By HESTER HILL SCHNIPPER, LICSW, Manager of Oncology Social Work at the Cancer Center at Beth Israel Deaconess Medical Center in Boston, Massachusetts

It’s been two years since Angelina Jolie Pitt had a double mastectomy surgery to remove her breasts and just weeks since she had an oophorectomy surgery to remove her ovaries. “The Angelina Effect” continues to influence critical decisions among women with breast cancer. Jolie Pitt’s recent New York Times opinion piece stressed that every woman must make her own decision with the guidance of her doctors. Her choices were bold—and not for everyone. As an oncology social worker for 35 years and breast cancer survivor, I urge all women with or at high risk of cancer to take time to understand the facts, process their emotions and make the decisions that are best for them.

Operation, Surgery, Mastectomy, OR, Operating Room,

Credit: iStockPhoto

Jolie Pitt, whose mother died of breast cancer, carries the BRCA1 gene mutation. According to Jolie Pitt, her gene mutation gave her an 87 percent chance of developing breast cancer and a 50 percent chance of developing ovarian cancer. She chose to have a preventive double mastectomy and reconstruction in 2013 and an oophorectomy in 2015.

She delayed this second surgery due to reluctance to catapult her body into menopause. This is a concern for many women and, no doubt, a bigger concern for a public figure known for her physical beauty. But women need to know that menopause—whether natural, surgical, or chemical—isn’t always a terrible experience. Many women don’t miss their monthly menses, and not all experience intense hot flashes or other distressing physical changes.

Since Jolie Pitt announced her mastectomies, more and more women have been tested for the BRCA1 and BRCA2 mutations; many have opted for preventive mastectomies to reduce their risk of developing breast cancer, including women whose doctors have said the surgery won’t increase their odds of survival over a combination of lumpectomy (surgery in which only the tumor is removed) and radiation. Even before Jolie Pitt’s announcement, this trend had already begun: the percentage of women diagnosed with early-stage breast cancer in one breast who opted for double mastectomies rose from 5.4 percent in 1998 to almost 30 percent in 2011.

While much has been written about this trend, I am sharing my observations at Beth Israel Deaconess Medical Center in Boston, where, as Manager of Oncology Social Work, I have worked with breast cancer patients for over 35 years. I have had two breast cancers myself and been treated with surgery, radiation, chemotherapy and hormonal therapy. I have a unique perspective on the struggles and choices of women with cancer. I know a few women who, without a cancer diagnosis, tested positive for a BRCA gene mutation and chose to have surgery. I suspect they may have been even more influenced by Jolie Pitt than those who actually have cancer and need surgery.

Naturally, all people diagnosed with cancer are anxious and afraid. They are concerned about their children, and they may not think clearly during a stressful time and in the face of huge decisions. Some women, including those who carry a gene mutation, have a medical reason to proceed with double mastectomies. Many women, however, reach decisions based more on fear and inadequate information. The choice regarding lumpectomy and mastectomy and double mastectomy brings lifelong consequences. Once surgery is performed, you can’t undo it.

Having lived most of my life with two breasts and the last 10 years with one, I can say it’s better to have breasts than not. Of course, the most important thing is being alive, but fear often muddles the facts. Many of my patients express fear about recurrence and survival, but they also talk about ongoing stress, thinking it may be easier to remove both breasts than to face annual mammograms and MRIs. While it may seem the anxiety will never diminish, it’s rarely true.

I always support a woman’s right to make choices. I often talk to terrified, newly diagnosed women about the need for decisions that will help them sleep. I also remind women that they can proceed with a lumpectomy and radiation and, if anxiety persists, have a mastectomy in the future. I have never known a woman who chose the latter. As time passes, the fear diminishes, and life typically resumes a normal rhythm.

Yes, excellent breast reconstruction and plastic surgeons are available. But a reconstructed breast is not a perfect substitute for a natural one. There are scars, little or no sensation, and surgery. And while most women say they’re satisfied with their reconstructed breasts, some wish that they had considered all of their choices.

Having cancer is a big deal. So are having a mastectomy and having reconstructive surgery. Each woman must think carefully and choose what’s best for her, but only after consultation with her doctors. The Angelina Effect should be part of the conversation, but it shouldn’t be overstated. Breast cancer is rarely a medical emergency, and women can and should take time to educate themselves, process their feelings, and make the best decisions.

Above content provided by Beth Israel Deaconess Medical Center. For advice about your medical care, consult your doctor.

Posted May 2015

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