RE: Questions about CA 19-9

February 27, 2007

Noah’s

CA 19-9 was elevated as well and his doctor said that he was going to write it

off to UC. I don’t know

how/why. Noah’s was in the

40s I think…I will have to look.

This might have something to do with Noah’s

age. I would think they would be wanting to do an ERCP and take brushings or samples from

the bile ducts to check for cholangiocarcinoma.

I don’t know everything though…I

am pulling this from the top of my head.

Good luck…

February 27, 2007

My CA 19-9 has gotten as high as the 300's but looking back at my labs the highs are always when I need to have the ducts dilated with an ERCP. The last time I had the test done it was in the mid 30's. The doc does brushings and usually orders a CT scan also. Although 39 is above normal I don't think I would be too alarmed about it. Sounds like the doctor's office is on top of it. When was his last scope? I don't like having them and try not to but when I get infections in close succession the doc usually orders 2 ERCP's done close together (4-6 weeks apart) to dilate the ducts. There is always the factor at least for me of being properly hydrated and if I'm not my lab values are skewed. Hope this helps. Blessings, Barby - KS

February 27, 2007

I think the reference range may be different for kids or at different

labs ?? My son had his CA19-9 tested a few years ago and if I remember

correctly his was @ 45 and we were told that was in normal range ???

I hope everything is ok and that the test results are not indicative

of a problem.

Lori

>

> I know I haven't posted in a while. I have been very busy working

> full time and going to school full time but I have a question and I

> don't have time to research it.

>

> The doctor's office just called and had an increase in his CA

> 19-9 from 17 last year to 39 this year and when I asked the normal

> range they said 0 to 37. They are scheduling him for a CT scan.

>

> Question 1) How bad is this news?

> Question 2) How good is a CT scan at finding adenocarcinoma in PSC

> patients?

> Question 3) What else should we do to ensure he is getting the best

> evaluation for this lab result?

>

> Thank you for your help.

>

> Kind Regards,

>

> Nichole Rowland

> wife of PSC & UC 07/2004

> neice of Gwen PSC & Chron's died in 2004 with liver failure

>

February 27, 2007

Well,

maybe it is different for different labs too.

I notice a big difference between different labs.

wildwildtrips

I think the reference range may be different for kids or at

different

labs ?? My son had his CA19-9 tested a few years ago

and if I remember

correctly his was @ 45 and we were told that was in normal range ???

I hope everything is ok and that the test results are not indicative

of a problem.

March 2, 2007

Hi Nichole,

From what my doctors have said regarding elevated CA19-9, PSC

presents a special problem in evaluating levels because inflammation

such as from cholangitis or from intrahepatic stones does increase it.

CA19-9 over 100 nevertheless should set off alarms, but it's good

' doctor is investigating before it gets so high.

The bottom line is that none of the imaging tests detect the majority

of CCAs. I wouldn't rest if the CT is negative. My Gastro uses an

annual MRCP to look for cholangiocarcinoma. On the order form, or

before that scan is done, make sure they specify surveillance for

cholangiocarcinoma.

If there is anything suspicious on either CT or MRCP, then an ERCP can

be done to get biopsies and/or brushings from the bile ducts. Mayo has

a program to do special histology studies that no one else does,

beyond the conventional histology. We tried to send them samples from

Boston, but there wasn't enough tissue to do the study with.

Below is part of a recent review by Dr Gores, who is at Mayo and is

one of the foremost researchers in the field and has a successful

program to treat and transplant patients with early CCA. I can email

you the whole review if you like.

Mahli and Gores, Journal of Hepatology 45 (2006) 856–867

About Imaging for CCA:

Magnetic resonance imaging (MRI) with concurrent

magnetic resonance cholangiopancreatography

(MRCP) is the radiologic modality of choice (Fig. 4)

[44–46]. It allows visualization of the location and extent

of biliary disease as well as hepatic parenchyma. Cholangiocarcinomas

appear hypointense on T1-weighted

images and hyperintense on T2-weighted images. Image

enhancement can be observed using superparamagnetic

iron and delayed gadolinium images [47,48]. MR

angiography can be performed to assess vascular encasement

[49]. Hepatic parenchyma, intrahepatic tumors,

biliary dilatation, and lymph nodes can also be assessed

via computed tomography (CT). CT angiography allows

excellent visualization of the vasculature [50]. Ultrasound

is non-specific; it may identify intrahepatic mass

lesions, and bile duct dilatation proximal to the

obstructing lesion. Endoscopic ultrasound guided

regional lymph node sampling can be performed in early

disease to assess respectability or eligibility for transplantation

[51]. However, endoscopic aspiration of hilar

masses is not recommended because of the potential for

tumor seeding.

Summary:

Cancer should be carefully sought and confirmed or excluded in

patients with high grade strictures, elevated CA 19-9 and

suspicious masses. Though histologic diagnosis is the

gold standard, percutaneous or trans-luminal approach

is not recommended because of the risk of tumor seeding.

Ideally, biliary tissue should be obtained by ERCP.

Non-diagnostic biopsy or cytology should not exclude

the diagnosis of cholangiocarcinoma. Screening biliary

instrumentation in stable, asymptomatic PSC patients

is not recommended due to the concurrent risk of pancreatitis

(>7% in patients with PSC, Dr. K. Lindor, personal

communication), however, when clinically

indicated advanced testing should be utilized to

diagnose early cancers in PSC patients. Asymptomatic

high risk patients may be surveyed non-invasively, such

as with a serum CA 19-9 value and MRCP annually

to achieve early cancer detection, although there are

no outcome studies or cost-effectiveness information to

advocate this approach.

Martha (MA)

> The doctor's office just called and had an increase in his CA

> 19-9 from 17 last year to 39 this year and when I asked the normal

> range they said 0 to 37. They are scheduling him for a CT scan.

>

> Question 1) How bad is this news?

> Question 2) How good is a CT scan at finding adenocarcinoma in PSC

> patients?

> Question 3) What else should we do to ensure he is getting the best

> evaluation for this lab result?

>

March 5, 2007

According to the test results my husband had, normal for the CA19-9 is less than 55. Unfortunately my husbands levels were over 18,000 meaning he has a 90% chance of having cancer even though all the biopsies they have done so far have been negative. And in view of that news today he is no longer eligible for a liver transplant. Tomorrow we go home from the hospital to get life in order. in PA husband Mark with PSC since 1994, UC since 1975

Need a quick answer? Get one in minutes from people who know. Ask your question on

Yahoo! Answers.

March 5, 2007

I would love to have a copy of the article. My e-mail is nichole _

rowland @ yahoo . com (without all the spaces). Thank you.

>

> Below is part of a recent review by Dr Gores, who is at Mayo and is

> one of the foremost researchers in the field and has a successful

> program to treat and transplant patients with early CCA. I can email

> you the whole review if you like.

> Mahli and Gores, Journal of Hepatology 45 (2006) 856–867

March 5, 2007

Hettinger wrote:

>

> Tomorrow we go home from the hospital to get life in order.

>

Such a brief and simple sentence for such a mammoth task. You will be

in my prayers. God's peace and strength be with you.

Sending you a hug,

Carolyn B. in SC

March 6, 2007

Dear

,

I am so sorry to read your post and that

your husband is no longer eligible for transplant. Which hospital are you

at in PA? How can it be that they will no longer list him for transplant

if they haven’t proved he actually has cancer? That just is NOT

fair. Please don’t give up hope…if you can get him into the Mayo

Clinic in Rochester, MN or try another transplant center. Some centers

are pickier than others. I know when my son had his transplant there were

many other transplant patients there that had come a long way because they were

turned down at their local center. So please don’t give up

hope. Hang in there.

Together in the fight…Whatever it

takes!

Joanne (mom of Todd, 20, psc 01, Crohns 02,

tx twice 03, recurrent psc 05, type 1 diabetes 06, scheduled for a liver biopsy

in a couple of weeks but living life to the fullest 07)

Unfortunately my husbands levels were over 18,000

meaning he has a 90% chance of having cancer even though all the biopsies they

have done so far have been negative. And in view of that news today he is

no longer eligible for a liver transplant.

Tomorrow we go home from the hospital to get life in

order.

in PA

husband Mark with PSC since 1994, UC since 1975

..

March 6, 2007

Thank you everyone for your prayers. It has been a rough few months.

Get your own web address. Have a HUGE year through Yahoo! Small Business.

March 6, 2007

This is pretty disturbing to me, especially since my husband just

took a CA19-9 test at my urging. My understanding was that it is

NOT diagnostic of cholangiocarcinoma, and my thought on pressuring

my husband to do this was to get an idea of where his tests are -

and I was assuming they'd be elevated, because I thought they become

elevated regardless of the presence of cholangiocarcinoma in PSC -

and then keeping track of them so that if we see any unexplained

spikes at some point hopefully far, far down the line we can go in

for another MRCP or do some brushings or something. This makes me

think this was a very bad idea. Has anyone else heard of someone

getting booted off the transplant list for a raised CA19-9 result?

Thanks,

Nina

>

> According to the test results my husband had, normal for the CA19-

9 is less than 55.

>

> Unfortunately my husbands levels were over 18,000 meaning he has

a 90% chance of having cancer even though all the biopsies they have

done so far have been negative. And in view of that news today he

is no longer eligible for a liver transplant.

>

> Tomorrow we go home from the hospital to get life in order.

>

> in PA

> husband Mark with PSC since 1994, UC since 1975

>

> ---------------------------------

> Need a quick answer? Get one in minutes from people who know. Ask

your question on Yahoo! Answers.

>

March 6, 2007

Nina,

I also had elevated CA19-9 before my last

ERCP. It was reason for some concern, but I was told right away that blocked

bile ducts do also elevate the CA19-9. Having said that, the highest CA19-9 I

ever had was 117, not 18.000. My understanding is that CA19-9 is a marker for

cholangiocarcinoma, but that it is not a perfect indicator. CA19-9 may be

elevated without cholangiocarcinoma, and I understand it can be normal with

cholangiocarcinoma.

Regards,

Chaim Boermeester, Israel.

From:

[mailto: ] On

Behalf Of nlr_psc

Sent: Tuesday, March 06, 2007 4:05

PM

To:

Subject: Re:

Questions about CA 19-9

This is pretty disturbing to me, especially since my

husband just