As Ellen Collins lay on the operating table, her mind beginning to fog over from the anesthesia, the surgeon who was about to perform her double mastectomy offered encouraging words: “I will meet you at the top of Vail Mountain.”
Three years later, when Collins marked the joyous milestone of surviving her aggressive breast cancer beyond the worst danger zone, the surgeon kept his word. Dr. Mehra Golshan and his family did indeed meet her at the top of the mountain to celebrate — and ski down.
That was back in 2013, and Collins remains grateful to this day. She has not a single regret about her double mastectomy and the reconstruction that followed.
“The peace of mind and the quality of life — I feel whole again, I feel complete,” she said. “I can look in the mirror and not feel deformed. I feel proud of myself and I feel healthy — it’s priceless.”
And Dr. Golshan, who is distinguished chair in surgical oncology at Brigham and Women’s Hospital, remains supportive of her choice. But he is also concerned about the trend she represents.
The number of women who have cancer in just one breast but choose to have both breasts surgically removed is rising ever more dramatically. From 2002 to 2012, the rate tripled, according to newly published research that Golshan oversaw.
Among the nearly half a million American women diagnosed with early invasive breast cancer during that time, double mastectomies rose from about 4 percent of patients to over 12 percent. And those numbers pre-date the boost from Angelina Jolie’s 2013 announcement of her own surgery.
Here’s the crux of the problem: For 90 percent of those women, those who lacked a clear genetic risk, the data show that double mastectomies did not improve their long-term odds of survival. That lack of survival benefit has been clear for years, but they underwent the major operation anyway.
“The number one concern for my patients is survival,” Golshan said. “And if I can’t say that removing the opposite breast is going to achieve that, well, is that something a woman should go through? And it’s a very difficult and a very personal decision, but our research is basically showing that if anything, it’s increasing, and not slowing down.”
‘I Don’t Want This Coming Back’
Why would more and more women be choosing an operation that involves a long recovery and carries risks that include recurrent infections, chronic pain and the need for more surgery?
Golshan’s own study offers a major clue: Far more women who have mastectomies are also undergoing breast reconstruction. The rate has risen from 35 percent in 2002 to 55 percent in 2012. Reconstruction itself has been improving significantly, he said.
So for a patient like Ellen Collins, a double mastectomy combined with reconstruction offers a double appeal.
The mastectomy left her feeling like she had done everything she could to reduce the risk of a recurrence, she said. Her children were in kindergarten and second grade when she was diagnosed at age 41.
“In a cancer situation, so much is out of your control,” she said, “but this was one piece that I could say with conviction that I want to do for me, and the main point is, I don’t want this coming back.”
The reconstruction also gave her breast “parity” — so now, in a sales job in which appearance is important, “I feel confidence in anything I wear. I was able to get my life back.”
Also a possible factor: Rising public attention to breast cancer, including celebrities like Jolie who are open about their operations and model good outcomes.
Yet another possible factor: The findings on the lack of a survival benefit don’t make intuitive sense. If your diagnosis shows you’re prone to breast cancer, it seems obvious that removing a breast should lower risk.
But the risk of cancer in the opposite breast is extremely low, Golshan explained, and if cancer does develop there, it will likely be caught early. The greatest danger is cancer coming back elsewhere, in a woman’s lungs or bones or brain, he said.
And then there’s insurance: American health insurance generally covers “contralateral prophylactic mastectomy and reconstruction” — removing the healthy breast and doing a double reconstruction — even though the costs may amount to tens of thousands of dollars more than less involved options.
‘It’s Medically Unnecessary, But It’s A Choice’
So with all the factors in favor of preventive mastectomies, why all the concern from Golshan and other cancer specialists? Continue reading