I don’t have much in the way of eyebrows. They were victims of too much plucking back in the 1960’s and when you do that, sometimes they don’t grow back. There’s a very nice woman in Solana Beach who shapes and darkens what I have left, infrequently, when I bother to think about it which isn’t very often. I was in there about a year ago when she told me, “I won’t be at work for the next six weeks or so—I’m having some surgery.” Never shy when it comes to these issues, I asked, “What kind of surgery?” She said, a little too casually, “I’m having double mastectomies and latissimus flap reconstructions.” I said, “Why are you doing that?” She said, “Because I was diagnosed with ductal carcinoma in situ on the left, and I just want them both OFF.” Ductal carcinoma in situ is what we call Stage Zero breast cancer—non life-threatening, but it does need to be treated because in some cases it can progress to invasive breast cancer. Treatment options range from excision only, to excision plus radiation, to simple mastectomy for more extensive cases. In NO case, unless the patient carries the breast cancer gene, BRCA 1 or 2, as Angelina Jolie did, is bilateral mastectomy the recommended treatment.
Again, I said to this nice forty year old woman with no family history of breast cancer, “Did you at least SEE a radiation oncologist for an opinion? This is what I do for a living, you know.” She said, “No, I did not. My surgeon drew me pictures of the procedures, and he said I’d be back at work within a few weeks. This is what I want. I have a six year old son. I do not want to die of breast cancer.” Her mind was made up. In situations like this, I may offer an unsolicited opinion, but here my opinion was clearly not wanted. This was the right choice for her. It’s what she needed for “peace of mind,” and I was not going to stand in her way. She had her bilateral mastectomies, and her reconstructions, and true to her surgeon’s word, she was back at work within six weeks. She was very pleased with, and relieved by her outcome.
There are a couple of problems with this scenario. First of all, my breast cancer treating colleagues and I have noted a somewhat alarming rise in the rate of double mastectomies for unilateral breast cancer in non BRCA positive patients. The rationale for this is typically, “I want to do everything I can to reduce the chance of the breast cancer coming back”, but sometimes it’s “I want a matched set!” What patients are often failing to realize, and are being failed by their physicians in terms of their education, is that the biggest risk they have of actually dying is from the breast cancer they already HAVE, not the breast cancer they might be diagnosed with in the future. Once a woman has been diagnosed and treated for breast cancer, the risk of developing a contralateral breast cancer is about 1% per year, and the vigilance is stepped up accordingly—mammograms are no longer designated as “screening” but rather as “diagnostic”, and MRI’s are more frequently covered by insurance, not to mention the frequent blood work and body scans obtained in more advanced cases.
Second, prophylactic mastectomy and breast reconstruction is neither risk free nor does it often result in a “perfect breast”. Infections can occur, implants can be extruded, flaps can fail, and even if none of these things happen, the resulting reconstructed breast is insensate—in other words, it doesn’t FEEL like a breast to the woman who is wearing it. Even in a skin sparing, nipple sparing mastectomy, the nerve endings are cut. If an abdominal flap is used, the abdominal musculature is compromised—important for women who are athletic and need these muscles. The same goes for a latissimus flap. Not to mention the fact that many woman who are diagnosed with breast cancer are still of childbearing age and many still plan to have children. One can breast feed an infant with one breast, but not with bilateral mastectomies and reconstructions.
So if you have been diagnosed with breast cancer, please think long and hard about your treatment options and about what the goal is, which is to obtain local control of the cancer typically by either removing the breast, or by having lumpectomy and radiation therapy. The “peace of mind” obtained by removing the opposite healthy breast in a BRCA negative patient is not only just a pleasant mythology, but is also potentially dangerous, putting a patient at risk for complications when she needs to be healing and considering the adjuvant therapy, whether that be hormonal therapy or chemotherapy or radiation to the chest wall or affected breast, which will truly reduce her risk of recurrence and extend her life. And we physicians need to remember that principle of “Primum non nocere”—First, do no harm. We don’t remove other paired organs just because one is diseased, and we shouldn’t be doing it with breasts either. In my opinion, of course!
Brava, Miranda!
Miranda,
The point is that is an Individual choice – not all women (or men) are willing to have mammograms any longer – not good for their mental health. Some, like me, had a highly aggressive cancer that was not visible on a mammogram even though it had already spread to a lymph node.
Realistically, do you think a woman in her 40’s is likely to be worried about whether or not she will be able to breast feed or is she more concerned that she not end up with a “surprise” on a future mammogram?
Do you really believe that BRCA us the only test worth considering? What about the genes we have not discovered yet? What about a family with multiple other types of cancer?
As a Family Practice physician, I order several mammograms a day and have at least one woman in my practice who ends up with a breast biopsy every month. Many have had cancer while others have not. Some who have had multiple biopsies want a mastectomy – shouldn’t that be their choice?
As oncotyping is advancing, more women will have radiation or chemo who might benefit from it. Hopefully, fewer will have metastatic cancer that jus “pops up” a few years after their initial treatment. So that means future risk may come more from remaining breast tissue.
You also speak as if reconstruction is the only choice. Many women, myself included, choose no reconstruction and no “Foobs” either. Although BRAVA technique may become the norm within a few years – fewer risks and a little liposuction to go with it!
Your view, like mine, is colored by your experience – but mine comes from both the patient and the physician. Ultimately, women need to be given both information and a choice.
Thank you so much for writing in, and you raise very important points. As I have said in this blog many times, I have the perspective of many years of treating cancer and only cancer, and whenever KevinMD publishes one of my posts, I get very good and very humbling reminders from family practice and internal medicine physicians that my world view can be a bit skewed. One of the points that I did make in this piece is that I NEVER try to talk a woman out of what she feels is best for her, nor did I try with my aesthetician. I only wanted to make sure she was dealing with all of the facts. In her decision making process, the risk of developing invasive breast cancer far outweighed the risk of surgical complications. Where double mastectomy really fails to make sense is in the woman with, for example, triple negative Stage III disease, the opposite end of the spectrum, where the risk of recurrence of the first cancer completely trumps the risk of developing cancer of the unaffected breast. I have seen double mastectomies performed at both extremes, for “peace of mind.” You are completely right that we now know three things: 1. BRCA is not going to be found to be the only breast cancer causing gene 2. Most breast cancers are likely multifactorial, and we’re only now beginning to understand that women can do a lot to mitigate their risks (exercise, maintaining best body weight, reducing alcohol intake, avoiding exogenous hormone replacement post menopause) besides removing the breast 3. Whether a woman lives or dies from her newly diagnosed breast cancer has much more to do with the genetic make up/DNA profile of the actual cancer than even the stage of disease, and we’re only beginning to scratch the surface of that well of information. When I started my career in radiation oncology 32 years ago, I was worried that my field would be obsolete in ten years. Dr. Samuel Hellman, Chief of Radiation Oncology at the Harvard Joint Center for Radiation Therapy patted me on the hand and said, “Not in your lifetime, dear.” I still look forward to the day when cancers are either prevented, or managed on the molecular level, and not with radiation, chemotherapy or even surgery. M
And PS. I would love to hear your perspective on flu shots, if you read my piece from the day before yesterday! M
I am 55 and have decided that I will not be screened again. Contrary to what my doctor thinks, I am not stupid, naive, crazy or suicidal. It truly is a choice and not a public health mandate. I firmly believe that if a woman wants a screening mammogram, then it should be accessible and affordable for her. I just as firmly believe that being screened will not extend my life or improve its quality. I do not live in fear of cancer and I am thrilled to hear a doctor validate my choice.
Miranda – Do you think this is the result you desired when you wrote the article about prophylactic mastectomy?
This definitely needs to be published on Kevinmd.com and I’m sure he will.
I am happy you wrote about this trend. I have been wondering what is going on.
Honestly, you had me at “What patients are often failing to realize…is that the biggest risk they have of actually dying is from the breast cancer they already HAVE.”
It makes me wonder if future cancers will be missed and more harm done as a result of this trendy practice. Thanks for your opinion!!!
Not to mention the opportunity to die during a surgical procedure!!!
I am a surgeon. And I consider myself a good surgeon. BUT I know that nothing is guaranteed when performing surgery.
I am appalled at how little is mentioned, by plastic surgeons in particular, about potential problems.
The lay public blissfully believes that surgery is no big deal and that outcomes are always perfect (and also conform to their preconceived notions of what the results will be). Sadly, many of them are shocked at what transpires.
Tonight was the perfect time to be led to Primum non Nocere. You are a wonderful storyteller, which I hope to become in writing. I have wondered for months about this subject and why my lumpectomy is considered only breast preservation instead of, for instance, safety. I hope you don’t mind if my post tomorrow (already written) mentions your story, the almost magic way I was led to it, and that some people may want to look for it. Thank you for being one of very few to tell this side of the controversy.
\\\
Margaret, I am glad if anything I write helps anyone. I look forward to reading your blog tomorrow. M
I have to share this. It is such important information. Once again thank you.
wow. a simple story about something not so simple, with a powerful punch.
My mother had this done, minus the reconstrction. She has a friend who has gone through repeated rounds of treatment due to recurrances and she was terrified that she’d wind up in the same situation. I can see it from her perspective, and I might well have done the same thing. She just wanted to be *done* with it, and to live without that fear.
Deb, I am glad that she is doing well. This is always a personal decision–my job is to try to make sure that women really understand the facts and statistics. But statistics never apply to an individual, or as we say, an “N” of 1. M
I would like to introduce my readers to an excellent new blog on the genetics of breast cancer. Have a look:
http://thebrcaresponder.blogspot.com/