Why Cancer-Free Women Are Choosing to Have Their Breasts Removed

“I could tell that it was something that gave me a little anxiety that I could get rid of if I had the surgery.” (Illustration: Erik Mace for Yahoo Health)

When Tracy Hafen, a healthy mom from New Jersey, turned 40, she started to consider surgery to remove her breasts.

Hafen didn’t have breast cancer, and she didn’t know if she had the BRCA gene mutation that’s well known to increase risk. But her father had developed cancer around that age, and she had already had a brush with Hodgkin’s lymphoma a year before (though it mysteriously resolved itself). Her mother and maternal aunt were also breast cancer survivors. And Hafen had dense breasts, which makes reading mammography more difficult and is known to increase breast cancer risk.

She had believed with frequent screening, she could catch any potential breast cancer early and receive treatment. But her mother’s arduous suffering post-cancer treatment convinced her that surviving cancer is different from fully living — clinching her decision undergo preventive bilateral mastectomy and breast reconstruction at age 44 to reduce any potential risk of breast cancer.

“She was talking about how she couldn’t play the piano very well because her fingers still are numb from the chemo that she had,” Hafen tells Yahoo Health. “Her statement was, ‘Chemo is not a good answer to breast cancer and [do] whatever you can do to prevent it. It does permanent damage to you.’”

Tracy Hafen underwent surgery to remove her breasts at age 44 due to her family history of cancer. (Photo courtesy of Tracy Hafen)

Hafen is just one of the increasing number of cancer-free women who are opting to undergo preventive bilateral mastectomy, says Harold Burnstein, MD, PhD, senior physician and breast oncologist at Susan F. Smith Center for Women’s Cancers at Dana-Farber Cancer Institute. Even though research suggests that survival rates are the same for breast cancer patients choosing lumpectomy (breast conserving surgery) with radiation and those choosing mastectomy, the ultimate decision for preventive surgery lies with the patient.

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“Do you value the normal, healthy breast tissue for all the things it does in a way that feels whole and important such that you want the surveillance,? he asks rhetorically. “Or would you sleep better at night knowing that you’ve taken the surgery as a way to reduce your risk of being diagnosed with breast cancer? No one can answer for any given woman what the right choice would be.”

Here’s what the data says: Preventive bilateral mastectomy drops breast cancer incidence by 90 percent in women with a strong family history of breast cancer, according to the National Cancer Institute. Twelve percent of women in the general population have a lifetime risk of developing breast cancer. Together, inherited harmful BRCA1 and BRCA2 gene mutations are responsible for 20 to 25 percent of inherited breast cancers and 5 to 10 percent of all breast cancers.

While BRCA mutations get most of the buzz, they are just two of 15 to 20 other breast cancer-linked genes. There are tests for these other genetic mutations. However, Burnstein says doctors initially focus on testing for BRCA1 and BRCA2 because they are the most common and have by far the highest lifetime breast cancer risk among them all.

But Hafen didn’t undergo BRCA testing before she ultimately decided to undergo preventive mastectomy.

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“[The doctors] said if you test negative for the BRCA that it does not mean that you don’t have one of the other [genes]. But what it does mean is that insurance will likely not cover the mastectomy if you have the test done and it is negative. However you will qualify right now just based on family history,” she says.

A Swiss study shows that the underlying cause of more than 70 percent of the familial breast cancer cases still remains unexplained.

Hafen says she believed having the surgery would free her from the cloud of worry hovering over her. “I did self-exams every shower. Every time I put on deodorant I was wondering if I was increasing my risk of breast cancer,” she says. “I could tell that it was something that gave me a little anxiety that I could get rid of if I had the surgery.”

For many women with a strong family history for breast cancer but don’t have BRCA mutations or who don’t know their status, surveillance with mammograms, physical exams, and MRI are often used, Burnstein says. “But intensive surveillance commits the patient to a lot of evaluation. That procedural focus makes people not want to go through it,” he adds. “People are pretty good when you give them the important information and background facts at choosing what feels right for them. I think that’s an important message that you can reassure people on either side of the decision.”

It’s now been more than a year since Hafen underwent her preventive surgery. A fitness trainer, she says the hardest part has been her loss of function in her chest as a result of having her pectoral muscles removed. And while her worries about breast cancer have resolved, other concerns remain. “If you are a person who is going to worry about cancer, you are likely going to keep worrying about it even if you have taken care of one kind,” she says. “I am glad I did it, but I wouldn’t say that the anxiety about cancer in general has gone away.”

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