RE: Testing for Cholangiocarcinoma - how often

[Guest guest]

Hi Marie,

Most docs will frequently monitor CA-19 to compare levels over time.

I've had PSC for 22 years and only this year had my first brushings for CCA. My impression has been that the determination to do brushings depends a lot on the severity and location of the strictures. I had/have a dominant sticture in the hilar region which seems to be fairly common area to find CCA.

My first brushings about 3 months ago came back showing trisomy-7...a chromosome abnormality. This does not necessarily mean cancer, but does indicate a risk cancer being found. Luckily, my second round of brushings 8 weeks later (after my stents were removed) did not show any of the abnormalities for which they are screening. They suggested that, barring some severe problems, I could probably wait another 6 months to a year before coming back to see them.

Jeff in FL

Hi all,Can anyone here tell me what the Mayo Clinic standard is for testing for CCA? Is it once a year? Every other year?Thanks.

Marie

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[Guest guest]

Marie,

The Mayo Clinic required an annual CCA testing, in the high dose Urso study. So i am assuming that once a year, is their standard. The same with regard to the CA19-9, testing. That is what i was doing.

If or someone else had it differently, please let us know.

Subject: Testing for Cholangiocarcinoma - how oftenTo: Date: Wednesday, October 8, 2008, 6:15 AM

Hi all,Can anyone here tell me what the Mayo Clinic standard is for testing for CCA? Is it once a year? Every other year?Thanks.

Marie

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[Guest guest]

Thanks Jeff. I appreciate the response. I haven't had brushings done. I have CA-19-9 done, which is slightly elevated. I'm having an abdominal CT done later this month.Marie

To: From: Jeffsullivan@...Date: Wed, 8 Oct 2008 23:17:08 -0400Subject: Re: Testing for Cholangiocarcinoma - how often

Hi Marie,

Most docs will frequently monitor CA-19 to compare levels over time.

I've had PSC for 22 years and only this year had my first brushings for CCA. My impression has been that the determination to do brushings depends a lot on the severity and location of the strictures. I had/have a dominant sticture in the hilar region which seems to be fairly common area to find CCA.

My first brushings about 3 months ago came back showing trisomy-7...a chromosome abnormality. This does not necessarily mean cancer, but does indicate a risk cancer being found. Luckily, my second round of brushings 8 weeks later (after my stents were removed) did not show any of the abnormalities for which they are screening. They suggested that, barring some severe problems, I could probably wait another 6 months to a year before coming back to see them.

Jeff in FL

In a message dated 10/8/2008 2:16:32 A.M. Eastern Daylight Time, marie_nilsson17 (AT) msn (DOT) com writes:

Hi all,Can anyone here tell me what the Mayo Clinic standard is for testing for CCA? Is it once a year? Every other year?Thanks.

Marie

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[Guest guest]

I need to correct my response about the subject. Sorry.

What i meant by the annual CCA, was the CA19-9 testing. Withregard to the brushing, Mayo's, doctor Lindor's answer when i told him that my doctor did not want to brush for cytology, at all because of the fear of bleeding,-----etc., he said it can be done annually, but it is also up to the doctor, himself.

From: Marie Nilsson <marie_nilsson17@ msn.com>Subject: Testing for Cholangiocarcinoma - how oftenTo: @ yahoogroups. comDate: Wednesday, October 8, 2008, 6:15 AM

Hi all,Can anyone here tell me what the Mayo Clinic standard is for testing for CCA? Is it once a year? Every other year?Thanks.

Marie

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[Guest guest]

Hi ,Thanks. I've e-mailed Dr. Gores to see what he says. I'll let you know what his response is, if I get a response.Marie

To: From: frd_sr_dado@...Date: Wed, 8 Oct 2008 21:12:41 -0700Subject: Re: Testing for Cholangiocarcinoma - how often

I need to correct my response about the subject. Sorry.

What i meant by the annual CCA, was the CA19-9 testing. Withregard to the brushing, Mayo's, doctor Lindor's answer when i told him that my doctor did not want to brush for cytology, at all because of the fear of bleeding,-----etc., he said it can be done annually, but it is also up to the doctor, himself.

From: Marie Nilsson <marie_nilsson17@ msn.com>Subject: Testing for Cholangiocarcinoma - how oftenTo: @ yahoogroups. comDate: Wednesday, October 8, 2008, 6:15 AM

Hi all,Can anyone here tell me what the Mayo Clinic standard is for testing for CCA? Is it once a year? Every other year?Thanks.

Marie

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