April 9, 2015 at 11:01 pm #19997dukenukemMember
First, I recommend using the Search tool and input “hereditary”. This question has come up before.
I did a search of the ICPR database and found:
Of the 177 entries there were the following relationships between cholangiocarcinoma patients:
2 biological child.
Remember this is a voluntary database so it may not be representative of all the family CCA patients, but it’s the best we have now.
This was done back in September, so there may be new data. If there is, I will update this post.
DukeApril 9, 2015 at 8:32 pm #19996momsrecoveryParticipant
I know this is an older discussion, but I am wondering the same about CC being hereditary. My mother, 65, was just diagnosed with CC. We have a lot of cancer in my mothers side of the family. My mothers mom is a breast cancer survivor and is 93. My mothers father had multiple myelomia for many years. My brother had melanoma a few years back on his foot. He’s now 38. My mother’s sister had endometrial cancer at 61. Several of my moms first cousins had breast cancer. My mom’s aunts also had cancer. And there are second cousins also with cancer. Many of these cancers have been diagnosed in the past 5 years. I know so many other families who also have various forms of cancer. It’s just so scary.
I’m quite interested in finding out what kinds of testing/screening can be done as well as the lifestyle changes we can make to reduce the risks.October 26, 2011 at 3:25 am #19995sally2011Member
I’m so sorry to hear about Lisa. My thoughts are with her family
I had never heard of Cholangiocarcinoma until just recently
SallyOctober 25, 2011 at 11:46 pm #19994mnParticipant
My mother’s doctors say that CC is not hereditary…I don’t believe them quite yet. My mom’s aunt died 3 Thanksgivings ago from CC that affected the bile duct. My mother is currently battling CC that started in her gallbladder and spread to the liver. Therefore, I think there is more of a link to hereditary than they think…but not enough information.October 25, 2011 at 9:38 pm #19993lainyParticipant
Sally, a lot of these are very old threads, sadly lots of things get very old on our site very quickly. Lisa passed away September 15th. We loved her dearly as she had been with us about 5 years and one of our strong darlings with lots of hope and courage.
The problem, well one of them, with CC is that because it is such a rare cancer the only thing we know for sure is we know not much. I don’t believe they have ever identified yet if it is hereditary. There is research being done in some Asian Countries where they know about a parasite called liver flukes. Some of our male patients who were Viet or Korean Vets have battled CC. The highest ratio of patients seem to be in that part of the world. But, that does not account for so many newer younger patients in the USA joining our Board. Honestly we are about as lost with it as you are and any new information is always a blessing to us. My husband who passed last December after a 5 year battle with CC had 9 first cousins who all passed from different forms of Cancer all before they were 60! I can’t remember the post but one of our members asked a doctor how they got CC and he said, “toss of the dice”. Not what we want to hear but we just don’t know.October 25, 2011 at 9:12 pm #19992sally2011Member
I also wonder if there is a Hereditary link.
Lisa I was interested in your comment
“My mother took DES when she was pregnant with me. I wonder sometimes if that has anything to do with my cancer.”
My close family member took medication to stop miscarriages which is believed to be DES but cannot confirm it.
I have a family member who passed away in March from cholangiocarcinoma.
and other family members have passed away due to other cancers.
I have often thought are these cancers connected in any way
SallyNovember 12, 2009 at 12:32 am #19991
In my family the gene is not specific to cc… the defect causes multiple primary cancers in the same type of tissue all over the body. It happens that for at least three members of my family that it has manifested itself as cholanghiocarcinoma. There is lots (relatively, i should say) of literature covering this. It might be true for one person to say that cc isnt hereditary in their particular family. The genetic mutation in my family is well recognised and they are under the care of a geneticist. We all await our 40’s with trepidation but also a little humour… with a nudge and a wink that something is in the post…May 16, 2009 at 9:19 pm #19990luluuParticipant
There are so many examples of multiple family members with this cancer that it must be genetic.
I don’t think they will ever be able to prove that having a cancer gene–or predisposition, will always develop into cancer. I firmly believe there are other factors that come into play and I think at risk people can live and never develop cancer. Overall health, weight, diet, drinking, smoking and other environmental exposure can lead to the development of cancer or not–in my opinion.
I feel this way because of my experience with my husband and his family and 14 months of reading and trying to figure out this cancer stuff.
LuLuMay 16, 2009 at 4:27 pm #19989marionsModerator
Tracer….nice to hear from you, again. Your benfit is a wonderful gift to the CC community. What a difference a person can make.
Hugs coming your way,
MarionMay 16, 2009 at 10:14 am #19988tracerMember
I am quite sure that there is no literature stating that cc is hereditary, in fact, they had told my family and I that it was not. My father, Jim was diagnosed @ 38 y.o. 22 years ago and then 4 years ago my Aunt Cheryl, dad’s sister was diagnosed. How devastating to all of us. Then, starting @ the age of 30 yo, the docotors recommened yearly prophylactic blood work and MRCP’s for myself, my siblings and Cheryl’s sibling and her children. Even if there was a gene that could be pinpointed, I wouldn’t want to know if I carry that gene, because it is not proven that even if you have the gene, that you will develope the cancer. I send out my prayers to you all and hope the benefit I am running will help to save lives and give you all some answers!!!!! Love and Blessings of Strength, TracerMay 15, 2009 at 7:32 pm #19987
Absolutely right LuLuu although the hereditary aspects of a variety of cancers are never going to be a popular discussion topic iin a jurisdiction where people rely on insurance companies to pay for a majority of health care problems… we shouldn’t ignore the debate and pretend that there is no literature linking cc with genetic defects. For those who do have a genetic predisposition (where they have, for instance, a defect in their mismatch repair genes) screening is an important way of prolonging our stay on this earth through early diagnosis. We must encourage discussion on this topic to make sure that where screening is avialable that they take advantage of it!April 13, 2009 at 1:28 am #19986luluuParticipant
This is an important discussion and appreciate any information regarding heredity.
I don’t think it’s a coincidence that my husband passed of cc (extraheptic), his mom passed of pancreatic cancer and her mother passed of pancreatic.
I am not taking a chance, therefore I have discussed with my children’s doctor what he will do for them starting at an earlier age…for instance, scans. I have also made an appointment for genetic counseling.
I have done major research with regard to nutrition—important vitamins and herbs to boost immunity, antioxidents, etc.
LuLuApril 9, 2009 at 8:25 pm #19985
My family has had several cases of cholangiocarcinoma which i have documented elsewhere on this site. This cancer is not the only cancer that the family has suffered from. The “cause” is a defect in some of the mismatch repair genes which is inheritable. There is a fairly reliable test for it which some of my family have taken advantage of…May 9, 2008 at 5:58 am #19984jmoneypennyMember
Yes, it’s always wise to be vigilant about possible genetic links – I know when my daughter got the new, required hepatitis shot I was thankful the authorities were aware that hepatitis is on the rise in a very alarming way – but many parents are boycotting the shots because they think they’re unnecessary. I read somewhere that in Asia there are about 1 out of 5 people who have some kind of hepatitis and because of immigration and people traveling there more, it’s really becoming a problem here, too.
My mother had autoimmune hepatitis so I think in her case the autoimmune problems may have more of a genetic link. In any case, I cherish my liver every day! Sounds funny, but you can’t take these things for granted.
JoyceMay 9, 2008 at 5:04 am #19983BazelParticipant
Thank you all. While I didn’t think there was a hereditary connection I thought it better to seek the sage advise of the folks here. None the less I will be sure my PCP knows of the family history going forward.
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