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Re: Stages??????????

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The doctors determe it throurg tests, Liver Biopsy and perhaps ECRP or MCRP. i've had PSC 19 years and I have never known what stage I am. Ignorence is Bliss (especially when they need to pock you with a needle for knowledge).

Ian. (52) PSC 89

Hello all,Cannot tell you all how much of a life saver this group is before i found you i felt so alone with hardly any knowledge and running low on hope for a future. You have all changed that and I thank you.

However I have noticed that a lot of you know what stage of the disease you are at, I however am completely in the dark. Can anyone give me an idea of how I can work out what stage i'm at? Thanks again

(UK, PSC & UC 2002) -- Ian Cribb P.Eng.

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,

Below is a copy of Mayo's staging system; however, according to my

Dr.making a determination on the stage has a lot of factors and is

not very accurate until you reach stage 4. I have small duct PSC my

last biopsy rated me at stage 1; however, my doctor said I am most

likely at stage 2 or 3. He said the discrepency when it comes to

biopsies, especially with small duct PSC is related to the fact that

if the biopsy was taken from a different location that had more

problems then I would of been scored higher. My Dr. came to this

conclussion because the biopsy reported that I had duct obliteration

and " bead like webbing " throughout both lobes of my liver based on my

last MRCP. He told me that there is often disagreement on the

staging until stage IV when cirrhosis has developed because there is

very little dispute over what it looks like.

My take on this is that staging is not very important and I am where

I am at in this disease process and all I can do is try and help it

not to progress. This disease appears to be very individuallly based

and doesn't appear to me to have " normal " or predictable progression

patterns.

Any way I hope this information is helpful.

Stages of PSC

Stage 1 — Fibrosis or scar tissue limited to a few spots called

portal areas, little areas of " plumbing " or ductwork in the liver

tissue

Stage 2 — Fibrosis begins to appear outside the portal areas. The

strands of fibrosis are not yet connected to each other.

Stage 3 — Areas of fibrosis connecting to each other

Stage 4 — Widespread, honeycomblike scarring known as cirrhosis

http://www.mayoclinic.org/primary-sclerosing-

cholangitis/diagnosis.html

Dawn

Can anyone give me an

> idea of how I can work out what stage i'm at?

> Thanks again

>

> (UK, PSC & UC 2002)

>

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,

Below is a copy of Mayo's staging system; however, according to my

Dr.making a determination on the stage has a lot of factors and is

not very accurate until you reach stage 4. I have small duct PSC my

last biopsy rated me at stage 1; however, my doctor said I am most

likely at stage 2 or 3. He said the discrepency when it comes to

biopsies, especially with small duct PSC is related to the fact that

if the biopsy was taken from a different location that had more

problems then I would of been scored higher. My Dr. came to this

conclussion because the biopsy reported that I had duct obliteration

and " bead like webbing " throughout both lobes of my liver based on my

last MRCP. He told me that there is often disagreement on the

staging until stage IV when cirrhosis has developed because there is

very little dispute over what it looks like.

My take on this is that staging is not very important and I am where

I am at in this disease process and all I can do is try and help it

not to progress. This disease appears to be very individuallly based

and doesn't appear to me to have " normal " or predictable progression

patterns.

Any way I hope this information is helpful.

Stages of PSC

Stage 1 — Fibrosis or scar tissue limited to a few spots called

portal areas, little areas of " plumbing " or ductwork in the liver

tissue

Stage 2 — Fibrosis begins to appear outside the portal areas. The

strands of fibrosis are not yet connected to each other.

Stage 3 — Areas of fibrosis connecting to each other

Stage 4 — Widespread, honeycomblike scarring known as cirrhosis

http://www.mayoclinic.org/primary-sclerosing-

cholangitis/diagnosis.html

Dawn

Can anyone give me an

> idea of how I can work out what stage i'm at?

> Thanks again

>

> (UK, PSC & UC 2002)

>

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,

Below is a copy of Mayo's staging system; however, according to my

Dr.making a determination on the stage has a lot of factors and is

not very accurate until you reach stage 4. I have small duct PSC my

last biopsy rated me at stage 1; however, my doctor said I am most

likely at stage 2 or 3. He said the discrepency when it comes to

biopsies, especially with small duct PSC is related to the fact that

if the biopsy was taken from a different location that had more

problems then I would of been scored higher. My Dr. came to this

conclussion because the biopsy reported that I had duct obliteration

and " bead like webbing " throughout both lobes of my liver based on my

last MRCP. He told me that there is often disagreement on the

staging until stage IV when cirrhosis has developed because there is

very little dispute over what it looks like.

My take on this is that staging is not very important and I am where

I am at in this disease process and all I can do is try and help it

not to progress. This disease appears to be very individuallly based

and doesn't appear to me to have " normal " or predictable progression

patterns.

Any way I hope this information is helpful.

Stages of PSC

Stage 1 — Fibrosis or scar tissue limited to a few spots called

portal areas, little areas of " plumbing " or ductwork in the liver

tissue

Stage 2 — Fibrosis begins to appear outside the portal areas. The

strands of fibrosis are not yet connected to each other.

Stage 3 — Areas of fibrosis connecting to each other

Stage 4 — Widespread, honeycomblike scarring known as cirrhosis

http://www.mayoclinic.org/primary-sclerosing-

cholangitis/diagnosis.html

Dawn

Can anyone give me an

> idea of how I can work out what stage i'm at?

> Thanks again

>

> (UK, PSC & UC 2002)

>

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Stages of PSC

Stage 1 — Fibrosis or scar tissue limited to a few spots called

portal areas, little areas of " plumbing " or ductwork in the liver

tissue

Stage 2 — Fibrosis begins to appear outside the portal areas. The

strands of fibrosis are not yet connected to each other.

Stage 3 — Areas of fibrosis connecting to each other

Stage 4 — Widespread, honeycomblike scarring known as cirrhosis

This is helpful, I have not yet had a liver biopsy. So far, my stages

have just been denial, anger, grief and acceptance. :)

ee

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Stages of PSC

Stage 1 — Fibrosis or scar tissue limited to a few spots called

portal areas, little areas of " plumbing " or ductwork in the liver

tissue

Stage 2 — Fibrosis begins to appear outside the portal areas. The

strands of fibrosis are not yet connected to each other.

Stage 3 — Areas of fibrosis connecting to each other

Stage 4 — Widespread, honeycomblike scarring known as cirrhosis

This is helpful, I have not yet had a liver biopsy. So far, my stages

have just been denial, anger, grief and acceptance. :)

ee

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Stages of PSC

Stage 1 — Fibrosis or scar tissue limited to a few spots called

portal areas, little areas of " plumbing " or ductwork in the liver

tissue

Stage 2 — Fibrosis begins to appear outside the portal areas. The

strands of fibrosis are not yet connected to each other.

Stage 3 — Areas of fibrosis connecting to each other

Stage 4 — Widespread, honeycomblike scarring known as cirrhosis

This is helpful, I have not yet had a liver biopsy. So far, my stages

have just been denial, anger, grief and acceptance. :)

ee

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Hi,

Yeah this really does help. On my last ultrasound the results came

back that my liver had a course echo-texture has anyone else had

this?

Regards

(UK, PSC & UC 2002)

>

>

> Stages of PSC

> Stage 1 — Fibrosis or scar tissue limited to a few spots called

> portal areas, little areas of " plumbing " or ductwork in the liver

> tissue

> Stage 2 — Fibrosis begins to appear outside the portal areas. The

> strands of fibrosis are not yet connected to each other.

> Stage 3 — Areas of fibrosis connecting to each other

> Stage 4 — Widespread, honeycomblike scarring known as cirrhosis

>

>

> This is helpful, I have not yet had a liver biopsy. So far, my

stages

> have just been denial, anger, grief and acceptance. :)

>

> ee

>

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