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MyOvarianCancerTeam asked a question 💭
San Francisco, CA
February 26, 2025
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Answer Summary

Members shared deep frustration about the lack of understanding surrounding ovarian cancer, with overwhelming consensus that people fail to... Read more

Members shared deep frustration about the lack of understanding surrounding ovarian cancer, with overwhelming consensus that people fail to grasp how difficult it is to detect early, why routine gynecological exams miss it, and the crushing reality that it recurs in approximately 80% of cases rather than being a one-and-done experience. Several members advocated passionately for routine CA-125 screening as part of annual checkups, shared stories of symptoms being dismissed by doctors for years before diagnosis, and emphasized the critical importance of removing fallopian tubes preventatively since many ovarian cancers actually originate there. A recurring theme was the profound emotional toll of living with constant recurrence anxiety, the physical and mental exhaustion of repeated treatments, and the feeling of being misunderstood by everyone except fellow teal sisters who truly comprehend this relentless disease.

A MyOvarianCancerTeam Member

What bothers me is people think you got it, you got chemo, it's gone, so now everything is great. They don't know about the 80% return rate. No one knows what you are going through except my teal sisters.

February 26, 2025
A MyOvarianCancerTeam Member

Ovarian Cancer is so unpredictable. I feel like my life is day to day. Recurrence is always in the back of your mind. I'm on my 3rd recurrence. This time has really been hard for me mentally and emotionally. I can see why people decide not to have any further treatments. It's just gets harder and harder each time.

February 28, 2025
A MyOvarianCancerTeam Member

Why it can't be diagnosed earlier? Why regular visits to your OB/GYN won't find it....

February 26, 2025
A MyOvarianCancerTeam Member

I find it hard to find words for what I went through 14 years ago and diagnosed stage 4.
I have had my 5 th recurrence and now on a new Keytruda cocktail..
No one can understand the physical and emotional trauma this disease causes …. Except my teal sisters!

February 26, 2025
A MyOvarianCancerTeam Member

People don’t realize that there are so many different types of ovarian cancer, and that some of the rare types respond better to treatment then some of the more common types. Agree that women should be able to get a CA 125 screening. The highest mine ever got was 155 and I am in my second recurrence and my CA 125 is still within the normal range. However, it started creeping up in January. Starting a clinical trial next week, so praying for a good response🙏 also bravo to the women and daughters that are getting their tubes removed! A couple of my girlfriends that had a hysterectomy in their 30s are contacting their doctors about getting their tubes removed since they are post menopausal anyway.

February 26, 2025

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Herndon, VA

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