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Status post stage 3C Ovarian cancer, post hysterectomy, remission since May.

June 29, 2024
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A MyOvarianCancerTeam Member

I have been in remission after frontline treatment since December. I'm slightly complicated as I had two cancers, which we didn't find out till the end. So I finished chemo early November and had a follow up PET scan a month later to make sure I was clean. I had a small mass on my chest still that was surgically removed at the end of December which turned out to be a thymoma (no ovarian cancer at all). I was scheduled for a CT scan in May to make sure everything was clear, but I had some classic ovarian cancer symptoms so they moved it up to April. I got both my chest and abdomen/pelvis scanned because thymoma will always be a concern as well.

My understanding is that I will get a pelvic exam and CA-125 test (my CA-125 was over 4000 at diagnosis, so they consider it a good indicator for me) every three months. If I have a whiff of symptoms, they will give me a CT scan within reason (no more than a few a year), but they do not schedule them. I have seen many many studies that say that symptoms are a better indicator of recurrence than any screening method. There are also newer studies that are showing that catching a recurrence early is not necessarily a better predictor for outcomes.

Even if CA-125 is a good indicator, it may take it a few months for it to show up on a scan after a rise in marker levels. They can't do anything to help us until it shows up on a scan. I know we are all different, so some doctors scan more. I don't know why, but I am sure they have their reasons. I definitely see a comfort level with that. I am driving myself crazy with trying to notice symptoms. I've had lower back pain for a week and dealing with constipation/diarrhea (just like the stomach bug going around), but super normal CA-125.

July 5, 2024
A MyOvarianCancerTeam Member

Hi Regina,
I’m in Perth W.Australia, I can 0nly reply on my own experience, 3 months after I had my operation, I had chemotherapy every 3 weeks. I am now in remission since last August 2023, I have been having 3 monthly C125 blood tests, I will see my oncologist at the end of July. I don’t know if it’s the same in America. I can only comment/on my experience
Regards
June

July 5, 2024

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