Weighing Surgeries in Light of a Breast Cancer Gene
By JILL WERMAN HARRIS
BSIP/Universal Images Group, via Getty ImagesAn ultrasound of a uterus. About half of BRCA carriers who undergo removal of ovaries and fallopian tubes also opt to remove the uterus.
When Tracy Dunbrook, a bioethicist in Sherman, Conn., tested positive for the BRCA gene mutation, she was told she had a 40 to 60 percent chance of developing ovarian cancer in her lifetime. Doctors advised her to have her ovaries removed.
She considered going further and having a hysterectomy, in which her uterus would be removed, but in the end opted for the standard of care: a procedure known as risk-reducing salpingo-oophorectomy (RRSO), removal of her ovaries and fallopian tubes. Five years later, she was given a diagnosis of Stage 3 uterine cancer.
“I couldn’t believe it,” she said, “I thought, this is the dirtiest trick.”
Women with BRCA mutations often opt for RRSO. But there is a debate among experts over whether this strategy is the best one for all women, and many patients are caught in the middle, struggling to balance conflicting information about hysterectomy as part of risk-reducing surgery.
“There definitely is an ongoing sense of confusion, and women do agonize over this,” said Sue Friedman, executive director of the group Facing Our Risk of Cancer Empowered. “There are a lot of gynecologists and oncologists who have a strong opinion for or against removing the uterus.”
Dr. Nadeem Abu-Rustum, a gynecologic oncologist at Memorial Sloan-Kettering Cancer Center, agreed: “We struggle with this every day.”
About half of the carriers who undergo RRSO opt for removal of the uterus, according to Timothy Rebbeck, a professor of epidemiology at the University of Pennsylvania who studies the use of preventive surgery among women with BRCA mutations. Yet “there are really no guidelines or data that help a woman to make a decision for or against hysterectomy,” he said.
Indeed, there is scant evidence that women with BRCA mutations are more likely to develop uterine cancer, although small case studies have shown a weak link to a rare form of the disease, uterine serous cancer. Instead, the worries persist largely because of anecdotal reports of cases like Ms. Dunbrook’s, and the fact that uterine cancer is the most commonly diagnosed gynecologic cancer.
The lack of data leaves doctors and patients struggling to make these decisions. Some doctors have seen patients like Ms. Dunbrook come back years after risk-reducing surgery with uterine cancer.
Dr. Kevin Holcomb, director of gynecologic oncology at NewYork-Presbyterian/Weill Cornell hospital, recently treated two women who had RRSO and later developed uterine cancer. “The debate is really still open,” he said. “But if there’s any genetic predisposition to ovarian cancer, it makes sense that it could also affect any of the gynecologic organs with similar epithelium, including the uterus.” But the evidence is just not there, he acknowledged.
Uterine cancer is just one of the fears driving more women with BRCA mutations to consider hysterectomy. Doctors know that some ovarian cancers originate in the fallopian tubes. Following RRSO, a small tubal remnant is left within the uterus, and some women worry that this may become cancerous. Studies don’t bear this out, but some BRCA carriers aren’t taking any chances.
Kate Berges discovered along with her three sisters that a BRCA mutation had been passed down to them through their father. All four women opted for RRSO. But following the surgery, when her younger sister’s pathology report revealed that an ovarian cancer had already taken root in her fallopian tubes, Ms. Berges, 53, a photographer from Branford, Conn., picked up the phone and called her doctor to schedule a hysterectomy. “I just wanted it all out. I didn’t want any surprises.”
Women who have had RRSO with or without hysterectomy may choose hormone replacement therapy to counteract the effects of surgicalmenopause. But there are a dizzying array of options that come in varying delivery systems — patches, pills, and creams — and there is contradictory research on both the risks and the benefits.
For women who have RRSO alone, hormone therapy means a combination of estrogen and, in order to prevent uterine cancer, progesterone. But studies suggest that progesterone increases breast cancer risk amongwomen taking hormone therapy. Some women also experience side effects, including irritability, headaches, bloating and breakthrough bleeding.
Women with BRCA mutations who opt for a hysterectomy are able to take estrogen alone, in many ways a less complicated strategy, but at the cost of a more complicated surgery.
The confusion over all of these variables is visible on the online message boards run by Ms. Friedman’s group. Filled with comments from well-informed women, immersed in making profoundly difficult choices to overcome their odds of cancer, the dilemma of whether to remove some, or all, gynecologic parts is an ever-present issue. Reads one typical post: “Struggling with ooph vs. hyst — please help!”
The frustration of these women in part stems from the fact there is no way to predict what each individual will face in the future, whatever her choice now.
Dr. Michael G. Muto, a gynecologic oncologist at Dana-Farber Cancer Institute, suggests taking the time to discuss the risks, benefits and nuances with each patient. “Women should know what we know and what we don’t know,” he said.
“The biggest challenge is trying to make those risk-benefit decisions every day, every time and get it right,” said Dr. Susan Domchek, of the Basser Research Center for BRCA. “Some people you’re overtreating, and some you’re undertreating.”
Ms. Dunbrook, diagnosed with uterine cancer, was one of the unlucky ones. “I just don’t think it’s worth taking the chance,” she said. “If I had known, I would have absolutely taken it out.”
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