For Sarah, a 43-year-old New Yorker, the choice was stark.
Sarah doesn’t have cancer. But after watching her mother battle cancer and learning more about her family history, she decided to seek genetic counseling. Sarah’s family carries genes for Lynch Syndrome, placing Sarah at risk for developing a variety of cancers, including cancer of the reproductive organs.
A mother of twin girls, Sarah was done having children but still had to go in for preventative cancer screenings every six months. “When I went for those checkups, it was hugely stressful every time I went,” she told Healthline. “Every time, I wondered if this would be the visit when I heard I had cancer.”
Finally, Sarah decided to take matters into her own hands. “I'd already had kids, and every woman in my family had had a hysterectomy at some point,” she said. “I figured I'd rather take control and do it on my own terms.”
Dr. David Fishman, Sarah’s gynecological oncologist and Director of the Division of Gynecologic Oncology at Mount Sinai Medical Center, urges people with a family history of cancer to go in for genetic counseling. Reproductive cancers are often part of cancer syndromes, like Lynch Syndrome, which place women with cancer and their families at higher risk for developing other cancers.
According the Ovarian Cancer National Alliance, only 15 percent of ovarian cancer cases are diagnosed while the cancer remains confined to the ovaries, when five-year survival rates are around 90 percent. Two-thirds of cases aren't diagnosed until the disease has spread throughout the body, lowering survival rates to around 25 percent with years of aggressive surgery and chemotherapy. Ovarian cancer is the fourth leading cause of death among American women.
Ovarian Cancer: Everybody’s Problem
Genetic counseling may offer a way for doctors to predict who is at risk for developing certain cancers long before symptoms are present.
Ovarian, endometrial, and uterine cancers can only affect women, but a history of these cancers in a family with Lynch Syndrome could indicate a risk of colon cancer or urinary tract cancer in the men of the family. The reverse is also true.
“If you have a family of men with colon cancer, it doesn't mean it's a colon-cancer-only family,” explains Fishman. “Family history is the most important thing to identify women at risk, but also men. Men can pass the mutation on to their children.”
Other cancer syndromes include Cowden Syndrome, which can cause breast cancer, endometrial cancer, and thyroid cancer, and the infamous BRCA gene cluster, which prompted Angelina Jolie to get a preventative double mastectomy earlier this year.
Prevention vs. Early Detection
However, even with the best genetic counseling available, only about 10 percent of ovarian cancer risk has been linked to genetic causes. The remaining 90 percent remains unknown, a likely combination of as-yet-unidentified genes, gene expression, and environmental factors.
“Unfortunately, screening for ovarian cancer in the general population is not very effective or not effective at all today because we don't have the tools and technologies we need,” says Fishman. “Despite everybody's efforts to create biomarkers that are effective for screening, it really hasn't happened.”
With Sarah’s family history, the decision to have a hysterectomy (including the removal of both ovaries) was clear-cut. She reached out to other women at Sharsheret, a support organization for women with breast and ovarian cancer, to learn their stories and seek guidance.
Her surgery was minimally-invasive, and since Lynch Syndrome doesn’t include a risk of breast cancer, Sarah was free to take hormone replacement therapy (HRT) to mimic the hormones her ovaries would have produced on their own. “I feel good,” she says. “I feel pretty confident that if you met me today, you wouldn't think, ‘there's someone who had major surgery.’”
For other women, removal of the ovaries may present additional challenges. According to Fishman, there is a medical debate about whether HRT can increase the risk of breast cancer. Without replacement hormones, a woman whose ovaries are removed immediately enters menopause, which can affect quality of life.
For all women looking to reduce their risk of ovarian cancer, Fishman recommends taking hormonal birth control pills. The pills decrease the body’s monthly hormone surge associated with ovulation, which can increase rates of all reproductive cancers in those who are at risk. Each year that a woman takes hormonal birth control, she reduces her risk of ovarian cancer by 10 percent, for a lifetime maximum of 50 percent after five years on the pill.
“Short of surgery,” Fishman says, “it's is the most effective option we have."