The cost of peace of mind: A case of unneeded bilateral mastectomy

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 40-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 6-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.

Miranda Fielding is a radiation oncologist who blogs at The Crab Diaries.

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