May 8 marks World Ovarian Cancer Day, a day focused on raising awareness about one of the most difficult cancers to detect early.
Audra Moran, president and CEO of the Ovarian Cancer Research Alliance, said one of the most important things people should know is that there is currently no screening test for ovarian cancer.
“Many women who go to their doctor think the Pap smear, the Pap test, tests for ovarian,” Moran said. “It does not. It tests for cervical cancer.”
Moran said ovarian cancer symptoms can often be vague, including bloating, pelvic pain and feeling full quickly. Because those symptoms can seem common, she said people should pay attention when they are persistent.
“If those are persistent, they should be checked, so talk to your doctor about that,” Moran said.
Ovarian cancer is often diagnosed in later stages, in part because it can be difficult to detect early. Moran said researchers believe many ovarian cancers may begin in the fallopian tubes before spreading to the ovaries.
“That’s one of the reasons that they believe it’s so difficult,” she said.
On World Ovarian Cancer Day, OCRA also announced the launch of the Community Accelerated Research Exchange, a global, AI-powered research platform designed to connect patients, clinicians, researchers and advocates in real time.
The platform is powered by Amazon Web Services and is meant to help break down silos in gynecologic cancer research. According to OCRA, nearly 90,000 people in the U.S. are diagnosed each year with ovarian and uterine cancers, and nearly 27,000 die from the diseases.
Moran said the new platform includes a secure patient registry called the Living Lab, where people diagnosed with ovarian or uterine cancer can contribute their experiences and health data. That information is de-identified to protect privacy.
“They’re basically directly contributing their experiences and data, which is going to help drive research forward,” Moran said.
The platform also includes a Discovery Lab, an AI-enabled research environment where scientists around the world can collaborate and analyze shared data for gynecologic cancers.
Moran said ovarian cancer is not one single disease, but many different types, which has made it harder to study and treat.
“Having AI be able to help us differentiate between those different types of cancers, between seeing what treatments do long term for people,” Moran said. “We believe it’s going to help accelerate breakthroughs in ovarian and other gynecologic cancers as well.”
For now, Moran said the Living Lab registry is available in the United States, but OCRA hopes to expand it. The broader research exchange is designed for global collaboration.
Moran also said there has been some progress in cancer research, including work around multi-cancer early detection tests, immunotherapy and PARP inhibitors, though early detection for ovarian cancer remains a major challenge.
“There is hope for the future,” Moran said.
OCRA also offers free resources for patients, survivors and caregivers, including a gynecologic oncologist finder, support programs, clinical trial navigation, peer mentors and free genetic testing for those who qualify.
Moran said people diagnosed with ovarian cancer or another gynecologic cancer should try to see a gynecologic oncologist.
She also encouraged people to learn their family history, especially when it comes to ovarian, breast, uterine or colon cancer on either side of the family.
“If you think something’s wrong, ask questions and trust your instincts,” Moran said. “And get a second opinion if you’re not being heard.”
More information is available at ocrahope.org.