Why 1 in 4 Early-Stage Breast Cancer Patients Still Opt for Mastectomies

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tryecrot of AL 12:43PM August 27, 2011

I was just diagnosed with DCIS and am having to make the lumpectomy/radiation v. mastectomy decision. Laura from NM, I don't know if you still read these but I am also from New Mexico and would love to communicate with you about the doctors that you used. I am in the north part of the state and am considering going to Albuquerque for treatment. If you respond to this blog, I will give you my email address. Thanks!

Jen of NM 1:37PM September 12, 2010

I am one of those early-stagers who had a double mastectomy and reconstruction. A screening mammogram revealed that I had a 6mm, grade 3, HER2 positive tumor and lots of DCIS in my right breast, at the tender age of 39. My talented, fabulous, wonderful surgeon carefully explained both options to me, gave me time to think, and referred me to an excellent plastic surgeon. After realizing that I'd go through 6 weeks of radiation and have a malformed right breast when all was said and done, I decided to take the whole thing off. I added the left breast to the whole package because I had very dense breast tissue and didn't want to wake up every morning wondering if I'd developed a second primary in my left breast. Cutting that risk from 5% to 1% made sense to me - if I was going under the knife once, I wanted to do everything I could to make sure I didn't have to do that again.
In April, I had areola and nipple sparing mastectomies and immediate reconstruction with cohesive silicone implants. My new breasts are just about identiscal to my previous pair - except a little larger and rounder! My scars are under my breast and invisible unless you lift them up. The recovery was quite easy, no worse than having muscle pain from doing too many pushups.
In short, I KNEW I was a candidate for lumpectomy and radiation, and very consciously chose against it. I was blessed with a very talented surgical team and supportive family, not to mention great insurance - and so I've got no regrets.
However, I believe I speak for many women when I say the following: I am sick and tired of doctors and the media second-guessing our health choices. I realize overtreatment is a major issue in our society and that mastectomy, mammograms, and adjuvant (chemo and biological) treatment all carry risks and costs. However, we also get daily exposure to messages about the dangers of breast cancer, the importance of early detection, and the promise of permanent cure if we act decisively. All of us know at least one woman who's suffered through the miserable death that breast cancer brings. Moreover, there are many issues in cancer treatment that are up for debate and discussion in the oncology community, where uncertainties about epidemiology and treatment abound. Lastly, we live in a society where we patients are told to be proactive in making our treatment decisions, that we're responsible for taking care of our health. Is it any wonder that so many of us choose to be as aggressive as possible when addressing this disease? Don't shake your head in wonder at our "preferences," however irrational they might seem, until you've walked in our shoes.

Laura of NM 3:18PM December 01, 2009

PLEASE EXPLAIN TO ME IF 2ND SURGERY SHOWED MARGINAL CLEAR EACH TIME NO LYMPH NODES REMOVED WHY HAVE ANY TREATMENT? OR IF TREATMENT WHY NOT ONLY TAMOXIFEN. WHY CAN'T I ONLY TAKE TAMOXIFEN? TO ME IT SEEMS EVEN AFTER RADIATION YOU NEED BREAST RECONSTRUCTION. PLEASE BE KIND ENOUGH TO ANSWER. THANK YOU

SARAH ROUNDTREE of NY 12:01PM November 08, 2009

My experience was that I went very calming into a choice and then several doc's proceeded to scare the life out of me and I had a dx of DCIS which has a very good outcome. I believe it is the doctors especially the surgeons who encourage mastectomy's when a breast conserving method would work almost as well. So if that is even remotely true, how can we trust the doctors at all??? This is a very important piece of the information always left out. THE DOCTORS ARE TO BLAME!

Dee of AZ 3:40PM November 04, 2009

I am an eleven year surviver of breast cancer. My surgeon encouraged me to have a lumpectomy but I requested to have a mastectomy because I wanted to be sure there were no cells lurking in another part of the breast which might not be picked up from the lumpectomy. As it turned out, there were two tumors which the surgeon discovered during surgery, so he needed to do a mastectomy anyway. After the procedure, the rest of the breast tissue was biopsied and a third non-palpable tumor was found in a different region of the breast. I had been having greenish-bloodtinged discharge prior to the surgery. Since I had the same type of discharge from the other breast, I had a mastectomy on that side as well. I took Tamoxifen for a year, but then developed side-effects which necessitated stopping it. I then had a bilateral oophorectomy as the tumors were highly estrogen positive. I have since had reconstruction bilaterally with some complications, but overall am comfortable with this choice as it enables me to get on with my life and until articles pop up about breast cancer, I rarely even think about it anymore. I never had the BRCA testing done because I have three daughters, and do not want a "high-risk" flag on their health records which might disqualify them for insurance coverage, had I tested positive. Perhaps this is being a bit paranoid, but I know personally getting health coverage after cancer is next to impossible. Fortunately I have been able to continue working full-time as a nurse and am covered through my employee group plan. I am very grateful for all that has been done for me by my many excellent physicians and do not regret any of the decisions I have made. I am blessed with a loving, supportive husband who accepts me as I am. I have three beautiful grandchildren who are the joy of my life. Had I not had such excellent care, I may not have survived to see them. I also thank Jesus Christ, my Savior, for helping me detect the cancer soon enough to survive it and to lead me to the right plan of care. Because I have a PPO, I was able to basically choose what procedure{s} I wanted and the provider{s} I requested.

Kathy Belden of CA 7:00PM October 27, 2009

My wife had DCIS 26 years ago, at age 33. Her mother died at age 48 so my wife decided to have double mastectomies. About three years ago, after her first cousin on her mother's side died of ovarian cancer, my wife went through genetic counseling and found out she has the BRCA2 defect. So she had her ovaries removed. About 3 months ago, she found out she has breast cancer again. She has hardly any breast tissue left, but cancer found it. It was DCIS again. But a PET/CT found another spot behind her implant. Biopsy found more cancer in he muscle. Now she is undergoing radation and chemo, in a fight for her life. Ladies, be careful, and be proactive in your own care. Breast cancer is deadly, and is persistent. There is so much that the docs don't know. Choose life. My wife would not have had the last 26 years if she hadn't been agressive in the beginning. Save the ta-tas? What a joke...save your life...see your kids get married...love on your grandkids...EAT YOUR DESSERT FIRST!!

Curly of CO of CO 10:14AM October 27, 2009

This article may be too one-sided and inaccurate. I had stage zero DCIS which was extensive, requiring a wide excision if I had a breast sparing operation. I was told that with the radiation and a lumpectomy I would have a 13% chance of recurrence. With the mastectomy I had next to no chance of recurrence and no radiation. Since my mother had pre-menopausal breast cancer and died 27 years later of lymphoma related to the radiation she received (it was different back then), avoiding radiation was very appealing. In addition, once you have radiation, it makes plastic surgery more challenging because it changes the elasticity of the skin. I had always decided that if the other shoe fell, I would go for a mastectomy. I hear of too many cases of recurrence. Why question the judgement of women who would choose to lose a breast in exchange for more certainty of maintaining a life? Besides, mastectomies are not what they used to be. You can retain your muscle for one thing, and at stage zero you dont have to give up your lymph nodes. My reconstruction was an expander put in during surgery, replaced a year later with a saline implant. It looks quite natural clothed or in a swim suit.

Cheryl Wasserman of DC 9:56PM October 26, 2009

I am in the middle of making these decisions for myself. My DCIS is large and the Dr. has given me a choice between lumpectomy and mastectomy and explained that the survival rate is close to 100% in either case. It's the fear of recurrence and that the NEXT cancer would be invasive and deadly that spurs me and other women to mastectomy and reconstruction. We all know women who have died of breast cancer, we don't want to be another statistic. Hopefully in the near future women with the diagnosis of DCIS will have a more clear cut prognosis to tell them whether mastectomy is needed. I just want to be around to see that day. Even if I am being "overtreated". My mom and aunt had breast cancer. I have breast cancer. IF my daughter is diagnosed in the future hopefully we can sit around and talk about treatment in the "bad old days" and how lucky she is to have better options. I just want to be there for that conversation. Life is full of hard decisions, this is one of them.

DCIS at 11cm of TX 10:41AM October 25, 2009

If you read my history than you would understand why. I have two aunts and a mom that had breast cancer. My own aunt had a re-occurrence after a mastectomy, she was 50 at the time of her re-occurrence. My own mother took Tamoxifen in double blind study for five years before getting Invasive Ductal Carcinoma. She had completed Tamoxifen, and was two years clean before she had Invasive along with DCIS. My mom chose mastectomy and has not had a re-occurrence. My other aunt chose mastectomy and reconstruction like my first aunt, she has been cancer free.
When I went from being without breast cancer to the youngest diagnosed in my family at 46 vs 48 like my aunt. I did not intend to mess around with the beast that tried to kill my family. Tamoxifen I had no confidence in, after all it did not save my mom from the cancer. I could have had a lumpectomy and taken another chemo drug, felt like a sitting duck waiting for the hunter to come along.
I did what many women do with families like mine, they fight it hard and fast. I did double mastectomy with reconstruction. I am the magic four years free. I also did what I hoped would help others in my situation, I did genetic testing only to find out that my family does not have a gene YET that is on the list of possible gene links to breast cancer. My family has an extensive long history with polyps and colon cancer, and yes I had two polyps when I was only 48. I truly believe one day my family will be identified as family with a cross gene, since my aunt with the re-occurrence had polyps as well. Having two grandparents die of colon cancer, tends to make you pro-active also.
I can only hope more patients look at their family, and rely less on articles like this. My reality was not like anything I could have read, I knew what I was facing if I had a lumpectomy.

Kathy Vogelsang of TX 11:28AM October 23, 2009