There is a way to prevent ovarian cancer. Only a few know about it.
Kira Wynn will do almost anything to avoid the ovarian cancer that killed her mother.
“My mother thought she had pulled a muscle in her side,” Ms. Wynn said. Her mother’s doctor, she added, “told her to do physical therapy.”
As is often the case with ovarian cancer, Ms Wynn’s mother’s disease was already in an advanced stage when she was diagnosed. She died 10 months later.
Genetic testing was unable to detect a mutation that would indicate whether Ms. Wynn was also at risk for ovarian cancer.
So Ms. Wynn, 37, had a consultation with Dr. Rebecca Stone, a gynecologic oncologist at Johns Hopkins Medicine. What she heard wasn’t what she expected.
“Ovarian cancer,” said Dr. Stone, is a misnomer. Almost all ovarian cancers – and almost all fatal ovarian cancers – are actually cancers of the fallopian tubes. The roughly 20 percent that starts in the ovaries is different, Dr. Stone, and can usually be cured.
Women who have their fallopian tubes—the rubbery, worm-shaped ducts that carry eggs from the ovaries to the uterus—removed have a nearly 80 percent reduction in their risk of developing ovarian cancer. It is a five-minute operation that can be performed as part of almost any abdominal surgery, including a hysterectomy, tubal ligation, gallbladder surgery, and hernia repair.
But no doctor, Ms. Wynn said, had ever mentioned removing the fallopian tubes to her.
This is not surprising, said Dr. Stone, because most doctors (and the public) would be unaware of this new approach, even though professional groups such as the American Cancer Society, the American College of Surgeons and the European Society of Gynecological Oncology have recently issued statements encouraging doctors to offer tube removal for other abdominal surgeries.
The American Cancer Society is currently working on a national campaign to make more women and doctors aware that tube removal can help prevent most ovarian cancers. The group plans to launch the campaign next year, said Anne Reynolds-Doerr, a spokeswoman.
Women have an average 1.1 percent risk of developing ovarian cancer, one of the deadliest types of cancer. Screening to detect it early doesn’t work (mortality rates don’t change). Ultrasounds, blood tests and advanced imaging all failed. And most of the 20,000 women a year diagnosed with ovarian cancer have no known risk factors. By the time they figure out why they have vague symptoms like bloating and stomach pain, the cancer has spread throughout their body. Surgery and chemotherapy – the standard treatments – are unlikely to cure it.
The tumors begin as microscopic patches of cancer cells that emerge from the wide end of the fallopian tube attached to an ovary. They colonize the ovary and abdomen, where they grow and become deadly.
Dr. Kara Long, an ovarian cancer specialist at Memorial Sloan Kettering Cancer Center, likens these tiny cancer cells to dust rising from a carpet and floating across a room.
Dr. Stone says they are like scales that travel down onto a person’s shoulders.
This discovery, said Dr. Long, “was an eye-opener for us.” It explained why early diagnosis so often failed: These tiny cells are not visible on ultrasound or other imaging techniques.
But the finding did not seem to penetrate the medical community. “How do you translate a critical discovery, one of the most critical discoveries of my life, into the standard of care?” asked Dr. Stone.
The first inkling that most ovarian cancers arise in the fallopian tubes came in 2000 with a Dutch doctorate. Student, Jürgen Piek. He knew that women with certain mutations in one of the two genes BRCA1 or BRCA2 had a greatly increased risk of ovarian cancer. To protect themselves, many people choose to have their ovaries removed preventatively.
So started Dr. Piek to examine the ovaries the women had removed for early signs of cancer. Doctors who remove ovaries also remove the fallopian tubes at the same time, because although the ovaries can survive without the fallopian tubes, the fallopian tubes cannot survive without the ovaries, which they rely on for their blood supply.
Dr. Piek noticed something that surprised him: He saw no precancerous cells in the ovaries, but often found them in the fallopian tubes. The cells looked exactly like early-stage ovarian cancer.
In 2001, he postulated that ovarian cancer originates in the fallopian tubes. “As a doctoral student, I went to a few conferences back then,” said Dr. Peek. He recalled that most attendees said, “He’s a lunatic.” Others, he added, were intrigued.
Years of work followed.
“It took a lot of science before we were really confident about recommending that people remove a structure,” said Dr. Long. There were critical questions: Were the fallopian tubes the source of cancer in average-risk women? (The answer is yes.) Is it safe to remove hoses? (Yes.) Does the surgery damage the ovaries? (NO.)
Dr. But Joseph Sakran, a surgeon at Johns Hopkins Medicine, cautioned that published articles were not enough to change practice. “There is a gap between the availability of the data and its implementation,” he said.
Because removal of fallopian tubes affects fertility, doctors are careful to explain the implications before offering the procedure. They want to tread carefully and make sure women don’t think they are being pressured into sterilization. The forced sterilization of disabled, black and disadvantaged people has a long history.
Now Break Through Cancer, a foundation in Cambridge, Massachusetts, and the American Cancer Society are conducting a study at Memorial Sloan Kettering, MD Anderson Cancer Center and Johns Hopkins. Every woman scheduled for abdominal surgery is given the opportunity to watch a video explaining what is known about ovarian cancer and then asked whether she should have her fallopian tubes removed during the operation. Any woman can refuse to watch the video or have her fallopian tubes removed, for example if she is considering becoming pregnant one day or simply feels uncomfortable at the idea of having a healthy body part removed.
Rolester Garner, 79, who lives in Baltimore, saw the video recently when she came to Johns Hopkins for a preoperative visit before undergoing hernia repair. She said she has no family history of ovarian cancer and no known genetic risk. And she had no idea that most ovarian cancers arise in the fallopian tubes.
But after she found out, she said, “I wanted to keep doing it.” Dr. Sakran removed her fallopian tubes on July 13th.
Dr. Long said she and Dr. Stone went back through the medical records of her ovarian cancer patients to see how many had undergone abdominal surgery at some point in the past. If given the option, they could have had their fallopian tubes removed to prevent their cancer.
“More than a quarter had a missed opportunity,” said Dr. Long. “Oh my God, there are hundreds of patients.”
Kristin Buser, 42, who lives near Annapolis, Maryland, is one of them. She was training for a 10-kilometer race last year when her symptoms began. “Something was wrong,” she said. “I had irritable bowel problems.”
Her doctor had thought Ms. Buser had irritable bowel syndrome but sent her for a CT scan “to rule out anything strange,” Ms. Buser said.
On May 15 last year she received the diagnosis: advanced ovarian cancer. Treatment so far has included five surgeries, nine rounds of chemotherapy and five rounds of immunotherapy.
Pathologists discovered that her cancer had started in the left fallopian tube. She had had a cesarean section 10 years ago with a tubal ligation, in which the fallopian tubes were severed but not removed. “They had me completely open,” Ms. Buser said. It would have been so easy to remove her fallopian tubes.
But she said, “I refuse to look at this from the perspective of my poor, poor, pitiful self.” Instead, she added, she wants to share her story to help others so they don’t miss an opportunity to prevent ovarian cancer.
“My biggest thing in life,” Ms. Buser said, “is moving forward and staying positive.”