May 15, 2013— -- Rachel Joy Horn's breasts were ticking time bombs. She lost trust in her body and no longer felt comfortable in her own skin.
This is how she felt, she said, when her doctor broke the news to her that she'd tested positive for a gene mutation that put her in the high-risk category for developing breast cancer. So at the age of 21, Horn chose to undergo double-mastectomy surgery to remove both her breasts and, hopefully, the future threat of cancer.
"By the time I was tested, my mom had gone through breast cancer twice so I already had it in my mind that surgery was a possibility for me," the Los Angeles woman, now 23, said.
Horn is certainly not alone in her decision. Stars like actress Christina Applegate, talk-show host Sharon Osborne and, most recently, Oscar-winner Angelina Jolie have revealed that they, too, have chosen to preemptively removed their breasts because of a strong genetic predisposition for breast cancer.
It sounds like an extreme choice but a woman who has inherited a harmful mutation of either the BRCA1 or BRCA2 gene is about five times more likely than average to develop breast cancer and up to 40 percent more likely to develop ovarian cancer, according to the National Cancer Institute. Experts increasingly believe that removing as much breast tissue as possible can be a lifesaving strategy.
As Dr. Mehra Golshan, director of Breast Surgical Services at the Dana-Farber Cancer Institute and Brigham and Women's Hospital in Boston explained it, "For women who know in advance there is a good chance they will develop breast cancer sooner or later, having prophylactic surgery can make sense. It lowers the risk of developing cancer by more than 90 percent."
In one recent study that followed nearly 2,500 women who carried one of the two dangerous gene variants, having a double mastectomy did appear to lower their risk of breast cancer. None of the women who opted to have their breasts or ovaries removed were diagnosed with breast cancer in the three decades they were followed, while 7 percent of those who chose not to have surgery were.
Horn said that removing her breasts gave her the sense that she had dodged a bullet.
"I remember waking up after surgery and feeling groggy but happy," she recalled. "I immediately felt relieved that I no longer had this cancer diagnosis hanging over my head."
But even though the data show a preemptive strike against breast cancer can improve the chances of survival in women with inherited risk, some medical experts are concerned that instead of fighting to save their breasts as they did in the past, many women are choosing to remove them at the slightest whiff of cancer.
The Journal of Clinical Oncology reported a 188 percent jump in the surgery between 1998 and 2005 among women given a new diagnosis in one breast of ductal carcinoma in situ, or DCIS, the "stage zero" cancer. Among women with early-stage invasive disease, the rates soared more than 150 percent.
"Many women choose to have other breast removed to avoid the trauma of going through breast cancer again even though, in reality, the chances of reoccurrence are very low," said Dr. Julian Kim, chief, of oncologic surgery at the UH Seidman Cancer Center in Cleveland.
Kim stressed that there is no evidence to support the idea that removing both breasts after a diagnosis of breast cancer increases survival rate. And indeed, one recent University of Michigan study found that 70 percent of women who had both breasts removed following a breast cancer diagnosis did not get any benefit from the procedure because their risk of developing cancer in the healthy breast was no greater than in women without cancer.
"For a woman with a gene mutation or a family history, the surgery makes sense," Kim said. "For most other women who are opting to have it, it is very controversial."
Kim said that breast cancer survival is less affected by how much of the breast tissue is removed than by how aggressive the cancer is and how much it has spread at the time of surgery. If the disease has spread into lymph nodes and the blood stream by the time of surgery then removing more breast tissue will not affect a patient's outcome, he noted.
But Kim said he does understand why a low-risk patient might opt for a mastectomy.
"In my mind, if a patient is well informed about risks of having or not having the surgery, it's often more than just survival that influences a person's decisions," he said.
And even when it's a proven cancer-avoidance tactic, Horn said the decision to remove your breasts is not an easy one.
"I wasn't sure if my breasts would ever feel like mine again or how my future boyfriends would feel or if I would feel like I was lacking in any way," she said.
Her doctor told her she could monitor her health with frequent screening to put off the surgery but ultimately Horn felt it was the only choice she could make.
"Ultimately, I had no second thoughts because with my mom having cancer, I had played out the numbers in my head and knew what I had to do," she said. "I have no regrets. And I really like my new breasts."