This is my first post, but have been reading and getting as much info as I can since my husband's dx (see signature) in Jan. You guys are a wealth of info. Thank you so much!!
Ticktock10, how are you doing? We are hoping to have a "tough" decision rather than the obvious decision of surgery when my husband has the endoscopy/biopsy in May- it will be 6 weeks since end of radiation so hope it isn't too soon?? And, Ajane, I too will read about TE/TEM so that is good info and glad to hear your story! Hope you continue to heal up well!
In the meantime, I am looking at where we go for 2nd opinions in case there is the chance to look at sphincter preservation surgery, etc. or other advice to avoid the APR.
We have good care in our area. Radiologist oncologist is MDA trained, surgeon is colorectal/board certified, etc. Surgeon told us of the 3 similar patients he had with like low rectal cancer, 1 went for colostomy and 2 opted for no surgery. Those without the surgery are both 3 years out with no recurrence. And, our radiologist said that about 25-30% of the patients he sees have complete response to the chemorad. So, we went into this hoping we would beat it without having to have the APR/colostomy. It is not the surgeon's recommendation to go without the surgery. He is doing the endoscopy/biopsy after husband is more healed in a few weeks and we hope for NED at that time.
My husband handled the FOLFOX well, but only had 3 days a week every other week during the 5-6 weeks of chemorad so compared with some I have read about, it sounds like he had it easy! He is 2 weeks away from all treatment and seems to be almost "back to normal" with no lingering effects as far as we can tell now. I realize this might change, but we are very hopeful and grateful. The oncologist wants to do another round of 5-FU before the biopsy as he isn't comfortable going so far in between treatment before we get a pathology--even though the CT scan shows no mass. We are ALL for this. Even though we don't know long term effects, seems risk-benefit is pretty clear.
I want to be the best support possible so that if we do have to make the tough decision for APR (if the biopsy comes back with any positive disease) we are well-informed. It looks like we'll have about 2 weeks after biopsy to determine next steps for surgery, etc. The surgeon and oncologist both are aware he doesn't want the surgery if at all possible. And, he is healthy, didn't lose any weight during chemorad--exercises regularly.
Thanks, again for support and advice and if anyone knows of more similar posters/cases/research, please share.
Rebellove=Wife of 52 y/o male
1/20-Ultrasnd dx Rectal Cancer
Stage IIA(T3, N0, M0)-3cm, app 6cm from AV
28 days rad,3 rnds-FOLFOX
4/7-CT Scan-no visible mass
4/15, 4/29-5FU leucov