Is Cholangiocarcinoma Hereditary
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Dear Cazgirl,
My husband’s tumour is in the bile duct and proceeded downwards wrapping around an artery and left renal vein. During the laparotomy the surgeon marked the tumours just in case. Radiation can be used.
It is stage III.
Currently he is on chemo.
The cisplatin and gemcitabine are being used.
His platelets seem to tank about 7-10 days after his second round in a cycle.
The platelets were Low. …22
We are seeing the oncologist today.
We remain hopeful and strong that God will show mercy.
There seems to be three areas the cc can go to.
I think we are intra.
Praying for you.
Hugs,
ReacherDear Cazgirl,
My husband’s tumour is in the bile duct and proceeded downwards wrapping around an artery and left renal vein. During the laparotomy tge surgeon marked the tumours if radiation may be used.
It us stage III.
Currently he is on chemo.
The cisplatin and gemcitabine are being used.
His platelets seem to tank about 7-10 days after us second round in a cycle.
He was at 22. Low.
We are seeing the oncologist today.
We remain hopeful and strong that God will show mercy.
There seems to be three areas the cc can go to.
I think we are intra.
Praying for you.
Hugs,
ReacherDear Reacher,
My husband was sent to the ER by his PCP, with jaundice, stomach & back pain and a cough. The ER staff drew labs, did a CT & MRI leading to an initial diagnosis of Non-Hodgkins Lymphoma, with orders written for a biopsy of his liver & several lymphnodes, to be done the following day.
After the biopsies, he was officially diagnosed with Cholangiocarcinoma with full liver & lymphnode involvement.I am praying, Reacher, that your husband’s diagnosis was early enough that he may be receiving treatment and eligible for a liver resection. My husband was already Stage 4, upon diagnosis.
Praying for you and your family!
Cazgirl
Dear Cazgirl,
I too, am so sorry for the sudden passing of your husband. I can’t even imagine going through that so fast. I also wonder about passing this horrid disease on to my children….but I try not to let it consume my thoughts. Knowledge is power….it is good to know as much as we possibly can and to be aware for the future…..but to continue to live everyday to the fullest! Blessings!
Melinda B.Dear Cazgirl,
I am so sorry to hear of the sudden and very shocking passing of your husband.
How did they determine he had cc?
When I mention my husband’s form of cancer to others they stare in bewilderment because they have never heard of it before!
Cholangeocarcinoma seems to be so rare.
My husband was diagnosed June 5th.
Please know I feel for you deeply and will pray for you.Cazgirl…….so glad you came aboard. Please continue to stay with us – we are in this together.
Hugs,
MarionThanks to all who have welcomed me into the fold and for your support and advise regarding my concerns that this may be inherited. I did enter my husband’s case on the CCF International Patient Registry, and have the records and diagnostic CD to share, if his particular case is accepted.
I’m sure I join all of you with the mantra to “advocate to eradicate”.
My heartfelt thanks!
Cazgirl
Hi Cazgirl,
Welcome to the site. I am really sorry to hear about the passing of your husband, please accept my condolences. I am glad that you have joined in with us here as I know that you will get a lot of support from everyone here and you are certainly around people who know how you feel and what you have gone through so please keep coming back.
I can so understand your fears about CC being hereditary but I just want to chime in and say that I so agree with what Jason and Marion have said to you about this in that nothing has been proven that it is hereditary. I have read a ton of stuff about CC over the years and have read nothing that proves that it is. My dad died of CC back in 2009 and I do not worry about this affecting me in years to come. I know it can be hard not to worry about stuff like this sometimes but my advice to you would be to not worry about it.
As I said to you, please keep coming back here, we are here for you and we care.
My best wishes to you,
Gavin
cazgirl…..my heart goes out to you; sixteen days from diagnoses to passing is extremely difficult to comprehend. Please accept my most heartfelt condolences.
Like you, many of us wonder about genetic predisposition to this cancer, but as of today, researchers has not been able to identify any particular gene leading to this disease. Jason’s explanation of the molecular behavior of genes and why some cells grow out of control is something researchers are trying to identify for all cancers including, Cholangiocarcinoma. Having said that, the medical community is paying attention to possible genetic predisposition and we should expect data on this area within the next few years.
By participating in the CCF International Patient Registry, you are able to contribute valuable information:
http://cholangiocarcinoma.org/professionals/research/patient-registry/I believe that we will witness enormous changes heading our way regarding the diagnoses of Cholangiocarcinoma and the ensuing treatment options. This is in par with the expectations that within the next 20 years the entire culture of cancer treatments will have changed.
in the meantime, I hold back from worrying too much about my children contracting the disease their father battled in 2007-2008.
Hugs,
MarionDear Cazgirl,
Welcome to the group, but sorry you needed to find us. You have my deepest sympathy on the loss of your husband to this disease. My husband passed quickly much the same as you described, so I truly understand what you are feeling and going through. I found this site a few days after he passed away and got so much help and support. No one who has not dealt with this disease can possibly understand what it is like to deal with this disease.
I totally understand your concerns about heredity as I too have two sons. Unfortunately I don’t have any answers for you. There is research being done, but at this point I don’t think there is any way to test for it.
Hoping others will be on soon to welcome you and have more information for you.
Hugs,
DarlaHi Cazgirl71,
I am not a medical professional, but I have done some research and talked to researchers in the field. Based on that, my understanding is that cholangiocarcinoma is unlikely to have a strong inherited component. Very very few patients have other family members that have had cholangiocarcinoma. It is not impossible, but at this point, CC doesn’t show the characteristics of a strongly inherited disease like some other cancers.
Most (all?) cancer cells have messed up genes that cause them to reproduce uncontrollably. A person could inherit the messed up (or nearly messed up) genes from their parents, or they could have normal genes that mutate into cancer genes during their lifetime. This mutation process could be just a random event or could be encouraged by certain risk factors (e.g. inflammation of the liver from parasites, etc.)
Again, my understanding is that CC is thought to likely be from genetic mutations the person acquires during their lifetime and not something that they inherited from their parents. At this point, it seems like there could be an inherited component, but because so few patients have family members with the disease, the inherited component is unlikely to be that large.
I hope that helps. Keep in mind, this is just the crude understanding of a caregiver that has done some looking into the topic, but is in no way an expert.
Best,
Jason
My otherwise healthy 63 year old husband was diagnosed with CC on March 10th & passed away on March 26th of this year. He presented to the ER with jaundice, stomach & back pain and a nagging cough. He had a series of CT’s, MRI’s, biopsies and an ERCP with an end result that he was Stage 4 no time to fight, thus we had 16 days from beginning to end!
I was so happy to find this site and to know that great efforts are being made through research and study groups. I participated in the webinar, and found my husband did not have any of the risk factors & had not travelled outside of the US. The webinar spoke of a gene that is being focused on. As we have two adult sons, my new concern is whether they may have this gene and I am very anxious to have them tested.
I have offered, for research purposes, all of my husband’s medical records, pathologies and CD of his scans. Has anyone been tested or their family members for this gene?
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