Post-treatment follow up for clear cell endometrial cancer

My oncologist feels the same way. Until there is more evidence that the blood test really work and there is a protocol to treat cancer that is not detectable he feels the risk of false positives is to great and worrisome.

Denise

I just read this post, so apologies for responding so late. As to your question of radiation overload from CT scans, I would say no.
I reached my limit for radiation when treated for anal cancer 13 years ago. I now have aggressive serous cell endometrial cancer, and do not qualify for more radiation, just systemic treatment. I am participating in a clinical study and receive CT scans on a regular 6-week basis. Have just had my 4th scan yesterday. Now, this is after I had CT scans while on a chemo regime that involved paclitaxil and carboplatin, which did nothing. So, I have had numerous CT scans since the inception of my endometrial cancer and no one seems to concerned about radiation overload.
Hope this helps ease your mind.

More than a year has passed since I asked about blood biopsies (Signatera) for monitoring recurrence of clear cell endometrial cancer. My new oncologist agrees with my original doctor that there is no proven benefit. But a friend who is being monitored after breasr cancer treatment gets these tests regularly. So again I’ll ask: are any of you getting a blood biopsy as part of recurrence monitoring? I am currently getting 6 month CT scans and standard blood labs plus a CA-125 (which was never a marker for me) and an internal exam. Note that I do not have Lynch Syndrome or any significant markers that respond to immunotherapy.
Thank you.

I was diagnosed with stage 2 clear cell endometrial cancer in Oct 2023. I had full hysterectomy followed by carboplatin and pacilitacil, radiation, brachytherapy and more carboplatin and pacilitacil. I was so happy when I learned What NED meant and I made it past my two year mark. I had CT scans every six months although I had one doctor tell me they were not necessary and I shouldn’t be having any but one right after the last chemo. I had internal exams every 12 weeks, But this July they found a tumor where they were not expecting it. After a CT guided biopsy it was determined to be clear cell endometrial cancer in my mysentary above my colon. When I mentioned to my surgeon that six months ago I had a clear CT scan. She looked at the scan and said no it was there six months ago but they didn’t make a note of it. She went back more than a year and said it showed up on the scan then too. So I feel I was never NED. I just got out of a week in the hospital where they removed all of an egg sized tumor and parts of my small intestine, ascending colon and parts of my transverse colon. While the cancer was not in my colon it was near to the blood supply to my colon so I had to lose it all. They had not done blood tests on me after my first CA 125 was not a marker. I don’t meet with my oncologist until Sept2nd to see what might be the plan. Discouraging that there isn’t anything to detect reoccurrence sooner. Or that mine wasn’t noted sooner. They do tell me that now that it has reoccurred it will more likely to be back. I do have an amazing support group that got me through all the complications of the last hospital stay. Just looking for any ideas or just support from a fellow fighter.

I am so sad to read your recurrence story. What struck me most: The radiologists who looked at your scans and wrote the reports missed the recurrence. Twice! And your oncologist didn’t look at the images and catch it. I also had a scan that was misread, but the opposite way - the radiology report stated metastatic bone cancer. My oncologist looked at the images and determined that it was a pelvic insufficiency fracture. This is a lesson for all that we need to ask our oncologists if they have looked at the films themselves and not just the reports.
My cancer journey was similar to yours. I was diagnosed in 2022 and had the exact treatments that you did, with the addition of being in a clinical trial for an immunotherapy drug. But after the 5th of 6 infusions, recurrence to lymph nodes was found- one local & one distant. I was kicked out of the trial and had two surgeries a week apart, then an infection and hospitalization.
I had the final carbo-pax infusion, but was deemed to be resistant to it based on the recurrence while under treatment. I have no genetic markers and no treatment relevant biomarkers. (NSMP: No Specific Marker Profile) I get CT scans, bloodwork & an internal exam every 6 months. The bloodwork includes CA-125 even though it was never a marker for me. When I’ve asked about getting the blood biopsies like Signatera I am told that it doesn’t give enough information - if a scan doesn’t show a tumor location because it’s too small then how would they treat it? If there was a drug that we could take for clear cell maybe a blood biopsy would be helpful, but surgery is always a starting point and if they can’t see it they can’t operate.
I feel like I’m living in limbo, on borrowed time, waiting for the shoe to drop as yours did. I appreciate every day and especially the times when I’m engaged in an activity or with people that temporarily blocks the cloud that follows me.
Your surgery was huge and I imagine that you will have a long recovery. May it be free of complications and pain. Will you keep us posted? I will read your posts and follow up with you. Sending hugs to a CC sister.

Appreciate it.

@ffr No, I am not getting blood biopsies. Getting them has never been mentioned. However, I'm still in active treatment complete with CT scans, which are now given every 12 weeks. Since serous endometrial cancer is likely still circulating in my blood, being an aggressive Type 2 cancer, it would show up in the blood test.

@cookercooker
Are you saying that active cancer would show up in whatever blood tests you are getting in this active monitoring stage (vs. a blood biopsy)? If so, what test would show that?

I would imagine that active cancer cells would show up in a liquid biopsy, as it can detect active minimal residual disease. Note that dormant cells hiding in tissues often go completely undetected blood biopsies. As far as blood tests go, ca markers go up and down, due to the presences of cancer, inflammation, or the shedding of cancer cells (from chemo therapy). In active treatment, CT scans can only detect solid tumors. So, if CT scans show NED, it is still possible that cancer cells are circulating in the blood, but not always. My blood tests have shown CA 125 to fluctuate, but still in the normal range. CA 19-9 and 15-3 top the normal range but not in the 1000s; the doctors doesn't know what's causing this. I don't see any use in pinning my hope on either method of blood draw; as I understand it, my stage 3C serous cell cancer is incurable and hence can only be dealt with systemically. I don't know how cancer is dealt with if found only in the blood. Does anybody have information on this?

@teechur89 This is very sad to read that there was recurrence long before a radiologist detected it. I'm became anxious and frightened as I read your post and I'd like to offer my thought and feelings.

Here is what I deduce from what you've written. The radiologist(s) who read your prior CT scans did not do so thoroughly and missed the recurrence. This makes me furious. Do you have the radiology reports from those prior CT scans? If yes, then the radiologist who read those scans will have signed them. I'd be interested to know if it was the same radiologist who missed the recurrence more than once if these were different radiologists. Did your oncologist look at the scans at that time? While it's helpful for them to do that it's also reasonable to expect that the radiologist, also an MD, is doing their job and carefully reading each image.

Why am I asking this question? Because our lives , well-being, and health depend on the professionals who read our imaging scans and the pathologists who interpret and read our biopsy results. These are not the surgeons, oncologists, or other physicians who we communicate with when we come to our appointments. It would be great if all of our providers looked at our images themselves but I realize they don't always do that. I can say that my local provider looks at scans with me and takes the time to explain them to me. Sometimes she sees something in a scan that the radiologist did not. Fortunately for me, these have not been scans for cancer but rather for a shoulder injury when I fell.

I'd like to share that from what you have written here it seems like a good plan to obtain regular CT scans. This is the recommendation I received from my oncologist and NP after I had a recurrence of endometrioid adenocarcinoma. I'm not sure about the blood biopsies such as CA-125 but I have read pathology research that the Signatera is too new, and is not considered a reliable test as this point by many pathologists. 'd also like to recommend that you ask your surgeon about the radiologist(s) who missed the tumor when it appeared on your scan.

I'm glad to know that you have an awesome support group. This is everything because none of us would want to go through any of this alone. If this were me or one of my relatives I would start the process of advocating for myself. I would question my oncologist why the tumor was missed on the prior scans and make sure that those radiologists never are sent my scans again. I'd ask that my scans be read somewhere else that is more reliable.

When do you next see your oncologist or surgeon?