mild dysplasia/colectomy??

[Guest guest]

My annual colonoscopy showed mild dysplasia in one biopsy. I was told that I would have to have a colectomy but that it would be high risk due to my stage of PSC, age, etc. My GI did another colonoscopy 10 days later and they did not find any dysplasia. I have an appointment with a colorectal surgeon tomorrow. I was told if I was otherwise normal they would do the colectomy but since I would have a high risk of liver failure or death from the surgery they may monitor situation by having colonscopies every three months. After meeting with my GI doctor last week he seemed to think after talking to Transplant team, surgeon and PCP that I may not be able wait. I was just wondering if anyone else had mild dysplasia and what you did. I know alot of people have had colectormies. My GI doctor told me he had another patient with PSC and had a colectomy for other reasons. But that he was younger and his PSC was in the early stage. Patti Crohns,UC,PSC 1995, listed 6/06

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I had a colectomy in 2000 due to adenomas in the colon. I also had tons of pysdopolyps. About 90% of the large intestine was removed, leaving the sigmoid, rectum and anus. It was during the surgery that the surgeon noticed that my liver looked cirrhotic, which was the first I learned that there was something wrong with my liver. So I was in very early stages of PSC at that time. I survived the surgery w/o incident, although it was a though thing to go through, since I felt fine, and I knew the surgery would be life changing. But I also knew the risk of colon cancer was pretty much 100%. The UCLA doctor thought I had a 20% chance of already having colon cancer, but no cancer was found.You're in a much different situation, since you're listed for a transplant. One thing to consider is that if you do get colon cancer, with some transplant centers you will not be eligible for a transplant until you've been cancer free for 5 years. Now that is cause for pause and thought.You only have mild dyplasia, and it was only seen once. So who knows when you would be likely to get colon cancer. It could be several years away. Ideally, you should have the transplant first, and as soon as possible. Is it possible to get gifted some MELD points so that you go to the top of the transplant list?If the colectomy isn't so risky, then I would say have that first and right away, to remove that risk of cancer. You want to stay listed for the liver transplant.I would get as many opinions on this as possible, weigh all the issues, talk to as many experts as you can, including your doctors and the transplant team, and then make your decision.The very best of luck to you, and please keep us posted.Marie

My annual colonoscopy showed mild dysplasia in one biopsy. I was told that I would have to have a colectomy but that it would be high risk due to my stage of PSC, age, etc. My GI did another colonoscopy 10 days later and they did not find any dysplasia. I have an appointment with a colorectal surgeon tomorrow. I was told if I was otherwise normal they would do the colectomy but since I would have a high risk of liver failure or death from the surgery they may monitor situation by having colonscopies every three months. After meeting with my GI doctor last week he seemed to think after talking to Transplant team, surgeon and PCP that I may not be able wait. I was just wondering if anyone else had mild dysplasia and what you did. I know alot of people have had colectormies. My GI doctor told me he had another patient with PSC and had a colectomy for other reasons. But that he was younger and his PSC was in the early stage. Patti Crohns,UC,PSC 1995, listed 6/06 Be a better pen pal. Text or chat with friends inside Yahoo! Mail. See how.

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I was scheduled to have a colectomy today. but after haivng a CT scan they found something suspicious in my right lobe of my liver and scheduled an MRI which showed something suspciious in the LEFT. but they think it is unlikely that it is cholnagiocarcinoma but they cannot rule that out without removing that portion of the liver to biopsy. So, they postponed the colectomy and the liver tumor board was going to meet and discuss my case. I remember seeing in previous posts a cholangiocarinoma specialist at Mayo Clinic. Can somebody please let me know who the doctor was and if they knew if there is still a possibility of transplant if it is cholangiocarcinoma. Also, has anyone had a portion of their liver resected who has cirrhosis prior to transplant? Thank you,Marie Nilsson wrote: I had a colectomy in 2000 due to adenomas in the colon. I also had tons of pysdopolyps. About 90% of the large intestine was removed, leaving the sigmoid, rectum and anus. It was during the surgery that the surgeon noticed that my liver looked cirrhotic, which was the first I learned that there was something wrong with my liver. So I was in very early stages of PSC at that time. I survived the surgery w/o incident, although it was a though thing to go through, since I felt fine, and I knew the surgery would be life changing. But I also knew the risk of colon cancer was pretty much 100%. The UCLA doctor

thought I had a 20% chance of already having colon cancer, but no cancer was found.You're in a much different situation, since you're listed for a transplant. One thing to consider is that if you do get colon cancer, with some transplant centers you will not be eligible for a transplant until you've been cancer free for 5 years. Now that is cause for pause and thought.You only have mild dyplasia, and it was only seen once. So who knows when you would be likely to get colon cancer. It could be several years away. Ideally, you should have the transplant first, and as soon as possible. Is it possible to get gifted some MELD points so that you go to the top of the transplant list?If the colectomy isn't so risky, then I would say have that first and right away, to remove that risk of cancer. You want to stay listed for the liver transplant.I would get as many opinions on this as possible, weigh all the issues, talk to as many experts as you can,

including your doctors and the transplant team, and then make your decision.The very best of luck to you, and please keep us posted. Marie My annual colonoscopy showed mild dysplasia in one biopsy. I was told that I would have to have a colectomy but that it would be high risk due to my stage of PSC, age, etc. My GI did another colonoscopy 10 days later and they did not find any dysplasia. I have an appointment with a colorectal surgeon tomorrow. I was told if I was otherwise normal they would do the colectomy but since I would have a high risk of liver failure or death from the surgery they may monitor situation by having colonscopies every three months. After meeting with my GI doctor last week

he seemed to think after talking to Transplant team, surgeon and PCP that I may not be able wait. I was just wondering if anyone else had mild dysplasia and what you did. I know alot of people have had colectormies. My GI doctor told me he had another patient with PSC and had a colectomy for other reasons. But that he was younger and his PSC was in the early stage. Patti Crohns,UC,PSC 1995, listed 6/06 Be a better pen pal. Text or chat with friends inside Yahoo! Mail. See how. Boo! Scare away worms, viruses and so much more! Try Windows Live OneCare! Try now!

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[Guest guest]

Hi ;

I'm so sorry to hear about the suspicious area in your left liver

lobe. I sincerely hope that it is not cholangiocarcinoma. The best

person working on early detection and treatment of cholangiocarcinoma

at Mayo Clinic, Rochester, MN is Dr. Greg Gores. Here's a link to one

of his relevant publications:

Gores GJ 2000 Early detection and treatment of cholangiocarcinoma.

Liver Transpl. 6: S30-S34.

http://www3.interscience.wiley.com/cgi-bin/fulltext/106593131/PDFSTART

Many other abstracts of papers that he has authored can be found here:

http://www.psc-literature.org/GoresG.htm

Best regards,

Dave

(father of (22); PSC 07/03; UC 08/03)

> I remember seeing in previous posts a cholangiocarinoma

specialist at Mayo Clinic. Can somebody please let me know who the

doctor was and if they knew if there is still a possibility of

transplant if it is cholangiocarcinoma. Also, has anyone had a

portion of their liver resected who has cirrhosis prior to transplant?

[Guest guest]

-- my husband, Brad, was diagnosed with cholangiocarcinoma

(officially) in 2006. We met with Dr. Gores at Mayo, and Brad was

considered a candidate for transplant until tests revealed the cancer

had spread to lymph nodes. That was the bad news.

The good news is that Brad has undergone radiation and chemo for CCA

and is doing well. Each day is a blessing.

Wishing you only the best,

DianeC

[Guest guest]

,

was diagnosed with CCa in April 2007. He is currently waiting

for a liver transplant...... not having fun, though.

There is hope as it is considered a cure for the cancer and psc.

God Bless,

Franson