Family members with CC
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I know I was the first in my family to have CC but I always think it is interesting that on my mom’s side of the family there is several aunt, uncles and first cousin all with different cancers but all in the abdomen area, such as pancreatic, bladder, stomach….??? My dad’s side of the family history is non-exstinant-but he was Jewish!!?? So many pieces to the puzzle, but no clear link!!
Lots of prayers and miracles for our CC family-CathyHi Randi. So sorry you have to be on this sight. My Mom had it and now my brother does. From what a doctor said as USC is that it should be considered a genetic cancer since my Mom had it. Who knows if that is accurate… Sorry wish I could offer more information. Maybe something you can ask a doctor if you have children. I know that’s why my brother went to the particular doctor at USC.
Blessings,
AnnieAs our family is gathered around my Dad while he is passing, I found out that my half sister on my Dad side has ulcerative cholongitis. She says that her doctor told her to watch her diet. The one food group that she says gives her stomach problems is fish or seafood. I googled a cause for sensitivity to seafood and I read that is what happens when your liver is damaged and cannot filter properly. I told her she should talk to her doctor about Cc in the family. She is in her mid 50’s.
I keep wondering how my Dads cc started. My theories are:
– He was mechanic at refineries for many years. Probably handled valves with chemicals. He had a terrible accident when one of valves wasn’t properly closed and he had severe burns all over his body – sulfuric acid. Was in the hospital for many months. Recovered very well. However, his doctor told him he would most likely develop some cancer in 15 years. Sure enough, 14 years later (1996) he was diagnosed with non-hodgkins lymphoma. Cured in 1997.
-Grew up in Honduras during the 30’s and 40’s. parasites were common in kids back then. Liver flukes?
– He had his gallblatter removed in 2010. Five of his relatives, including mother and daughter (the one with UC) have had gallblatter a removed.I am now interested in participating in any clinical trial which is testing relatives bile ducts by means of a ERCP.
Randi…you are bringing up an interesting point; my husband also was of Jewish descent. I believe that Israel has an occurrence rate of 7.3 cases per 100,000, one of the highest in the Western World.
Research is accelerating significantly especially in the area of Genomics; this may provide a significant part of the overall puzzle of how this disease occurs and whether there is a genetic link yet to be discovered.
The issue of CC occurrence in families has been brought up several times on this board. I believe it was discussed way back in 2006 at a time when this disease was in the beginning stages of increased interest within the medical community. What he had found is that the majority of people diagnosed had little or no medical records to refer to hence we could not identify the possible connection of occurrence to parents, grandparents, or others in their families.
It would be beneficial for us and the Cholangiocarcinoma patient community at large to continue this thread, dear Randi.
Please, those of you who know or even suspect that there may be a family link to this disease, we would appreciate your input.
Randi, similar to the Physician/Treatment Center link established by our members this thread has all the potential of becoming equally as useful to all.
Thanks for starting this.
Hugs,
MarionRandi, sorry. I can’t believe you are 57! You must have used a very young pic on your avatar!
Very interesting about the Ashkenazi Jews. Isn’t Chrone’s called the Jewish disease? And that can be a predessor to CC.
hahaha, Lainy! I am actually going to be 57 in 2 weeks! But of course I am very immature so I really act much younger
But seriously, I think that I read somewhere that CC is more prevalent in Ashkenazi Jews, that there is a larger percentage of Ashkenazi Jews that get CC then the percentage then the general population.
I was reading another post where someone said that their mother and brother both had/have CC. Someone said that it is unusual to have 2 members of the same family diagnosed with this rare disease.
My maternal grandfather died of CC in his early 80s and I was diagnosed with it when I was 53.
I am curious if others have also had family members that have had this disease as well.
-Randi-
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