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PSC and bile duct cancer (cholangiocarcinoma)


#1

Hi friends, my sweet 33 year old brother was just diagnosed with PSC - symptoms came on hard and fast. Because of the severity of his symptoms (extreme weight loss, skyrocketing bilirubin levels etc.) they were concerned about cancer, which was just confirmed through recent biopsy via ERCP. He has a PET scan Monday (in two days) which will determine the extent of the cancer. I am reaching out to see if anyone has any experience with this. Based on my initial research, it looks like cancer/PSC diagnosis is an extremely grim one but I don’t want to give up hope. Colin is my baby brother, my love and the father of 1 year old Lark and husband to his beloved, Ali. I need to be there for all of them but I am so very scared. He didn’t even have PSC symptoms til November and it’s still Feb. We are all spinning. Any info would be so helpful.


#2

Welcome Jocelyneve to this PSC community. I am so sorry to hear of your dear brothers diagnosis of bile duct cancer. I am not personally acquainted with the ins and outs of bile duct cancer, although I do know that it can be quite aggressive. The best advice I will give you at this point is to make sure your brother is seeing a Transplant Hepatologist NOT his local GI doctor. Hepatologist are specially trained in the diagnosis and treatment of liver diseases. Please get him to one of these as soon as possible. He will also probably refer him to an Oncologist who is associated with the transplant team and he or she will be best able to coordinate with the hepatologist and his team of whether he would qualify for a transplant or not, which most likely depends on the advancement of the cancer.

I’m sure others in our group will chime in with their thoughts, but rest assured we are here for you and are willing to help in any way we can. Be assured of our thoughts and prayers for he and your family at this time.

Mark
PSC 2011 / Liver Transplant 2015


#3

Thank you so much for the input, Mark. Fortunately we have great care at OHSU (Portland OR) and feel confident in our hepatologist. If we are lucky enough to be eligible for a transplant then we will pursue care at OHSU. I am really grateful for the solidarity and kind words. Blessings to you.


#4

*Pursue care at Mayo, not OHSU.


#5

So glad to hear you are under the care of a hepatologist. That’s a point we really encourage all our patients to pursue. Let us know how we may help in the future.

Mark


#6

I am so sorry to hear of your brothers CCA diagnosis. It sounds like you may already be aware that Mayo developed a protocol for being eligible for transplant depending on the size and location of the tumor. Hopefully, your brother will fit their criteria, receive treatment and get listed soon. I also believe MD Anderson in Houston in doing great things with clinical trials for CCA. You may want to check their website for more info. I belong to a private facebook group for PSC Partners Seeking a Cure and there are people in that group that have gone through the Mayo protocol and have received their transplant. I will be praying for you, your brother and his family.


#7

Thanks so much for the info, Crewmom. We are aware of Mayo’s protocol and it’s helpful to hear what’s happening at MD Anderson. Apparently Sloan Kettering is also doing some important research. I am now following the PSC group on FB thanks to you. Blessings to you.


#8

Good morning, Jocelyneve.

It’s beautiful to see you advocating for your brother’s well being. He’s lucky to have you.

I’m sorry your family is having to deal with this trial. The hope and faith in a fruitful outcome makes all the difference. Without faith nothing is possible they say… Look at the research on positive thinking… You’re on the right track with not giving up hope - Anything is possible!

I don’t have much to add in as far as a cancer/PSC diagnosis. (My fiance was transplanted 2 years ago at age 32 after fighting with PSC for nearly half his life.) I wanted to simply reach out and say someone was rooting for you and your family and I will be sending my best wishes out to you all.

Take care.


#9

Thank you so much, Gloria. We are holding onto hope even amidst a very grim reality. And you are right…what else do we have? I am so grateful to be his sister - he’s a very amazing person. Wishing you and your husband all the best and many blessings for a long time to come.


#10

any update on your brother jocelyneve?