‘No Longer a Disease for Our Moms and Grandmas’: Women on Early Breast Cancer

After a Styles column about one woman’s experience with an early diagnosis, readers shared poignant stories of fear and survival.

Comments: 30

  1. I was in my forties when I was diagnosed. Ten years later, I continue to be affected daily. I wrote the book Sorry I Was No Fun at the Circus about what happened to me at that time, and I am always surprised more women aren't aware that after such a diagnosis their partners or husbands will abandon them in record numbers. The New York Times and others have reported on this phenomenon. I call it The Judas Jilt Syndrome. Going to court for two years during treatment, bald, sick, sweating, and confused, was, I always say, worse than cancer. Treatment and survival is made so much more difficult by the abandonment many women will face. It must rank as one of the worst kicks a person will ever take while down. Forewarned may not be forearmed when this happens, but I still do wish I had known the numbers beforehand.

  2. @DChastain A friend of mine who had a double mastectomy about 8 years told me, "When my breasts were removed, my husband lost his two best friends." Sad but true. They're still married, but nothing sexual. They're in their early 60s.

  3. @Sasha I ran into these stories all too often during my treatment and since. Just heartbreaking to see women rejected in any way because of cancer.

  4. Thank you for sharing these responses. Brave women all.

  5. The original piece and this follow up piece are so moving. My mother, sister and I have been challenged by the shadow of breast cancer in its many forms. I am moved and comforted by both recent NYT pieces on this subject. Breast cancer is a multi-layered, covertly complicated disease. We women must do what we can to improve research, take care of ourselves and each other. Thanks again. xo

  6. I had insisted on annual MRI’s as I have dense breasts and was taking HRT. My insurance gave me a hard time at first but relented. An MRI diagnosed Invasive Breast Cancer that was 2mm, and quickly removed in a lumpectomy. Those MRI’s saved my life. We need to advocate for our own health needs.

  7. I had a baseline mammogram at age 40. At 45 I began getting annual mammos, each one negative. Then my 20th annual at 64: next morning an anomaly was found that wasn't present on prior mammos. No lump. No family history. No gene mutations. Fatty, not dense, breasts. More imaging, then biopsy: invasive ductal carcinoma (IDC), grade 2, Stage IA, estrogen/progesterone-receptor positive/HER2-. Had lumpectomy + targeted short-protocol (3 wks) radiation. Low Oncotype, so no chemo. About to start my 5th yr. on letrozole (an aromatase inhibitor aka AI). So far, so good. Side effects manageable. But so much ignorance in the comments: one claimed she had "DCIS Stage 3" and had chemo. Stage 3 is IDC. DCIS is Stage 0, and they stopped giving chemo for it 15 years ago. Another said she chose lumpectomy to avoid radiation. Quite the opposite: lumpectomy almost always requires rads (except w/a very low DCIS version of Oncotype score). The woman whose DCIS "filled" her milk ducts and said it would have metastasized w/o surgery? NO! When DCIS breaks out of the ducts into the breast tissue, that's not metastasis--it's IDC. Estrogen is made in the brain? NO. After menopause, it's converted from androgens produced in the adrenals & fat tissue. As to AIs, would you rather have MBC (incurable) instead of estrogen-deprivation side effects? Folks, do your homework--and not from Dr. Google, who is an idiot without a filter. Try breastcancer.org instead.

  8. @Sandy I agree, anyone with questions should go to breastcancer.org (including its community discussion boards). It is the best BC site on the internet. Mrs. David, going on seven years NED

  9. @Sandy You are so right! There is a ton of misinformation out there, and when you get the diagnosis (as I did: IDC, 5 years ago. Lumpectomy + 3 weeks of radiation. I have 9 more months on Arimidex, and I'm counting the days!) you're thrust into a world of alphabet-soup acronyms and a dizzying array of choices. Not to mention all the advice, informed and ill-informed. Breast cancer is one of those things where "everyone really is different." Your case is not going to be exactly like anyone else's. As mentioned, the boards at breastcancer.org are informative, but you have to read and read and read. The amount of information is vast. And NED ("No Evidence of Disease") is a much better term than "cancer free." You can NEVER know for sure if you're cancer free. Even if you've never had a diagnosis of cancer.

  10. DCIS is O stage, which means the problem is within the milk duct. Stay with GYN to see what to do. For the most part the O stays O

  11. @carlamaybe yes, (IN SITU) and not really technically invasive breast cancer. surprised it is called breast cancer here in NYT. survival rate nearly 100%.

  12. It's important to know that one of the side effects of mothers taking DES - Diethylstilbestrol - given freely (from 1938 - 1971) to potential mothers having earlier miscarriages - are: Cervical Cancer, Breast Cancer, early menopause, difficulty in conceiving, many other serious issues, etc. If possible, find out if your mother/grandmother took this drug. Mine did, and luckily my mother told me about the horrors of this drug when I was about 20, and I have gone for full check-ups every single year. So far, so good. And I'll be 70 next year.

  13. BTW, it's a misconception that DCIS is the most common form of breast cancer: only 20% of breast cancers diagnosed are DCIS. Invasive ductal carcinoma, aka IDC, accounts for 70-75% of all breast cancers--a preponderance of which are hormone-receptor positive, especially postmenopausally. It is also a misconception that all invasive breast cancers begin as DCIS--it has a distinctly different histological "signature" from that of IDC. As you can tell from my experience (which is rather common among older women diagnosed at early-stage), one can go from no anomalies one year directly to invasive at the next. "Early-stage" is anywhere from 0-IIIa. DCIS is hormone-negative about 60% of the time, but often tends to be higher-grade (3, which might have been the source of one woman's belief she had "DCIS Stage 3." Stage is expressed in Roman numerals, grade in Arabic). It is often multifocal (more than one site)--which explains why so many DCIS patients opt for mastectomy. Mastectomy for early-stage node-negative tumors rarely requires followup radiation, and DCIS never requires chemo. Hormone-negative DCIS doesn't get endocrine therapy either. Therefore, bilateral mastectomy for hormone-negative DCIS is often a "one-and-done" affair without further treatment, which for all intents & purposes is a "cure." We IDC ladies whose tumors were hormone-positive can only hope for "no evidence of disease" (NED) for as many years as possible--it tends to return eventually, even decades later.

  14. @Sandy - Thank you for the excellent summary. It's not correct that diagnosed DCIS never requires chemo, however. I was diagnosed with extensive, aggressive, Her-2 positive DCIS with microinvasions fourteen years ago. No chemo was planned until microscopic invasion was found in my lymph nodes (a certain amount is considered OK, above that the diagnosis changes). I was re-staged to Stage IIa. I had surgery, four rounds of dose-dense chem, radiation, and a year of Herceptin. While it wasn't fun, treatment wasn't nearly as bad as I expected. There are great anti-nausea drugs now; having support and great doctors helped also.

  15. I was diagnosed with IDC at age 33. I found my lump on my 30th birthday, but it was very small and my OB/GYN didn't think it was worrisome. It grew slowly, fortunately (or unfortunately...) but at age 33 I went directly to a surgeon. He took it out, and, surprise! Breast cancer. I decided to do the double mastectomy with reconstruction because I was so young and didn't want to be paranoid for the rest of my life. I know it was the right decision for me. Chemo and radiation were not required since I chose the surgery. 17 years later and I'm doing well...just dealing now with menopause.

  16. I was just diagnosed at age 31 with I.D.C. Breast cancer runs in my family so the diagnosis doesn’t surprise me. I just never imagined it would be this young. I found my own lumps and now encourage women of all ages to perform their own exams monthly to take early action.

  17. One piece of advice: ladies.. and men.. check your breasts (and area around your breasts) regularly. Then if something suddenly feels different one day, you will notice it and can have it checked out. I found my own lump. When I went to my gynecologist to have her check it out, she couldn’t even find it and kept asking me where it was. I finally got her to feel it. She sent me down the hall for a mammogram which came back NEGATIVE. I then had a biopsy which confirmed the cancer. Men .. and ladies.. be diligent about knowing what your own body feels like. Then go have it checked out if it changes. It saved my life. Turns out I had triple negative cancer. Was then also tested for mutations. Came back positive for BRCA1. Had chemo, double mastectomy and hysterectomy. Thankfully, 7 years later, all seems good. If I hadn’t found my own lump, things would likely have turned out differently.

  18. @Elle Thank you for reminding readers that many, possibly up to 40%, of breast tumors are ‘interval’ - found by women between scheduled mammograms. Great advice to insist on complete testing. A diagnosis of triple negative, especially in a younger woman, should automatically trigger genetic testing. Elle, if you were diagnosed with a BRCA1 mutation, you had an oophorectomy when you had a hysterectomy. Women with that genetic diagnosis have a 40% lifetime risk of ovarian cancer. Risk of uterine cancer is not elevated, but many gynecological oncologists do both surgeries.

  19. @Elle - Kudos for your self-care and self-advocacy. You saved your own life.

  20. I was diagnosed with Stage 3 at 37 years old. Ironically, the wellness program at work that I started as a risk manager saved my life because I found the lump in an aerobics class. My husband couldn't deal and figured a live mistress was better than a dead wife so he left me and my boys, 5 and 8 years old, to fend for ourselves. I I elected to have pure adriomycin (straight no chaser) then freeflap reconstruction on my right breast with a CMF "cleanup" after the surgery. This treatment, my family, my friends and a determination that such a cowardly man would not raise my sons kept me alive. It's now 24 years later. While I wouldn't wish it on anyone, if you are diagnosed with cancer, take advantage of the time to reflect. Know you'll be forgiven for outrageous acts. Identify what gives meaning to your life. And if you survive, never forget what you learned. Life is so much richer because I had cancer. My sons are wonderful men because they learned things too. When you face the rest of your life knowing you've already survived the worst life can throw at you, you learn to live every day to it's fullest and more importantly, to live life unafraid. I could die tomorrow knowing I've had a great life despite that little thing called cancer that I had so long ago.

  21. @TheBossToo This phenomenon of men leaving their wives with cancer I call The Judas Jilt Syndrome. As I wrote here a few days ago, it happens all the time. You soldiered on, your sons became good men, and you've used the experience to live a full and fearless life. Beautiful story.

  22. i was 39 when i was diagnosed with intraductal carcinoma, very small, very early. this was in 1993, so the only option was a mastectomy which i refused. i opted for a lumpectomy and radiation. a year later, a "missed" tumor was found (i'm quoting the surgical oncologist) and he said this time a mastectomy was my only option. I then went to an oncologist who recommended chemo. that, I probably should have walked away from but it's difficult to make those choices on your own. all in all, i was very lucky in many ways, i worked almost ever day, hair loss is nothing when you are scared for your life and hey, it grows back. now going on my 28th year, i see it as a bump in the road, thankfully.

  23. Many breast cancers diagnosed early are over diagnosed; ie the cancer would not have bothered you during your lifetime. As treatments for breast cancer have improved, the need for early diagnosis has diminished. Instead, we are facing decades as survivors, undergoing the diminished quality of life from the collateral damage of breast cancer treatment, as Susan Love puts it. Nordic Cochrane recognizes that the best way to reduce breast cancer diagnoses is to avoid screening, especially if you are an average risk woman. Why would you want to find breast cancer early by screening mammography or MRI, in your 30s or 40s, when you are in the throes of career and family, rather than waiting 20 or more years? No change in mortality. I say this as a breast cancer "survivor", otherwise known as lead time bias. Your mammogram did not save your life, it just reduced your quality of life a few decades earlier.

  24. @Susan Lemagie Everything you have said is WRONG. Women diagnosed with breast cancer at an earlier age, i.e. 30's and 40's are much more likely to have an aggressive course, with an "unfavorable outcome", very similar to men diagnosed with prostate cancer in their 40's and 50's. You said it yourself: "We are facing decades as survivors..." Great! Surviving is the whole point! Every other statement you make is ridiculous and incorrect. And yes, mammograms DO save lives.

  25. @Matt There is a big difference between diagnostic and screening mammograms. Some biologically aggressive cancers are not amenable to screening, and would not be cured even if diagnosed early.

  26. @Susan Lemagie No change in mortality? My surgeon doesn't agree with you. Stage III bc found in my 40s, would have been dead before 50 untreated. Quality of life? Vastly improved. I learned I can't process all that folic acid put in the food supply due to my genetic variations. I now have Vitamin B12 and D levels that enable me to thrive. My lifelong fatigue is gone. Its time doctors stop dismissing women's symptoms. Its past time for research on B12 and D 's roles in preventing cancer.

  27. When will we start looking at what passes for food in this country. We eat artificial sweeteners and artificial fat. Then we ignore the warnings that these things destroy our microbiome. We ignore the nutrition experts that include cereals and grains in any type of healthy diet and replace it with wheat that has been poisoned with Round Up and then totally destroyed. Go figure. ps Cheerios has more Round Up than any other cereal.

  28. My niece, Jael Strauss, who was a contestant on America's Next Top Model, died last year. She was 35 and had only recently been diagnosed with stage 4 metastasized breast cancer. Devastating and she lost the battle rather quickly, within a couple of months. She had stress in her life and drug issues, but she had turned her life around and was a savior of many others battling addiction. I see tributes to her almost every day on social media.

  29. I am the Laura in the article. I had the diagnostic mammogram and ultrasound yesterday. While the questionable nodular density was still visible in the mammogram pictures. the tech and the radiologist were unable to conclude whether it was a lymph node or a cyst or just very dense tissue. Back again for another round in 6 months. It's not the answer I was hoping for (resume mammograms on a yearly schedule), but it's not the one I was dreading. On we go.

  30. I was diagnosed with stage 2 breast cancer (invasive, obviously) at age 44, no family history and I was a lean, vegetable eating runner with two young kids (6 and 9). One mastectomy, three months of chemo, one more surgery for reconstruction and then Tamoxifen for x number of years and hopefully all will go well. What is hard is that it that the fear never goes away. I have had suspicious MRI readings that resulted in coming back for a MRI guided biopsy, only to be told that the suspicious spot was gone. Many fears have been of my own making, with any ache or pain or strange symptom automatically ending up in multiple imaging tests and blood drawn. It is amazing how willing doctors are to give you any test you want after you have had cancer. I do feel more grateful in life and have found strangely enough more purpose as well. I also never felt that I was a victim, I actually felt that I was experiencing something very common in women my age now. I also already lost a friend to breast cancer when she was 44. My cancer was found on a MRI, because I was told to have a baseline MRI after the mammogram showed that I have very dense breast tissue. Don’t underestimate the usefulness of imaging. Stage 2 cancer is not a “wait and see” cancer, it will spread and you will die if left untreated.