Postby NHMike » Sat Nov 04, 2017 4:15 pm
Sorry that you have to deal with this at such a young age.
I was 3B as well though the local lymph nodes were termed suspicious. I've had surgery and the lymph nodes have gone to pathology and there's a possibility that I could be downstaged to 2 something though I don't think that the post-surgical treatment will be any different. My tumor was over 100 cm^2 so it was quite uncomfortable, even painful. The presence of the tumor made me want to go to the bathroom but I couldn't go because it was the tumor causing the sensation - not any material that needed to come out. So figuring out when I really needed to poop was a problem.
The effects of the radiation and chemo kicked in the second week I think and I saw regular flakes of the tumor coming out into the toilet. The flakes were light colored and had a little blood on one end. And this kept happening up until about two weeks after the end of the radiation. The MRI after chemo and radiation showed that the tumor was less than 10 cm^2, so 90% shrinkage. So they removed it last Monday surgically and I'm at home recovering from the surgery and I have an illeostomy to manage. My surgeon told me that there was a 10% chance of a permanent colostomy and that she would make the decision when she was inside. I think that the level of success partially depends on how low the tumor is attached to the Anal Verge as the lower it is, the less sphincter muscle can be retained.
I have read of cases where the tumor shrank so much that it was difficult to find and one of the folks with that case has posted here. But I never assumed that that would happen to me, particularly because my original tumor was so large.
As far as the bathroom pain goes, I guess I learned to try to go and then stop if I couldn't. It was uncomfortable when my body was telling me to go but I refrained from doing so but at least I avoided a lot of time and effort. The tricky thing is figuring out when it's real and when it isn't. BTW, I stated wearing Depends for those times when I got it wrong, and also to deal with the radiation effects near the end of the treatments.
My perspective was that I would have the standard course of treatment - chemo and radiation, followed by surgery, followed by chemo. There have been lots of us here that have gone through this and we're fine walking you through it as it happens. If it should be the case that you have a complete response (tumor is completely gone), then you can decide with your team (surgeon, oncologist, radiation) as to whether or not you do surgery.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT