Genetics – The elephant in the room???
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I also am interested in the possiblity of a genetic link. My husband passed away 9-2-08 of this terrible disease after only 7 weeks. Our sons questioned the possiblity & the doctors for the most part seem to feel there is no genetic connection. However none of their answer were a firm NO. We feel there could be a link & would be interested in anything anyone can come up with on this subject.
Thanks,
DarlaMy Dad used to take those meal in a drink things… i tried one. They taste like they have got lots of iron in them…yuck!
Would be good if we could get a doctor to do a post on the genetics side of things. I am trying to get somone in the UK to do something…i’ll let you know how i get on…
(Your mention of the nuclear testing is something i’ve not heard of before…but i noticed someone else mentioned it on this site as well) Thanks for the info as will definitely investigate! Thanks.
Hi Frogspawn, Thanks for asking. I’m holding my own, staying busy with home projects, and popping my morphine. About five more weeks or sooner I’ll decide my next course of action. I have been putting weight back on since sticking to the 3 a day Ensure plus meals. At least my rings aren’t sliding off my fingers anymore. Now if I can get my pants to do the same. Ha! Also my attitude has been pretty good since practicing EFT.
You know genetics is interesting, like you said when it’s in laymans terms. I associate it mostly with Down Syndrome. My friend had a baby with it. Just one, in this case just part of one extra #21 chromosone causes this syndrome. It’s possible I have a missing link, as my Dad was involved in the testing of the nuclear bomb (hot Area) and got contaminated prior to my conception. Shortly after he had cancer in his upper arm and radiation sickness from what iv’e been told. His arm, well they did not leave much meat. The whole bicept area had to be cleared. Then later on down the road he developed on both leg calves severe itchy raw type rash that never went away . Just kept treating it with something. I pushed him to apply for disability and they interviewd him and said no relation. then 8 years later it became public about location ,date , and time of testing and entitlement should be applied for. But he was so stubborn and having already gone through the process, he ignored it and just pressed on with life. Well, I better put on the brakes, rolling along here.
God Bless,
Jeff G.Thanks Jeff.
As you can tell i’m no expert. Genetics is interesting isn’t it? Nature, nurture and everything in between is involved… What is the mutation, what causes the mutation, how can we repair the mutatation…?
Mismatch repair genes are an interesting topic… With some of the websites the language is hard to understand and not so accessible for simpletons like myself…but some of them have some very good reviews that are vaguely comprehensible with a bit of time and effort.
With Torre Muir syndrome it is believed there is significant under reporting because not a lot of physicians know anything about it so they never identify it when problems occur…
Personally i also think that my own familys experience of hepato billiary problems suggests that the 2-7% represents under reporting… if we can change that then it could get more people interested in examining causes and possible cures for cc.
Most importantlly, if nothing else, if more people identify a genetic issue it can help them to help and their relatives get better screening and aid early detection.
You know (more than most i guess) that with current medical knowledge and technology that by the time the itching, yellow eyes, loss of appetite and weight loss comes, things have very often progressed too far to do anything too meaningful to help the majority (present company excepted!!)…and what we are left with is chemo, radiotherapy and some other relatively new techniques…none of which involve a cure.
My hope is that, at least for those with a genetic “cause” they give themselves time, through screening, to get in there early an do something about it!!
Thanks for your interest in the topic. How are you doing?
Frogspawn
Frogspawn… I have read along the way of all my researching, some articles about genetic involvement with cancer. The discussion or debate is out there but I haven’t seen that much information flowing. I personally feel it certainly plays a role in some cancers, any cancers if the predisposition is there. From conception to enviornmental and anytime in between. We could have a missing gene to begin wth, Gene interaction and loss due to other diseases, or enviornmental causation. I’m far from being a science guru, I think we all have the genes suseptable for cancerous growth, and many variables surround us that are triggers for different types. Well, that’s about all my thoughts in this scientific realm. I certainly believe genetic and enviornmental interaction should be investigated. You have sparked my interest in this area again. Thanks for the link ,I’ll be checking it out.
Cheerio,
Jeff G.From cancer.net
Hepatobilliary cancers comes third on the list for commonality…
What are the estimated cancer risks associated with Muir-Torre syndrome?
General cancer risks for people with Muir-Torre syndrome
Colorectal cancer 80%
Stomach cancer 11% to 19%
Hepatobiliary tract 2% to 7%
Urinary tract 4% to 5%
Small bowel (intestines) 1% to 4%
Brain or central nervous system 1% to 3%
Skin cancer increased riskCancer risks for women with Muir-Torre syndrome
Endometrial cancer 20% to 60%
Ovarian cancer 9% to 12%Look at the literature relating to mismatch repair genes these are implicated in cc but cc doesnt get much airtime because these gene defects usually manifest themselves through causing other types of cancer (mainly colon).
Apparently there are known to be 5 of these mismatch repair genes which are capable of mutating.
Of my generation and my fathers generation the spread is as follows
sister Hysterectomy
brother 1 49 died cc
brother 2 okFather died cc 69
Uncle died cc mid to late 50’s
Uncle 2 died pancreatic cancer mid to late 50’sI only mention this to show that cholangiocarcinoma isn’t always rare in familial cancers and we can’t be the only ones!! This looks like a pretty high incidence of cc to me. Although there are other instances of colon cancer (and some of these people had colon cancer as well) these instances of Cholangiocarcinoma are PRIMARY cancers…not secondaries.
http://ctd.mdibl.org/
This website links genes to diseases…and looks quite clever. If you know of a gene that is associated with cc then you can find out exactly how. Also links chemicals to genes and diseases as well.The environment gene interaction thing is very interesting…no specific info on my dad but you never know… his father died of colon cancer so the mutation (whenever it took place) occurred before then..
Sorry to hear about your pop.
Hi Frogspawn,
Interesting that you should bring this up. the gastrointerologist I saw at Emory Crawford Long is interested in the genectics side of things. He was interested that my father had been exposed to asbestos in the 1950’s while he was in the Navy. My father died in 2000 from mesothelioma. Dr. Martinez said it would not be improbable that there was a connection if my Dad’s DNA had been altered by his exposure to asbestos (I was born in 1965).
However, as a child I also played in creeks and streams that were more than likely contaminated with PCB’s. I have not pursued this though.
Is there any history of asbestos exposure in either of your parents?Frogspawn,
From my previous posting you know I favor the probability of a genetic connection. However, the doctors (and I have discussed this with several) all seem to think there is not.
KarenJust thought i’d put up a post to sound our everyones views on the possible genetic determinents of Cholangiocarcinoma.
Does anyone have any knowledge on this?
Are Physicians talking about possible genetic “causes” of cc?
What information do physicians need to know in order to investigate possible genetic causes (family history etc etc)
What are the possible barriers to discussing genetics…how real are they e.g. fears over insurance cover, ethical issues over the use of genetic discoveries etc etc?
Frogspawn
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