HNPCC

[Guest]

Is anyone familiar with this genetic disorder? If so, what is your experience with it? I have it (age 44) and my son (age 11) has been tested (positive) with it! I know a lot about it, but there are very few people to talk to about it. Most doctors don't know what it is or how to deal with it.

[Holly]

Welcome to the Colon Club!

What is it that you would like to know about HNPCC? I am a 33 year old stage IV survivor. I was dx at 30 and have been comprehensively tested for genetic links. I have tested negative for all current tests.

You may go to one of the following websites for more information:

www.myriad.com

www. creighton.edu

Hope this helps! Know that you and your son are in my thoughts and prayers!

Hugs!

Holly

[michele]

My GI doc called yesterday (who I haven't seen since the colonoscopy in Dec) and offered me the testing for HPNCC at a local center. I go on Thurs next week. The woman that I spoke with said insurance may or may not pay for it and that if they didn't it could cost $2,000! I want the testing, but I just pray the insurance will pay for it. I really can't pay for it right now with all the other bills. She did say that if I am tested and am positive, that my siblings could be tested and it would only cost they about $400 (since they would have my baseline DNA). I thought that was interesting.

Good luck to you with your testing. I know there are other genetic possibilities out there, but they believe this is most likely with my family history.

michele

[Holly]

Michele,

I am happy to hear that your medical team is being proactive and recommending genetic tetsting. I was dx at 30 with stage IV CRC and have been genetically tested. I tested negative for HNPCC.

May I recommend, call your the woman that you spoke to about genetic testing. Ask her for the CPT billing code for the genetic test. You can either ask her to call your insurance company for preauthorization for the test (get it in writing) or you may call your insurance company. Give them the CPT code and ask if the test will be covered. Regardless, get the confirmation in writing. Genetic testing is very expensive. Do you know where your blood will be tested? I ask only because if you in fact test positive for HNPCC, your immediate family will be offered testing for no charge. So may I recommend that you wait to have them tested until your tests are complete and resulted.

If I may help in any way or if you have any questions, you may send me a line and I will do what I can to be of assistance. Know that you are in my thoughts and prayers!

Hugs!

Holly

[michele]

Thanks Holly,

I actually planned on calling my case worker for my insurance company tomorrow to check on whether or not they pay for the test due to my family history.

I will also ask next Thurs about my family being tested free if I am positive.

Thanks for all the info. This site has been such a blessing.

michele

[luv2teach]

i have hnpcc (lynch syndrome) MLH1. i had stage III at 28 and im 36 now. i have tons of articles and info on it if you have specific questions. let me know. xo