It sounds like we are at similar stages in treatment - although I think you are a little ahead of me. I am at about 9 weeks post nCRT.
My surgeon had planned to do the LAR procedure on me as a matter of standard treatment protocol for a T3N1M0 (although my T3 was borderline - at first they called it T2 and I was going to have a LE and possibly some chemo after). When an MRI determined that the tumor was a T3 and there were two sketchy looking nodes, (N1), the protocol went to nCRT first, followed by LAR and then follow up chemo.
But, I had a radiation injury -- and now have permanent ileitis, which after a horrific month, is now well-controlled with medication and I am doing really well. I have started to regain some of the weight I lost and I am able to eat more or less normally.
The plan for the LAR was in place, and I was doing a lot of reading about LAR syndrome. WIth my now pre-existing ileitis, I am almost certain to develop LARS and possibly a severe case of it. I decided to do even more research -- including finding this thread which was the most helpful thing I found at all! I had never heard of the W&W protocol and I am so thankful prs posted this thread and this discussion was here. Thank you! I then found medical journal articles, clinical trial studies and other highly reliable data to help me figure out what I want to do and how to advocate for myself.
What Mozart said above is true - some patients with T0-3, N0 are over treated. My oncologist and surgeon both mentioned this recently in the course of our discussions about my treatment plan.
Anyway, I was concerned that he might "fire" me as a patient for questioning the original plan (what is considered the current best practice/"gold" standard of care) , but I decided to ask him to consider performing a Local Excision surgery on me instead of going straight to LAR>
I had hoped to do something similar to what weissoccermom had done - have the LE surgery (with full thickness excision for biopsy, if possible) and preserve my organ function - because I am unlikely to have a successful function after a stoma reconnection due to the severe and permanent ileitis - and I wanted to still follow up with the adjuvant chemotherapy.
My surgeon was - luckily - willing to consider it. He is also an expert in TAMIS LE procedure, which is helpful to my situation. He said that my preliminary response to the nCRT looked really good (I had had a CTscan in early January, midway in the nCRT treatment due to the severe enteritis symptoms which put me in hospital - and even then, only 3.5 weeks into the 6 week cycle, the tumor was described as "significantly reduced". SO, the doc said he was willing to do LE if my MRI and a follow-up flex sig scope/biopsy looked good too.
My MRI came back showing "the mass seen on previous MRI had nearly completely disappeared" and, in fact, what thickening that remained could be radiation scar tissue. Also no evidence of lymphadenopathy (ie no more sketchy looking lymph nodes). That was excellent news and a sign that my response had been near complete or complete.
The follow up flex sig test and biopsy likewise looked good and noted scarring and some inflammation (radiation related) WITHOUT evidence of malignancy. The surgeon said that visually things looked pretty good and except for the expect areas of scarring, he thought the rest of the area looked like quite healthy tissue. He didn't mention anything about color of the scarring or whatnot, though, so I am unsure if that was a criteria for my team. My team is not involved in any W&W studies, so we are kind of flying by the seat of our pants at my insistence.
But more good news. There are several ongoing studies going on now, as others have mentioned - and in fact, my doctors both agreed that it was possible that when the studies and trials are complete, a LE W&W approach might very well become the new "gold standard" for cases like mine which were borderline between T2 and T# to begn with and then had a complete or near complete response to nCRT. So they were willing to support my wishes. Also my surgeon consulted with a colleague in PA (I wondered if it was the doctor weissocermom called
) who agreed with my surgeon's thought that perhaps a LE would not only be OK but possibly the best course of action for me. So that was great to hear.
One thing I should say here is this: I was determined to go with a LE plus W&W or even just W&W (if my surgeon refused to perform the LE and I could nto find another). I was not willing to undergo the LAR under any circumstances, at least at this point. SO, I'd like to make it perfectly clear that my doctors' first advice was for me to undergo a LAR-- and they still seemed to prefer it at least until the 6 week post nCRT MRI came back and the flex sig scope was performed. I advocated strongly for what I wanted and was lucky that the surgeon and oncologist were willing to support me. As my results came back so good, I think they are quite comfortable with the decision now, and that is when I heard the opinion that perhaps some cases are "over-treated".
So, instead of the radical surgery, I am going to have a local excision on April 5 - which is exactly 10.5 weeks after completion of the nCRT. A few weeks later toward the end of April, I will start the post op chemotherapy. Right now, it is expected to be a combination of Capecitabine (Xeloda) and Oxaliplatin (Eloxatin) with a chest port used for the infusions of the Oxaliplatin. I'm a bit uneasy about the Oxaliplatin part of it, as I am concerned about neuropathy. I tolerated the Xeloda quite well in the nCRT phase (combined with radiation).
I am comfortable with the decision I made and I understand the risks. For me, personally, it is the right decision at this point in my life.
ETA --- It took me so long to write this out with a few interruptions that I see prs, the OP, has also posted. I will post this quickly and come back to read and add later.