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.