Hi Hopepray,
I am so glad for you that you've apparently had a complete or near complete response to the neoadjuvant therapy! It sounds like you have reason to be optimistic.
When you say "get the surgery", what surgery is being recommended to you? I understand that the usual recommendation is a Lower Anterior Resection (LAR) and that is a major surgery with a lot of ramifications for your future health, organ function and so on. Another possibility is a local excision of any scar tissue and an attempt to grab a lymph node, plus some margin for testing. This LE (local excision) procedure would be called a TAMiS procedure. It is far less radical than the LAR and less likely to leave you with ongoing issues around organ function, colostomy, etc.
I think you will have to weigh up the risks and make your decision. I was in almost exactly your position in early 2019 after my nCRT with a near complete response. I was scheduled for the LAR, as that was the recommended treatment for T3N1M0 (without consideration of response to nCRT and without any W&W protocol). My surgeon never even mentioned the possibility of a LE surgery or W&W.
As the surgery date approached, I was reading as much as I could about what to expect after the LAR, and I was concerned. I looked for other possible approaches and found several studies on LARS, surgical and oncological approaches to rectal cancer, W&W and this thread. I decided to speak to my surgeon about possibly performing a TAMiS procedure instead of the radical LAR. I was (and am) aware of the potential of recurrence, but I decided that was a risk I am prepared to take in order to keep my rectum and avoid the loss of that organ and possibly loss of continence etc. (NOTE: I had already suffered a radiation injury from the nCRT resulting in permanent ileitis - so I have now had experience of the digestive upset, urgency/threat of incontinence and other problems, which took time to get under control. With that injury, my risk of LARS (complications syndrome after a LAR procedure) was higher - and for me, that risk was already too high).
Luckily for me, although my surgeon said that the LAR was the "gold standard" procedure, he was open to my request and in fact had done the local excision for another patient 4 years previous (and the man was still cancer free). My surgeon in fact is a local expert on that procedure and teaches it to other surgeons, so I was really lucky. He agreed to preform the TAMiS, provided that after a pre-surgical flex sigmoidoscopy he could confirm that my response had been as reported after the MRI (nearly complete with just some remaining scar tissue or possibly a small fragment of tumor remaining) AND if he could see that he could perform the surgery getting sufficient margins. We did the flex sig, he was satisfied and we went ahead with the LE in early April.
I had the chemo port installed in late April and began the clean up chemo on May 1. I had 3 full chemo infusions at full dosage over 5 weeks at which point my oncologist paused the chemo due to my extreme weight loss and low WBC in labs. In August, follow up tests showed NED, and the oncologist decided it was OK to remove the port. I had a follow up MRI in October2019 and another flex sig with biopsy in November2019. All clear.
My spring 2020 follow ups were delayed due to covid and I am now scheduled for the MRI on July 6 plus labs and a televisit with the oncologist. I am in the process of trying to schedule a colonoscopy for July as well, since we blew past the March flex sig appointment (covid) and now I am due for the colonoscopy.
I feel great and hopefully all is still well. I've regained the lost weight, my labs were almost back to normal in February at my annual checkup with primary care physician (wbcs still a bit below normal), and my body feels mostly normal except for the lingering ileitis symptoms which I am able to manage now with over the counter meds most of the time and only resort to prescription meds in a bad flareup (not since January).
It's not an easy decision, Hopepray. You have to make the one that is right for you. For me, living alone and having no one nearby to help me, I felt (and still feel) that it was better for me to go the route I could manage best and take the risk. Reading about W&W helped me gain confidence about that decision.
NOTABLY: After the surgery, my surgeon said that he felt that cases like mine might actually be better treated with a LE as I had opted to do - and he had been in discussions with fellow surgeons out east who were coming around to that point of view. After the November flex sig, he told me that he was now very glad indeed that I had chosen to go the LE route.
Good luck with your decision, Hopepray! I hope you continue to do as well as you've been doing so far.