Waiting for treatment to start

My tests are now all complete and I have a treatment plan.  It is so true what other people have said on here that you feel a bit better when you know exactly what you’ve got and what’s happening.  The waiting is just tortuous.

I have quite a large very low rectal tumour (4.7cm) that is in a difficult place which is threatening the circumferential resection margin but, thankfully, there is no spread. I am due to start 5 weeks of external beam radiotherapy with concurrent Capecitabine chemo on the 11^th October for downstaging, and bridging chemotherapy with Oxaliplatin and Capecitabine post down staging.

My oncologist has told me that there is a 30% chance of a complete response rate to treatment. I asked if tumour shrinkage (if response isn't complete and total) before surgery could potentially increase the margin and avoid a permanent colonoscopy. She said yes.

A few days later I had an appointment with my colorectal surgeon, whose honesty was quite brutal: He said the complete response rate to treatment is more like 10% than 30% and that a permanent colonoscopy was the only option on offer for me. He said surgery will take place 10 – 12 weeks after downstaging chemo radiotherapy has finished. He was very matter of fact, and adamant that I am destined for a permanent colonoscopy – he said that once the treatment cycle had finished I would have no function and loss of control – this was certainly not relayed by the oncologist.  In fact, she said my current problems may improve after the treatment.

I am confused now by the conflicting responses by the consultants.  Does anyone have any experiences to share about downstaging?  Has anyone been fortunate enough to have complete response to treatment? Has anyone managed to maintain bowel control after radiotherapy?

I’m thinking that if a permanent colonoscopy is my destiny, why put me through 5 weeks of daily chemo radiotherapy? Why not just surgically remove now?  I have total respect for my colorectal surgeon, but I am scared he may be taking the ‘easy option’ (if there is one), rather than trying to preserve some rectal/anal function.

I would really appreciate anyone's thoughts on this.

Thanks for reading