Hello. I have lurked in these forums for years, but have never posted. I thank you for all the information shared here. It has helped me over the years, and I am grateful.
I was diagnosed with colon cancer in 2014 at the age of 38. One large tumor in sigmoid colon, removed surgically, stage 2, no treatment afterwards. CEA was 1.8 at time of surgery. Through 2015, CEA crept up to 12, ever so slowly, but nothing ever showed up on CT scans. Changed oncologists and he did a liver MRI and found 6 Liver mets in January 2016. I was told they were inoperable because of the number, and chemo was my only option. Did FOLFOX and Avastin for 15 months, tumors shrank. Took a chemo break because I just couldn't tolerate it anymore. 4 months into break, all liver mets resurged and CEA went up to 26. This time, hotshot liver surgeon wanted to try and remove the tumors, which he did, successfully. He removed half my liver (over both lobes) and CEA went back <1, NED for 2 years. Did NOT do chemo after liver resection. LIver grew back perfectly, no problems after surgery.
In January of this year, routine CT scan found lung nodule. CEA just barely moved, to 1.8. (CEA is a good marker for me. When it's moving, cancer is growing, though this tiny move within the normal range wasn't much to go on.) PET confirmed one lung nodule and no other spots. We skipped biopsy and went straight to VATS to remove nodule last week. Pathology said it's colon cancer. They got a clean margin and no lymph nodes were affected.
Now to my question: oncologist wants me to do 3 months of chemo now. I do not want to do this. Chemo was hell. I had multiple Pulmonary Embolisms during treatment and nearly died, and even without the PEs, I could barely function. I have two kids still at home, one with serious special needs that requires my full energy and attention. I feel that we should save chemo for the time that will surely come, when there are no more surgical options. It doesn't make sense to me to do a preventative chemo and risk the cancer becoming resistant. And with no tumor to measure response, how will we even know this 'just-in-case' chemo is working? I know some people wouldn't be able to live with themselves if they didn't do the post-surgery chemo, but I am not one of those people. I need good quality of life right now in order to take care of my family. My thinking is that this lung met was seeded way back in 2014 when I had the primary colon tumor, and if 15 months of chemo in 2016-17 didn't kill those cells then, why would it kill any cancer seedlings now? I'm a very good surgical candidate, being relatively young and healthy, and my surgeons have said they can keep doing liver resections and VATs on lungs until it just isn't possible anymore.
Any opinions on my situation? Anyone with knowledge of protocols at major cancer centers like MSK or MDA for my situation, with a second recurrence after a long-ish NED period? Any studies you can point me toward, so I have something to take with me to oncologist, who is really going to push for more chemo? I'd be grateful for anything you can give me. Thank you so much and God bless.
Michelle in TN
(sorry, don't know how to do a long, informative signature like everyone seems to have, but my cancer history is all here)