Ovarian cancer is a 'silent killer.' Seattle doctors have a new prevention strategy

When Sarah Chen was 36 years old, she and her two sisters found out that their mom carried a gene that could put them at an extremely high risk of breast and ovarian cancer.

So, Chen and her sisters got genetic testing to see if they had inherited it.

Chen was in her car, on the way to vacation with her husband and three young kids, when her genetic counselor called.

“[The] kids in the back were screaming, as usual, and she tells me about this diagnosis,” Chen said. “And I’m like, ‘Oh, crap, that’s not what I wanted to hear.’”

Chen was the only one of the three sisters who had inherited the gene, BRCA2. That meant her chance of getting breast cancer was more than 50%, and her chance of ovarian cancer was about 25%.

Chen is herself an OB-GYN, and she’s had patients with ovarian cancer.

“Seeing young patients getting really bad end-stage cancer, dying at a really young age, leaving young children behind — I didn’t want that to be me,” Chen said. “I knew I wanted to do something to reduce my risk so that I could be here to raise my kids.”

Ovarian cancer is known as the “silent killer,” because it’s almost impossible to detect until it’s too late, and the cancer has spread through much of a woman’s abdomen, all over crucial organs like the stomach and liver.

Women with certain genetic mutations, like BRCA1 and BRCA2, are at extremely high risk of this deadly cancer — and for them, the key is prevention. For years, the standard of care for high-risk women was to remove their ovaries, fallopian tubes, and breasts, as young as their mid-thirties.

But that can be devastating. It can take away the chance to have children without expensive fertility treatments and can wreak havoc on women’s health.

Now, some researchers are trying a new approach: just removing the fallopian tubes.

Health risks of premature menopause

Dr. Barbara Goff is a physician who treats patients with ovarian cancer, and chair of UW Medicine’s obstetrics and gynecology department.

“When we take out ovaries before menopause, there’s an increased risk of cardiovascular disease, an increased risk of osteoporosis, and fractures,” Goff said.

“There's a higher risk of dementia, a higher risk of Parkinson's disease, and in general, all-cause mortality is increased,” she added.

There’s a reason removing ovaries is so bad for women’s health, Goff said. In natural menopause, the decline in hormones is gradual — but that’s not the case with surgical menopause.

“When you surgically take out someone's ovaries, a switch goes off,” she said. “And if you do it when somebody's, say, 38, their ovaries are making huge amounts of estrogen — their body's used to it — and so to withdraw from all of that estrogen very quickly puts people into fairly severe menopause.”

Hormone replacement therapy can help, but not all women can use it — like those who have had breast cancer.

A new strategy for high-risk women

That’s why doctors have been looking at how to prevent ovarian cancer in patients like Sarah Chen without all those terrible side effects.

Researchers at the University of British Columbia and elsewhere have found that the disease that’s been called ovarian cancer might actually start in the fallopian tubes and spread from there.

Dr. Rebecca Stone is a physician at Johns Hopkins Medicine who treats and researches ovarian cancer.

“Just removing the fallopian tubes decreases or reduces the risk of serous ovarian cancer — the most common deadly type of ovarian cancer — by 80%,” Stone said.

For most women with BRCA mutations, the standard of care is still to get their ovaries removed — but at big research institutions like UW Medicine and Johns Hopkins, doctors are starting to remove just the tubes, and come back about 10 years later for the ovaries.

“I like this strategy for high-risk women, because at least it gets the tubes under the microscope looking to see if there's anything there already or not,” Stone said.

That is, doctors use a specific methodology to check the fallopian tubes for any sign of cancer. If there’s anything there, they go back in and take the ovaries out too.

For most high-risk women, Stone said this strategy could delay needing to remove their ovaries by five or ten years — but unfortunately, not forever. That’s because the tubes are attached to the ovaries on the outside — cradling the ovaries like a mitt catching a baseball — so there could always be some bits of the tubes stuck to the ovaries, and the cancer could start there.

What this means for low-risk women

For women who don’t have a genetic mutation that puts them at high risk for ovarian cancer, their chance of getting it is about 1 to 2%.

Still, Stone said, if they’re getting their tubes tied or getting a hysterectomy, it’s a good idea just to get rid of their tubes entirely.

“If women were able to universally choose to have their tubes removed instead of tied and removed at the time of hysterectomy in the United States, we would prevent almost 2,000 cases of ovarian cancer every year,” Stone said.

“My number-one mission that I almost never sleep over because I’m so passionate about this is to make sure that everybody knows about [that],” she added.

Breastfeeding and certain kinds of birth control — anything that blocks ovulation and menstruation — can also reduce ovarian cancer risk.

When women have their period, Stone said some of the bleeding “spills out the end of the fallopian tubes and damages them.”

And, during ovulation, “the ovary explodes on the end of the tube right next to it every month,” she said.

Both of those events can damage cellular DNA, Stone said, which can eventually lead to cancer. That’s why reducing how many ovulation and menstruation events a woman has over her lifetime can reduce her cancer risk.

‘My heart does hurt’

When Sarah Chen learned about her cancer risk, she felt ready to remove her fallopian tubes right away.

“I was pretty confident that having my tubes removed was simple, easy surgery,” she explained. “That was a no-brainer for me. I perform those surgeries myself; I know how well my patients do and recover quickly, so I was ready to sign up for that.”

She got the rest of the surgeries she needed about five years later.

What still worries Chen is her young daughter. She doesn’t yet know if she has the genetic mutation or not.

“Is she going to be able to conceive naturally and enjoy not having to worry about fertility treatments?” Chen said. “[Is] she going to have to have her ovaries removed at an early age, and potentially go through bilateral mastectomies as well, just like I went through?”

“My heart does hurt thinking about that for her.”