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.

@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.