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Post-treatment follow up for clear cell endometrial cancer
Just wondering how your oncologists are monitoring you for recurrence of an aggressive cancer . I am two+ years post treatment with surgery, chemo, radiation & brachytherapy. I had metastasis to local & distant lymph nodes during chemo so I’m deemed chemo resistant.
-How often do you see your oncologist?
-Do you get CT scans & if so how often?
Is there concern for radiation overload?
-Is anybody using liquid biopsies? A blood test seems like a great way to monitor for cancer cells but my oncologist is not a fan.
I’m always worried about recurrence, so your experiences might be helpful.
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@vara Monitoring of CA125 works for some people. Did they document your CA125 before treatment?
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1 Reaction@vara
I was on a 3 month bloodwork, CT and gyn exam protocol for 2+ years after treatment was completed. Currently, I’m on a 6 month plan. Long term after-effects of treatment have been on me to figure out, but I am managing pretty well and gratefully not in pain. The fear of recurrence remains a daily issue, which I try to manage by keeping busy with family & friends or immersing myself in a good book.
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1 Reaction@ffrThank you for your reply. If it is permissible, can you list the blood work. I am getting a CBC, CRP, S.CREATINE, CT scan has not been advised , only USG of pelvis.
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1 Reaction@inuirer, Yes, CA 125 was done before and after surgery . Both values were well within normal limits.
Is CT scan of pelvis and abdomen mandatory every 3 months , post treatment one year later.
@vara
I get CMP (which includes creatinine) and CA125.
I have never had an ultrasound to monitor recurrence, only CT scans. My understanding is that the CT scan provides much better imaging, though with the tradeoff of radiation exposure.
Also: No blood biopsy, though I continually ask about it.
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1 ReactionPre surgery atleast three CT scans were done, not counting the ones done in COVID time. Thinking of four CT,s. in the coming year makes me think of another cancer elsewhere
as I am P53 mutant positive.
I am thinking of requesting for an MRI of pelvis and abdomen.
No fear of radiation.
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1 ReactionI have never had an MRI for routine uterine cancer surveillance, though I have one annually for breast cancer monitoring due to being high risk. From what I read, the type of scan used has to do with which part of the body is being monitored. (And maybe it has to do with insurance?)
It will be interesting to hear from other women about this.
@vara Glad they measured your CA-125, but just know that it can be within normal limits and still indicate recurrence. For example, the initial number times 2 can be of concern, even if the result is well below 35. My initial number was 4. My oncologist said anything approaching 10 would be of concern to him.
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1 ReactionThank you for this information about the CA-125 doubling. I had absolutely no idea. I believe that mine fluctuates up & down. I will double check.
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1 Reaction@ffr what were your treatments and what were the long term effects you're having to deal with on your own?