May 9, 2008 at 2:08 am #19982lisaParticipant
My mother took DES when she was pregnant with me. I wonder sometimes if that has anything to do with my cancer.May 8, 2008 at 8:48 pm #19981jeffgMember
Chris … Thank You for your input and explanation. There is no way I could have explained it as clearly and scientific as you. I have done research in this area and have come up with basically the same conclusion. I personally feel it is an area that needs more investigation in form of a comparison study of different individuals of different geographical locations to find a common donominator and /or eliminate known suspected reasons. There was a member back a while named Woody who was attempting just what I mentioned. However he passed on before he was able to gain anything conclusive. God Bless you Woody you were on the right track!
Jeff G.May 8, 2008 at 4:40 am #19980chrisaParticipant
I believe that there is no study that points to Cholangiocarcinoma being a familial cancer. Like all cancer, cholangiocarcinoma is a genetic disease, but should not be confused with hereditary disease.
Inheritance of mutant tumor suppressor genes explain many familial cancers, however, mutant proto-oncogenes are seldomly transmitted through the germ line.
So, for a study to conclude that cholangiocarcinoma is hereditary, the investigators would need to identify the genes responsible for the disease. Family history studies, in my opinion, are of little value as it is difficult to disentangle environmental factors (since most families live together). So much more work needs to be conducted on CC!
Referring to a previous post in this thread, I find it strange that any doctor would order tests on a child of a CC patient based on hereditary concerns alone. There are no screening tests for CC that I am aware of, and the tumors are notoriously difficult to image. Surely, the child was presenting with something more than his heritage!
I write this in hope that your mind be put at ease. Your question is one we all think about, but today there is nothing telling us that we should worry.
With warm regards,
ChrisMay 7, 2008 at 9:44 pm #19979747jetmechParticipant
I have the same question.
My grandfather died of bone marrow cancer and had a stent in his liver also. Had a very high iron content.
20 years ago I remember asking my dad about the rust looking stuff on his feet. Looked like it was migrating up his legs. Darker at the bottom and lighter at the top. Got much darker as time went on. My dad was dx in april 07 interhepatic.
After his dx I was checked for liver function and found my iron content was around 450. My dads was 600. I also have the rust looking stuff migrating up my legs.
After researching more I found my grandfather had the same stuff on his legs. My brother has normal iron content and no rust on his legs…………
I thought Hemochromotosis ( Spelling )? They checked me for the gene and found that both my dad and I do not have it. I found they only check for 3 genes but if I remember, 15 different genetic defects that can cause this.
TomMay 7, 2008 at 8:28 am #19978devoncatParticipant
I think the hereditary aspect depends on “how” you got cancer. If you got it as a result of sclerosing cholangitis or ulcerative colitis, there may be hereditary link…or it could be just bad luck.May 6, 2008 at 8:25 pm #19977karenParticipant
Previously (on this website and John Hopkins) I had found this and posted:
Was on the Johns Hopkins discussion board and found an interesting item I wanted to share because it has been on my mind and I don’t seem to find much information about it. I do worry for our children as this disease is usually detected so late in its development.
Vickey wrote this…..’My Mom died February 5, 2005 of BDC. My Doctor recently sent me for a gallbladder/liver sonogrm because he said that some studies showed a genetic link to the disease. Fortunately, everything was fine in my case. He said we would run the test again in about 3 years. ‘
To which I replied….’Thank you for that post. I found it very informative. My husband was diagnosed with the dreadful BDC in October and we have been on that horrible roller coaster ride ever since. Through this period of time I had found out that his maternal grandfather had died of ‘inoperable liver cancer’ over in England. I asked my husband’s doctor if there was a genetic connection and was told ‘no’. I am glad you posted this so I can tell my daughter (and if or when she has children) what test to have done periodically to be on the defense because I thought the similarities between my husband and his grandfather were significant. ‘
I do believe there is a genetic connection. Would welcome some fedback.
Sorry to the other members as I know this is redundant.
KarenMay 6, 2008 at 6:47 pm #19976celoiParticipant
I went to the dr yesterday for an ear infection and I spoke of my father, David Cook, who passed Dec 30, 07. I asked the dr if it was hereditary and he stated it is a rare disease and stated its not hereditary. Thats all he said, no other explanation…..
celoi (Charlene Eloi) Daughter of David CookMay 6, 2008 at 5:45 am #1224BazelParticipant
Like many people touched by CC I continue to lurk on this board as this was such a point of light as we followed by dad’s journey through this disease (he passed in Nov 07). I have been struck lately by the number of “young” people who are fighting CC which leads me to wonder if there have been any studies/findings to indicate this may be hereditary?
To date my understanding has fallen in the category of rare disease and not likely hereditary but would like to gain better insight none the less. Does anyone know of any research that points to genetic realtionships?
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