Postby Kathryn in MN » Thu Aug 09, 2012 11:28 am
I don't tolerate chemo well at all, but if I had KNOWN metastasis that can be seen on a scan, I'd do chemo. I always have.
Take my current situation as a possibility...
My original progression - I had no symptoms - I was fine other than still trying to get over the side effects of FOLFOX (only off for 3 months when we found progression). My CEA was elevated. A re-check showed more climb. A PET showed multiple node mets, and biopsy confirmed they were CRC mets.
I had multiple distant node mets. I did FOLFIRI + Avastin for 14 months till I just couldn't take it anymore. The chemo knocked out my periaortic nodes that kept me from other options (no radiologist or surgeon would touch 2 of my mets due to their location). Chemo kept me stable - it got rid of some mets, and kept others from growing - shrinking most of them. I did daily radiation to knock out the remaining multiple nodes in two separate areas last fall.
No treatment since last December. CEA slightly elevated, but not taking off. Scan the end of January clear. Scan in March clear. Complaints since my April oncology appointment, but dismissed as not possibly due to cancer since I just had a clear scan and it wouldn't make sense to have shoulder pain and pain in my upper abdomen from cancer - the shoulder was unrelated, and the abdomen was from the radiation, and the fatigue was just because I won't ever be like I was pre-cancer....
CEA up just a bit in June - still having the same complaints, but - can't be cancer.
My complaints have gotten worse in the last 6 weeks, but couldn't possibly be cancer - so no rush to do anything.
CEA up a little more last week, so that meant time to scan again. I insisted on a PET. I am glad I did, or I'm not sure they would have found that my shoulder complaint was legit- I have a met right in my shoulder.
I do have a LOT of spread. It can happen very quickly and get out of control. Mine has. Hindsight again, but I should have demanded a scan again in April or June - a PET rather than a CT due to my history. I have multiple bone mets - spine, clavical and shoulder. I have multiple node mets all over different areas of my abdomen and chest.
You might feel fine, but while you are feeling fine, the tumor load you have now can seed other tumors. You say you can't not work, but if the cancer takes off, you might not have a choice but to stop work. If you can find a way to keep it in check, you can delay that. I've done treatment of some sort anytime I KNOW of cancer larger enough to see and treat in my body. Unfortunately we didn't stay on top of it enough because of my freak situation...
Everyone has to make the choice that works for them and quality of life vs quantity and more considerations - but don't kid yourself into thinking cancer can't be spreading if you feel fine.