Today, I had a lovely chat with the head of the World Ovarian Cancer Coalition, thanks to a mutual friend who connected us. CEO Clara Mackay told me that the organization is a coalition of close to 200 patient advocacy organizations from around the world, such as Ovarian Cancer Canada, Ovarian Cancer Australia, the Associação de Combate ao Câncer de Ovário of Brazil, and Associazione Lotta Al Tumore Ovarico of Italy, to name just a few.

The World Ovarian Cancer Coalition leads World Ovarian Cancer Day, which is its flagship awareness-raising initiative, held each year in May since 2013. As noted on the Coalition's website,

Supported by close to 200 organizations from around the world, our social media reach grows exponentially every year, with 2023 directly reaching over 192 million up from 20 million in 2022. Our partner organizations, as small as kitchen table-based patient advocacy groups in rural communities, to national healthcare associations based in major metropolitan areas, all come together as one to raise awareness about the disease.

And that awareness-building—not just one day but across the entire year—is crucial to the survivability of ovarian cancer. In its Rapid Diagnosis Data Briefing, the Coalition notes that the sooner someone is diagnosed with ovarian cancer, the better their prognosis. They will be well enough to undergo and tolerate treatments and, if necessary, to be enrolled in clinical trials. It states:

With no screening programme yet available, rapid diagnosis is vital and there are three key components to reducing delays in diagnosis:

1. Women knowing when to see a doctor

2. Doctors recognising the symptoms of ovarian cancer;

3. A health system with access to, and timely completion of, diagnostic tests

In 2018, the World Ovarian Cancer Coalition conducted the Every Woman Study™, the largest global survey of women with the disease—more than 1,500 from 44 countries. It found that before their diagnosis:

That's almost 70% of women who knew nothing about the disease. I would have been among the 51%—having heard of the disease but knowing absolutely nothing about it.

This lack of awareness can cause delays in seeking medical attention. The Every Woman Study™ found that, among nine countries, the average time from the onset of ovarian cancer symptoms to diagnosis—made up of the time for someone to see a healthcare professional and the time for the healthcare system to diagnosis the disease—ranged from 21 weeks to more than 35 weeks, with the greatest time to diagnosis in Canada (35.6 weeks) and the United States (36.5 weeks).

Another interesting finding is that, of the survey participants with two or more relatives with ovarian cancer in their family, 80% had not had genetic testing before their own diagnosis, missing an opportunity to potentially prevent the disease.

The Rapid Diagnosis Data Briefing concludes its report with this call to action:

There are three steps needed to see more women diagnosed more rapidly and better able to tolerate treatment :

1. Raise awareness of symptoms among women so they know when to seek help

2. Improve knowledge among health professionals so they know when to refer women on

3. Build capacity in health systems to enable timely access to diagnostic tests.

While I'm limited in my ability to influence the second and third actions, I can do my part to help with the first one. Even simply making others aware of my ovarian cancer diagnosis could lead someone to seek medical attention sooner if they observe changes in their body and to politely push for more and earlier tests to confirm or rule out ovarian or other gynecologic cancers.