Very informative and well presented.
FX - Cholangiocarcinoma is indeed rare... but so is PSC and most of the literature states the likelihood of developing cholangiocarcinoma in patients with PSC is 10-15% or higher. It's a rare form of cancer in the general population, but considerably less rare for us, so it's helpful to be armed with knowledge.
I just want to tenderly and yet firmly say, that my beautiful brother passed away two years ago in April, after living nine years with PSC...one day he woke up, he had been out living large as usual, an Alaskan man, fun and adventuresome, (let me just say he had changed his lifestyle as far as eating and kept his thoughts positive, didn't dwell on the disease, didn't want to think about the rare risk of bile duct cancer ok? visits to make sure everything was ok became further and fewer between, after all, if he didn't have any infection, if the stents that they had put in were working, why bother?) and thought everything was ok.
As I said he woke up thinking he had maybe broken a rib sledding the day before and after that thought seemed not likely, thought he had the flu, and after about two weeks of a nightmarish evolution down this spiraling staircase of nope. not flu, nope not just an infection caused by your bile ducts, , the words tumor and bile duct cancer became words my family learned and learned quick. The learning curve was steep and painful, and yep we were all upset, I cried alone every day, and then when we'd talk to him, we'd all try to keep a positive outlook. They determined that the tumor had grown to a size that precluded him being transplanted anywhere, and told him to consider hospice care.
Then, in a flash of hope, he was told the Mayo Clinic in Rochester MN would try to treat the bile duct cancer and possibly get him a transplant. After less than a year of what I can only describe as torture for him, uprooting his family to go live at the Gift of Life Transplant house, THIRTEEN ERCP'S, in less than a year folks , THIRTEEN, along with chemo and this horrific radioactive bead type radiation, where he had to lay still for several days with little radioactive beads placed into his bile duct~he was told he was now on the transplant list. This hope lasted for about two months after treatment concluded, until one day, he rubbed the top of his head, and a tiny little angry lump on his scalp greeted him. He told no one, hoping it was nothing, but found out alone, from his team of Doctors, that it was the bile duct cancer spread to his head, which did not bode well for his time left, and absolutely took him off the transplant list forever. Quietly he accepted this, told his wife, and they made plans for a wonderful long weekend with all of us, we THOUGHT to celebrate him being on the transplant list.
However, after an amazing weekend all of us, young and old, laughing, playing charades, hanging out, loving on one another, he sat us all down and told us, he was going home to die at 53 years of age. He just wanted to go home to live out the last, what turned out to be, eight weeks of his life. The pictures and movies we took before we knew? I look now and see the anguish in my brother's eyes, he had to tell us at one point, talk about courage, that man wanted all of us to have fun and make memories one last time. Imagine his anguish as he tried to decided, ok, when do I burst this bubble? I remember saying to him as I hugged him, "wow you look the best you've looked in almost a year!" We all sat stunned as he shared the news, and I realized what he had tried to do, protecting us from this news, and giving us this lovely time together.
My parents and siblings stopped everything and we followed him home, all taking turns, helping out his family as they came to grips with this. So~ upsetting?
Yes, but if this story, and I told it once before, leaving out the most painful details here, because I know how hard this is, I lived it with my brother and his family. but if this story causes just ONE of you to take better care, and as I said before yes absolutely live life fully as best you can, he would go out and bike through the mountains he loved so much, and have to take a three hour nap, but he lived large. I know I am rambling but this is what I said last time I was convicted enough to post, I don't want to bring anyone down, but if this story motivates you to live each day to it's fullest, and once every four to six months, get checked out to make sure there is nothing ominous growing in those bile ducts, then it is worth it. I have tears coming down my cheeks, I hate remembering this, as Stephen can attest, KNOWLEDGE IS POWER, had my brother really understood, he would not have gone without being checked and checked properly. Had he been checked and this caught before it reached the size it reached, there would have been more more hope for him. I know there are plenty of people, who caught it early, treated it. What ifs for Mike are not helpful, but you have a chance to do it a little different. There is great hope and especially if it is caught early. Mike died surrounded by his wife, children, parents and his little brother, holding his hand, and not a day goes by where his younger sisters and brothers don't think of him and miss him, his parents don't stop for a moment and catch their breath when we remember that beautiful man and that is he gone.
If this makes even one of you say, Ok, well, I am going to live and be and love, but one day, every four to six months, I'll go get checked, then it is worth it, and if this is upsetting, I am sorry, but knowledge IS power.
Thanks so very much for sharing MIke's story, it must have been so difficult to write this. Mike was a remarkable and beautiful human being. I also lost a wonderful brother at a young age.
And yes, knowledge is power for sure.
Dear Mike's Sister,
What a precious posting of your dear brother's journey and home going. I didn't know him but I do grieve with you in this. May we all count our blessings day by day and realize that every day is a gift of God. As we live our lives to their fullest with this disease, may we at the same time be responsible and knowledgeable about every aspect of our treatment, testing, etc. We cannot leave it up to our doctors to do everything right. We MUST ask questions and we MUST be involved in our care and treatment plans. God bless you dear Mike's Sister as well as your entire family.
Stephen, thank for posting this sobering link. I did not know that there were different types of this cancer.