We don’t get to pick which cancer strikes us or our loved ones, but if we did, the one that would be on the list of least desirables would be ovarian cancer.
The deadliest of all gynecologic cancers, it has a special penchant for Jewish women with Ashkenazi ancestry and a BRCA1 or BRCA2 mutation, according to doctors and statistics. One in every 40 women of Ashkenazi descent will carry a BRCA mutation. While the general population’s risk of ovarian cancer is 1 to 2 percent, if testing reveals one of these two mutations, a woman’s lifetime risk jumps to 20-40 percent.
The figures are telling. According to the Ovarian Cancer National Alliance, 93 percent of women diagnosed in the early stages survive five years. But less than 20 percent of cases are diagnosed early. Mortality rates for this disease haven’t improved in the last 40 years, and in 2012 in the United States alone, 22,280 new cases of ovarian cancer were diagnosed. Its death toll was estimated at 15,500 women.
“Unlike breast cancer, there aren’t a lot of women around living with ovarian cancer, “ says Dr. Susan Klugman, director of Reproductive Genetics at Montefiore Medical Center in New York City. “It’s a devastating illness that’s generally found at stages 3 or 4, and the survival rate in general is very small.”
Symptoms include bloating, pelvic or abdominal pain, difficulty eating and urinary frequency. And screening for the disease is not an encouraged way to monitor for prevention. “By the time a transvaginal ultrasound picks up signs of ovarian cancer it’s generally at stage 3 or 4,” Klugman says.
If you’ve lost family members to a gynecological cancer and are concerned about your own risk, the place to begin is with a genetics counselor, who will obtain an extensive family history and discuss the ethical, legal and social issues relevant to each individual decision to get testing for BRCA1 and 2 mutations. “When you do a genetic test on a patient, it’s like you’re testing the family, too, and they have to be prepared for that,” she explains. “They have to want to know the result and be prepared for the result, too.”
One of the best treatment options for women who test positive is an oophorectomy, or prophylactic removal of the ovaries, say medical experts. Lisa Jablon, director of Einstein Healthcare Network’s Breast Health Program in Philadelphia, says she has referred many women for this procedure, often around the age of 38. “The last patient we sent for a preventative oophorectomy was discovered to have stage 3 ovarian cancer when they went in to do the surgery,” she states. “Only four months earlier, she’d had a clear ultrasound, which just shows how fast this disease can move.”
Some doctors say that malignant cancers are found in up to 25 percent of the women who opt for the procedure. Jablon routinely recommends that women who have a BRCA1 or 2 mutation have their ovaries removed. “Those mutations give you an 86 percent lifetime risk of developing breast cancer, but because our screenings for breast cancer are so effective, not everyone goes with preventative breast removal surgeries,” she says. “That’s just not true for screenings for ovarian cancer.”
For high-risk patients who have an oophorectomy, their lifetime risk of getting ovarian cancer is not eliminated, but goes back down to 1 to 2 percent, the general population risk. That’s because they still face the possibility of getting peritoneal cancer, which refers to the lining of the abdomen. While the decision to have an oophorectomy is a big and often frightening one, it’s not a huge procedure. “Laparoscopic surgery means it can be done through a minimally invasive approach with two incisions of 5 mm each and one incision of 15 mm, all in the abdominal area,” says Dr. Mark Shahin, chief of the Hanjani Institute for gynecologic oncology at the Abington Memorial Hospital. “It’s an outpatient procedure that takes maybe 90 minutes to complete, with a three-to-four day recovery.”
Moreover, it doesn’t create a significant change in a woman’s quality of life, doctors say. There’s surgical menopause and the body’s immediate need to adjust to a stop in the supply of estrogen. That can mean hot flashes that may interrupt sleep patterns, a feeling of moodiness and some emotional issues, but “most of it is for a period of time, until the body adjusts,” Shahin says.
There can be vaginal dryness and concerns about bone health “but there are estrogen hormones for the dryness and non-hormonal treatments for bone health, so that’s less of an issue,” says Jablon.
“We view an oophorectomy as being an option towards potentially saving a woman’s life,” says Chani Wiesman, genetics counselor at Yeshiva University’s Program for Jewish Genetic Health. “If she develops ovarian cancer, we can’t catch and treat it, but bringing on surgical menopause for a woman who is extremely high risk for cancer is a good option.”
The problems swirling around this disease include the fact that there is so little known about it, she adds. “We know that women who have BRCA mutations have 44 percent more likelihood of getting ovarian cancer — but we don’t know why one woman gets it and another doesn’t.
“We just don’t have that kind of information yet.”
South African native Lauren Kramer is an award-winning writer based in Western Canada. This article originally appeared in the special section, "Fighting Cancer."