Postby rockhound » Fri Sep 08, 2017 3:01 pm
If you know you are Lynch positive, I would suggest talking to a genetic counselor. They can provide you with actual statistics about the other Lynch cancers (not all Lynch mutations have the same cancer risks) as well as suggest screening schedules. For example, if I would have known I was Lynch positive, I would have started annual colonoscopies at age 25 (oops!). Also, for me, it was recommended that I get an upper GI endoscopy every two years (but annual colonoscopy). I am also going to start seeing a GI doc in a high-risk Gi clinic.
Also, remember that statistics are statistics- my parent carries the same mutation but is 75, eats a diet of crappy beer, steaks, burgers, and potato chips (basically that's it) - no cancer or any related issues. So just because your risk for something is higher than "normal" does not mean that something is going to occur...of course the enhanced risk is why you want to be proactive about the screening......
45 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
5/18 - CT, NED
11/18 - CT, NED
5/19 - CT, NED..moving to yearly CT scans
5/20 - CT, NED
5/21 - CT, NED (4 yr. scan)