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Post-treatment follow up for clear cell endometrial cancer

Posted by ffr @ffr, Mar 16, 2025

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.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

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stellarm | @stellarm | Sep 2 8:45am

I'm new here. I was diagnosed with stage four endometrial cancer back in April. I had a full hysterectomy and just completed my six rounds of chemo. I get my CT scan in 3 days with my follow up with Oncologist a week later. It would be nice to have some others to talk with going through this.

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stellarm | @stellarm | Sep 2 9:01am
In reply to @val64 "When my endometrial cancer recurred, I talked my oncologist into letting me get the Foundation Medicine..." + (show)
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When my endometrial cancer recurred, I talked my oncologist into letting me get the Foundation Medicine liquid biopsy, because I was hoping to see if the new tumors had the same mutation profile as the initial tumor. I didn't manage to talk him into it until the day of my first chemo treatment, so I didn't actually get the blood drawn until right before the second chemo treatment. This test did not detect any of my tumor mutations AT ALL. When I had a CT scan after the third cycle, the tumors had only shrunk marginally, so it wasn't because the chemo had killed everything. I'm a molecular biologist, so I got Foundation Medicine to send me the raw sequence data, and there really was absolutely zero sign of my tumor in the data. So my personal experience is that liquid biopsies are not sensitive enough to be good for anything. But some tumors seem to shed more DNA than others.

Also, the people in the pancreatic cancer forum on this site have experience with the Signatera liquid biopsy, which should be more sensitive than FM. They seem to think that the Signatera test comes up positive well after their CA19-9 starts rising. So even that doesn't really live up to the hype.

Do you know if you have high CA125 when you cancer is present? Mine is only somewhat high, but I'm still finding the test very useful at gauging whether the clinical trials that I've been on are working. But my oncologist never would have ordered it himself. I asked for it. If I ever get to NED status, I'm going to try to get frequent CA125 tests.

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@val64 I originally thought the CA 125 was the thing to watch due to my limited knowledge. But mine came back at 18-witin normal range before I started chemo. With continued testing, after individual chemo treatments it came in at first 18, 9, 9, and 7. In discussing this with my Dr she explained that in my case the test is one of the many things that she looks at but isn't the only thing.
I was diagnosed with stage four endometrial cancer in April 2026 and had a full hysterectomy. I have used carbotaxel combo but kept having allergic reactions upon administration so was switched to a sister chemo with protein. Did fine with first dose but another allergic reaction the second time using it. Last treatment they skipped the one drug due to severity of reactions. (I have had chemical sensitivity for 20+ years and have an epi just in case)

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ffr | @ffr | Sep 2 12:24pm

Welcome! I have found this group to be very supportive and informative, so ask questions and unload!
I was diagnosed with clear cell endometrial cancer in 2022. The oncologist threw everything at me: Full robotic hysterectomy, carbo & pax chemo, clinical trial, radiation & brachytherapy. I had metastasis while getting chemo so my cancer is considered chemo resistant. CA-125 has always been in the normal range, though not as low as yours. I don’t think anyone expected me to still be alive today. I do worry (a LOT!) about recurrence as I have no relevant markers for the newer immunotherapies and I’ve already been radiated.
Your reactions to the chemo drugs are challenging and I suspect that your oncologist is looking for alternatives. Maybe even one of the newer meds.
Hoping that this will be figured out quickly for you. I’ll look for your updates.

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teechur89 | @teechur89 | Sep 2 3:59pm
In reply to @naturegirl5 "@teechur89 Thank you for sharing. I'm curious. Has your daughter tried contacting her oncologist to ask..." + (show)
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@teechur89 Thank you for sharing. I'm curious. Has your daughter tried contacting her oncologist to ask for the biopsy results? I've had experiences where pathology quickly (within 24 hours after they received them) sent my results to my primary care provider. When I had not heard about the results I called my PCP's office and found out the results were "there" in the office but had not been read. I changed my PCP shortly after that.

In my opinion, a provider who orders tests or biopsies when cancer is suspect and then does not get back to the patient as soon as the results come back increases the emotional stress on the part of the patient.

Again, it's a relief that your gyn/oncologist will see your daughter tomorrow. I'm hopeful that your appointment today will provide you with a treatment plan that works for you. Will you come back and let me know about your appointment?

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@naturegirl5 My oncologist today recommended CT scans every three months and he will make sure at least two people read the results each time. He told me chemo and immunotherapy are most effective when there is a tumor and since mine was removed he recommended surveillance . He did warn me it is likely to return and if it is inoperable then we would do chemo and or immunotherapy.

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inquirer | @inquirer | Sep 3 5:39am
In reply to @teechur89 "@naturegirl5 My oncologist today recommended CT scans every three months and he will make sure at..." + (show)
Profile picture for teechur89 @teechur89

@naturegirl5 My oncologist today recommended CT scans every three months and he will make sure at least two people read the results each time. He told me chemo and immunotherapy are most effective when there is a tumor and since mine was removed he recommended surveillance . He did warn me it is likely to return and if it is inoperable then we would do chemo and or immunotherapy.

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@teechur89 Do you mind sharing your type (serous, clear cell, etc.) and stage? I find it interesting that your doctor didn't recommend further treatment if he thinks it's likely the cancer will return. I had no further treatment after surgery also, but my oncologist thinks it's unlikely to return. Nonetheless, I live in fear. Too many people had oncologists who thought their cancer would not return, yet it did.

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Mentor
Helen, Volunteer Mentor | @naturegirl5 | Sep 3 7:10am
In reply to @stellarm "I'm new here. I was diagnosed with stage four endometrial cancer back in April. I had..." + (show)
Profile picture for stellarm @stellarm

I'm new here. I was diagnosed with stage four endometrial cancer back in April. I had a full hysterectomy and just completed my six rounds of chemo. I get my CT scan in 3 days with my follow up with Oncologist a week later. It would be nice to have some others to talk with going through this.

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@stellarm I’m adding my welcome to our support group. As @ffr noted, we’re a supportive group of women. We all have or have had the one thing, gynecologic cancer, that brought us here.

Your allergic reactions to some of the chemotherapy medications is certainly a challenge. It sounds like your nurses and doctors are right there with your care.

I’m thinking you are very worried at this point in your diagnosis and treatment. What are your biggest concerns right now?

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teechur89 | @teechur89 | Sep 3 12:18pm
In reply to @inquirer "@teechur89 Do you mind sharing your type (serous, clear cell, etc.) and stage? I find it..." + (show)
Profile picture for inquirer @inquirer

@teechur89 Do you mind sharing your type (serous, clear cell, etc.) and stage? I find it interesting that your doctor didn't recommend further treatment if he thinks it's likely the cancer will return. I had no further treatment after surgery also, but my oncologist thinks it's unlikely to return. Nonetheless, I live in fear. Too many people had oncologists who thought their cancer would not return, yet it did.

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@inquirer clear cell stage 2. Now called recurrent clear cell endometrial.

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ffr | @ffr | Sep 3 1:01pm

I hate the word recurrent.

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inquirer | @inquirer | Sep 3 5:30pm
In reply to @teechur89 "@inquirer clear cell stage 2. Now called recurrent clear cell endometrial." + (show)
Profile picture for teechur89 @teechur89

@inquirer clear cell stage 2. Now called recurrent clear cell endometrial.

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@teechur89 I see. Thank you for sharing.

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vara | @vara | Sep 4 6:35am

I am 80 year old, diagnosed with endometroid cancer of uterus one year ago. Stage 1b, P53 positive , hence had too undergoing, TAH&BSO, chemo followed by EBRT. Going forward, I have been asked to come every three months for an USG and pelvic vault examination.
What else preventive measures do I need.

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