Stage 3b, FOLFOX 12 rounds, 3 negative signatera but turns positive

Posted by korij3 @korij3, May 12 12:33pm

I had colon resection last July 8, 2024@ Mayo and 12 rounds of FOLFOX until 3/28/25. All of my signatera (including pretreatment ) were negative.
My fourth one is 0.5 (positive ) this month. My follow up scans detected a small lung nodule that has grown (to 8mm, from 5 or 6mm) from last June 2024 scan and possibly a couple more small 2-5mm nodules. Some nodules didn’t change.

I’m stressing out over here until I hear what the next steps are …
Cryoablation? Radiation ? More FOLFOX?

Anyone have a similar situation? Also, please share any positive recovery stories..I need some hope here !

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

Profile picture for myjiggers1 @myjiggers1

All this in was very enlightening. I don’t know about any of those tests except the CEA. I will comment specifically on that as to its predicting. I had Stage 3c right side colon cancer in summer of 23. I did not have any signs I had it and my CEA was completely normal. We found it due to other cancer I had in the uterus which was found during a hysterectomy to avoid a precancer turning into cancer. I was anemic and they wanted to know why. The Colonoscopy showed the bleeding mass and 8 of 43 nodes were infiltrated. I did folfox, after surgery and CEA numbers did not change. 8 months after treatment it was back in my vaginal cuff and pelvic nodes and left oblique. Still no signs in the blood. So all that is to say that with right side CRC which is more aggressive, especially in women, its more of when it will come back and we can’t depend on bloodwork to give us clues. I do wish I had known about those tests. My Dr did some testing to see what treatments outside the reg might be used. But those don’t sound familiar.

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@myjmyjiggers1 - I’m so sorry to hear about your challenging journey with colon cancer, and I can only imagine how frustrating it must feel to discover that the CEA test didn’t predict your recurrence. CEA has been found to be not that sensitive in detecting some right side CRC. Your experience with Stage 3c right-sided colon cancer—and now facing it again in your vaginal cuff, pelvic nodes, and left oblique—shows just how unpredictable and tough this disease can be. It’s completely understandable to wish you’d known about other testing options, and I admire your strength in sharing this to help others. A relatively new line of testing, CTDNA is becoming more available and is very useful in detecting recurrence as well as following adjuvant therapy. Would you like more specific information which you could discuss with your doctor? Would you mind sharing your CEA numbers, when was your last surgery? Do you know if a tumor tissue sample was retained (as this is required for several types of CTDNA tests).

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Profile picture for roywalton @roywalton

@myjmyjiggers1 - I’m so sorry to hear about your challenging journey with colon cancer, and I can only imagine how frustrating it must feel to discover that the CEA test didn’t predict your recurrence. CEA has been found to be not that sensitive in detecting some right side CRC. Your experience with Stage 3c right-sided colon cancer—and now facing it again in your vaginal cuff, pelvic nodes, and left oblique—shows just how unpredictable and tough this disease can be. It’s completely understandable to wish you’d known about other testing options, and I admire your strength in sharing this to help others. A relatively new line of testing, CTDNA is becoming more available and is very useful in detecting recurrence as well as following adjuvant therapy. Would you like more specific information which you could discuss with your doctor? Would you mind sharing your CEA numbers, when was your last surgery? Do you know if a tumor tissue sample was retained (as this is required for several types of CTDNA tests).

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I am researching it as we speak and going to ask my Dr about it. My CEA’s range from right before surgery July of 23 at 1.9. Right after surgery 1.6 September. Up to 3.1 in Oct then 1.9 in Dec of 23. They stay in the 1.7 range til Nov of 24 when we found the bleeding tumor in cuff, at 2.3. Stying in the 2.8 range since.

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Profile picture for myjiggers1 @myjiggers1

I am researching it as we speak and going to ask my Dr about it. My CEA’s range from right before surgery July of 23 at 1.9. Right after surgery 1.6 September. Up to 3.1 in Oct then 1.9 in Dec of 23. They stay in the 1.7 range til Nov of 24 when we found the bleeding tumor in cuff, at 2.3. Stying in the 2.8 range since.

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@myjiggers1 - that's very commendable to take these proactive steps. As your research has probably shown your numbers are all within the normal range for non-smokers. CEA is not always produced by all types of cancer... Your tests like Oncodetect and Signatera have demonstrated a better ability to detect recurrence and effectiveness of adjuvant therapy. Please keep us informed of how your meetings go with your doctor!

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I am basically undergoingthe same! My oncologist ordered a ct lung and liver biopsy for next week. starting back on first oral Xeloda aka Capaecitabian pending biopsy results I had/have stage 3b colon with one tumor removed last May 6.4 cm with 2 positive lympnoids my scans were clear until March 2025 after Oxaliplatin and Xeloda chemo for 6 months. She ordered a petscan when last CT with contrast showed these growths. and it was confirmed in lung and liver so thats why biopsies were ordered Ill keep you updated Has your oncologist suggested a biopsy?

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I am in a similar situation but my Signatera has been negative and normal CEA. Scans showed 10mm nodule in lung and a few smaller ones. Pet Scan could not rule out inflammation on the 10 mm, all other nodules were benign. My oncologist says he’s 95% certain it’s cancerous. I am going to see my radiologist for this one and just monitor regularly for any others. I had recent Covid and the flu prior to this scan so am not certain I am in agreement with my oncologist. I do not like that he is pushing systematic chemo again for one lung nodule. I am against more chemo as recent studies are coming out that it may very well cause recurrence of more aggressive cancer. I am all about giving my body time to heal and do its job. Chemotherapy will cause my body to have to fight harder. I am relying on God these days more than ever as he created my body and he is the one who knows how to heal it.

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Profile picture for nanem @nanem

I am in a similar situation but my Signatera has been negative and normal CEA. Scans showed 10mm nodule in lung and a few smaller ones. Pet Scan could not rule out inflammation on the 10 mm, all other nodules were benign. My oncologist says he’s 95% certain it’s cancerous. I am going to see my radiologist for this one and just monitor regularly for any others. I had recent Covid and the flu prior to this scan so am not certain I am in agreement with my oncologist. I do not like that he is pushing systematic chemo again for one lung nodule. I am against more chemo as recent studies are coming out that it may very well cause recurrence of more aggressive cancer. I am all about giving my body time to heal and do its job. Chemotherapy will cause my body to have to fight harder. I am relying on God these days more than ever as he created my body and he is the one who knows how to heal it.

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You mention that recent studies are coming out that chemo may very well cause recurrence of more aggressive cancer. As someone that has been on chemo for three years, I am very interested in reading those studies. Where can I find them? Thank you.

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