September 14, 2007 at 7:32 pm #16730nnParticipant
All Genetic tests that are currently available are listed at http://www.genetests.org, a government funded site that lists laboratories conducting testing. Any reputable lab that offers genetic testing for cc would be listed on that site, and there is currently no hits when one searches cholangiocarcinoma. You should be very careful about the insurance implications of whatever testing you are considering, and also to whom you disclose your family history. [You should also be aware that there is much “crackpot” testing services advertised out there.] While there may not be testing or knowledge of specific genes implicated today, one does not know what kind of relevance that information will have in the future. When you see genetics professionals, you might give some thought as to how the information in the geneticists’ chart can be kept separate and anonymous from your broader care history.
Hope this helps…good luck.September 14, 2007 at 8:12 am #16729
So very sorry to hear about your husband.
The reason for my above posting (google news) is purely to share information as it reaches me with the hope that somehow collectively, we may gain more knowledge of this disease. I am personally not aware of any study proving a genetic link to CC.
What wonderful news hearing about a possibility of a transplant for your husband
My best to you,
MarionsSeptember 14, 2007 at 4:49 am #16728ranchbarawildblue-netMember
Neither my husband’s CA19-9 nor his CEA were elevated when he was diagnosed with CC.
I did not know there was a genetic link and would like more information, resources about this, is there really a genetic link. I ask because the dr. is recommending a live liver transplant for my husband and one of my children would be the obvious donor.September 14, 2007 at 3:59 am #16727
I would consider having a blood test at least once per year, and requesting the CA 19-9 results. Although, it is not conclusive these tumor markers are always elevated in the presence of CC.
If you are presently covered by insurance, you might want to establish a relationship with a physician who will initiate further testing at regular intervals.
You cannot be denied insurance for a pre-existing condition if the condition does not exist.
This is assuming you are covered by insurance at this time.
My heart goes out to you for having so many of your family members being diagnosed with CC.
My best to you,
MarionsSeptember 14, 2007 at 3:39 am #16726
I have subscribed to “Google Alert” topic Cholangiocarcinoma. This is what I have received today and thought to pass it on.
“Hannin is a 44-year-old woman from the Hunlock Creek area who was diagnosed eight months ago with Cholangiocarcinoma. This devastating disease is a rare form of cancer which invades the bile ducts and the liver.
Proceeds will help defer HannonSeptember 14, 2007 at 3:20 am #16725billParticipant
My wife was diagnosed with CC at age 39, her brother died of kidney cancer at age 36, and her sister had brain cancer in her early 40s. My wife was genetically tested at Mayo Clinic and they found no reason to tie these diagnoses together or with any prior family history. Hard to believe.September 5, 2007 at 5:58 pm #16724ara81Participant
I don’t think any insurance company can deny you coverage or charge excessive premiums for family history. There may be some law that supports this but I’m not sure. I was told this because my mom was later diagnosed with another primary cancer (breast) and we conducted genetic testing for that. They told me that whatever the result, it won’t affect my future coverage.
And another thing for you to think about…the fact that you are very aware of this condition makes it less likely that it will be caught at a later stage, I suppose. I have to tell myself that I even though 50% of my DNA comes from my mom, the other half is from my dad, giving me a shot on never having to worry about this kind of diagnosis…
AbigailSeptember 5, 2007 at 10:54 am #16723thecdrMember
unfortunately there is no such testing, we just have to keep praying that someday….September 5, 2007 at 10:47 am #672sadandconfusedMember
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
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