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Post-treatment follow up for clear cell endometrial cancer
Gynecologic Cancers | Last Active: 14 hours ago | Replies (52)Comment receiving replies
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.
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@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?