Re: CA19-9 level - Martha

[Guest guest]

I have been dealing mainly with my GI since dx of this disease in 1998...I am probably his only PSC patient...basically I go to him for my UC and get liver function blood tests every 3 or 4 months (although I have to admit I sometimes stretch it to 6-9 months)...after 1st ERCP in 1998 never any elevated numbers until now. I know I really should find a hepatologist but since the PSC seemed asymptomatic all this time I never bothered to do it. Of course, now with this I was thinking, NOW I need to do it. Plus I have been on URSO all this time and it does not seem anything else really needed to be done since I did not have any problems.

The ERCP doc is a different doctor than my GI. Last time he did the ERCP and I had to go to his office after, it was at Long Island Jewish Hospital (Lake Success/New Hyde Park NY) in the oncology wing/building. Now his office is in North Shore University Hospital in Manhasset, Gastro floor. So I assume he is also a GI...sad I do not know right now. I am DEFINATELY going to ask him how many PSC patients he has treated (in the past and currently.)

I was also thinking about getting a consult with Dr. Palmer (also on Long Island NY)...only because I had seen her speak at a liver disease forum at CW Post and plus I have her liver disease book....any thoughts on her as a doc anyone?

I live in Queens NY between Mnahattan and Long Island so I can go either way for a good hepatologist...any suggestions?

THANKS for the info!!!!!!!!!!

Dawn

[Guest guest]

Your ERCP doc would be a GI. He probably sees a number of PSC

patients, seeing how often we get ERCPs. My GI is an ERCP specialist-

I dropped off 25 PSC pamphlets and he immediately wanted to know how

to get more (Answer: Barb!). I sacked my other GIs because I didn't

want a middleman. Several of my previous GIs didn't do enough

surveillance for cancer, like MRCPs and CA19-9. I wanted someone who

knew the risks. Then I dropped the ball, and didn't get an MRCP for

2.5 years, and now I'm sorry because I have a stricture he can't get

through, and my left lobe is out of action.

Moral of story: asymptomatic life made me complacent; now I regret it.

Martha

UC, 1979, PSC 1992

>

>

> I have been dealing mainly with my GI since dx of this disease in

1998...I

> am probably his only PSC patient...basically I go to him for my UC

and get

> liver function blood tests every 3 or 4 months (although I have to

admit I

> sometimes stretch it to 6-9 months)...after 1st ERCP in 1998 never

any elevated

> numbers until now. I know I really should find a hepatologist but

since the PSC

> seemed asymptomatic all this time I never bothered to do it. Of

course,

> now with this I was thinking, NOW I need to do it. Plus I have

been on URSO

> all this time and it does not seem anything else really needed to

be done since

> I did not have any problems.

>

> The ERCP doc is a different doctor than my GI. Last time he did the

ERCP

> and I had to go to his office after, it was at Long Island Jewish

Hospital

> (Lake Success/New Hyde Park NY) in the oncology wing/building. Now

his office is

> in North Shore University Hospital in Manhasset, Gastro floor. So

I assume

> he is also a GI...sad I do not know right now. I am DEFINATELY

going to ask

> him how many PSC patients he has treated (in the past and currently.)

>

> I was also thinking about getting a consult with Dr. Palmer

(also on

> Long Island NY)...only because I had seen her speak at a liver

disease forum

> at CW Post and plus I have her liver disease book....any thoughts on

her as a

> doc anyone?

>

> I live in Queens NY between Mnahattan and Long Island so I can go

either way

> for a good hepatologist...any suggestions?

>

> THANKS for the info!!!!!!!!!!

> Dawn

>