Post-treatment follow up for clear cell endometrial cancer

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?

@naturegirl5 I am having trouble navigating the forum. I found this in my junk mail and tried to reply but I used the other comment button and I don’t know where it went. I will ask my oncologist on Sept 2 about reading my scans. I mentioned that I will be back the next day to support my daughter who has just been diagnosed with endometrial cancer for her first appointment.

@naturegirl5 I am having trouble navigating the forum. I found this in my junk mail and tried to reply but I used the other comment button and I don’t know where it went. I will ask my oncologist on Sept 2 about reading my scans. I mentioned that I will be back the next day to support my daughter who has just been diagnosed with endometrial cancer for her first appointment.

@teechur89 Like you I sometimes "lose" my comments in this forum. In my case it is often due to a computer issue or internet glitch on my end however I understand your frustration.

Your appointment is next week so I'm relieved that you will ask your oncologist about the scans.

It's shocking and very sad that you will return the next day with your daughter who was recently diagnosed with endometrial cancer.

I have the same thoughts as @ffr Will your daughter see your oncologist? Will you and your daughter ask for genetic testing?

@naturegirl5 Yes, my daughter will see my surgeon. My surgeon offered to see her when I told her my daughters oncologist still had not told her her results from her biopsy two weeks ago. She read the results herself on her online chart. All three of my daughters have PCOS which makes them more likely to get EC. I do not have PCOS. But we will ask the genetic questions.