I'd love to hear from other patients' experiences with the W&W strategy. I was one of the lucky ones to have a cCR and am interested in learning more about this option.
So far I've had all of my treatment, from DX until now, done at Johns Hopkins Hospital. When I met w/ my surgeon to plan the surgery I asked him about his thoughts on the cCR, how this would affect the surgical plan, and what he could tell me about "watch and wait." Much to my annoyance he had not even looked at the CT/MRI results that had come out four days earlier. He quickly skimmed them and said he wasn't going to change his surgical plan: a complete removal of my rectum to w/in a cm or two of the dentate line, with a TME and an anastomosis. I asked him why he'd remove nearly the entire rectum when the tumor had been 9cm from the anal verge. His response was that this way he didn't have to worry about the margins and I wouldn't miss those few extra centimeters worth of rectum. When asked about W&W he said that he didn't know much about it. He told me that if I wanted to know more I'd have to go read all the medical journals I could find and then I'd know as much as he did.
Challenge accepted: I spent my weekend reviewing every report I could find from Dr. Habr-Gama, OncLIve, ASCO, NIH, Lancet, Memorial Sloan Kettering, etc. With a December 2015 Lancet Oncology report in hand I then met with my Medical Oncologist and asked her about W&W. She said she hadn't seen the report, didn't know much about W&W, and that I was her first patient who's ever brought it up. Ugh.
Luckily my Radiation Oncologist is all over the idea and thinks I should definitely consider it.
The JHH tumor board met on Tuesday and, not surprisingly, says I should follow the surgeon's original plan.
So I've canceled my surgery that was scheduled for today and I'm making arrangements to visit MSK in NYC. They've had a W&W program since 2006 so they'll be able to answer my questions. If I end up deciding that the risk is too great, or if MSK thinks I'm not a good candidate for W&W, I think I may need to find a new surgeon. I found my guy's complete dismissal of my concerns about LARS, and sexual/urological nerve damage, frustrating. His "easier for him" near total rectal removal plan is also very disconcerting.