• From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 682

Topic: Family members with CC

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-

Survivor of breast cancer (1994), thyroid cancer (1999), cholangiocarcinoma (2009).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.
  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,219

Re: Family members with CC

Oh wow, Randi...2 of you also? And what do you mean you are 53? I thought you were in your 40's!!!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 682

Re: Family members with 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 smile

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.

Survivor of breast cancer (1994), thyroid cancer (1999), cholangiocarcinoma (2009).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.
  • Lainy
  • Lainy
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,219

Re: Family members with CC

Randi, 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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: Family members with CC

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,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: New Orleans
  • Registered: Sat, 15 Sep 2012
  • Posts: 14

Re: Family members with CC

As 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.

  • From: Oxnard, Ca
  • Registered: Mon, 03 Dec 2012
  • Posts: 20

Re: Family members with CC

Hi 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,
Annie

Annie
My momma may she rest in peace after her short but courageous battle with CC.  My brother my hero, may he fight CC with all of his strength.
  • Registered: Thu, 09 Sep 2010
  • Posts: 533

Re: Family members with CC

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-Cathy