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May 21, 2023
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Answer Summary

Members responded to a question about experiencing symptoms despite a CT scan showing no cancer, with many sharing that ovarian cancer can be... Read more

Members responded to a question about experiencing symptoms despite a CT scan showing no cancer, with many sharing that ovarian cancer can be difficult to detect on imaging, especially when tumors are small or appear as microscopic deposits. Several members described similar experiences where rising CA-125 levels or persistent symptoms prompted treatment even when scans were initially clear, with some finding that PET scans revealed recurrences that CT scans missed, while others noted that cancer can appear like sandpaper on affected areas rather than as obvious masses. A recurring theme was the importance of trusting your instincts about your own body, advocating persistently with your medical team when something feels wrong, and recognizing that CA-125 levels and scan results don't always align.

A MyOvarianCancerTeam Member

I have not had what you are speaking of but I know it's a drag to have the cancer creep back. My new oncologist told me when what we are doing now fails to work, we will try something else. There are a lot of options out there, Put your hand on your areas that are being affected, pray that they disappear. Why not, miracles can happen. That's about where I am at. Try to smile, hug all your dogs, they are the best comfort~ XXOXO. (this is my new baby, Josie, she is making me real tired but keeping me going....and going...)

May 30, 2023
A MyOvarianCancerTeam Member

Moira, I find it odd that your onco has no plans to do CT scans after your chemo. I had surgery and 6 chemo treatments. They did a CT scan and declared me NED. My onco has me on Lynparza, does bloodwork every month checking my CA125 which was 450 when I was diagnosed, and does CT scans every 3 months. I would find another onco who will follow up with CT scans.

May 28, 2023
A MyOvarianCancerTeam Member

Thanks for all of your posts 👭
I've been told NED so I'm just getting on with life. Have a pain free and 😊 day 💛

July 12, 2023
A MyOvarianCancerTeam Member

@A MyOvarianCancerTeam Member. Truly sorry you are dealing with recurrence. When my OC recurred, I was convinced it was a benign growth as it was so far away from my abdomen. CA125 has never been high so it is not a good sign for me. CT may or may not show tumors depending on size. Seems the only way I know it's back is when it takes over and becomes obvious. For now, I feel pretty good. Of course, I will always have the neuropathy pain in my feet. Had to skip my last Avastin infusion as I came back from the cruise with a very nasty cold. Fortunately not COVID. However, I did not feel comfortable sharing my cold with anyone compromised. Doc is away this week and next week is holiday in the U.S., so my next appointment is June 5. Might be for the best as I have colonoscopy on May 31. Trust your fur baby. They seem to know more than anyone else. Sending you healing hugs and much love.

May 21, 2023
A MyOvarianCancerTeam Member

Many thanks girls for sharing, for the kind words and lovely support 🤗
I have a good GP, a Macmillain nurse with whom I can talk to if I want to.
I came back to Scotland 🏴󠁧󠁢󠁳󠁣󠁴󠁿 yesterday and I've been a walk beside the river Teviot with my Mali, my little fruit loop. He's becoming much more protective these past few months. He even warned a friend and my mother in two occasions when they stood next to me and leaned over to look at a photo on my phone. In him I trust regarding what he thinks of me being vulnerable. I think 🤔 💜

May 21, 2023

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