RE: My last MRCP - possible CCA

November 16, 2007

I would definitely get the histologic samples, whether a regular biopsy or brushing. I think the Mayo does brushings. I would also move as fast as possible on this, as the best chance with CCA is really early detection. You may or may not know this, but the Mayo clinic has a procedure that is pretty successful for treating early CCA. Other facilities are starting to follow the Mayo procedure.

I know this is incredibly scary. But you can take this one step at a time and get through this. Please do keep us posted.

Marie

To: From: 1megpie@...Date: Fri, 16 Nov 2007 05:53:36 +0000Subject: My last MRCP

I haven't been around much. I changed jobs, moved, husband got a new job also AND he's still a full time student. I know this place is always so full of love and encouragement, and frankly, I really need some tonight.I had an MRCP last Monday. On Friday they called me back because they "just wanted a couple more sequences". They said everything was fine, no problems, just wanted to be thorough. I have been around long enough to know that is NOT what was going on. Something wasn't right. I got a copy of my final report and it's talking about intrahepatic air, an enlarged portal triad "reminiscent of noncontrast enhanced MRI in the setting of biliary inflammation or even neoplasm. This non-contrast-enhanced appearance can be seen with sclerosing cholangitis or with cholangiocarcinoma"I realize that it's a whole bunch of "maybes" and "don't really know yets" but all I can see is the C word. The rest of the report details a bunch of dilations and strictures that weren't there last year. Throw in a couple filling defects and the fact that I'm a nurse, and I'm a mess.The radiologist recommends an ERCP to get some histalogic samples and higher resolution images. To all of you out there who have been there, what is the real value of histlogic samples? I thought that the brushings were notoriously insensitive. I read somewhere that with certain kinds of strictures, only 20% of cholangiocarcinomas actually yield cancerous brushings. For that kind of result, is it really worth the risk of infection with the ERCP?I go see my doctor tomorrow. MY GI doc has taken great care of me, but I'm thinking that if it's time to go digging around in my bile ducts, it's time to switch to a hepatologist. Methodist in Dallas has a liver center. Anyone know much about it? Help yourself to FREE treats served up daily at the Messenger Café. Stop by today!

November 16, 2007

My appointment with my GI doctor went well. I was worried about how

to explain that while I thought he provided great care, I thought it

was time to move on to a tertiary care center. He beat me to the

punch. He told me that he had contacted a doctor up in Dallas and

that he really thought I needed to be evaluated by this guy because he

has a " mother daughter scope " that allows for MUCH better

visualization than the typical scopes.

His impression of things, after speaking with the radiologist is that

it probably isn't CCA, but it's important to have it evaluated to make

sure.

I guess I'm still in for more waiting...gotta wait for the consult,

wait for the ERCP, wait for the results. *sigh*

I'm hoping that if it IS something bad, it's tiny and we'll be able to

take care of it easy.

Does anyone know if the UPittsburgh liver center uses the mayo

protocol? Mayo is pretty darn far away (and so is Pittsburgh), but

mom and dad are in Pittsburgh.

>

> I would definitely get the histologic samples, whether a regular biopsy or

> brushing. I think the Mayo does brushings. I would also move as fast as

> possible on this, as the best chance with CCA is really early detection. You

> may or may not know this, but the Mayo clinic has a procedure that is pretty

> successful for treating early CCA. Other facilities are starting to follow

> the Mayo procedure.

>

> I know this is incredibly scary. But you can take this one step at a time

> and get through this. Please do keep us posted.

>

> Marie

>

> ________________________________

> To:

> From: 1megpie@...

> Date: Fri, 16 Nov 2007 05:53:36 +0000

> Subject: My last MRCP

>

> I haven't been around much. I changed jobs, moved, husband got a new

> job also AND he's still a full time student.

>

> I know this place is always so full of love and encouragement, and

> frankly, I really need some tonight.

>

> I had an MRCP last Monday. On Friday they called me back because

> they " just wanted a couple more sequences " . They said everything was

> fine, no problems, just wanted to be thorough. I have been around

> long enough to know that is NOT what was going on. Something wasn't

> right. I got a copy of my final report and it's talking about

> intrahepatic air, an enlarged portal triad " reminiscent of

> noncontrast enhanced MRI in the setting of biliary inflammation or

> even neoplasm. This non-contrast-enhanced appearance can be seen

> with sclerosing cholangitis or with cholangiocarcinoma "

>

> I realize that it's a whole bunch of " maybes " and " don't really know

> yets " but all I can see is the C word.

>

> The rest of the report details a bunch of dilations and strictures

> that weren't there last year. Throw in a couple filling defects and

> the fact that I'm a nurse, and I'm a mess.

>

> The radiologist recommends an ERCP to get some histalogic samples and

> higher resolution images.

>

> To all of you out there who have been there, what is the real value

> of histlogic samples? I thought that the brushings were notoriously

> insensitive. I read somewhere that with certain kinds of strictures,

> only 20% of cholangiocarcinomas actually yield cancerous brushings.

> For that kind of result, is it really worth the risk of infection

> with the ERCP?

>

> I go see my doctor tomorrow. MY GI doc has taken great care of me,

> but I'm thinking that if it's time to go digging around in my bile

> ducts, it's time to switch to a hepatologist. Methodist in Dallas

> has a liver center. Anyone know much about it?

>

> ________________________________

> Help yourself to FREE treats served up daily at the Messenger Café. Stop by

> today!

>

November 17, 2007

Sorry folks, for some reason I can't delete the prior posts.Meg,The best thing

to do is check the psc-literature web site that created and do a

search of cholangiocarcinoma. You will hopefully find info on the different

facilities as well, but perhaps not. As to the Univ. of Pittsburgh, I'm not sure

if they follow the Mayo clinic protocol, but perhaps you can call their

hepatology unit and talk to one of their doctors. Marie

To: @...: 1megpie@...: Fri, 16 Nov 2007

22:04:10 -0600Subject: Re: My last MRCP - possible CCA