Guest guest Posted January 6, 2000 Report Share Posted January 6, 2000 Liz, It is my understanding, from what and I have been told, that in the majority of cases PSC will develop into bile duct cancer. We were also told that if this happens they will not consider him for a transplant, because once the cancer is there, it is likely to spread and doing a transplant would be useless because it may have already spread to other areas or affected the main hepatic duct. I hope this doesn't happen to anyone, but it did happen to Walter Payton. Hope I didn't upset you with that tidbit, if I am mistaken, please let me know. Spring Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2000 Report Share Posted January 6, 2000 Hi Spring, No, you didn't upset me with your reply. I more or less am prepared for anything these days. I just wanted to get some feedback from those in the group that are much more knowledgable than myself as far as transplant issues go. I am so sorry to hear about your husband's past medical history. As if that weren't enough for one person to go through. I guess we never know what is in the cards for us. Anyway, welcome to the group. I hope you get as much out of being a member as I do. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2000 Report Share Posted January 6, 2000 Spring, I believe you are mistaken. The cancer rate (Cholangiocarcinoma) for PSC patients is between 7-12%. Most of us will not get cancer. Adam In a message dated 1/6/00 6:44:38 PM Pacific Standard Time, SPRINGREED@... writes: It is my understanding, from what and I have been told, that in the majority of cases PSC will develop into bile duct cancer. We were also told that if this happens they will not consider him for a transplant, because once the cancer is there, it is likely to spread and doing a transplant would be useless because it may have already spread to other areas or affected the main hepatic duct. I hope this doesn't happen to anyone, but it did happen to Walter Payton. Hope I didn't upset you with that tidbit, if I am mistaken, please let me know. Spring >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2000 Report Share Posted January 6, 2000 Spring, I believe you are mistaken. The cancer rate (Cholangiocarcinoma) for PSC patients is between 7-12%. Most of us will not get cancer. Adam In a message dated 1/6/00 6:44:38 PM Pacific Standard Time, SPRINGREED@... writes: It is my understanding, from what and I have been told, that in the majority of cases PSC will develop into bile duct cancer. We were also told that if this happens they will not consider him for a transplant, because once the cancer is there, it is likely to spread and doing a transplant would be useless because it may have already spread to other areas or affected the main hepatic duct. I hope this doesn't happen to anyone, but it did happen to Walter Payton. Hope I didn't upset you with that tidbit, if I am mistaken, please let me know. Spring >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2000 Report Share Posted January 6, 2000 The estimated lifetime risk of bile duct cancer in PSC patients is estimated to be about 10%. That's a big number if you are one of those 10% like Walter Payton. But it's not the majority. Anyway the problem with this cancer is by the time it is detected it usually has spread which does rule out transplantation. Immune supression can make the cancer grow quickly. Thanks Roy T. Re: Transplant evaluation > Liz, > > It is my understanding, from what and I have been told, that in the > majority of cases PSC will develop into bile duct cancer. We were also told > that if this happens they will not consider him for a transplant, because > once the cancer is there, it is likely to spread and doing a transplant would > be useless because it may have already spread to other areas or affected the > main hepatic duct. I hope this doesn't happen to anyone, but it did happen > to Walter Payton. Hope I didn't upset you with that tidbit, if I am > mistaken, please let me know. > > Spring > > ------------------------------------------------------------------------ > Want to send money instantly to anyone, anywhere, anytime? > You can today at X.com - and we'll give you $20 to try it! Sign > up today at X.com. It's quick, free, & there's no obligation! > http://click./1/332/4/_/24674/_/947211757 > > -- Check out your group's private Chat room > -- /ChatPage?listName= & m=1 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 Aubrey, I had an MRCP one year ago, after itching led to discovery of elevated LFTs through blood tests, and after ultrasound showed nothing abnormal. My understanding is that MRCP is a variation on the standard MRI, one that is focused on the liver. My gastroenterologist, who had consulted a prominent hepatologist, was operating under the assumption that an MRCP would reveal PSC (his preliminary diagnosis based on symptology), but in fact my MRCP proved negative. Then I had a liver biopsy, which was suggestive of PSC -- but apparently biopsy is not conclusively diagnostic. My doctor strongly urged me to have an ERCP next, to prove I had PSC, but I decided I had enough proof, and because I was (and hopefully still am a year later) in an early stage of the disease there was very little chance that the ERCP could be therapeutic (i.e., dilation of ducts). I consulted 2 other doctors, who agreed with my reasoning. -- Erwin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 Roy, Thanks for the info re bile duct cancer. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 Hi Aubrey, Thanks for the information about cholangiocarcinoma. By MRCP, I mean a MR cholangiogram. Liz Quote Link to comment Share on other sites More sharing options...
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