I’ve read in a few places the risk for Bile duct cancer for people with psc can be somewhere up to 30-35%…? How are we supposed to avoid this. I’m shocked. I also read few patients are treated with transplant because they don’t usually catch it fast enough. I am just at a loss with this disease.
PSC is a brutal disease. You can’t really avoid bile duct cancer, besides not smoking or drinking alcohol. That said, bile duct cancer is related to dominant strictures (people with small duct PSC therefor have minimal/almost no risk of bile duct cancer). And yes, it is true, very very few people who get bile duct cancer survive.
So basically our risk is super high and if we get it there’s really nothing we can do to survive…?
Yeah, that is unfortunatly the brutal reality. Keep in mind that the risk isn’t a constant. It depends on how long you have hade the disease, whether your extrahepatic bile ducts are affected, and especially whether you have a (or multiple) dominant stricture(s). Smoking and alcohol consumtion has also been linked to bile duct cancer.
Well I’ve never smoked or drank alcohol before but I’m still extremely stressed out. Is this an accurate %? Do you know anything about transplants for it? I’m just shut down not sure how I’m not going to stress about this.
No, it is not an exact percentage. It is just the percentages that certain studies have shown. You can’t really tell how big the risk is for you to get bile duct cancer, since there are no super specific studies (because PSC is a rare disease).
The reason for why bile duct cancer is so deadly is that is spreads super easily to other parts of the body, because the tissue found in the bile ducts is very similar to other parts of the body.
I can only really tell you one thing, and that is to live life one day at a time. You never know if you will ever get cancer, but it certainly won’t help to lie sleepless. PSC is really scary, but after a while you start accepting it.
This diagnosis is new for you. The many things you are pointing out are the extremes of the disease. Not everyone gets bile duct cancer. This is one of the reasons during regular labs they do the CA 19-9 test, this is why they take brushings during ERCP to send to pathology to check for cancer. If you are under the regular care of a transplant hepatologist he/she will stay on top of this and will make sure you get the proper screenings to hopefully catch anything that may pop up that will cause you further harm and deal with it at that time.
This is not the end of the world for you. I really want you to get back focused on living life. Don’t allow everything you read about what “may” happen to patients with PSC bring despair and hopelessness to your heart. You must hold onto hope, gather those you love dearly around you to be your support and advocate during this process. This is not a disease to live alone. You are so young and have a full life ahead of you. Please try and lay aside all the things you are reading on the internet and find a quiet still place to go and just think and meditate on things that will bring comfort and peace to your heart and mind. This disease isn’t going to throw something at you suddenly. It’s all a progression of time, and at your young age time could possibly move quite slowly and you may not have to deal with these terrible sides of PSC for a very long time. And perhaps during that time a cure will finally be discovered that can stop the disease from progressing.
As far as transplants, they will not just do one on you because you have PSC. You don’t want that transplant until you absolutely need it. Life after transplants has its challenges too but even with that we must live with hope and faith and trust one day at a time. Think about this I ask you today. We are here for you, and very willing to help in any way we can.
Thank you mark for being so patient with me. I always appreciate your input. I know I seem frantic but it is just so hard for me right now. I am in a support group for women with PSC and this girl was telling me how all her tests were negative for cancer and they never caught it and that it can be hard to catch so it really really scares me because the statistics online make me paranoid I have a 1/3 chance at getting it which turns into thinking they won’t catch it based on some people’s experiences as well
@Nlapeyre, I’m new to this diagnosis too, and the one thing I keep finding is common to everyone’s stories is that everyone is different. Right now I’m trying to find the positive stories, like a person in the Facebook group who has never been hospitalized, has had the disease many years, and quite a few others like that, that I’ve found.
Some days are hard, really hard, but like @fcmmark says, gather your family for support and try to live day by day.
I’ve started seeing a therapist to help me digest this diagnosis. Maybe it would help if you found someone to talk with? It’s a big, big thing. I hope you find some peace.
You know you probably have a better chance of getting killed driving to town these days with all the crazy drivers out there than you do of getting bile duct cancer with your PSC. Try to look on the bright side of things Nlapeyre and that will help a lot. Another way, you have a 2/3 chance not to get cancer! Something to think of.
With your experience talking to doctors any idea on how accurate that percent is? 2/3 chance isn’t that comforting honestly
I have heard the percentage is more like 10-15%, but that is still way too high a figure to be comfortable with. The reality of bile duct cancer hit home when Ray Manzarek, keyboardist from the Doors, died from it. When I was first diagnosed, I came across a quote that people with psc are far more likely die with it than because of it.
The best thing about psc is that it generally progresses slowly, while among the worst is its unpredictability. The longer you have psc, the greater chance you have of getting bile duct cancer.
It takes knowledge, discipline and focus long term/to live your live the way you want, to accept the fact you have this disease and to not let it define you or control you (you will still have to deal with the symptoms when they arise).
My 2/3 reference was just a play of words with your 1/3 chance of cancer. I just reversed it to show you a positive side. It’s like someone saying the glass is 1/2 empty instead of viewing that it’s 1/2 full.
There are no guarantee’s with life Nlapeyre. Just take it one day at a time. Fretting over it solves nothing. Got to head to bed.
This girl online reached out to me and told me she had only been diagnosed for 6 months and got cancer and it was all missed in all her tests, but then other sources plus you say it happens with time. I’m so lost trying to understand what is what. I’m sure you understand how confusing this disease can be too. Also you have UC, did you happen to have a colectomy? The colon cancer risk is there too, but not AS concerned since apparently can be caught easier than the bile duct
Goodnight, thank you for always trying to offer your wisdom. I’m trying here, just hard to keep it all together and understand so many contradicting points I find from this and that
I am a half full type of personality anyway so it is easy for me to say. But try and listen to the advice about getting the best treatment and care and then dont stress.
Another way to look at it is that you are still more likely to get killed by a car crash than by lots of diseases, but we still drive or be passengers. We need to, to simply live. We do this be reasoning that if we cocoon ourselves we will then have no life. Do the same with this disease. Look at it in the eye and say bring it on, until that day happens attend all your medical appointments, but more importantly create many more life experiences appointments to also attend.
Stay positive Gaz
Bile duct cancer is very real with PSC. My husband was diagnosed last July with PSC and bile duct cancer. He didn’t qualify for a liver transplant so he is now in treatment to control and maintain as the Dr tell us. He is doing okay now but we know that tomorrow could always be a new day. Mark is so right that you need to take it one day at a time and that is what we have learned to do. Every good day is a great day. We still have our days of fear but we do our crying or whatever and then move on and decide to make the very best of it. We lived at a distance from our family so we sold our home which we dearly loved and moved closer to our children and some wonderful Drs. He loves to fish so he now gets to go fishing often with our oldest son and we get together with our other children and one of the biggest blessing in our lives our grandchildren. We are taking life one day at a time and living it to the fullest. This us not meant to scare you I just hope you can find your way thru this and live a long happy peaceful life. As it has has been said find a good heptotolgist and he/she can be a big part of your care. Kathy
I am truly so sorry to hear this for him, and for you. I wish the best for him and hope he beats this crap! Why would he not qualify for a transplant? My GI this morning told me in case of cancer findings the next step is usually transplant. I read your bio on your profile and confused why this wouldn’t be his option. I am seen at UCSD California, but I know at Mayo Clinic they have done bile duct cancer transplant
Niapeyre thank you. He had a biospy done in November everything was good til they told us that a microscopic cancer cell was found in one of the 5 or 6 specimens taken so at that point the cancer was listed as it has spread and the staging was 4. They are telling us that he has no hope but to be in and out of treatment for the rest of his life. He told them that he was not giving in to this ugly disease as long as he has the ability to fight it. He has had several hospitalizations due to complications of the treatments but he is presently doing pretty good. His Ca-19 9 numbers were good in March. He returns to see his oncologist on May 16th to check numbers and whether or not they will restart his treatments again. We are hoping for the numbers to still be good. It has been a long road and we realize we have a long road ahead also. They did tell us that not everyone develops bile duct cancer so that is good news for so many people that are fighting PSC. Well need to get going because I’m scheduled for cataract surgery today. Our journey in life seems to be quite busy lately. Hoping for everyone to have a good day. Kathy