When a patient came to Dr. Donna M. Pinelli for treatment of ovarian cancer, Pinelli ordered genetic testing that revealed a high hereditary risk affecting not only the patient but potentially her family members as well. As a result, other family members received testing, revealing several relatives at very high risk for breast and ovarian cancer, which led to the patient’s daughter to opt for risk-reduction surgery to remove her uterus, ovaries, and fallopian tubes to lower her own high risk of cancer.

That daughter “had a pre-cancerous lesion in her fallopian tube, which is very rare to find,” recalls Pinelli, medical director of gynecologic oncology and the Walsh Robotic Surgery Program at The Anderson Family Cancer Institute at Jupiter Medical Center. Because of the testing and preventive surgery, the patient’s daughter was able to stop her own cancer before it developed.

Dr. John Rimmer, medical director of the Comprehensive Breast Care Program at JMC’s Margaret W. Niedland Breast Center, has similar stories about treating women in their 30s for breast cancer. “It is very upsetting for me to see a patient a year later than I should have seen her,” Rimmer says. Often, their immediate family members had cancer around their same age, and preventive surgery may have saved these patients from not only breast cancer, but the chance that it could spread and become fatal.

The message from both doctors: if you have close family members with cancer, consider genetic testing to learn if you have a genetic mutation that increases your risk for certain cancers. This may be particularly helpful if a family member develops cancer at a young age—in their 20s—though a genetic counselor can aid in deciding what age is best for testing to balance possible psychological impacts with the potential benefits.

For women with a mutation in the BRCA1 or BRCA2 gene, more than 60 percent will develop breast cancer in their lifetime, according to the National Cancer Institute. For ovarian cancer, the risk is above 39 percent in women with a BRCA1 mutation and over 13 percent in women with a BRCA2 mutation. The typical lifetime risk of ovarian cancer is about .4 percent.

The earlier you understand your risk, the more options you may have to prevent cancer. But preventive surgery is a big deal, so how can you make your decision?

Lowering Breast Cancer Risk

First, understand that surgery isn’t the only way to reduce your risk of breast cancer. Rimmer says three options for breast cancer prevention include medication, frequent screenings, and risk-reducing surgery.

The medication option—tamoxifen—is a hormonal therapy that reduces the risk of breast cancer by up to 50 percent. However, side effects can include menopausal symptoms, which Rimmer says patients sometimes prefer to avoid.

Increased surveillance, another alternative, involves screening with a mammogram and ultrasound alternating with magnetic resonance imaging (MRI) every six months. This approach doesn’t prevent cancer but can detect it early. One of Rimmer’s patients knew she had a BRCA mutation but was indecisive about undergoing preventive surgery. “Then she came in one day and she had breast cancer,” Rimmer says. At that point, patients like her may need surgery as a therapeutic—rather than a preventive—procedure, in addition to radiation, chemotherapy, and endocrine therapy.

The third option, preventive surgery, removes all breast tissue through a double (or bilateral) mastectomy. Removing both breasts lowers the risk of breast cancer by approximately 95 percent in women with BRCA mutations and up to 90 percent in women with a family history of breast cancer. “We don’t say zero, but we say [the risk is] effectively very nearly zero” after a bilateral mastectomy, notes Rimmer, adding that it’s the most effective preventive option.

The surgery can cause difficulties. Breasts are “not just another part of the body; we’re talking about issues of body image, femininity, and sexuality—a lot of complicated areas,” Rimmer says. Physically, a bilateral mastectomy eliminates the ability to breastfeed and can result in sensation loss as well as potential issues with preserving blood supply to the skin, among other complications. Finally, with post-surgical breast reconstruction, issues with implants may surface years later that require additional surgery to correct.

The surgery may also have associated risks along with a recovery period. A bilateral mastectomy requires an overnight hospital stay and around six weeks for a full recovery, with potential risks of infection.

Lowering Ovarian Cancer Risk

Ovarian cancer ranks as the fifth-leading cancer-related cause of death among women in the United States and is usually discovered at an advanced stage when it’s difficult to treat. Unlike for breast cancer, there are currently no approved, effective screening options for ovarian cancer. In addition to the potential for false positives, timing is a factor. “If you have an ultrasound every year, you could develop cancer two months after…and then end up still having an advanced cancer,” Pinelli says.

Taking steps like using hormonal contraceptives can reduce a woman’s risk of ovarian cancer, though it may increase the risk of breast cancer. According to Pinelli, however, preventive surgery is currently the most effective option for lowering the chances of ovarian cancer in high-risk people.

A bilateral salpingo-oophorectomy—the standard preventive surgery for ovarian cancer—removes both the ovaries (the organs that produce eggs and hormones) and the fallopian tubes (which transport eggs from the ovaries to the uterus). Research indicates that the procedure may reduce the occurrence of ovarian cancer by around 80 percent in people with a BRCA mutation, with the potential added benefit of lowering the risk of breast cancer by around 50 percent. Following guidelines for preventive surgery at certain ages—35 to 40 for women with BRCA1 and 40 to 45 for women with BRCA2—can also help reduce ovarian cancer risk.

Because ovarian cancer often develops in the fallopian tubes, Pinelli also highlights an alternative surgical procedure called a salpingectomy that removes the fallopian tubes while leaving the ovaries. This procedure reduces ovarian cancer risk while avoiding side effects like early menopause that occur with the traditional procedure. However, more studies are needed to assess the risks and benefits, particularly in people with high genetic risk.

Both preventive procedures can be performed laparoscopically through a small incision, making them minimally invasive. While there’s still a risk of infection, patients often return to most normal activities a week or two after surgery.

Removing the ovaries through the standard bilateral salpingo-oophorectomy may have significant medical consequences. Women will no longer be able to ovulate to become pregnant, and the loss of hormones leads to early menopause. This can cause side effects—including hot flashes, sleep disturbances, and difficulties with sexual functioning—that are often more dramatic than with natural menopause. “Having the ovaries removed at a young age can be a drastic change because of the abruptness of the hormone withdrawal,” Pinelli explains. While hormone replacement therapy may relieve symptoms, not all women are eligible for it.

Beyond uncomfortable symptoms, research has revealed that removing the ovaries before natural menopause may shorten a woman’s lifespan—even as that risk is balanced against the chance of developing cancer. “This is where it becomes very nuanced,” Pinelli says. “There are so many variables to consider.”

Different Risks and Considerations

The risks and benefits of surgery are relatively straightforward for individuals with gene mutations and the highest risk of cancer. For those without a mutation but with a clear risk based on family history, the conversation about surgery can be more complex. “It’s a risk-benefit ratio,” Pinelli says. “We all have to make that decision ourselves as to how we want to counsel our patients.”

The knowledge and experience of women who have a strong family history of cancer can be stressful. “It’s always at the back of their mind—they’re worried about whether they should do something about it,” Rimmer says.

Both doctors recommend getting genetic testing to help determine your risk and talking with a gynecologist or breast surgeon. Resources such as the Foundation for Women’s Cancer and online risk assessment tools may also help. Books such as Resurrection Lily, written by one of Rimmer’s former patients, answer questions while showing that newly diagnosed patients are not alone.

If you do choose one or both surgeries, Jupiter Medical Center is among just 30 percent of cancer programs in the country with accreditation from the Commission on Cancer. It was also the first hospital in Palm Beach and Martin counties to achieve accreditation by the National Accreditation Program for Breast Centers.

JMC offers gynecologic oncologists, which Pinelli says is an important consideration for high-risk patients who may have undiagnosed cancer at the time of their surgery. “We have experienced pathologists at Jupiter Medical Center that perform a lot of risk-reducing surgeries,” Pinelli says, so residents in the region don’t need to travel out of the area for expert treatment.

When deliberating over options, “It’s important for women to analyze and know exactly what their risk is for these types of cancers,” notes Pinelli. “If they are at higher- than-average risk, they also have to balance that with whether or not reducing the risk of cancer is worth the side effects.”

Surgery is a risk—but for some women, it’s a lifesaving one. “We don’t get the opportunity to prevent breast cancer in the vast majority of women, but being able to identify these women gives us the opportunity to likely prevent their breast cancer just with surgery,” Rimmer says. “The option to stop them getting breast cancer is a big weight off their shoulders; it transforms them. It’s a powerful thing.”