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BY KATHY LATOUR | DECEMBER 11, 2009
It wasn't surprising to me today to hear data that showed a large increase in women choosing prophylactic mastectomy on the side not affected by breast cancer. You can read the details of the study in a brief from Laura Biel in Day 3 coverage of the symposium, but in a nutshell it showed that a woman diagnosed with breast cancer is more likely to undergo prophylactic mastectomy if she has an MRI and biopsy of the healthy breast during treatment. The 3,000 women were studied between 1997 and 2005, while researchers were trying to explain why mastectomy rates are increasing. I wish I could sit down and talk to these researchers, because I think I understand exactly why women want the other breast removed – fear. And, while there weren't details on why they used MRI in the presentation, MRI is not the first line diagnostic tool.
This tells me the medical professionals were not able to determine the status of the second breast, a scary piece of information for women. I agree that women with DCIS may be overreacting to choose to remove both breasts, but, you know what, after being diagnosed in 1986 with stage 2b breast cancer at age 37, I begged them to take off both breasts. I had a 1-year old and I wanted to be around to raise her. Back then they wouldn't consider it, but I wished I had fought them when, in 2007, I got DCIS in my other breast and underwent a second mastectomy.
This kind of story is out there more than anyone knows and women talk. In addition, with breast cancer being publicized the way it is, it's very much seen as a killer. When you have one breast that betrays you, it makes sense that you want the other one gone, and the younger you are the more motivated you are.
The women I've talked to who demanded prophylactic mastectomy were not going to be deterred, but most of these women had advanced diagnoses.
I think that removing both breasts remains a decision to be made by a woman, her loved ones and her doctors.
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I agree with what you say about fear and the removal of the other breast. I had my left breast removed in 1999 with 5 out of 20 nodes positive. I had chemo and radiation, took tamoxifen and have been on Arimidex for 7 years. Life went on, but every 6 months I had a check up with additional tests. I had several biopsies on the right breast, calcium deposits appears, and mammograms would come back Rad 4 and further films would be needed. I asked about removing the remaining breast and the answer was no. But then my mother died at 89, having had both her breasts removed 20 years apart and the week before she died marble sized bumps appeared on her head and shoulder. We decided to have them biopsied, even tho she did not know and they came back as breast cancer. The decision was made for me, I made a trip to Seattle and had more tests and came home to Alaska to talk to my surgeon again about having my remaining breast removed as well as my ovaries. He agreed. There was no cancer found, but my heart beat a little lighter and a practical thing happened...my chest was flat and my clothes fit better, no reconstruction, but no more bra which I hated anyway. Now to find someone who makes a bathing suit for old flat chested women.
- Posted by Margaret Andrews 12/12/09 2:36 PM
Exactly 40 years ago, I told my college roommate that with my family history of breast cancer, if I my insurance would pay for a prophylactic mastectomy, I'd jump at it. She thought I was crazy.
Forty years ago - 1969, to be exact - there were relatively few choices available to breast cancer patients. My mother was one of them. She had a radical mastectomy, but there was no cobalt treatment to follow because that was her only option and her doctors theorized she wouldn't be able to handle it. Four years after diagnosis, after the cancer had metastasized to her bones, she was dead.
It is a different breast cancer universe today. And yet I would make that same choice now: a double mastectomy. I did develop cancer, as I knew I would. And because my breasts were dense and the tumor didn't show up on mammograms, which I had yearly, I was stage 4 when I, without any diagnostic tool, found it.
Prophylactic mastectomy may not be everyone's choice, but one thing should be: if a woman has dense breasts, regardless of the mammogram results, she should DEMAND an ultrasound or MRI. Every woman with advanced breast cancer I met during treatment passed her last mammogram with flying colors. And every one of us had our diagnoses confirmed by ultrasound or MRI.
Even if you have to pay for it, yourself, if you have a family history of breast cancer you're playing Russian Roulette if you rely on mammograms.
- Posted by Elaine Jesmer 12/13/09 1:19 PM
I had a bilateral lumpectomy in September 2008. I was 74 at the time. I had an MRI in addition to the mammogram because I have dense breasts. Good thing because a lot more cancer was located with the MRI. Despite that, I had to have a second lumpectomy on the left breast because of the lack of clean margins. I also had two very tiny bits of cancer in my lymph nodes. After the second surgery, I had made up my mind that if a third surgery would be required, it was going to a double mastectomy. As it turned out, that wasn't necessary.
This year for my annual check up, the MRI revealed an unknown something in my right breast. The pathology report came back with a classic description of angiosarcoma. My doc saw me on Thursday and had me into the hospital the following Monday, much faster than my surgeries a year earlier. As I awaited the results of the last surgery, which turned out to be nothing serious - just left over debris from a year earlier, I made up my mind it would be a mastectomy if additional surgery would be required.
My first bone of contention is that because I have dense breasts, mammograms miss whatever is there unless it is very gross. I should be able to start with an MRI. But the insurance will not pay for it unless the mammogram comes first. Waste of $$ for someone like me. By the way, I'm not huge.
The second thought is that when someone has dense breasts, it is entirely possible to miss a great deal. I've been scanned in every way possible so many times I should glow in the dark. I'm beginning to think of my breasts as full employment as I'm not confident more cancer is lurking in there somewhere. I'm aware that there can still be cancer found behind mastectomies, but at least the view is more clear.
It may be a surprise to statisticians that women might opt to choose mastectomies, but they are looking at numbers. We are looking at our past experiences of waiting for test results and wondering what else might be there unseen at the moment only.
- Posted by Kathy Ulrich 12/13/09 1:30 PM
What I don't understand is, with all the evidence to support the concept that women with dense breasts should have ultrasounds or MRIs, WHY DON'T THE KOMEN PEOPLE JUMP ALL OVER THIS?!!! They have enough power to make it happen. And yet, it doesn't seem to be a concept they either identify or support. It's not on their agenda, and many of us are dealing with the consequences of late diagnosis, because they do not support this.
- Posted by Elaine Jesmer 12/14/09 2:43 PM
I was 37 yrs. old in 2006 when I was diagnosed with extensive dcis of the right breast. I had 2 lumpectomies with bad margines (her2 and er+) followed by a breast m.r.i. that showed the same thing just starting in the left breast. I had a bi-lateral mastectomey and delayed reconstruction 6 months later. This all started with a abnormal mammogram but the m.r.i. showed the truth of what was going on in the left breast also. An M.R.I. saved my life! I was determined to completely rid my of this evil disease. I lost my sister to this same disease 10 yrs earlier and I am not sorry that I had a bi-lateral mastectomey. It saved my life. M.R.I.'s are the way to go, I am shocked at how little certain doctors value them. Shame on anyone who considers cost over patients lives.
- Posted by Andrea 12/15/09 6:40 PM