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Re: Elevated CA-19-9 - should I have Dr. go on fishing expedition?

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I don't think it would be a waste of time. It is HARD to detect early,

but that doesn't mean it can't be done. Dr Gores' reviews recommend

MRCP, and specifically alert the radiologist to the possibility of

CCA. ERCP brushings or biopsies are another way to detect it. Mayo's

lab will do their own special histology tests on the ERCP biopsies.

However, getting the cells to them in the condition they need will

take careful coordination with your doctor. Or you can go to Dr Gores,

if you can swing it. Nichole and just did this, but we haven't

heard the results. I attempted it once but there wasn't enough tissue

for Mayo's specialised tests, only conventional histology.

I will post some review articles on PSC and CCA in the files section

if I may. I'll start a new folder if there isn't one on CCA already.

Martha (MA)

However, after reading the articles that Barb

> posted, it sounds as though CC can't be caught early. Would it be a

waste of

> time to actively look for CC?

>

> If I should have the doctor look for CC, which tests should be done?

ERCP?

> MRI? Ultrasound? CT scan?

>

> Thanks for any help or advice.

> -Marie

>

> _________________________________________________________________

> The average US Credit Score is 675. The cost to see yours: $0 by

Experian.

>

http://www.freecreditreport.com/pm/default.aspx?sc=660600 & bcd=EMAILFOOTERAVERAGE

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I SHOULD also have said that elevated CA19-9 is no reason to panic.

CA19-9 levels present a particular problem in PSC because inflammation

alone CAN raise CA19-9 levels. But because the risk of CCA in PCS is

0.5-1%/year, I personally would try to distinguish between the two.

CA19-9 over 100 (or in other papers, over 129) is considered highly

suspicious, however.

Also, for others reading this, CA19-9 testing in useless for those

who are in the 7% of the population who do not have the genetic

capacity to produce a related red blood cell antigen called

antigen (type A or B). This can be determined by a test called Red

Blood Cell Phenotype. If you are negative for LeA or LeB, whether you

have CCA or not, CA19-9 will never be elevated.

Martha (MA)

> However, after reading the articles that Barb

> > posted, it sounds as though CC can't be caught early. Would it be a

> waste of

> > time to actively look for CC?

> >

> > If I should have the doctor look for CC, which tests should be done?

> ERCP?

> > MRI? Ultrasound? CT scan?

> >

> > Thanks for any help or advice.

> > -Marie

> >

> > _________________________________________________________________

> > The average US Credit Score is 675. The cost to see yours: $0 by

> Experian.

> >

>

http://www.freecreditreport.com/pm/default.aspx?sc=660600 & bcd=EMAILFOOTERAVERAGE

> >

>

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Marie,

I had CC and it was detected only through a biopsy

during surgery. I never had elevated CA-19-9 and my

ERCP brushings always came back negative for CC. It

just so happened that the stent they put in my bile

duct kept getting clogged and that is why I went to

the Mayo.

I don't think that the CA-19-9 test is all that great

in diagnosing CC. If you are being followed by an

experienced PSC doctor they will be looking for CC,

and just like any other cancer if it is caught early

enough it can be treated.

Liz in Fredericksburg, VA

__________________________________________________

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