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HNPCC survivors & NED

Posts: 133
Joined: May 2008

Hi, Valerie. Dx. 4/08, stage 3 1 positive node out of 18, surgery then 7 mos. chemo. I'm looking for other HNPCC survivors to find out what your maintenance plan is and your schedule for screening. My gastro doc. is telling me that I should not receive another colonoscopy until 2012. My last one was 01/09. I told them that I refuse to wait. My father, brother, son, and uncle have had this disease. Thanks

Posts: 16
Joined: Jul 2007

I saw my gastro on Friday. I am stage III one node survivor from 08/05.
I had Endrometrial cancer 2004 and two colon tumors 2005. His recomendations are annual endoscopy with colonoscopy along with annual CAT scan for the rest of my life and urine cystology. I have no reproductive screening besides annual vagianal scraping tested beacuse I had radical hysterectomy.
I would reccomend Yahoo group for HNPCC. Look in old posts, they try to keep updated on screening guidelines for HNPCC. Have Dr. look up guidelines in NCCN.
He told me the CAT scan screning for me is because of the two tumors at the same time.

Good Luck

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