Signatera Numbers are sky high and I'm terrified

Thanks very much, I am in southern California, but if it is virtual, I'm sure it would work. My oncologist is also affiliated with UCLA down here. Thanks again.

Thank you very much. I will look into it! I appreciate the suggestion.

UCSF has a wonderful, virtual support group. I see you are in California. If you are in the SF Bay Area, I would look into the group. There is information at the UCSF website.

Hi, I suggest to check out colontown.org
It is solely about colon cancer, with a lot of presentations on treatment and research as well as surgeries. It has proved very useful for my situation (stage IV with peritoneal disease and now liver mets). It also has a few presentations on testing and monitoring. Hope it helps

I find it concerning that so many report on ctDNA (Signatera) test results. According to the National Cancer Institute, ctDNA tests are not part of standard care for colon cancer at this time. I am unclear as to the reason for this, but I believe it pertains to the level of research findings that have been performed to date. The oncologist I have been seeing is on staff at a NCI-designated cancer center in a major medical center in California. He will not use the ctDNA test nor will another oncologist at the same hospital. I don't know if that is true for all of the oncologists affiliated with this cancer center. Another major medical facility in the same area which is not a National Cancer Institute-designated facility does use the test. Apparently the Mayo Clinic does utilize this test as there appear to be a number of patients affiliated with a Mayo Clinic facility on this site.

I struggle with despair every single day related to decisions and. monitoring of colon cancer. I feel I am on my own with respect to making decisions and even appointments for follow-up care. I have seen only 1-2 other patients on this site who had the same chemotherapy treatment I did (Xeloda and Oxilaplatin) which I believe is the current standard treatment for stage 3 b colon cancer. I really do not understand the variations in treatment for the same stage and the lack of consistency regarding monitoring.

I also do not fully understand why this site doesn't actually have virtual meetings. Colon cancer is the 2nd or 3rd cause of death among cancer patients and yet it seems next to impossible to find a support group that has actual meetings.

It is very hard to feel that cancer care is coordinated and according to best practice. I wonder if it is better in other countries.

Yes, agree that Sig tests absolutely DO give numbers, not just positive and negative.

I'm guessing that those who think there is no actual number given, simply a positive or negative result, didn't scroll down on the PDF containing the results. If you DON'T scroll, yes, all you see is pos/neg. If you DO scroll, or if you download and read in full, you then see a graph for historical results (trend) as well as the actual MTM/mL number.

We have been getting Signatera tests every 6 weeks for 2 years and we always get numbers not just negative and positive.

So sorry Roy, to hear about your recent results. Sending healing thoughts your way.

I wanted to thank you for sharing your thoughtful comments on treatment and tests concerning colorectal cancer. As a teacher diagnosed in August of last year (cancerous polyp found on first colonoscopy, years of negative FIT results), I feel it is my mission to learn all I can about my disease and educate others about my experience. That includes telling everyone I can to not rely on FIT tests and get a colonoscopy. I appreciate that you are open to sharing your professional and personal perspectives.

I have metastatic colon cancer stage 4 and have had two surgeries and this is my second round of chemo. After my second surgery my Signatera number was 272. It then went down to 12, then doubled and keeps going up. It is now 57 but my CEA number fluctuates between 1 and 2. I am concerned just like you. Are they doing everything they can to keep my cancer at bay. My oncologist said they don't worry too much about the test numbers so why run the test. I had a CT scan and the spots on my liver (where the cancer metastisized) are neither growing nor shrinking. I now have two very small spots on my lungs. I am like you am I doing everything possible to keep this at bay

@mrgvw Thank you for your comments. I was dx stage 4 appendix cancer in 2021. I started fortnightly CEA protein blood tests before my fortnightly Folfiri + Avastin infusions. I chose to leave Folfox to plan B if needed.

I asked my oncologist not to tell me my results, unless we needed to worry and look at Folfox. I didn’t want the stress if I didn’t need it. Only once was he concerned and said we may need to change after my next results. Next infusion he said any concerns had gone and it was business as usual. I have no idea what my numbers ever were. My choice.

After a year of various treatments including 2 major surgeries I was finally NED in 2022 . I chose to stop treatment then. I haven’t been treated since. My oncologist says my gamble worked for me and now we only attack if/when the cancer comes back on my tests. I am periodically scanned (3 monthly now 4 monthly) PET-CT and CEA etc blood tests and meet my oncologist to hear his take on the results.

I have never had Signatera but have read about it. Our Medicare system in Australia doesn’t cover it. In a way I’m glad I haven’t. This stress seems awful.

I hope everyone who is worrying about their Signatera numbers fights on if needed 🙏🙏 That’s my plan if my tests show anything that concerns my oncologist 🙏🙏