April 22, 2014 at 3:55 am #81613
Okansas….It is likely that MD Anderson did not request the tissue, but rather took the info from the pathology report. Unless the patient request the tissue to be transferred to an institution or other designated place, it stays in the hospital where it is either stored or is destroyed. Tissue research is ongoing and it will take years before data will be compiled in regards to genetic predisposition. So, please don’t worry about the tissue donation.
The upcoming patient registry is of importance. The compiled information will be de-identified and is accessible to all patients and researchers. Again, some time in the future (I suspect 5 or more years) the data collected in the International Patient Registry will compiled, analyzed and released to the public.
MarionApril 21, 2014 at 10:33 pm #81612
Is the place of tissue retrieval the medical facility where the biopsy was performed?
My husband’s biopsy was at one hospital. Then he had a 2nd opinion at MD Anderson. I think the biopsy material may have gone to MD Anderson, but I’m not sure.
Is biopsy material normally saved? If so, for how long?April 21, 2014 at 5:48 pm #81611mattreidyParticipant
I’ve had (I like to say had to stay positive) Perihilar CC.
My father has lost several siblings to colon cancer at various ages. Some young, some old. My father just turned 79 on Easter Sunday (4/20/14) and has been getting non-cancerous colon polyps removed just about annually.
I had my first colonoscopy at 40 and was clean. CC diagnosis at 47 in December, successful resection in January, and because I was “freaking out” about all the different feelings from my ribs on down after surgery I had a colonoscopy in March. They did find one very small non-cancerous polyp near my rectum and removed it.
I, for one, think genetics definitely play a part.April 21, 2014 at 6:55 am #81610
okansas…please know that there are no stupid questions on this site.
In re: to the International Patient Registry: It is under IRB review and should be ready to launch by May 1. Please be so kind and fill out as best you can. BTW: Family history is a big part of the questionnaire.
In regards to biopsy tissue: Does it confirm Cholangiocarcinoma and has it been stored at the place of tissue retrieval?
MarionApril 21, 2014 at 2:43 am #81609
Thank you. That’s helpful.
I’ve been wondering how this relates to the Patient Registry being organized by the CC Foundation and the Mayo Clinic:
Should we be contributing biopsy material? Hope that isn’t a stupid question, but I know that if there was some way in which my husband’s cc ordeal could contribute in some way to the greater good, he’d want me to follow through and see that it is done.
My husband died in October. His father died this March. My father-in-law’s family did have some history of liver cancer. I’m wondering if I the Patient Registry, or some registry, would want genetic material from both of them, since my father in law also had a lung biopsy for lung cancer.
MargaretApril 19, 2014 at 6:01 am #81608
Genetic testing is particularly important for the carriers of a disease for which the gene has been identified. This is not yet the case for Cholangiocarcinoma. This link explains a bit more:
Testing can only provide you with answers that scientists know at this time about the connection of genes and diseases. Depending on the scale of testing, it can provide some clues to the genetic mutations each of us harbor. Some of these mutations (also called molecular targets) can respond to drugs that target one or more particular molecules. This and more is what will lead to “personalized” medicine.
MarionApril 18, 2014 at 12:27 pm #81607
Crissie and others wondering about the hereditary aspect, isn’t genetic testing an option to get some insight on the chances of it showing up in the next generation?
Sorry I don’t understand much about that …April 18, 2014 at 4:40 am #81606
I too wonder about heredity.
My husband died in October of cc after diagnosis two months earlier. When he learned his diagnosis, his first words were “I guess I inherited my mother’s genes.”
True, his mom had an unidentified cancer, and had a history of colitis. Her mother died of cancer. And her grandmother died of cancer. None of those were cc or liver. But on his father’s side there were a couple incidents of liver cancer (a great grandfather, and a cousin).
That said, my husband comes from a farm family, his early years were spent in a town with a steel foundry, he never ate raw fish or hardly any fish at all, but he did have an x-ray as a small child and I always wonder if it wasn’t with Thorotrast, which some say is linked to cc. He was a photographer and worked with photo-chemicals for a couple decades, but he was always extremely careful with chemicals and other known carcinogens. Never drank or smoked. Ate a pretty healthy diet, other than Coca-Cola and the occasional fast-food burger.
That said, I recently read a study that did a meta-analysis on all the suspected risk factors for cc, and other than the liver fluke in Asia, the conclusion was that in the western world the cause is simply not known.
This makes sense to me when I think of the recent death of a 12-year-old boy from cc.
My personal feeling is that it’s a total crap shoot to try and figure out why — at this point it seems a mystery, but hopefully with research we will learn more.
MargaretApril 16, 2014 at 9:33 pm #81605kvollandParticipant
My husband’s family is riddled with cancer….once of which is colon. I will always wonder if that is a link somehow. I look at where they lived for years…..downstream of an apple orchard which is now a golf course. I always wonder about the pesticides and what not that flowed in that creek. Mark is on his second cancer in his life time, his mother has had multiple primary cancers (lung, colon, uterine) and his grandfather died from prostate (aggressive form) with mets to the brain. They did say that his tumor was in the area of the original radiation from his Hodgkin’s so that may play into it. So many factors, it would be nice if they could figure it out.
Then we look at my son and his thyroid cancer….there is NOT one risk factor for him to have it but yet he did. Now he had a greater risk of further cancer and his children now have a greater risk.
KrisVApril 16, 2014 at 9:21 pm #81604lisasParticipant
Other than my dad having a very early stage colon cancer that required surgery and no chemo or radiation (he was in his early 70’s and will turn 90 this year), I have no family history of any type of cancer, although I had stage zero melanoma nearly 7 years ago. Drs feel it is completely unrelated and it was caught early, so I had it cut off and that was it.
The women in my family have all lived well into their 90’s. My 89 year old aunt still mows her yard and plays a little golf and you might think my 84 year old mom was in her 60’s by the way she does stuff.
So, my diagnosis came as quite a surprise. Never smoked (never lived with smokers either), light social drinker (wine with dinner), work in an office, so not really exposed to chemicals or other bad stuff (lawyer), no other health issues, healthy eater, lots of exercise. In fact, I’d just done a 100k bike ride outside Nashville on the hilly Natchez trace parkway the week before I was diagnosed. Needless to say, it came as a shock. I’d had a routine colonoscopy 6 months earlier, with nothing noted.
I hate there is no diagnostic testing now. If I knew then what I know now, I would ask at my annual physical for them to look very carefully at my liver numbers. I’d probably also ask for an endoscopy with that colonoscopy.April 16, 2014 at 8:26 pm #81603dukenukemMember
My mother had thyroid cancer. My father had malignant melanoma, metastatic to lungs, bone, liver, and kidneys. They both smoked and drank. I don’t smoke and drink little, use SPF 35 whenever I go outside.
BTW, I worked at nuclear power plants for over 40 years. My dose over the years was less than 8 REM whole body, about what you’d get in 25 coast to coast airplane rides. I don’t believe that played any part in this.
Frankly, I’m more worried about my daughter getting breast cancer simply because it has a high incidence rate. I can’t wait for a comprehensive diagnostic test for cancer. If my kids insurance won’t pay for it, I will, just to set my mind at ease. I’m an engineer – I hate random events.
I’m not worried about this. I’m pissed because I won’t live to a ripe old age with my wife, doing all the things we dreamed of. We all know what the final score will be. The only thing is how many innings the game will last. “It’s not whether you win or lose, it’s how you play the game.” is something we’ve all heard, and as parents, what we’ve told our kids. After a while, you realize it’s true for us.April 16, 2014 at 12:54 pm #81602crissieParticipant
My family has no history of cancer. That is why it was such a surprise. Now my dad smokes…that may play into it somewhat. He did work at a nuclear power plant…as a guard. From what I read this is just a mutation that occurrs–not inherited. I have read that they think that maybe it shows in families because they are exposed to the same thing that caused the cell mutation but a lot of times it is just a spontaneous occurrence in one person.
How do others deal with maybe getting this cancer? Are you extremely worried or because the cancer is so rare not really concerned?April 16, 2014 at 4:37 am #81601
Crissie….. I suspect that within the next few years we will continue to witness increased research in regards to genetic predispositions of this cancer. Based on the thousands of posting on this site, less than a handful of people spoke of a direct family member with this Cholangiocarcinoma. What we do see though is a history of different kind of cancers within families.
Like you, many of us are worried and concerned, but for the present there are no early detection methods other than what has been mentioned by the nurse practitioner.
The below link might be of interest to you:
MarionApril 16, 2014 at 3:36 am #81600
middlesister….absolutely, there is a connection. See below link:
MarionApril 16, 2014 at 2:56 am #81599middlesister1Moderator
Hi. I guess a follow on question if people are responding to crissie…anyone have Lynch Syndrome in the family? My uncle had it and now mom has cc. They say it is tied to colon cancer, but since Lynch and cc are rare, just wondering if there could be a tie. Thanks!
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