Thanks for starting this Kathryn. I too have noticed many of the same things as everyone else. Kiwi's post sums it up well. I'd almost allowed myself to think I was over all of this, and then bam! my CEA was 14.9. It was a shock because I just happened to ask one of the nurses what my last CEA was, and he said it was 1.8 but is was in Sept 2012, so let's order one (I was in for my 3 weekly Avastin). Since is takes a day to come back, I just said "someone will let me know if it's abnormal?". So 3 weeks later and I am back for Avastin, hadn't heard anything so I asked the nurse what it was. She comes back and says she need to talk to the onc before telling me - not a good sign. My usual onc was away, so the cover onc said what did I want? CT? I said that my usual onc had also orderd a CEA for that day (he didn't know the nurse had ordered it) so how about we see what it said before worrying too much. He agreed. Stopped by my GP who was copied on the results and it was now 18. Then had to wait a week to see my onc, who then cancelled due to unavoidable issues and finally saw him yesterday. He agrees its most likely cancer activity, so PET ordered for tomorrow. I see him late Wed to find out the result. It's brought me back to reality that I'm not over this. If the PET is clear, we probably won't treat as he wants the cancer to declare itself, in case it resectable. If it shows something, we will deal with that. But I'm not even sure a clear scan is great news, it just means more waiting. Other people don't seem to get this. At least he said if it's the same lymph nodes lighting up as at the start, that may consider surgery since it may mean it's well contained and as he said "the surgeons get excited by that!". It's like people saying CEA's unreliable - I think a low CEA doesn't mean you DON'T have mets, but a high CEA (>10) almost certainly means something is going on.
It's amazing that in a minute you can go from feeling back to normal, to feeling like their is no future. How I wish I could go back to an uncertain long future, rather than an uncertain short future.
Sorry for the rambling, guess I just needed to spill my guts.
Last edited by Asterix
on Mon Apr 22, 2013 4:40 am, edited 2 times in total.
Stage IVb age 37 Nov11
1 year NED
lymph node, lung, spine, rib and liver mets
GNAQ Q209P mutation > Mekinist Jul14
Radiation bone mets Aug14
FOLFIRI Nov14 >
Home Xmas 14