Postby jscho » Thu Mar 20, 2014 2:49 pm
Sorry to hear about the dysplasia. About 2 years after a stage IIIc cancer diagnosis and right hemicolectomy for a tumor found in the cecum (where your dysplasia is), I had a routine colonoscopy and 2 DALMS (dysplasia associated lesions) were found. One GI specialist recommended watching it, which made me very uncomfortable after reading the literature. I consulted with a surgeon, who said that with high-grade dysplasia, there is something like a 25% chance there is actual carcinoma somewhere. He recommended a total colectomy. This is the usual recommendation.
I too had UC or some form of very mild Crohn's for around 25 years before my diagnosis. Since the disease didn't seem to involve the rectal area very much, I pushed to have a sub-total colectomy with ileo-rectal anastomosis. I preferred to avoid an ileostomy, figuring that I could always go that route if needed. The surgeon thought this was a reasonable (though not ideal) thing to do. I had the surgery 1.5 years ago, and have been doing well. The downside is that I still need regular colonoscopies, but this is a very minor procedure since I only have 14 cm of colon left. My lifestyle has certainly been affected to some extent, but life with little colon is still manageable.
You might want to discuss this as an option.
Best,
Jeremy
p.s. As for the cancer, I have now passed 5 years from diagnosis with no recurrence. I have been extraordinarily lucky.
Colon cancer dx Feb. 24, 2009, T3/N2/M0
Right Hemicolectomy Feb. 26, 2009
Stage 3C: 4/19 positive nodes
High grade adenocarcinoma with tumor budding
FOLFOX6 April 15 - Oct. 1, 2009
Elective sub-total colectomy July 3, 2012 due to 2 DALMs
Currently NED