Dr. Cecilia Ford, who has been a psychologist in private practice in New York City since 1987, has addressed emotional issues for us in many articles over the years. Here, she counsels a woman diagnosed with the BRCA1 gene who is understandably daunted at the prospect of a double mastectomy.
My mother and her sister both had breast cancer before menopause. There were no genetic tests then. They both had a single mastectomy and very bad reconstruction, and were so ashamed of their bodies after this. My mother died of her breast cancer when she was 50, but I think she died of shame.
I am 45 and finally had the BRCA testing. I am positive for BRCA1 and have been advised to consider having bilateral mastectomies, even though I do not yet have a diagnosis of cancer. I am ashamed to say that I am more fearful of the results of the reconstruction than I am of just taking my chances. I have a great relationship, and it is a very sexual relationship. My husband loves my breasts. I don’t want to do anything to take away the really exciting sex life we have. I know he loves me and that I am probably worrying about him when I should be sorting out my own emotional issues . . . but I enjoy the sexual arousal that my breasts bring to my own experience.
I have not told him that I had the genetic test, and I certainly have not told him what the surgeon told me to do. The surgeon suggested that I speak to a therapist, since I just went nuts in his office after this recommendation. He was very kind about it all, but said that I might benefit from some counseling so that I could “get my priorities straight.”
Dr. Ford Responds:
I have to agree emphatically with your surgeon that this is a time to pause and think through your options very carefully. You are faced with a decision that is quite literally a matter of life and death. The fear and bewilderment that anyone would feel when told that they have such a hugely increased risk of cancer, as BRCA1 and BRCA2 carriers do, is heightened in your case by the traumatic history of your mother’s illness.
It sounds as if your mother had the worst possible outcome—i.e., a mastectomy, followed by poor reconstruction, ending in an early death despite her treatment. Your account indicates that the experience was emotionally devastating as well as medically unsuccessful. It’s easy to see why the discovery that you may be facing breast cancer would be causing you such extreme distress. Nevertheless, you must try to overcome your reaction in order to keep your judgment clear at this important time.
Things have changed a great deal in recent years in many aspects of breast cancer treatment. Indeed, one of the most significant advances is the discovery and identification of the BRCA genes and genetic testing, which have allowed us to offer preventative treatment to women like you who are at high risk for breast cancer. An article in the Journal of the American Medical Association in 2010 said that the procedure of “prophylactic mastectomy substantially reduces risk in women with BRCA1 and BRCA2.” Risk without the procedure can be in the high 80s; with it, risk can be reduced to fewer than 5 percent.
What this means for you is that, unlike your mother, if you have the mastectomy you will be unlikely ever to develop cancer, and thus will be healthy as a result of the intervention. Your mother’s mastectomy came “too late” to save her life. But you are wondering if your procedure is coming “too early.” Should you perhaps take your chances, since you don’t have cancer yet, and you may not develop it at all? Furthermore, you worry about the impact of losing your breasts on your self-image and your sex life.
Here’s the point at which you must be particularly careful to take time, and perhaps consult a therapist. Most women do feel as you do when faced with the loss of a body part, especially one that is tied so inextricably to your sense of yourself as a woman and a wife. Your mother, who you think “died of shame,” clearly never recovered her sense of herself as a beautiful, sexual woman after her surgery, and your identification with her runs deep. But you must be careful to recognize the differences between the two of you as well as the similarities. Angelina Jolie, who made global headlines last week when she revealed that she has had a prophylactic double mastectomy, wrote in The New York Times that “there have been many advances in reconstructive surgery in the past few years, and the results can be beautiful.” Surgeons can not only reconstruct breasts to look similar to your own, but are able to preserve some of the sensation through procedures such as nipple sparing (which Ms. Jolie elected to have). Meanwhile, husbands and partners (not led by, but joined by, Brad Pitt) have gone through a continual “consciousness raising” which has led to a much more supportive and encouraging atmosphere than when your mother was facing this.
Most important, of course, is that you don’t want to preserve your current happy sex life at the expense of life itself. Your fear of the future, informed by the trauma of the past, may be enough to push you to make an overly risky decision. As you weigh the odds, you need to make sure you get the various threads of this issue sorted out so you can proceed as rationally as possible, remembering that if your mother had been given the choice that you have, she might still be with you today.