Monica Monfre Scantlebury, who discovered she had the BRCA1 genetic mutation in 2017, in St. Paul, Minn., on Jan. 27, 2022. (Jenn Ackerman/The New York Times)
There is no reliable screening test for ovarian cancer, so doctors urge women at high genetic risk for the disease to have their ovaries and fallopian tubes removed once they are done having children, usually around the age of 40.
On Wednesday, a leading research and advocacy organization broadened that recommendation in ways that may surprise many women.
Building on evidence that most of these cancers originate in the fallopian tubes, not the ovaries, the Ovarian Cancer Research Alliance is urging even women who do not have mutations — that is, most women — to have their fallopian tubes surgically removed if they are finished having children and are planning a gynecologic operation anyway.
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“Ovarian cancer is a relatively rare disease, and typically, we don’t message to the general population,” said Audra Moran, president of the alliance. “We want everyone with ovaries to know their risk level and know the actions they can take to help prevent ovarian cancer.”
To that end, the group also has begun offering free at-home testing kits to qualifying women who want to find out if they carry BRCA1 and BRCA2 genetic mutations, which confer an elevated risk for developing both ovarian and breast cancer.
Younger carriers of the mutations might consider removing only the fallopian tubes as an interim step to protect against ovarian cancer, and to avoid abrupt early menopause, Moran said, even though the gold-standard treatment for carriers is to remove the ovaries, too.
While women with BRCA1 and BRCA2 mutations have a very high risk for ovarian cancer, a majority of women with the disease do not carry the mutations.
The new advice is an acknowledgment that efforts to develop lifesaving screening tests for early detection of ovarian cancer have failed, and that women should consider more proactive measures.
Ever since a large clinical trial in Britain found that imaging scans and blood tests for early detection of ovarian cancer did not save lives, women have been told to heed vague symptoms, like bloating, that could indicate something amiss.
But experts say there is no evidence that vigilance about these symptoms prevents deaths.
The Society of Gynecologic Oncology, an organization of doctors who treat gynecologic cancers, has endorsed the new push to make genetic testing more accessible and to promote prophylactic removal of the fallopian tubes in women without genetic risks.
“It is considered experimental,” said Dr. Stephanie Blank, president of the society. But “it makes scientific sense and has a lot of appeal.”
“Removing the tubes is not as good as removing the tubes and the ovaries, but it’s better than screening, which doesn’t work,” she said.
Dr. Bill Dahut, chief scientific officer at the American Cancer Society, said, “There is a lot of good data behind what they’re suggesting, showing that for folks who had that surgery, the incidence rates of ovarian cancer are less.”
“If you look at the biology, maybe we should be calling it fallopian tube cancer and think of it differently, because that’s where it starts,” he said.
Ovarian cancer ranks fifth in cancer deaths among women, according to the American Cancer Society, and accounts for more deaths than any other cancer of the female reproductive system. Every year, some 19,710 women in the United States are diagnosed with ovarian cancer and about 13,000 women die of it.
The disease is a particularly stealthy malignancy, and it is often diagnosed at a very advanced stage as a result. Ovarian cancer is far less common than breast cancer, which is diagnosed in 264,000 women and 2,400 men each year in the U.S., but its survival rates are much lower.
In women with BRCA1 and BRCA2 genetic mutations, surgeons generally remove the ovaries as well as the fallopian tubes — at ages 35 to 40 in women with the BRCA1 mutation and ages 40 to 45 in women with the BRCA2 mutation, Blank said. Ideally, the women will have completed childbearing by then.
But women who don’t have a clear family history of ovarian or breast cancer may be unaware that they carry the mutations.
Monica Monfre Scantlebury, 45, of St. Paul, Minnesota, discovered she had the BRCA1 mutation in 2017, when her younger sister was diagnosed with metastatic breast cancer at age 27.
Their mother did not have the mutation, which means they inherited it from their deceased father. His mother, Scantlebury’s grandmother, had died in her 40s of breast and ovarian cancer.
While heart disease was discussed in the family, the women’s cancers were only whispered about, she recalled in an interview. After her sister died in 2020, Scantlebury had her tubes removed, along with an ovary that appeared to contain a growth.
“I was in my early 40s, and my doctors were less concerned about me getting breast cancer at that point and more concerned about my high risk of ovarian cancer,” she said.
A few days later she received a call from the doctors saying that cells believed to be precursors to high-grade serous ovarian cancer were found in one of her removed fallopian tubes. Scantlebury decided to have her uterus and cervix taken out, along with the remaining right ovary.
Those decisions were not easy. “I made the choice not to have any biological children, which was hard,” she said. “And I am still at risk for breast cancer.” But, she added, “I am named after my grandmother, and I believe the surgery prevented me from having the same obituary as her.”
The practice of removing the fallopian tubes while a patient is already having another pelvic surgery, called opportunistic salpingectomy, is already standard care in British Columbia, said Dr. Dianne Miller, who, until recently, was the leader of gynecologic cancer services there.
“Fifteen years ago, it became apparent that the most lethal and most common kinds of high-grade cancers actually had their origin in the fallopian tube rather than the ovary, and then spread very quickly,” Miller said.
By the time women experience symptoms like bloating or abdominal pain, she said, it is too late to do anything to save lives.
“I remember the light-bulb-going-off moment that many of these cancers are likely preventable, because a lot of women have a surgery at some point for hysterectomy, or removal of fibroids, or tubal ligation,” Miller said.
For women at average risk for ovarian cancer, removing only the tubes is a “win-win” situation, she said, because there are benefits to retaining the ovaries, which even after menopause continue to make small amounts of hormones that help keep the brain and heart healthy.
“As oncologists, we have our eyes set on curing cancer,” she said. “But if there’s one thing that’s absolutely better than curing cancer, it’s not getting it in the first place.”
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