frogspawn
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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…
Gerry
having reviewed my original opening comments to this thread i kind of think it was pretty insensitive in many ways… having said that quite a number of people at the sharp end have added their opinions about the efficacy of surgery. If nothing else i hope that the tests you are having mean that the doctors are able to give you some choices. Having read some of the posts that is a luxury that not everybody has had…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!
Apparently the endoscopy is a gastroscopy and it is to look at his pancreas… he is being treated with warfarin for the clots.
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…
hi Amy
i have got a thread on screening and genetics but i find the discussion of same is not very popular on this website!!
If it is genetic screening you are talking about then there are tests for a variety of types of cancer, if your cholangio casrcinoms is caused by a defect in one or other of your “mismatch repair genes” then there is a test for this which some members of my family have undertaken.
If it is something that you are interested in there is plenty of info on the web. Most genetic testing programmes are (in the uk at least) preceeded by some compulsory counselling… primarily to advise you of the effects that the test and test result can have on you….psychologically that is…
Frogspawn
They have done ultrasounds and they have helped but i gather they are not very clesr..
thanks for your thoughts.
My bro has now got “blood clots” around one of his kidneys. They are still convinced that these are what they are. Problem is his pacemaker stops him from having an mri scan which i gether is the best non invasive diagnostic tool.
Next he is having an endoscopy.
Robyn… I think Torre Muir syndrome is probably an old term… i think that my families problem is probably classified now as Lynch Type II syndrome… I think that a number of these syndromes actually involve mutations in a number of the same “mismatch repair” genes that mean that mutated cells aren’t repaired by the body as they should be. My surviving brother is a carrier of the gene as is my sister. Apparently the genetic condition is autosomal dominant which means that each child of a carrier has a fifty fifty chance of inheriting… I pray for a negative test for your mum but the strength to bear a positive one.
As suzanne and walk have mentioned maybe there could be an environmental component that can trigger the gene fault…’
Walk, if i was your sibling, with a family history like that, i’d be down to the doctors for a colonoscopy (i’m not a doctor by the way!)
Brother has had a sub total colectomy and is now recovering at home. They don’t think it has spread intothe lymphatic system. The surgeons don’t want him to haave any chemo but the final decision will be made with the oncologist.
Thanks again for your positive thoughts and prayers.
One thing is for sure you will suffer from those who cant handle “the bic C” just as much as you will benefit from love and kindness from the most unexpected quarters.
Our brother (mine and speckledhens, that is) has got a date with his consultant on monday about his op… your prayers and positive thoughts are always appreciated! He had his scan this week and no spread outside of the colon which is good… so hopefully no cholangio carcinoma for him!
Not sure if they are gonna operate before or after Christmas…but find out Monday hopefully.
Frogspawn
