Re: New here with new problems - feedback PLEASE!

[Guest guest]

Rick,

You're right, your doctor is jumping on the worst case scenario - and

is testing to see if it is CCA and move you toward treatment as fast

as possible. All of which I would want if I had CCA. If CCA is ruled

out, and hopefully it will be, the other causes of an increased

bilirubin are much less critical. Stones can pass, strictures can be

stented or ballooned, urso can help prevent stones.

Hang in there and let us know how your tests go. Your doctor is

probably thinking he would rather give you good news if the tests are

negative than to let you think it is nothing and hit you with CCA if

the tests are positive. I think it is better to realize nothing is

known for sure, even with testing. But early on you can't assume anything.

Tim R, ltx 4/4/98, 6/18/07 & 7/7/07

> My GI is concerned that the sudden increase in bilirubin is a bad

> signal and that it indicates probably cholangiocarcinoma. He also

> suggested it might be a gallstone, but was more suggestive of CCA.

> So, I have an ultrasound scheduled for tomorrow, a followup

> appointment on Friday, and then we will schedule ERCP and tumor

> market bloodwork.

[Guest guest]

Rick,

You're right, your doctor is jumping on the worst case scenario - and

is testing to see if it is CCA and move you toward treatment as fast

as possible. All of which I would want if I had CCA. If CCA is ruled

out, and hopefully it will be, the other causes of an increased

bilirubin are much less critical. Stones can pass, strictures can be

stented or ballooned, urso can help prevent stones.

Hang in there and let us know how your tests go. Your doctor is

probably thinking he would rather give you good news if the tests are

negative than to let you think it is nothing and hit you with CCA if

the tests are positive. I think it is better to realize nothing is

known for sure, even with testing. But early on you can't assume anything.

Tim R, ltx 4/4/98, 6/18/07 & 7/7/07

> My GI is concerned that the sudden increase in bilirubin is a bad

> signal and that it indicates probably cholangiocarcinoma. He also

> suggested it might be a gallstone, but was more suggestive of CCA.

> So, I have an ultrasound scheduled for tomorrow, a followup

> appointment on Friday, and then we will schedule ERCP and tumor

> market bloodwork.

[Guest guest]

Tim, thank you for the quick reply. I can see that you've had a

significant amount of liver experience so I really appreciate your

feedback. This time that is " in limbo " waiting to get some kind of

an idea for the sudden rise in bilirubin is difficult because I want

to know critical information right away or else I worry about it too

much like I am right now.

Is it reasonable to assume that a sudden rise from normal bili at .6

to just a touch abnormal at 1.5 over a 6 month period to be

suspecting CCA as the cause? That just blows me away because it

seems like everything had been going so well. I would have thought

it is more likely to assume a stone or stricturing, etc.

Has anyone else had sudden rises in bilirubin from normal to abnormal

like this - or have you all been slowly progressive? If so, what was

determined to be the cause of your sudden increase?

Thanks!

Rick (31) UC 1991/Colon cancer and colectomy with J pouch 2005/PSC

2005 at stage 1

>

> Rick,

> You're right, your doctor is jumping on the worst case scenario -

and

> is testing to see if it is CCA and move you toward treatment as fast

> as possible. All of which I would want if I had CCA. If CCA is ruled

> out, and hopefully it will be, the other causes of an increased

> bilirubin are much less critical. Stones can pass, strictures can be

> stented or ballooned, urso can help prevent stones.

>

> Hang in there and let us know how your tests go. Your doctor is

> probably thinking he would rather give you good news if the tests

are

> negative than to let you think it is nothing and hit you with CCA if

> the tests are positive. I think it is better to realize nothing is

> known for sure, even with testing. But early on you can't assume

anything.

>

> Tim R, ltx 4/4/98, 6/18/07 & 7/7/07

>

[Guest guest]

---

When I saw my new hepatologist on Monday, he explained to me that any

time there is a sudden change, they become suspicious of CCA. With

that said, I had some very serious problems last winter/Spring to

include dropping between 60 and 70 pounds in about 2-3 months and my

Dr's were very concerned that I had CCA. It was an absolute

nightmare going through all the tests and waiting for answers. The

good news was that it wasn't CCA, I had developed multiple vitiman

deficiencies, which now have been corrected. My Doctor told me that

he was obligated to tell me what it could be and was very glad when

they figured out what it was so that he could give me good news.

Hang in there. I hope your results are a positive as mine were

Dawn

In , " rick.kamp " wrote:

>

> Tim, thank you for the quick reply. I can see that you've had a

> significant amount of liver experience so I really appreciate your

> feedback. This time that is " in limbo " waiting to get some kind of

> an idea for the sudden rise in bilirubin is difficult because I

want

> to know critical information right away or else I worry about it

too

> much like I am right now.

>

> Is it reasonable to assume that a sudden rise from normal bili

at .6

> to just a touch abnormal at 1.5 over a 6 month period to be

> suspecting CCA as the cause? That just blows me away because it

> seems like everything had been going so well. I would have thought

> it is more likely to assume a stone or stricturing, etc.

>

> Has anyone else had sudden rises in bilirubin from normal to

abnormal

> like this - or have you all been slowly progressive? If so, what

was

> determined to be the cause of your sudden increase?

>

> Thanks!

>

> Rick (31) UC 1991/Colon cancer and colectomy with J pouch 2005/PSC

> 2005 at stage 1

>

>

>

>

>

>

> >

> > Rick,

> > You're right, your doctor is jumping on the worst case scenario -

> and

> > is testing to see if it is CCA and move you toward treatment as

fast

> > as possible. All of which I would want if I had CCA. If CCA is

ruled

> > out, and hopefully it will be, the other causes of an increased

> > bilirubin are much less critical. Stones can pass, strictures can

be

> > stented or ballooned, urso can help prevent stones.

> >

> > Hang in there and let us know how your tests go. Your doctor is

> > probably thinking he would rather give you good news if the tests

> are

> > negative than to let you think it is nothing and hit you with CCA

if

> > the tests are positive. I think it is better to realize nothing is

> > known for sure, even with testing. But early on you can't assume

> anything.

> >

> > Tim R, ltx 4/4/98, 6/18/07 & 7/7/07

> >

>

[Guest guest]

---

When I saw my new hepatologist on Monday, he explained to me that any

time there is a sudden change, they become suspicious of CCA. With

that said, I had some very serious problems last winter/Spring to

include dropping between 60 and 70 pounds in about 2-3 months and my

Dr's were very concerned that I had CCA. It was an absolute

nightmare going through all the tests and waiting for answers. The

good news was that it wasn't CCA, I had developed multiple vitiman

deficiencies, which now have been corrected. My Doctor told me that

he was obligated to tell me what it could be and was very glad when

they figured out what it was so that he could give me good news.

Hang in there. I hope your results are a positive as mine were

Dawn

In , " rick.kamp " wrote:

>

> Tim, thank you for the quick reply. I can see that you've had a

> significant amount of liver experience so I really appreciate your

> feedback. This time that is " in limbo " waiting to get some kind of

> an idea for the sudden rise in bilirubin is difficult because I

want

> to know critical information right away or else I worry about it

too

> much like I am right now.

>

> Is it reasonable to assume that a sudden rise from normal bili

at .6

> to just a touch abnormal at 1.5 over a 6 month period to be

> suspecting CCA as the cause? That just blows me away because it

> seems like everything had been going so well. I would have thought

> it is more likely to assume a stone or stricturing, etc.

>

> Has anyone else had sudden rises in bilirubin from normal to

abnormal

> like this - or have you all been slowly progressive? If so, what

was

> determined to be the cause of your sudden increase?

>

> Thanks!

>

> Rick (31) UC 1991/Colon cancer and colectomy with J pouch 2005/PSC

> 2005 at stage 1

>

>

>

>

>

>

> >

> > Rick,

> > You're right, your doctor is jumping on the worst case scenario -

> and

> > is testing to see if it is CCA and move you toward treatment as

fast

> > as possible. All of which I would want if I had CCA. If CCA is

ruled

> > out, and hopefully it will be, the other causes of an increased

> > bilirubin are much less critical. Stones can pass, strictures can

be

> > stented or ballooned, urso can help prevent stones.

> >

> > Hang in there and let us know how your tests go. Your doctor is

> > probably thinking he would rather give you good news if the tests

> are

> > negative than to let you think it is nothing and hit you with CCA

if

> > the tests are positive. I think it is better to realize nothing is

> > known for sure, even with testing. But early on you can't assume

> anything.

> >

> > Tim R, ltx 4/4/98, 6/18/07 & 7/7/07

> >

>

[Guest guest]

---

When I saw my new hepatologist on Monday, he explained to me that any

time there is a sudden change, they become suspicious of CCA. With

that said, I had some very serious problems last winter/Spring to

include dropping between 60 and 70 pounds in about 2-3 months and my

Dr's were very concerned that I had CCA. It was an absolute

nightmare going through all the tests and waiting for answers. The

good news was that it wasn't CCA, I had developed multiple vitiman

deficiencies, which now have been corrected. My Doctor told me that

he was obligated to tell me what it could be and was very glad when

they figured out what it was so that he could give me good news.

Hang in there. I hope your results are a positive as mine were

Dawn

In , " rick.kamp " wrote:

>

> Tim, thank you for the quick reply. I can see that you've had a

> significant amount of liver experience so I really appreciate your

> feedback. This time that is " in limbo " waiting to get some kind of

> an idea for the sudden rise in bilirubin is difficult because I

want

> to know critical information right away or else I worry about it

too

> much like I am right now.

>

> Is it reasonable to assume that a sudden rise from normal bili

at .6

> to just a touch abnormal at 1.5 over a 6 month period to be

> suspecting CCA as the cause? That just blows me away because it

> seems like everything had been going so well. I would have thought

> it is more likely to assume a stone or stricturing, etc.

>

> Has anyone else had sudden rises in bilirubin from normal to

abnormal

> like this - or have you all been slowly progressive? If so, what

was

> determined to be the cause of your sudden increase?

>

> Thanks!

>

> Rick (31) UC 1991/Colon cancer and colectomy with J pouch 2005/PSC

> 2005 at stage 1

>

>

>

>

>

>

> >

> > Rick,

> > You're right, your doctor is jumping on the worst case scenario -

> and

> > is testing to see if it is CCA and move you toward treatment as

fast

> > as possible. All of which I would want if I had CCA. If CCA is

ruled

> > out, and hopefully it will be, the other causes of an increased

> > bilirubin are much less critical. Stones can pass, strictures can

be

> > stented or ballooned, urso can help prevent stones.

> >

> > Hang in there and let us know how your tests go. Your doctor is

> > probably thinking he would rather give you good news if the tests

> are

> > negative than to let you think it is nothing and hit you with CCA

if

> > the tests are positive. I think it is better to realize nothing is

> > known for sure, even with testing. But early on you can't assume

> anything.

> >

> > Tim R, ltx 4/4/98, 6/18/07 & 7/7/07

> >

>

[Guest guest]

Rick,I would agree with Tim that you're lucky the doctor is looking for CCA immediately, since the window of opportunity for successful treatment is very narrow. Better to look for CCA right away. If it's not CCA then they can check for other reasons for the increased bilirubin. Most doctors would rule out other problems first, then check on the CCA. By the time they got around to looking for CCA, it would be too late to do anything, and they'd tell you to put your affairs in order. All that being said, so far from what you've written, it sounds like your doctor jumped the gun. And hopefully that is the case. What was your CA-19-9? Was that elevated? The last time my bilirubin increased, it turned out I had the added diagnosis of autoimmune hepatitis, which is being successful treated with prednisone and imuran (immunosuppressants).Marie

To: From: tromlein@...Date: Thu, 18 Sep 2008 01:21:42 +0000Subject: Re: New here with new problems - feedback PLEASE!

Rick,

You're right, your doctor is jumping on the worst case scenario - and

is testing to see if it is CCA and move you toward treatment as fast

as possible. All of which I would want if I had CCA. If CCA is ruled

out, and hopefully it will be, the other causes of an increased

bilirubin are much less critical. Stones can pass, strictures can be

stented or ballooned, urso can help prevent stones.

Hang in there and let us know how your tests go. Your doctor is

probably thinking he would rather give you good news if the tests are

negative than to let you think it is nothing and hit you with CCA if

the tests are positive. I think it is better to realize nothing is

known for sure, even with testing. But early on you can't assume anything.

Tim R, ltx 4/4/98, 6/18/07 & 7/7/07

> My GI is concerned that the sudden increase in bilirubin is a bad

> signal and that it indicates probably cholangiocarcinoma. He also

> suggested it might be a gallstone, but was more suggestive of CCA.

> So, I have an ultrasound scheduled for tomorrow, a followup

> appointment on Friday, and then we will schedule ERCP and tumor

> market bloodwork.

Stay up to date on your PC, the Web, and your mobile phone with Windows Live. See Now

[Guest guest]

Rick,I would agree with Tim that you're lucky the doctor is looking for CCA immediately, since the window of opportunity for successful treatment is very narrow. Better to look for CCA right away. If it's not CCA then they can check for other reasons for the increased bilirubin. Most doctors would rule out other problems first, then check on the CCA. By the time they got around to looking for CCA, it would be too late to do anything, and they'd tell you to put your affairs in order. All that being said, so far from what you've written, it sounds like your doctor jumped the gun. And hopefully that is the case. What was your CA-19-9? Was that elevated? The last time my bilirubin increased, it turned out I had the added diagnosis of autoimmune hepatitis, which is being successful treated with prednisone and imuran (immunosuppressants).Marie

To: From: tromlein@...Date: Thu, 18 Sep 2008 01:21:42 +0000Subject: Re: New here with new problems - feedback PLEASE!

Rick,

You're right, your doctor is jumping on the worst case scenario - and

is testing to see if it is CCA and move you toward treatment as fast

as possible. All of which I would want if I had CCA. If CCA is ruled

out, and hopefully it will be, the other causes of an increased

bilirubin are much less critical. Stones can pass, strictures can be

stented or ballooned, urso can help prevent stones.

Hang in there and let us know how your tests go. Your doctor is

probably thinking he would rather give you good news if the tests are

negative than to let you think it is nothing and hit you with CCA if

the tests are positive. I think it is better to realize nothing is

known for sure, even with testing. But early on you can't assume anything.

Tim R, ltx 4/4/98, 6/18/07 & 7/7/07

> My GI is concerned that the sudden increase in bilirubin is a bad

> signal and that it indicates probably cholangiocarcinoma. He also

> suggested it might be a gallstone, but was more suggestive of CCA.

> So, I have an ultrasound scheduled for tomorrow, a followup

> appointment on Friday, and then we will schedule ERCP and tumor

> market bloodwork.

Stay up to date on your PC, the Web, and your mobile phone with Windows Live. See Now

[Guest guest]

Rick,Please see my other e-mail regarding my sudden increase in bilirubin.PSC can progress slowly, and then "suddenly" progress quickly. By suddenly I've heard that you can be doing relatively well, and then in a 2-3 month period things go south. Your liver can function pretty well at less than 100% capacity. But when it hits 30% capacity, it doesn't function well, and things start to go rather bad rather quickly. That is when you start getting the serious symptoms of PSC, such as hepatic encephalapathy (sp), ascites, esophageal varices and vomiting blood, and weight loss. However, jaundice is never good. That needs to be dealt with quickly. Marie

To: From: rick.kamp@...Date: Thu, 18 Sep 2008 02:07:15 +0000Subject: Re: New here with new problems - feedback PLEASE!

Tim, thank you for the quick reply. I can see that you've had a

significant amount of liver experience so I really appreciate your

feedback. This time that is "in limbo" waiting to get some kind of

an idea for the sudden rise in bilirubin is difficult because I want

to know critical information right away or else I worry about it too

much like I am right now.

Is it reasonable to assume that a sudden rise from normal bili at .6

to just a touch abnormal at 1.5 over a 6 month period to be

suspecting CCA as the cause? That just blows me away because it

seems like everything had been going so well. I would have thought

it is more likely to assume a stone or stricturing, etc.

Has anyone else had sudden rises in bilirubin from normal to abnormal

like this - or have you all been slowly progressive? If so, what was

determined to be the cause of your sudden increase?

Thanks!

Rick (31) UC 1991/Colon cancer and colectomy with J pouch 2005/PSC

2005 at stage 1

>

> Rick,

> You're right, your doctor is jumping on the worst case scenario -

and

> is testing to see if it is CCA and move you toward treatment as fast

> as possible. All of which I would want if I had CCA. If CCA is ruled

> out, and hopefully it will be, the other causes of an increased

> bilirubin are much less critical. Stones can pass, strictures can be

> stented or ballooned, urso can help prevent stones.

>

> Hang in there and let us know how your tests go. Your doctor is

> probably thinking he would rather give you good news if the tests

are

> negative than to let you think it is nothing and hit you with CCA if

> the tests are positive. I think it is better to realize nothing is

> known for sure, even with testing. But early on you can't assume

anything.

>

> Tim R, ltx 4/4/98, 6/18/07 & 7/7/07

>

Stay up to date on your PC, the Web, and your mobile phone with Windows Live. See Now

[Guest guest]

Rick,

About three years ago I started to suffer

from nausea and pain under my ribs. LFT tests showed I had a sudden rise in

bilirubin (1.7), together with an increase in CA19-9 (157). My doctors started

testing and found that my common bile duct (CBD) was almost completely closed.

They put in a stent and everything went back to normal within a few days. As a

precaution my gall bladder was removed (it had sludge in it and they did not

want to risk the sludge blocking my CBD), my stent was replaced once after a

few months and was later removed. I was put on UDCA and ADEK vitamins. I have

been asymptomatic since.

I hope that something like this explains

your symptoms too. The ERCP you need for placing the stent is not fun, but it

sure beats being diagnosed with CCA.

Don't panic yet.

Regards,

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of rick.kamp

Sent: Thursday, September 18, 2008

04:07

To:

Subject: Re: New

here with new problems - feedback PLEASE!

Tim, thank you for the quick reply. I can see that

you've had a

significant amount of liver experience so I really appreciate your

feedback. This time that is " in limbo " waiting to get some kind of

an idea for the sudden rise in bilirubin is difficult because I want

to know critical information right away or else I worry about it too

much like I am right now.

Is it reasonable to assume that a sudden rise from normal bili at .6

to just a touch abnormal at 1.5 over a 6 month period to be

suspecting CCA as the cause? That just blows me away because it

seems like everything had been going so well. I would have thought

it is more likely to assume a stone or stricturing, etc.

Has anyone else had sudden rises in bilirubin from normal to abnormal

like this - or have you all been slowly progressive? If so, what was

determined to be the cause of your sudden increase?

Thanks!

Rick (31) UC 1991/Colon cancer and colectomy with J pouch 2005/PSC

2005 at stage 1

>

> Rick,

> You're right, your doctor is jumping on the worst case scenario -

and

> is testing to see if it is CCA and move you toward treatment as fast

> as possible. All of which I would want if I had CCA. If CCA is ruled

> out, and hopefully it will be, the other causes of an increased

> bilirubin are much less critical. Stones can pass, strictures can be

> stented or ballooned, urso can help prevent stones.

>

> Hang in there and let us know how your tests go. Your doctor is

> probably thinking he would rather give you good news if the tests

are

> negative than to let you think it is nothing and hit you with CCA if

> the tests are positive. I think it is better to realize nothing is

> known for sure, even with testing. But early on you can't assume

anything.

>

> Tim R, ltx 4/4/98, 6/18/07 & 7/7/07

>

[Guest guest]

Rick,

About three years ago I started to suffer

from nausea and pain under my ribs. LFT tests showed I had a sudden rise in

bilirubin (1.7), together with an increase in CA19-9 (157). My doctors started

testing and found that my common bile duct (CBD) was almost completely closed.

They put in a stent and everything went back to normal within a few days. As a

precaution my gall bladder was removed (it had sludge in it and they did not

want to risk the sludge blocking my CBD), my stent was replaced once after a

few months and was later removed. I was put on UDCA and ADEK vitamins. I have

been asymptomatic since.

I hope that something like this explains

your symptoms too. The ERCP you need for placing the stent is not fun, but it

sure beats being diagnosed with CCA.

Don't panic yet.

Regards,

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of rick.kamp

Sent: Thursday, September 18, 2008

04:07

To:

Subject: Re: New

here with new problems - feedback PLEASE!

Tim, thank you for the quick reply. I can see that

you've had a

significant amount of liver experience so I really appreciate your

feedback. This time that is " in limbo " waiting to get some kind of

an idea for the sudden rise in bilirubin is difficult because I want

to know critical information right away or else I worry about it too

much like I am right now.

Is it reasonable to assume that a sudden rise from normal bili at .6

to just a touch abnormal at 1.5 over a 6 month period to be

suspecting CCA as the cause? That just blows me away because it

seems like everything had been going so well. I would have thought

it is more likely to assume a stone or stricturing, etc.

Has anyone else had sudden rises in bilirubin from normal to abnormal

like this - or have you all been slowly progressive? If so, what was

determined to be the cause of your sudden increase?

Thanks!

Rick (31) UC 1991/Colon cancer and colectomy with J pouch 2005/PSC

2005 at stage 1

>

> Rick,

> You're right, your doctor is jumping on the worst case scenario -

and

> is testing to see if it is CCA and move you toward treatment as fast

> as possible. All of which I would want if I had CCA. If CCA is ruled

> out, and hopefully it will be, the other causes of an increased

> bilirubin are much less critical. Stones can pass, strictures can be

> stented or ballooned, urso can help prevent stones.

>

> Hang in there and let us know how your tests go. Your doctor is

> probably thinking he would rather give you good news if the tests

are

> negative than to let you think it is nothing and hit you with CCA if

> the tests are positive. I think it is better to realize nothing is

> known for sure, even with testing. But early on you can't assume

anything.

>

> Tim R, ltx 4/4/98, 6/18/07 & 7/7/07

>

[Guest guest]

Rick,

About three years ago I started to suffer

from nausea and pain under my ribs. LFT tests showed I had a sudden rise in

bilirubin (1.7), together with an increase in CA19-9 (157). My doctors started

testing and found that my common bile duct (CBD) was almost completely closed.

They put in a stent and everything went back to normal within a few days. As a

precaution my gall bladder was removed (it had sludge in it and they did not

want to risk the sludge blocking my CBD), my stent was replaced once after a

few months and was later removed. I was put on UDCA and ADEK vitamins. I have

been asymptomatic since.

I hope that something like this explains

your symptoms too. The ERCP you need for placing the stent is not fun, but it

sure beats being diagnosed with CCA.

Don't panic yet.

Regards,

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of rick.kamp

Sent: Thursday, September 18, 2008

04:07

To:

Subject: Re: New

here with new problems - feedback PLEASE!

Tim, thank you for the quick reply. I can see that

you've had a

significant amount of liver experience so I really appreciate your

feedback. This time that is " in limbo " waiting to get some kind of

an idea for the sudden rise in bilirubin is difficult because I want

to know critical information right away or else I worry about it too

much like I am right now.

Is it reasonable to assume that a sudden rise from normal bili at .6

to just a touch abnormal at 1.5 over a 6 month period to be

suspecting CCA as the cause? That just blows me away because it

seems like everything had been going so well. I would have thought

it is more likely to assume a stone or stricturing, etc.

Has anyone else had sudden rises in bilirubin from normal to abnormal

like this - or have you all been slowly progressive? If so, what was

determined to be the cause of your sudden increase?

Thanks!

Rick (31) UC 1991/Colon cancer and colectomy with J pouch 2005/PSC

2005 at stage 1

>

> Rick,

> You're right, your doctor is jumping on the worst case scenario -

and

> is testing to see if it is CCA and move you toward treatment as fast

> as possible. All of which I would want if I had CCA. If CCA is ruled

> out, and hopefully it will be, the other causes of an increased

> bilirubin are much less critical. Stones can pass, strictures can be

> stented or ballooned, urso can help prevent stones.

>

> Hang in there and let us know how your tests go. Your doctor is

> probably thinking he would rather give you good news if the tests

are

> negative than to let you think it is nothing and hit you with CCA if

> the tests are positive. I think it is better to realize nothing is

> known for sure, even with testing. But early on you can't assume

anything.

>

> Tim R, ltx 4/4/98, 6/18/07 & 7/7/07

>

[Guest guest]

I think the thing to remember here is that PSC itself can cause

bilirubin to rise, as can many of it's complications (bacterial

cholangitis, gallstones etc). Over the course of my PSC, my bilirubin

jumped up quickly a number of times (including one jump of 3.5 to 11.7

in one month) and it never was CCA. A few times it was cholangitis, but

usually it was just the normal course of PSC. So it's probably good

that the doctor is checking for CCA, but that's not the most likely

thing for it to be.

athan

[Guest guest]

Update:

I had my ultrasound this AM and the radiologist had a quick look at

films and said that nothing looked out of the ordinary, but that he'll

finish his report today. I guess this was encouraging that nothing was

standing out as a problem at first glance. I'll have full results back

probably by Friday afternoon. Then again, I am wondering how effective

that ultrasound is at evaluating the bile ducts and cancer diagnosis?

I'm glad I got that piece of news because I've been overly concerned

about this. I am fearing the worst and it is getting the better of

me! I wish I could either relax, or have this fluctuation explained

rather quickly!

Thank you all for your comments so far. I feel that my PSC is still

early stage so I'm not concerned about liver failure yet - it is just

that possible CCA diagnosis.

Rick

[Guest guest]

Rick,

I am happy to hear that there is not obviously something wrong, but

ultrasound is not the best tool to diagnose CCA (or PSC for that

matter). Please keep us up to date when you hear something new.

Regards,

Chaim Boermeester, Israel

[Guest guest]

Count me as another person whose doctor was SURE she had CCA, but I

did not. Samples of " it " were taken and cultured and I was diagnosed

with fungal blockages due to high dose sulfa used to quell an

infection from an ERCP. This leads me to prompt anyone having an

invasive procedure to ask for cultures of bile to determine what's

growing in case you need an antibiotic. Getting the right antibiotic

can help you feel better fast.

Penny

>

>

> I'm getting a little bit concerned about this since my PSC was

> completely asymptomatic until now and we're immediately thinking that

> we've reached worst case scenario of CCA!!!! I've put up with so

> much with 14 years of UC, colon cancer, and subsequent J pouch - I

> don't know how much more I can take with the PSC and CCA!

>

>

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> Rick

>