Few events in life are scarier or more stressful than major surgery. Even tougher may be the decision to go under the knife preventively, before a diagnosis is made.

When actress Angelina Jolie told the world two years ago that she’d had preventive surgery to remove her breasts, she received an outpouring of support. She had an estimated 87 percent chance of developing breast cancer, and Jolie wrote in a New York Times op-ed that she made the decision to be there for her family as long as she could.

The reason she wrote about it, however, was to empower women who were faced with a similar choice. The notion of preventive surgery sometimes is not easy to grasp, but it’s an option for women at high risk for breast cancer that’s becoming more mainstream.

Brittany’s Decision

Brittany Henderson, a 27-year-old office manager in Lexington, North Carolina, had to make the same decision. She tested positive for the same cancer-associated gene mutation, BRCA1, as Jolie. Like the actress, Henderson had a strong family history of breast cancer and the BRCA1 mutation.

Like breast cancer, the BRCA mutations also increase a woman’s lifetime risk of ovarian cancer, but how much depends on family history. About 10 to 15 percent of women with ovarian cancer and 5 to 10 percent of women with breast cancer have the genetic tendency toward them. The more women in a family with BRCA mutations who have developed cancer, the higher the risk for their female relatives.

Undergoing the genetic test for the BRCA1 and BRCA2 mutations was Henderson’s aunt’s dying wish for all the women in her family. She died of ovarian cancer in October 2011.

“I fought daily with being tested for years prior to her death, but in March of 2012, I finally did it, against my family and a few of my friend’s wishes,” Henderson says. Not knowing, she says, was harder than the thought of being positive for one of the mutations.

When test results were positive for BRCA1, Henderson didn’t immediately decide to have preventive surgery. But when she found a lump in one breast during a shower check two years later, fear set in and she had a battery of imaging exams. The lump was benign, but the scare was enough to start Henderson down the road to a bilateral preventive mastectomy surgery.

Still a Rare Choice

Preventive mastectomies are uncommon, but it’s hard to know exactly how uncommon they are. “There is no current literature on the rate of BPM in the past five years,” says Dr. Nimmi S. Kapoor, a breast and thyroid surgical oncologist at BreastLink, a breast health clinic in the greater Los Angeles area. “However, we speculate that it is slightly increasing with the increased awareness of risk in the recent decade.”

And the surgery is very effective. According to the National Institute of Cancer, BPM reduces risk of breast cancer by 90 to 95 percent in high-risk women.

But BPM isn’t the only type of preventive breast surgery. “What we do know is that there is a big trend towards increased contralateral prophylactic mastectomy,” or removing both breasts for breast cancer in one breast only, Kapoor says. The highest increase in that type of prevention is among young Caucasian women, she adds, while the decision to remove only one affected breast is declining in popularity.

It’s not something surgeons go into lightly. “We try to steer patients away from this route if there is no clear benefit,” Kapoor says. For her to recommend preventive mastectomies, the lifetime risk of developing cancer has to be at least 20 percent or more. She recommends BRCA testing to confirm risk and preliminary MRIs to ensure there are no existing lesions and that the surrounding lymph nodes are healthy.

“I always want to make sure I understand what the patient perceives her risk to be,” Kapoor says. “Several studies have shown that women regularly overestimate their lifetime risk of breast cancer. Education is key.”

Precision Medicine Paving the Way

Doctors don’t always know when there is a clear benefit to preventive surgery, but a new phenomenon in the medical field is looking to change that. Treating patients’ illnesses based on their genetic profile and specific medical history is known as precision medicine.

“Genetic testing is rapidly evolving, faster than we can establish guidelines for management with all the new gene tests available,” says Kapoor, but the outlook is still good. “If we can figure out which genes lead to the most dangerous cancers, we can truly tailor preventive surgery,” which is the ultimate goal of precision medicine in general.

Even without precision techniques, the prognosis is good for the entire population of at-risk women. ” Treatment for cancer and survival from breast cancer has greatly improved over the past several decades,” Kapoor explains. “The chance of someone dying from breast cancer today is much lower than for someone diagnosed 30 years ago.”

Is It Right for You?

Even for women at very high risk for developing cancer, surgery isn’t an easy choice. After all, it is surgery, and mastectomies are not minor procedures. With them comes all the stress, pain, time off work to heal, risk of complications and financial costs of any major surgery.

Kapoor always makes sure her patients have a good, solid support system, whether it be their family and friends or the BreastLink group. “In addition, I have all patients contemplating preventive surgery meet with at least one plastic surgeon to understand their reconstructive options,” she says.

Women often have trepidation over losing their breasts, even if their risk is very high, because breasts help define femininity for many women. Reconstructive surgery using breast implants is an option for those women, though the implants may need to be replaced down the road. Some women choose tissue flap reconstruction, which uses grafts of the woman’s own tissue to give the appearance of breasts. Still others choose to forgo breasts altogether.

“For young, healthy women like Angelina Jolie, nipple-sparing mastectomy is an excellent option, and I want to make sure patients have these options presented to them” by more than one physician, Kapoor says. That type of surgery allows for reconstructive implants with the patient’s original nipple.

Henderson also chose reconstructive implants and says she feels better about herself than before. “This surgery has empowered me beyond words,” she says, and she’s not alone.

“The good news is that 80 to 85 percent of patients who undergo this procedure are very happy with their decision and would do it again,” Kapoor says. “That reassures me, and I think it reassures my patients who are good candidates, too.”

Henderson shares her story openly on her Facebook page to empower other women who may be struggling with a similar choice. Having never had cancer, she calls herself a pre-vivor, rather than a survivor.

“I urge you to do your homework. Research until you can’t look at words anymore,” she says. “Make sure you love — not just like — your surgeons and physicians. Do not settle for less than fair treatment, and most of all, never let anybody tell you what to do with your body,” Henderson adds.

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Surgery to Prevent Breast Cancer: When and Why originally appeared on usnews.com