Postby Daisymae » Mon Jul 08, 2013 7:11 pm
Hi Laurie, I also had a tubulovillous adenoma w/high grade dysplasia discovered Feb 2012. Mine was in the rectosigmoid and also resected. It was 9x6 cm. My dr is at Sloan Kettering in NYC. It was recommended I have a follow up colonoscopy 1 year later. Because we wanted to try and get pregnant, my doctor did a colonoscopy in Sept 2012 (so 7 months later) so that we could try to get pregnant Nov/Dec (6 months post reversal surgery). That colonoscopy did not show any polyps. Dr at MSKCC actually said I could go as long as 2 years before my next colonoscopy, which I would never do. I am way too paranoid! I am actually pregnant and due next month (!) and plan on having a follow up colonoscopy sometime between Sept and December (so 1 year - 15 months since last colonoscopy).
We have discussed at length with my dr at MSK about what the proper follow up for something like this is, given my age is 35. Between this doctor and my GI (who trained at MSK but is now private practice), and the genetics folks at MSK, we have come up w/the following surveillance given my history and lack of family history of polyps, Colon CA or any other associated CA's: Basic surveillance for age appropriate things like mammogram. My GI feels the things that "travel" with colon CA and should be looked at are skin, ovaries and uterus, and of course colon. Because my polyp was high grade dysplasia and "not cancer per-se" according to my drs, they feel further MRI, CT/PET etc is not warranted. Instead they recommend the following: yearly colonoscopy for first 1-2 years, go from there. Upper endoscopy every 1-5 years, sooner if any suspicious GI symptoms arise. Yearly skin check. Yearly pelvic and abdominal ultrasound (way to look at uterus, ovaries, etc without really invasive testing) and yearly physical including blood work.
I did not see an oncologist because none of my doctors felt this was necessary.
I think it is great you are being so proactive with your surveillance and follow up. From what I understand, it is rare to catch things in this early stage. I had 3 doctors (including a well respected NYC GI) tell me I had nothing to worry about, was being paranoid, just hemmoroids,etc..... Glad I did not listen to them.
Please feel free to PM if you have any other specific questions.