HNPCC Info

Yesterday I was very emotional, I think that bringing up mom makes brings out a lot of emotions that I haven't experienced. I guess that is part of the grief process and it keeps coming back. On Sunday I imagined she was talking to me like "I told you so". I am still angry about mom and that being diagnosed with HNPCC did not do her a bit of good. It isn't like they did any thing different. The surgeon didn't even do the surgery. He does research but if he doesn't pay attention to the basics of caring for his patient and treating them with respect I have no respect for him.

Cancer risk is also increased in genetic forms of colon cancer. There are two known genetic forms of colon cancer: familial adeno-polyposis (FAP) and hereditary nonpolyposis colon cancer (HNPCC). Genetic inherited cancers account for 5-10% of all colon cancers (Burt, 1997). Researchers have identified single genes that lead to colon cancer susceptibility. These genes are transmitted to offspring through an autosomal dominant pattern; offspring of these carriers have a 50% chance of inheriting the gene mutation and the associated risks (Glaser, 1998).

Even though I have been diagnosed with HNPCC, I did not meet the criteria most physicians use to determine risk for HNPCC. The Amsterdam criteria is a tool used by many physicians and health care workers for determining risk for HNPCC. I would not have been high risk because I did not have a first degree relative who had colon cancer, although my twin sister had a history of polyps at 18 and 26 and I did in my 30s.

http://www.fascrs.org/patients/family_history_registries/ What benefit is there to joining a registry? When I discovered I had HNPCC, I contacted Creighton University. I could fill out the paperwork but what would that do? They don't do anything with it. You give confidential information and your on their list. It doesn't mean you will get additional screening or access to leading advocates for HNPCC. It is another theme of the process, its just a name it doesn't do anything for you. I was filling out the forms and realized they didn't invite me, they aren't going to do anything for me so why fill it out? In the same theme, it doesn't mean very much to every surgeon if you are an HNPCC carrier, that is very evident in how my mother was treated for her colon tumor. It was a name only, it didn't predict that the surgeon was going to do anything different.