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A little upset about follow-up approaches: What tests do you have?
My husband had surgery in August, after going through 4 rounds of FLOT. His surgeon said the margins were clear and lymph nodes were negative for cancer. Norm then did 2 rounds of 46 hour 5FU, after which he was too beat up to do any more. He is scheduled for a scan in a couple of weeks and we are hoping that there is not any evidence of recurrence. We asked for a Signatera test but his oncologist did an NGS liquid biopsy instead. I thought Signatera is better for trying to determine if the cancer is gone? I feel like she’s acting like there is still cancer there, in spite of there currently being no proof of that. She’s looking for targetable mutations instead of anything even being there, as we asked her to. Am I overreacting? At the least, maybe they should have run both tests? We want to know if there is any ctdna from the original tumor, if there’s a good chance they got it all in order to feel a little bit better about not doing more chemo in the event that the scan returns clear. A clear scan sometimes won’t show the minuscule meanies- will the NGS test do that? Everything during this whole experience has been a fight. I am not happy with the care available locally to us. Every progress Norm has made has come from us fighting for treatments advised by doctors other than the ones at the clinic who neglected to even give my husband options or explain the reasons for them. We got better advice from the surgeon and an oncologist friend of my cousin who backed up what the surgeon said. Sorry that I’m ranting. 2025 was a long, scary year for my husband and our family and I don’t want to take a wrong turn now because of a doctor who isn’t listening and seemed almost offended that my husband was too sick to keep doing chemo that he might or might not have needed. He’s doing better now, about 3 weeks out from his last chemo, but he’s experiencing pretty serious muscle wasting and the 5FU made eating impossible.
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@brianpj12 my husband had to undergo 6 cycles of chemo also just in case and he did not tolerate it, but he managed somehow. Almost 5 years after all this, he is finally feeling better with a lot of supplements, endurance, patience, pain and suffering, loosing 2 teeth due to chemo and a destroyed microbiom, as we know now. But as I put in my comments and articles, the final piece we found was helping him immensely. If you want to know, just let me know, but I don't want to bore you. I only wanted to tell you that better safe than regretting anything. I have seen how aweful chemo can be but still....he is alive and finally getting there, but he is still with me and will be until the end of our days thanks to his oncologist and his wonderful team of health care professionals. All the best
@dillknox thank you! The new oncologist (same clinic but they’ve changed doctors three times now) did the Signatera test on Monday after we mentioned that we wanted it to be done prior. The doctor said the test that was done wasn’t really helpful for what Norm is doing right now. No idea why the other oncologist did that but glad we got the other one done. My husband has a Pet/CT scan tomorrow and we’re hoping the results show him still clear. 🙏🏼🤞🏼
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3 Reactions@tedmichigan this is the link to the company who does it: https://www.natera.com/wp-content/uploads/2021/04/Signatera-Patient-Brochure-1.pdf
I hope you will be able to have a doctor agree to it because it seems like a good tool to have.
@emersonmoon Thank you so much. I will bring this up again with my husband's Dr when appropreate time. I'm glad I saw your post on Signatera.
Maggie