Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Hi All, I went into see my new doctor @ Scripps today...again thinking I was going to hear I was stage 1 or 2 with my PSC...Why? Because I've been feeling great because of the URSO & cholestyramine he put me on two weeks ago....and I get....(That I might have cancer) along with my PSC and in my bile ducts....something to do with a blood test they did and my count was 300+? After my Dr. said that.... my brain went into comatose state...and I think heard the words CT scan with die and exploratory surgery.... Mayo clinic..yada, yada yada! I just went outa body...weird..can anyone relate...? Don B...PSC/UC-11-08 PS Rule number 1 don't go to the DR. by yourself....I can't even remember the drive home! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Yes......my husband was diagnosed with PSC when he went in for an outpatient procedure to remove what we thought was a stone in his bile duct in May of 2007. After immediate surgery (his biliruban was 19), and MANY complications, he came home surviving all odds 7 1/2 months later from a very grueling stay in ICU. That following spring a team of doctors said after having a barrage of testing, that he could be a candidate for a liver transplant. However, since he he had had bladder cancer in 2005 and not declared cancer free until November of 2006, he could not be considered for a liver transplant unless he was cancer free for 2 years. We had to get to November of 2008. In April of 2008 his cancer returned. The 2 year count started over and in December his cancer returned again. This time, because of the stage of his PSC they can not do chemo.........we know what numb is and looking at doctors lips moving and no sound coming out is........ However...Do NOT give up hope..we still have not.......we make every day count! Our prayers are with you!Bobbie Subject: Ouch!To: Cc: mtc.wells@..., rhodesdavid1@..., "john drukker" Date: Thursday, February 19, 2009, 8:46 PM Hi All, I went into see my new doctor @ Scripps today...again thinking I was going to hear I was stage 1 or 2 with my PSC...Why? Because I've been feeling great because of the URSO & cholestyramine he put me on two weeks ago....and I get....(That I might have cancer) along with my PSC and in my bile ducts....something to do with a blood test they did and my count was 300+? After my Dr. said that.... my brain went into comatose state...and I think heard the words CT scan with die and exploratory surgery.... Mayo clinic..yada, yada yada! I just went outa body...weird. .can anyone relate...? Don B...PSC/UC-11- 08 PS Rule number 1 don't go to the DR. by yourself.... I can't even remember the drive home! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Hi Don; Stay positive. The important word is " might " . The blood test you are referring to is probably CA19-9. This tumor marker can be elevated in PSC patients due to blockages (stenoses) in the bile ducts: Z. Gastroenterol. 2005 Jun;43(6):587-90. Impact of dominant stenoses on the serum level of the tumor marker CA19-9 in patients with primary sclerosing cholangitis. sen-Benz C, Stiehl A Abteilung für Gastroenterologie, Medizinische Klinik IV, Universitätskliniken Köln, Germany. .Benz@... BACKGROUND/AIMS: Patients with primary sclerosing cholangitis (PSC) have an increased risk of developing hepatobiliary tumors. The tumor marker CA19-9 was claimed to indicate the occurrence of bile duct carcinoma. This study aimed to assess whether increased serum levels of CA19-9 in PSC patients with dominant stenoses indicate bile duct carcinoma. METHODS: The study cohort comprised 106 patients treated over a median time of 5.0 years (range 0.5 - 13 years). All patients were treated with ursodeoxycholic acid (UDCA) and whenever they developed dominant stenoses by endoscopic dilatation of these stenoses. In endoscopically treated patients, CA19-9 levels were measured before and 3, 6, 12 and 24 months after endoscopic dilatation. RESULTS: Of the 106 patients, 22 carcinoma-free patients and 3 patients with bile duct carcinoma had elevated CA19-9 levels. In 14 out of 25 patients with elevated CA19-9 levels, dominant stenoses were diagnosed and treated by endoscopic dilatation. In 71.4 % of the endoscopically treated patients, CA19-9 levels decreased following the endoscopic intervention. CONCLUSIONS: In PSC patients, increased serum levels of CA19-9 are rarely due to the development of bile duct carcinoma. In patients with dominant stenoses, the relief of biliary obstruction by endoscopic dilatation may lead to a decrease of the serum levels of CA19-9. PMID: 15986288. Yes, do have follow-up to look for bile-duct blockages, but don't assume cancer right now. Best regards, Dave (father of (23); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 Don, I just went through that. I was told after an ercp in Nov that I should meet with a transpant dr. I thought it was because my PSC was progressing, but like you I have been feeling pretty good. I get to the transplant dr and he's like yeah we do the mayo protocol with radiation and chemo, surgery, then transplant. I was stunned! Blind sided! Thank goodness people were with me. I don't remember half the conversation. I went for my follow up ercp a few weeks ago and was told that even though my cells look atypical I don't have cca. Good news! My advice to you is to educate yourself on what might happen so you don't get blind sided again, but also take it with a grain of salt. Remember to breathe!!! Keep it real and talk to someone who gives you encouragement and support. Did they say anything about a FISH test? This will give you the best indication whether it really is cancer or not. My thoughts, Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 Don, I just went through that. I was told after an ercp in Nov that I should meet with a transpant dr. I thought it was because my PSC was progressing, but like you I have been feeling pretty good. I get to the transplant dr and he's like yeah we do the mayo protocol with radiation and chemo, surgery, then transplant. I was stunned! Blind sided! Thank goodness people were with me. I don't remember half the conversation. I went for my follow up ercp a few weeks ago and was told that even though my cells look atypical I don't have cca. Good news! My advice to you is to educate yourself on what might happen so you don't get blind sided again, but also take it with a grain of salt. Remember to breathe!!! Keep it real and talk to someone who gives you encouragement and support. Did they say anything about a FISH test? This will give you the best indication whether it really is cancer or not. My thoughts, Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 Don, I just went through that. I was told after an ercp in Nov that I should meet with a transpant dr. I thought it was because my PSC was progressing, but like you I have been feeling pretty good. I get to the transplant dr and he's like yeah we do the mayo protocol with radiation and chemo, surgery, then transplant. I was stunned! Blind sided! Thank goodness people were with me. I don't remember half the conversation. I went for my follow up ercp a few weeks ago and was told that even though my cells look atypical I don't have cca. Good news! My advice to you is to educate yourself on what might happen so you don't get blind sided again, but also take it with a grain of salt. Remember to breathe!!! Keep it real and talk to someone who gives you encouragement and support. Did they say anything about a FISH test? This will give you the best indication whether it really is cancer or not. My thoughts, Holly Quote Link to comment Share on other sites More sharing options...
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