopsy, MRI, two surgeries to get all of my stage 0 cancer, and then a round of radiation. I’m still free from cancer and I’m now taking those loafing days I missed. So glad things worked out for you also.
20
So glad your DCIS cancer was found and treated early. Every one reading here today knows someone who wasn’t as fortunate. My mother had DCIS 0 years ago. She’s 92.
16
Exactly 1 year after the death of both of my parents by a livery car hit, I tried to catch up with my annual health exams. My mammogram revealed a rice crispy size lesion in my fibrocystic breasts. I refused the bilateral mastectomy suggestions for lcis.
My lumpectomy revealed dcis and lcis
After 35 rounds of radiation and a miserable adventure with tamoxafine, I am fine 7 yrs later.
The take home message is "Do what you gotta do."
27
Bless you and everyone facing this illness. Be well.
30
The 'best treatment' for breast cancer (or any, for that matter) is early detection. I started doing BSE's (breast self exams) at age 40 just like I was told to do. After several years I would lapse a month here, a month there. One morning (age 46+) as I casually checked during a shower, I was stunned to feel a tiny lump. A biopsy confirmed that it was cancerous and I went through the lumpectomy with radiation. It was only 1 x 1.5cm, barely invasive, stage 1-A. However, 11 and then 15 years later, there were indications of calcification and other symptoms, so I chose mastectomies. Because of the previous radiation, an implant wasn't an option - but it didn't matter! When given a choice between cancer or being 'boobless' and living a longer life, it was a 'no brainer.' I'm now 82 and doing fine. So, ladies, do those exams and get those mammograms!
55
I was 45 when diagnosed with DCIS, which surgery later revealed as stage 1 cancer, not estrogen receptor positive and very aggressive but tiny; mastectomy and chemo for 6 months followed. My children were 5 and 7. It was terrifying. But I was lucky, and I'm now almost 25 years out. You will survive.
49
Same story with me at age 46 with young children and a business. First on right breast 17 years ago (2002) and then the left breast 9 years ago (2010). Lumpectomy, mastectomy, 6 months of chemo for the first round. Second time, straight to mastectomy, 3 months of chemo along with a year of Herceptin. All that for early cancer that at first was DCIS but upon further review revealed what I call barely invasive. Good news at both events, my lymph nodes were clear. My constant thought was, I’m not sick....”expletive” cells were found and needed to be dealt with. I considered myself healthy throughout
Turned “64” last July and have a beautiful life in spite of this detour. Yoga and my acupuncturist helped me survive all the surgeries and treatments. Grateful everyday. Still working and enjoy life, family and friends. My best wishes to all who face this dreaded disease. If caught early, you will survive and move on. It’s amazing how strong women really are.
Question: who out there have osteoporosis as a result of chemo? That’s the only thing I currently have to deal with and will not defeat me. Fighting back with exercise and medication.
7