I was wondering if anyone has had any genetic testing for CC???? My mom was dx'ed 8/8/07, she is one of 10 in her family, she has lost 3 brothers and her mom had this disease. My mom took great care of herself and never missed a physical and here we are stage 3 CC and no great hope, portal vein is partially occluded so we can't opt for surgery. Her gastrointerologist rec. my brothers and I under go genetic testing. He did say that with knowing you are faced with a whole new set of issues and how you live the rest of your life. My concern is also the fact in today's world will I ever be able to obtain medical insurance if I am high risk will they consider it pre-existing???? I have 2 small children and don't want them to loose me at such a young age as my mom is only 59 years young she just had birthday. Please let me know your thoughts and if anyone has had genetic testing where did you go. Thanks
To Joyce and Cherryle thank you for the comforting words. I only found this site a few days ago and have been reading all I can, while it gives great information and support, I am saddened that so many are going through this and so many have lost the battle. We go tomorrow for our first stent placement and and next thursday we go to shands hoping to get some better news, the cancer is in now in the portal vein and I haven't seen too much that can be done in this stage, but I am still hopeful.
I am not ready for the road ahead. My mom was dx'ed on 8/8/07 my birthday w/cholangiocarsinoma, I am doing all I can to set appointments and and obtaining and much info as I can, she is not a surgical candidate at this time as it has spread into the portal vein. I am so sad my 5 and 2 year old live for their NONNA, as she does for them and my 11 year old niece It breaks my heart to think she will not see them grow up. For brief moments during the day I forget about the dx, as I do about life and care for my children and my mom and then it's time to drain her biliary tube, disp. meds, or make another Dr. appt. and I relive the nightmare and begin to grieve all over again, I have been very strong infront of my mom but the minute we are apart I can't stop crying. Tina