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Real members of MyOvarianCancerTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyOvarianCancerTeam Member asked a question 💭
South Bend, IN

My number was only 44 when the cysts on my ovaries were spotted. After a complete hysterectomy and laparotomy, my doctor got everything out in one piece but high grade cells were present. So I did 6 treatments of Carboplatin and Taxol during which my levels went up to 197. Before my last chemo they were 143 and now after a clean PET scan it is 158. My doctor is not worried as she thinks this number doesn't have anything to do with cancer since my scan was good. I did have Covid about the… read more

May 17, 2021
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Answer Summary

Members shared deeply varied experiences with CA-125 levels after clean scans, with many describing situations where their numbers remained... Read more

Members shared deeply varied experiences with CA-125 levels after clean scans, with many describing situations where their numbers remained elevated or rose despite negative imaging, while others saw low CA-125 numbers yet still had visible tumors on scans. Several members explained that CA-125 can be affected by numerous non-cancer factors including COVID-19, autoimmune conditions like arthritis, inflammation, vaccines, and bowel issues, emphasizing that oncologists increasingly view CA-125 as just one piece of the puzzle alongside scans and how patients feel physically. A recurring theme was the challenge of letting go of fixating on numbers after diagnosis when everything initially revolved around test results, with many members finding reassurance in their doctors' advice to trust scan results and body signals over CA-125 alone.

A MyOvarianCancerTeam Member

My CA125 has not always been correct for me - so my doctor looks at it but only does treatment based on PET & CT Scans

December 12, 2021
A MyOvarianCancerTeam Member

There are many things that can cause your CA125 to increase. In my case it is my Auto-Immune disorder and the inflammation it causes which also causes my CA to increase.

June 8, 2021
A MyOvarianCancerTeam Member

I expect my Ca-125 will go up on the Thursday test. The hand-foot syndrome, associated with Doxorubicin, has advanced to blisters, inflammation and swelling of my feet and my arthritis has been barking like a dog. Depending on what percentage of rise is seen, a CT scan may be done after this, my 10th round, of Doxorubicin/Avastin or we’ll schedule it for after the 11th round. May even have to shoot a PET scan. I’ve had so many scans I’m amazed I don’t glow in the dark!

August 10, 2021
A MyOvarianCancerTeam Member

I had my 3 month check and my CA125 is still elevated but a bit lower than last check. My doctor is confused since my pet scan was negative so we wants me to have another one just to double check. It elevated during treatment up to 197 it came down and now it is at 152. We thought at that time it was because I had covid so she is interested in finding out if having had covid is keeping it elevated. I do also have arthritis so maybe that has something to do with it. She is not sure about that though.

August 9, 2021
A MyOvarianCancerTeam Member

There are factors that can cause increases in Ca-135. My gyn/onc explained the need to evaluate the percentage of increase in addition to findings on scans. Doubling is significant. Glad you picked up on it and got chemo going again. As we know the problem with OC is it’s adaptability with a propensity to reoccur.
Pray your next scan shows a good response 🙏💕

May 31, 2021

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A MyOvarianCancerTeam Member asked a question 💭
West Branch, MI

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