Ovarian Cancer Leaders Urge Genetic Testing For Increased-Risk Individuals, and Consideration of Prophylactic Surgery for All Women

[NEW YORK, Feb. 1, 2023] — In a dramatic shift of focus in the fight against ovarian cancer, Ovarian Cancer Research Alliance (OCRA), the world’s leading ovarian cancer organization, today announced they will begin a nationwide push for genetic testing of those at increased risk and consideration of a prophylactic surgery even for those at average risk to potentially prevent the deadly disease. As part of the effort, OCRA will launch a pilot program offering free, at-home genetic testing to those at increased risk who qualify beginning February 1. The Society of Gynecologic Oncology immediately endorsed the bold move, noting it reflects what current science shows are the only proven methods of affecting mortality rates.

The new, aggressive strategy replaces decades of a focus on symptom awareness and early detection, after a rigorous clinical trial in the United Kingdom that followed more than 200,000 women for more than 20 years revealed sobering and deeply disappointing news: that current screening methods do not impact mortality in average-risk women. Put more simply, the trial showed screening and symptom awareness will not save lives.

“There is currently no cure for the deadliest of all gynecological cancers, nor is there a way to screen for it that has any impact on mortality. But we know there is a way to dramatically reduce the risk,” said Audra Moran, President and CEO of OCRA. “Ovarian cancer is considered a rare disease, but for those with a family history and/or genetic mutation, the risk jumps to 40-50% or even higher. So, knowing one’s risk level is critical. We also know that 70% of ovarian cancer begins in the fallopian tubes, so we are encouraging people who are done having children to discuss with their doctors the possibility of having their tubes removed if they are having any other pelvic surgery. Essentially, we want everyone with ovaries to know their risk level, and to know the actions they can take to help prevent ovarian cancer. Until there is a cure, these are our best weapons in this battle.”

“Nearly 20% of patients with ovarian cancer have a genetic mutation that was likely the cause of their cancer,” said Stephanie V. Blank, MD, President of the Society of Gynecologic Oncology and Director of Gynecologic Oncology for the Mount Sinai Health System. “This is one of the highest percentages of inherited mutations among any cancer. Learning that you have one of these mutations before you ever have ovarian cancer can offer a great opportunity to prevent it.”

The new focus will be on encouraging people to know their risk; promoting genetic testing to at-risk populations; and encouraging women and anyone born with ovaries – including those considered at average risk – to consider having their fallopian tubes removed (called salpingectomy), if they are undergoing other pelvic surgeries.

Because knowing one’s risk level is critical, OCRA will launch a pilot program to provide free at-home genetic testing kits to people with a personal or family history of breast, ovarian, uterine or colorectal cancer. Details available at https://ocrahope.org/what-if-you-could-prevent-ovarian-cancer/.

Scientists know that the most common and lethal form of ovarian cancer actually starts in the fallopian tubes, with microscopic precursor lesions developing long before any symptoms would ever arise. OCRA is therefore urging people already having pelvic surgery to consider having their tubes removed. For those at average risk, this can mean keeping the ovaries in place, preventing surgical menopause, yet dramatically reducing their chance of developing ovarian cancer. 

OCRA recognizes the new approach will be jarring to many who have spent decades encouraging symptom awareness and early detection, strategies that do lower mortality in other types of cancers but does not change mortality in ovarian cancer.

“This is incredibly hard information to accept and runs contrary to almost all messaging related to ovarian cancer awareness to date. However, to ignore learnings gained from current research would be detrimental to the wellbeing of women and the future of ovarian cancer research,” said Moran. “We have to focus our limited resources on what we know actually works.”

“We must reluctantly accept and be honest with the people concerned about ovarian cancer that there is no evidence that recognizing the symptoms will change the course or outcome of the illness for a patient,” said Dr. Blank.

OCRA is also working with about 80 ovarian cancer community group partners, to shift messaging to focus on actions that will affect mortality rates. OCRA has held meetings with many of these groups and has shared collateral materials with them to aid in helping with this new push for prevention and risk management.

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