Bilateral Mastectomies and Peace of Mind
With only a little stretch, this could be considered a companion piece to yesterday's entry about the value of experience in parallel with the newest knowledge. The larger topic on the table is the need to address peace of mind in addition to the specific medical issues. I often suggest to women that, in making a tough decision, one factor will be considering what choice will help them sleep at night, both now and five years from now. Another perspective is identifying the worst possible outcome (and the answer to that is surprisingly variable) and then doing whatever is necessary to avoid that possibility.
This comes up frequently when women are making surgical decisions and, if they fall in that difficult gray area, decisions about whether to take chemotherapy. Let's focus on the surgical decisions--meaning the choice of a single or bilateral mastectomies when the surgeon's recommendation is that neither is medically necessary. There surely are times when the surgeon tells you that a mastectomy, or two, is the correct decision. This can happen when a tumor is very large, if the tumor is multi-focal so that it isn't possible to do several lumpectomies and leave enough breast, if a woman has already had radiation to that breast and now has a local recurrence or a second primary, and is sometimes suggested if she carries a positive gene mutation (generally the BRCA1 or BRCA2 gene). The first three reasons are pretty straight forward--even if we don't like hearing them. The decision for a gene positive woman is more complicated as there is usually a second option of careful monitoring after treatment for the known breast cancer.
Then there are women who fall into none of these categories, but choose to have bilateral mastectomies because they "don't want to have to deal with breast cancer again." This reason can be stated in different ways, but that is generally their bottom line. Surgeons often will push back if this is the stated reason as they don't like to remove a healthy breast and want to be sure that the woman clearly understands the situation. The situation medically is that the risk of dying is hardly ever reduced by taking both breasts. The risk of death is related to the known breast cancer, the possibility of metastatic spread. The risk of that happening is almost always much greater than the risk of developing a second breast cancer in either the same or the other breast.
After years of conversations and thoughts about this, I continue to fully support whatever decision a well-informed woman makes. Notice the bold type: Although no one, in the midst of the panic of diagnosis, wants to think about every being in this spot again, it is imperative that we understand the realities. Those realities include both the data and the numbers and the risks and our own psyches. We know ourselves very well, and if, after thorough consultations and conversations and thought, a woman believes that she takes the best care of herself by having bilateral mastectomies, that is the right decision for her. My experience has been that we do all make the right decisions for ourselves, no matter how hard we struggle in the making.
This is an excellent piece from JAMA about the necessity of paying attention to a woman's quest for peace of mind in addition to the medical facts. Here is an excerpt and a link to read more:
Contralateral ProphylacticMastectomy for Breast Cancer: Addressing Peace of Mind
The likelihood of a second primary breast cancer is much lower than the risk of distant metastases or death
except in a small subset of women who are at particularly high risk, such as those with BRCA mutations. For
example, a Surveillance, Epidemiology, and End Results study of 107 106 women treated for unilateral
breast cancer between 1998 and 2003 showed that the cumulative incidence of contralateral breast cancer at 7
years in patients younger than 50 years with ER positive stage I and II cancers was 0.5% compared with
a breast cancer–specific mortality of 6.8%. For ER negative women, these figures were 0.9% and 13.5%.6
Thus, the removalof the unaffected breast does not confer additional benefit with regard to distant disease free survival in patients at average risk of a second primary breast cancer. For this reason, current guidelines support consideration of removal of the unaffected breast to reduce the risk of a second breast cancer and improve theoverall likelihood of distant disease-free survival in patients who are at high risk of second primary (ie, BRCA-positive) breast cancer.
However, few women who undergo CPM are in the recognized high-risk groups.