Breast Reconstruction Decisions

Hester Hill Schnipper, LICSW, OSW-C Program Manager, Oncology Social Work, Emeritus

SEPTEMBER 25, 2018

Mastectomy Patients Deserve Honesty and Full Disclosure about Reconstruction Options

All too often patients don't feel that their voices are heard. Sometimes we are too scared. Sometimes we don't know what to say. Sometimes we are intimidated or afraid of seeming ignorant. Sometimes no one pays attention.

Recently I have been in several very disturbing conversations with women who have recently had breast surgeries at other hospitals. In each case, a woman underwent a mastectomy, or bilateral mastectomies, but awakened to find that the specifics were not what she had anticipated. As you may know, there are several possible surgical techniques, and the choice depends on the particular circumstances of the cancer itself, the patient’s body and request, and the surgeon’s skill and judgment.

These women had carefully considered the options and made the decision to proceed with the surgery and not to have reconstruction. Choosing whether to have reconstruction, and, if relevant, what type of reconstruction is a very private and usually difficult decision. Most women meet at least once with a plastic surgeon to explore the possibilities and then wrestle with what is the best choice. There is no single right answer, and my experience has been that women make the right decision for themselves. Through the years, I have known only two women who regretted what they had done and both were able to alter their first choice. One, who had opted for no reconstruction, went back two years later to have that surgery. The second, who had chosen reconstruction, opted later to have the implants removed and go flat.

The women whom I am thinking about now had all firmly decided and stated that they did not want reconstruction—now or ever. They had discussed this with the breast surgeon and thought that they had been very clear. In each case, when they awakened after surgery, they found that the surgeon had left extra skin, what is called a skin-sparing mastectomy, “in case you change your mind later.” It is important to note that the appearance of a woman’s chest is quite different after a skin-sparing vs. a plain simple mastectomy. The latter, if done skillfully, results in a flat chest with a pencil-thin scar. The former results in pockets of extra skin that hang in several spots and definitely look less trim and tidy.

One of these women sent me this article from CosmopolitanIt includes pictures of women’s chests after surgery with the aforementioned extra skin. As an aside, I find it remarkable that this particular women’s magazine published this story.

 The most offensive remark related to me by one of the women whom I know was from the surgeon when she complained about what had happened. “I left the extra both so you could change your mind and to give you a little cleavage.” Let me promise you that cleavage is the furthest thing from what this looks like. And, even if that were not true, this had not been what the woman wanted.

Going off on a small tangent here, I have recently had a new experience with a woman who had nipple and skin-sparing bilateral mastectomies because she carries the BRCA2 gene. Her issue was not that she awakened to surprises, but that a very big surprise came later. Her breast and plastic surgeons had known that she planned to have more children. A few days after delivery, she began to leak milk from her nipples. No one had mentioned this possibility to her, and, as you can imagine, she panicked. What did this mean? Had too much breast tissue been left behind? Was she at continuing risk to develop breast cancer? And, in the moment, how was she supposed to deal with the issue? This falls into the category of not fully informing the patient about possibilities.

For a number of years, I have talked with breast surgeons about the reconstruction/no reconstruction choice and how to discuss it with their patients. As reconstruction techniques have improved, it has seemed that many surgeons assume that all women will opt for reconstructed breasts. Sometimes the opening sentence is something like this: I am sorry that you do need a mastectomy, but you can have reconstruction at the same time. Shouldn’t it be: I am sorry that you do need a mastectomy, but you have some choices. Some women opt for reconstruction and some prefer to go flat. Both options are just as good medically, and depend on your own preference.

Every woman who needs a mastectomy should be well informed about all of her options. She needs full disclosure, including the risks and the benefits. She needs to see pictures and not just pictures of ideal outcomes. Ideally, she needs a chance to talk with other women who have made a range or choices and to even see a few in the flesh. She needs honesty about the expected recovery and the possible outcomes. Above all, she needs to be heard and supported. 

Have you had a similar experience? Tell us at: http://www.cancercommunity.bidmc.org/