Re: High lifetime risk of cancer in PSC

[Guest guest]

Barb,

This is an interesting study. The 10 and 20 year risks for

CCA are lower than most other studies I have seen. Several encouraging

facts are that the risk is only 7% when excluding all patients who develop CCA

within 6 months of diagnosis – suggesting it was present at the onset of

the study. It was also encouraging that there is no difference in

the 10 year and 20 year risks, suggesting that CCA develops early in the course

of the disease. Although there are many factors here, and many participants

reached endpoints, it is still an encouraging study.

Thank you for posting it!

Rick

From:

[mailto: ] On Behalf

Of Barb Henshaw

Sent: Thursday, January 22, 2009 12:11 PM

To:

Subject: High lifetime risk of cancer in PSC

Two

hundred and eleven patients were included, 143 (68%) were male and 126 (60%)

had inflammatory bowel disease (IBD). Median transplantation-free survival was

14 years. The risk of CCA after 10 and 20 years was 9% and 9%, respectively. In

patients with concomitant IBD the 10-year and 20-year risks for CRC were 14%

and 31%, which was significantly higher than for patients without IBD (2% and

2% (P = 0.008)). CCA, cholangitis,

and age at entry were independent risk factors for the combined endpoint death

or liver transplantation. Risk factors for the endpoint death were CCA, CRC,

age, and symptomatic presentation.

http://www.sciencedirect.com/science?_ob=ArticleURL & _udi=B6W7C-4TNTK8H-2 & _user=10 & _coverDate=01%2F31%2F2009 & _rdoc=25 & _fmt=high & _orig=browse & _srch=doc-info(%23toc%236623%232009%23999499998%23761094%23FLA%23display%23Volume) & _cdi=6623 & _sort=d & _docanchor= & _ct=40 & _acct=C000050221 & _version=1 & _urlVersion=0 & _userid=10 & md5=407922a16c95b8853cd06136ebd28ab4

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @

Baylor/Dallas

[Guest guest]

Barb,

This is an interesting study. The 10 and 20 year risks for

CCA are lower than most other studies I have seen. Several encouraging

facts are that the risk is only 7% when excluding all patients who develop CCA

within 6 months of diagnosis – suggesting it was present at the onset of

the study. It was also encouraging that there is no difference in

the 10 year and 20 year risks, suggesting that CCA develops early in the course

of the disease. Although there are many factors here, and many participants

reached endpoints, it is still an encouraging study.

Thank you for posting it!

Rick

From:

[mailto: ] On Behalf

Of Barb Henshaw

Sent: Thursday, January 22, 2009 12:11 PM

To:

Subject: High lifetime risk of cancer in PSC

Two

hundred and eleven patients were included, 143 (68%) were male and 126 (60%)

had inflammatory bowel disease (IBD). Median transplantation-free survival was

14 years. The risk of CCA after 10 and 20 years was 9% and 9%, respectively. In

patients with concomitant IBD the 10-year and 20-year risks for CRC were 14%

and 31%, which was significantly higher than for patients without IBD (2% and

2% (P = 0.008)). CCA, cholangitis,

and age at entry were independent risk factors for the combined endpoint death

or liver transplantation. Risk factors for the endpoint death were CCA, CRC,

age, and symptomatic presentation.

http://www.sciencedirect.com/science?_ob=ArticleURL & _udi=B6W7C-4TNTK8H-2 & _user=10 & _coverDate=01%2F31%2F2009 & _rdoc=25 & _fmt=high & _orig=browse & _srch=doc-info(%23toc%236623%232009%23999499998%23761094%23FLA%23display%23Volume) & _cdi=6623 & _sort=d & _docanchor= & _ct=40 & _acct=C000050221 & _version=1 & _urlVersion=0 & _userid=10 & md5=407922a16c95b8853cd06136ebd28ab4

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @

Baylor/Dallas

[Guest guest]

Barb,

This is an interesting study. The 10 and 20 year risks for

CCA are lower than most other studies I have seen. Several encouraging

facts are that the risk is only 7% when excluding all patients who develop CCA

within 6 months of diagnosis – suggesting it was present at the onset of

the study. It was also encouraging that there is no difference in

the 10 year and 20 year risks, suggesting that CCA develops early in the course

of the disease. Although there are many factors here, and many participants

reached endpoints, it is still an encouraging study.

Thank you for posting it!

Rick

From:

[mailto: ] On Behalf

Of Barb Henshaw

Sent: Thursday, January 22, 2009 12:11 PM

To:

Subject: High lifetime risk of cancer in PSC

Two

hundred and eleven patients were included, 143 (68%) were male and 126 (60%)

had inflammatory bowel disease (IBD). Median transplantation-free survival was

14 years. The risk of CCA after 10 and 20 years was 9% and 9%, respectively. In

patients with concomitant IBD the 10-year and 20-year risks for CRC were 14%

and 31%, which was significantly higher than for patients without IBD (2% and

2% (P = 0.008)). CCA, cholangitis,

and age at entry were independent risk factors for the combined endpoint death

or liver transplantation. Risk factors for the endpoint death were CCA, CRC,

age, and symptomatic presentation.

http://www.sciencedirect.com/science?_ob=ArticleURL & _udi=B6W7C-4TNTK8H-2 & _user=10 & _coverDate=01%2F31%2F2009 & _rdoc=25 & _fmt=high & _orig=browse & _srch=doc-info(%23toc%236623%232009%23999499998%23761094%23FLA%23display%23Volume) & _cdi=6623 & _sort=d & _docanchor= & _ct=40 & _acct=C000050221 & _version=1 & _urlVersion=0 & _userid=10 & md5=407922a16c95b8853cd06136ebd28ab4

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007 @

Baylor/Dallas

[Guest guest]

Barb, I am in Texas as well, near the Austin area. Can you recommend studies and/or specialists that are in the Texas area? LarsonTo: Sent: Thursday, January 22, 2009 11:10:47 AMSubject:

High lifetime risk of cancer in PSC

Two hundred and eleven patients were included, 143

(68%) were male and 126 (60%) had inflammatory bowel disease (IBD). Median

transplantation-free survival was 14 years. The risk of CCA after 10 and 20

years was 9% and 9%, respectively. In patients with concomitant IBD the 10-year

and 20-year risks for CRC were 14% and 31%, which was significantly higher than

for patients without IBD (2% and 2% (P = 0.008)).

CCA, cholangitis, and age at entry were independent

risk factors for the combined endpoint death or liver transplantation. Risk

factors for the endpoint death were CCA, CRC, age, and symptomatic presentation. http://www.sciencedirect.com/science?_ob=ArticleURL & _udi=B6W7C-4TNTK8H-2 & _user=10 & _coverDate=01%2F31%2F2009 & _rdoc=25 & _fmt=high & _orig=browse & _srch=doc-info(%23toc%236623%232009%23999499998%23761094%23FLA%23display%23Volume) & _cdi=6623 & _sort=d & _docanchor= & _ct=40 & _acct=C000050221 & _version=1 & _urlVersion=0 & _userid=10 & md5=407922a16c95b8853cd06136ebd28ab4

Barb in Texas - Together in the Fight - Whatever it

Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007

@ Baylor/Dallas

[Guest guest]

Barb, I am in Texas as well, near the Austin area. Can you recommend studies and/or specialists that are in the Texas area? LarsonTo: Sent: Thursday, January 22, 2009 11:10:47 AMSubject:

High lifetime risk of cancer in PSC

Two hundred and eleven patients were included, 143

(68%) were male and 126 (60%) had inflammatory bowel disease (IBD). Median

transplantation-free survival was 14 years. The risk of CCA after 10 and 20

years was 9% and 9%, respectively. In patients with concomitant IBD the 10-year

and 20-year risks for CRC were 14% and 31%, which was significantly higher than

for patients without IBD (2% and 2% (P = 0.008)).

CCA, cholangitis, and age at entry were independent

risk factors for the combined endpoint death or liver transplantation. Risk

factors for the endpoint death were CCA, CRC, age, and symptomatic presentation. http://www.sciencedirect.com/science?_ob=ArticleURL & _udi=B6W7C-4TNTK8H-2 & _user=10 & _coverDate=01%2F31%2F2009 & _rdoc=25 & _fmt=high & _orig=browse & _srch=doc-info(%23toc%236623%232009%23999499998%23761094%23FLA%23display%23Volume) & _cdi=6623 & _sort=d & _docanchor= & _ct=40 & _acct=C000050221 & _version=1 & _urlVersion=0 & _userid=10 & md5=407922a16c95b8853cd06136ebd28ab4

Barb in Texas - Together in the Fight - Whatever it

Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007

@ Baylor/Dallas

[Guest guest]

Barb, I am in Texas as well, near the Austin area. Can you recommend studies and/or specialists that are in the Texas area? LarsonTo: Sent: Thursday, January 22, 2009 11:10:47 AMSubject:

High lifetime risk of cancer in PSC

Two hundred and eleven patients were included, 143

(68%) were male and 126 (60%) had inflammatory bowel disease (IBD). Median

transplantation-free survival was 14 years. The risk of CCA after 10 and 20

years was 9% and 9%, respectively. In patients with concomitant IBD the 10-year

and 20-year risks for CRC were 14% and 31%, which was significantly higher than

for patients without IBD (2% and 2% (P = 0.008)).

CCA, cholangitis, and age at entry were independent

risk factors for the combined endpoint death or liver transplantation. Risk

factors for the endpoint death were CCA, CRC, age, and symptomatic presentation. http://www.sciencedirect.com/science?_ob=ArticleURL & _udi=B6W7C-4TNTK8H-2 & _user=10 & _coverDate=01%2F31%2F2009 & _rdoc=25 & _fmt=high & _orig=browse & _srch=doc-info(%23toc%236623%232009%23999499998%23761094%23FLA%23display%23Volume) & _cdi=6623 & _sort=d & _docanchor= & _ct=40 & _acct=C000050221 & _version=1 & _urlVersion=0 & _userid=10 & md5=407922a16c95b8853cd06136ebd28ab4

Barb in Texas - Together in the Fight - Whatever it

Takes! Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007

@ Baylor/Dallas

[Guest guest]

Thanks. I have learned to read this (as a PSCer with CD) that in 20

years, I have a 70-85% chance of being cancer free.

>

> Two hundred and eleven patients were included, 143 (68%) were male and

>

[Guest guest]

Thanks. I have learned to read this (as a PSCer with CD) that in 20

years, I have a 70-85% chance of being cancer free.

>

> Two hundred and eleven patients were included, 143 (68%) were male and

>

[Guest guest]

Also, is it that the risk is lower with Crohn's vs UC, or just that

more study participants have UC than CD?

> >

> > Two hundred and eleven patients were included, 143 (68%) were male and

> >

>

[Guest guest]

Also, is it that the risk is lower with Crohn's vs UC, or just that

more study participants have UC than CD?

> >

> > Two hundred and eleven patients were included, 143 (68%) were male and

> >

>

[Guest guest]

Also, is it that the risk is lower with Crohn's vs UC, or just that

more study participants have UC than CD?

> >

> > Two hundred and eleven patients were included, 143 (68%) were male and

> >

>

[Guest guest]

Check with Baylor. They’ve got the best liver programs in our

area.

From:

[mailto: ] On Behalf Of Larson

Sent: Thursday, January 22, 2009 2:07 PM

To:

Subject: Re: High lifetime risk of cancer in PSC

Barb, I am in Texas as well,

near the Austin area. Can you recommend studies and/or specialists that

are in the Texas area?

Larson

[Guest guest]

Check with Baylor. They’ve got the best liver programs in our

area.

From:

[mailto: ] On Behalf Of Larson

Sent: Thursday, January 22, 2009 2:07 PM

To:

Subject: Re: High lifetime risk of cancer in PSC

Barb, I am in Texas as well,

near the Austin area. Can you recommend studies and/or specialists that

are in the Texas area?

Larson

[Guest guest]

Check with Baylor. They’ve got the best liver programs in our

area.

From:

[mailto: ] On Behalf Of Larson

Sent: Thursday, January 22, 2009 2:07 PM

To:

Subject: Re: High lifetime risk of cancer in PSC

Barb, I am in Texas as well,

near the Austin area. Can you recommend studies and/or specialists that

are in the Texas area?

Larson

[Guest guest]

What I notice in this study:

·

9% risk of CCA at 10 and 20 years goes against what

has been said in the past; as in the longer you have PSC, the greater the

risk of CCA (yea!).

·

CRC much more likely than CCA (annual

colonoscopies imperative, especially if you have IBD at diagnosis!)

·

CRC = reduced survival

·

Median transplantation-free = 14 years (we’ve

usually heard 10).

·

Nearly all CCAs presented within the first

three years after PSC. This is consistent with last year’s PSC conference

– they’re much more worried about CCA just after diagnosis.

·

“IBD in PSC patients is characterized by a high

prevalence of pancolitis with rectal sparing, a mild and sometimes asymptomatic

course and a lower colectomy rate.”

·

I’m afraid I don’t understand the risk factor of

age. Older age at diagnosis = greater risk?

Interesting information!

Arne

UC 1977, PSC 2000

Alive and well in Minnesota

[Guest guest]

What I notice in this study:

·

9% risk of CCA at 10 and 20 years goes against what

has been said in the past; as in the longer you have PSC, the greater the

risk of CCA (yea!).

·

CRC much more likely than CCA (annual

colonoscopies imperative, especially if you have IBD at diagnosis!)

·

CRC = reduced survival

·

Median transplantation-free = 14 years (we’ve

usually heard 10).

·

Nearly all CCAs presented within the first

three years after PSC. This is consistent with last year’s PSC conference

– they’re much more worried about CCA just after diagnosis.

·

“IBD in PSC patients is characterized by a high

prevalence of pancolitis with rectal sparing, a mild and sometimes asymptomatic

course and a lower colectomy rate.”

·

I’m afraid I don’t understand the risk factor of

age. Older age at diagnosis = greater risk?

Interesting information!

Arne

UC 1977, PSC 2000

Alive and well in Minnesota

[Guest guest]

What I notice in this study:

·

9% risk of CCA at 10 and 20 years goes against what

has been said in the past; as in the longer you have PSC, the greater the

risk of CCA (yea!).

·

CRC much more likely than CCA (annual

colonoscopies imperative, especially if you have IBD at diagnosis!)

·

CRC = reduced survival

·

Median transplantation-free = 14 years (we’ve

usually heard 10).

·

Nearly all CCAs presented within the first

three years after PSC. This is consistent with last year’s PSC conference

– they’re much more worried about CCA just after diagnosis.

·

“IBD in PSC patients is characterized by a high

prevalence of pancolitis with rectal sparing, a mild and sometimes asymptomatic

course and a lower colectomy rate.”

·

I’m afraid I don’t understand the risk factor of

age. Older age at diagnosis = greater risk?

Interesting information!

Arne

UC 1977, PSC 2000

Alive and well in Minnesota

[Guest guest]

Median transplantation-free = 14 years (we’ve

usually heard 10).This sounds great, but there's no new treatment for PSC that I'm aware of. So the longer time of being transplant free (or death free) can probably be attributed to people being diagnosed earlier in the course of the disease. Which means you've got to live with the anxiety of this disease for a longer time.What is nice is that more research is showing that the risk for CCA might go down the longer you have PSC (since the greatest risk is when you are newly diagnosed). Marie

To: From: stonehollowmn@...Date: Thu, 22 Jan 2009 18:45:23 -0600Subject: RE: High lifetime risk of cancer in PSC

What I notice in this study:

·

9% risk of CCA at 10 and 20 years goes against what

has been said in the past; as in the longer you have PSC, the greater the

risk of CCA (yea!).

·

CRC much more likely than CCA (annual

colonoscopies imperative, especially if you have IBD at diagnosis!)

·

CRC = reduced survival

·

Median transplantation-free = 14 years (we’ve

usually heard 10).

·

Nearly all CCAs presented within the first

three years after PSC. This is consistent with last year’s PSC conference

– they’re much more worried about CCA just after diagnosis.

·

“IBD in PSC patients is characterized by a high

prevalence of pancolitis with rectal sparing, a mild and sometimes asymptomatic

course and a lower colectomy rate.”

·

I’m afraid I don’t understand the risk factor of

age. Older age at diagnosis = greater risk?

Interesting information!

Arne

UC 1977, PSC 2000

Alive and well in Minnesota

Windows Live™: E-mail. Chat. Share. Get more ways to connect. See how it works.

[Guest guest]

Median transplantation-free = 14 years (we’ve

usually heard 10).This sounds great, but there's no new treatment for PSC that I'm aware of. So the longer time of being transplant free (or death free) can probably be attributed to people being diagnosed earlier in the course of the disease. Which means you've got to live with the anxiety of this disease for a longer time.What is nice is that more research is showing that the risk for CCA might go down the longer you have PSC (since the greatest risk is when you are newly diagnosed). Marie

To: From: stonehollowmn@...Date: Thu, 22 Jan 2009 18:45:23 -0600Subject: RE: High lifetime risk of cancer in PSC

What I notice in this study:

·

9% risk of CCA at 10 and 20 years goes against what

has been said in the past; as in the longer you have PSC, the greater the

risk of CCA (yea!).

·

CRC much more likely than CCA (annual

colonoscopies imperative, especially if you have IBD at diagnosis!)

·

CRC = reduced survival

·

Median transplantation-free = 14 years (we’ve

usually heard 10).

·

Nearly all CCAs presented within the first

three years after PSC. This is consistent with last year’s PSC conference

– they’re much more worried about CCA just after diagnosis.

·

“IBD in PSC patients is characterized by a high

prevalence of pancolitis with rectal sparing, a mild and sometimes asymptomatic

course and a lower colectomy rate.”

·

I’m afraid I don’t understand the risk factor of

age. Older age at diagnosis = greater risk?

Interesting information!

Arne

UC 1977, PSC 2000

Alive and well in Minnesota

Windows Live™: E-mail. Chat. Share. Get more ways to connect. See how it works.

[Guest guest]

Median transplantation-free = 14 years (we’ve

usually heard 10).This sounds great, but there's no new treatment for PSC that I'm aware of. So the longer time of being transplant free (or death free) can probably be attributed to people being diagnosed earlier in the course of the disease. Which means you've got to live with the anxiety of this disease for a longer time.What is nice is that more research is showing that the risk for CCA might go down the longer you have PSC (since the greatest risk is when you are newly diagnosed). Marie

To: From: stonehollowmn@...Date: Thu, 22 Jan 2009 18:45:23 -0600Subject: RE: High lifetime risk of cancer in PSC

What I notice in this study:

·

9% risk of CCA at 10 and 20 years goes against what

has been said in the past; as in the longer you have PSC, the greater the

risk of CCA (yea!).

·

CRC much more likely than CCA (annual

colonoscopies imperative, especially if you have IBD at diagnosis!)

·

CRC = reduced survival

·

Median transplantation-free = 14 years (we’ve

usually heard 10).

·

Nearly all CCAs presented within the first

three years after PSC. This is consistent with last year’s PSC conference

– they’re much more worried about CCA just after diagnosis.

·

“IBD in PSC patients is characterized by a high

prevalence of pancolitis with rectal sparing, a mild and sometimes asymptomatic

course and a lower colectomy rate.”

·

I’m afraid I don’t understand the risk factor of

age. Older age at diagnosis = greater risk?

Interesting information!

Arne

UC 1977, PSC 2000

Alive and well in Minnesota

Windows Live™: E-mail. Chat. Share. Get more ways to connect. See how it works.

[Guest guest]

San has Methodist Specialty and Transplant Hospital.

http://msth.sahealth.com/

I have been pleased with my 2 visits to the Liver Clinic and they

have a monthly clinic in Corpus.

Susie

>

> Barb, I am in Texas as well, near the Austin area. Can you

recommend studies and/or specialists that are in the Texas area?

>

> Larson

>

>

>

>

>

> ________________________________

>

[Guest guest]

San has Methodist Specialty and Transplant Hospital.

http://msth.sahealth.com/

I have been pleased with my 2 visits to the Liver Clinic and they

have a monthly clinic in Corpus.

Susie

>

> Barb, I am in Texas as well, near the Austin area. Can you

recommend studies and/or specialists that are in the Texas area?

>

> Larson

>

>

>

>

>

> ________________________________

>

[Guest guest]

Hi, What are CCA and CRC?Karla30 yo, IBD 1yr, PSC 3mosTo: Sent: Thursday, January 22, 2009 9:10:47 AMSubject: High lifetime risk of cancer in PSC

T

[Guest guest]

I am sorry to say that they are two types of cancer that we are at

risk for CCA -cholangiocarcinoma and CRC - colorectal carcinoma

Dawn

>

> Hi, What are CCA and CRC?

> Karla

> 30 yo, IBD 1yr, PSC 3mos

>

>

>

>

> ________________________________

> From: Barb Henshaw

> To:

> Sent: Thursday, January 22, 2009 9:10:47 AM

> Subject: High lifetime risk of cancer in PSC

>

>

> T

>