Does younger mean more aggressive????

[Guest guest]

My daughter Olivia was diagnosed with PSC a few months ago.I have asked what stage the disease is in and I only get blank stares and no answer. I have had to research the disease myself as having my daughter in the room with me, the medical staff are reluctant to discuss future complications of this disease.I understand that it is a rare disease but even rarer in one so young. My daughter is 13 but I believe that it has been undiagnosed for a while.Many of you talk about the Mayo Clinic. Can a doctor there work in collaboration with doctors here in Australia? How can I access someone who obviously is experienced in this disease. It breaks my heart when I read some of your stories as I would rather go through this than my daughter.Another question, I know that there isn't a cure but (a) what is longest time you have heard of someone being in remission and ( what tests are given to check for CCa. The doctors here haven't even breathed this possibility to me let alone keeping an eye out for it! and © Is there someone from a Mayo clinic that I can access through email who is willing to advise us in regard to her biopsy and bloods? Thank you in advance for any replies. Our journey is just beginning and it is so, so scary.Dora

[Guest guest]

Yes Dora, you are right, it is scary. After a while you " get used " to

the idea and then the only thing you can do is try to keep as healthy

as possible and fight the symptoms.

I am not too well informed about pediatric PSC, but I do remember

reading somewhere that there is some suggestion that it is a different

kind of PSC that the adult form.

There are a few people on this forum that have PSC for more than 30

years, and more than a few that have it for more than two decades.

Staging is mostly done by biopsy. The problem with biopsy is that the

location of the biopsy is important. It is very well possible to

perform a biopsy and get a result without any scarring, even though

most of the liver would be stage 3 for example. My hepatologist took a

biopsy while my gall bladder was being removed. He could visually

decide where to perform the biopsy.

CCA is mostly checked by a blood cancer marker called CA19-9. It is

far from perfect but non-intrusive and accurate in most of the

patients. If you want to be really sure an ERCP with brushing is

needed or a procedure called FISH, that I don't understand yet.

There are a few people from Australia on this forum who will surely be

able to refer you to their own specialists.

There is also a PSC forum for mothers of young PSC patients.

http://health.groups.yahoo.com/group/pscmoms/?v=1&t=directory&ch=web&pub=groups&\

sec=dir&slk=10

Regards,

Chaim Boermeester, Israel

>

> My daughter Olivia was diagnosed with PSC a few months ago.I have asked

> what stage the disease is in and I only get blank stares and no answer.

> I have had to research the disease myself as having my daughter in the

> room with me, the medical staff are reluctant to discuss future

> complications of this disease.

> I understand that it is a rare disease but even rarer in one so young.

> My daughter is 13 but I believe that it has been undiagnosed for a

> while.Many of you talk about the Mayo Clinic. Can a doctor there work in

> collaboration with doctors here in Australia? How can I access someone

> who obviously is experienced in this disease. It breaks my heart when I

> read some of your stories as I would rather go through this than my

> daughter.

> Another question, I know that there isn't a cure but (a) what is longest

> time you have heard of someone being in remission and ( what tests are

> given to check for CCa. The doctors here haven't even breathed this

> possibility to me let alone keeping an eye out for it! and © Is there

> someone from a Mayo clinic that I can access through email who is

> willing to advise us in regard to her biopsy and bloods?

> Thank you in advance for any replies. Our journey is just beginning and

> it is so, so scary.

> Dora [:-/]

>

[Guest guest]

Yes Dora, you are right, it is scary. After a while you " get used " to

the idea and then the only thing you can do is try to keep as healthy

as possible and fight the symptoms.

I am not too well informed about pediatric PSC, but I do remember

reading somewhere that there is some suggestion that it is a different

kind of PSC that the adult form.

There are a few people on this forum that have PSC for more than 30

years, and more than a few that have it for more than two decades.

Staging is mostly done by biopsy. The problem with biopsy is that the

location of the biopsy is important. It is very well possible to

perform a biopsy and get a result without any scarring, even though

most of the liver would be stage 3 for example. My hepatologist took a

biopsy while my gall bladder was being removed. He could visually

decide where to perform the biopsy.

CCA is mostly checked by a blood cancer marker called CA19-9. It is

far from perfect but non-intrusive and accurate in most of the

patients. If you want to be really sure an ERCP with brushing is

needed or a procedure called FISH, that I don't understand yet.

There are a few people from Australia on this forum who will surely be

able to refer you to their own specialists.

There is also a PSC forum for mothers of young PSC patients.

http://health.groups.yahoo.com/group/pscmoms/?v=1&t=directory&ch=web&pub=groups&\

sec=dir&slk=10

Regards,

Chaim Boermeester, Israel

>

> My daughter Olivia was diagnosed with PSC a few months ago.I have asked

> what stage the disease is in and I only get blank stares and no answer.

> I have had to research the disease myself as having my daughter in the

> room with me, the medical staff are reluctant to discuss future

> complications of this disease.

> I understand that it is a rare disease but even rarer in one so young.

> My daughter is 13 but I believe that it has been undiagnosed for a

> while.Many of you talk about the Mayo Clinic. Can a doctor there work in

> collaboration with doctors here in Australia? How can I access someone

> who obviously is experienced in this disease. It breaks my heart when I

> read some of your stories as I would rather go through this than my

> daughter.

> Another question, I know that there isn't a cure but (a) what is longest

> time you have heard of someone being in remission and ( what tests are

> given to check for CCa. The doctors here haven't even breathed this

> possibility to me let alone keeping an eye out for it! and © Is there

> someone from a Mayo clinic that I can access through email who is

> willing to advise us in regard to her biopsy and bloods?

> Thank you in advance for any replies. Our journey is just beginning and

> it is so, so scary.

> Dora [:-/]

>

[Guest guest]

Yes Dora, you are right, it is scary. After a while you " get used " to

the idea and then the only thing you can do is try to keep as healthy

as possible and fight the symptoms.

I am not too well informed about pediatric PSC, but I do remember

reading somewhere that there is some suggestion that it is a different

kind of PSC that the adult form.

There are a few people on this forum that have PSC for more than 30

years, and more than a few that have it for more than two decades.

Staging is mostly done by biopsy. The problem with biopsy is that the

location of the biopsy is important. It is very well possible to

perform a biopsy and get a result without any scarring, even though

most of the liver would be stage 3 for example. My hepatologist took a

biopsy while my gall bladder was being removed. He could visually

decide where to perform the biopsy.

CCA is mostly checked by a blood cancer marker called CA19-9. It is

far from perfect but non-intrusive and accurate in most of the

patients. If you want to be really sure an ERCP with brushing is

needed or a procedure called FISH, that I don't understand yet.

There are a few people from Australia on this forum who will surely be

able to refer you to their own specialists.

There is also a PSC forum for mothers of young PSC patients.

http://health.groups.yahoo.com/group/pscmoms/?v=1&t=directory&ch=web&pub=groups&\

sec=dir&slk=10

Regards,

Chaim Boermeester, Israel

>

> My daughter Olivia was diagnosed with PSC a few months ago.I have asked

> what stage the disease is in and I only get blank stares and no answer.

> I have had to research the disease myself as having my daughter in the

> room with me, the medical staff are reluctant to discuss future

> complications of this disease.

> I understand that it is a rare disease but even rarer in one so young.

> My daughter is 13 but I believe that it has been undiagnosed for a

> while.Many of you talk about the Mayo Clinic. Can a doctor there work in

> collaboration with doctors here in Australia? How can I access someone

> who obviously is experienced in this disease. It breaks my heart when I

> read some of your stories as I would rather go through this than my

> daughter.

> Another question, I know that there isn't a cure but (a) what is longest

> time you have heard of someone being in remission and ( what tests are

> given to check for CCa. The doctors here haven't even breathed this

> possibility to me let alone keeping an eye out for it! and © Is there

> someone from a Mayo clinic that I can access through email who is

> willing to advise us in regard to her biopsy and bloods?

> Thank you in advance for any replies. Our journey is just beginning and

> it is so, so scary.

> Dora [:-/]

>

[Guest guest]

As a Mom, my heart aches for you....as a patient -

please understand that life goes on. your attitude

towards this disease can and will affect how your

daughter's attitude is.

Yes this is a very scary disease, but as others have

posted, slow progressing and many live decades. The

key word being live. Never never let PSC prevent your

daughter from living her life. There will be times

when the road is rocky, but she will learn how to

side-step those rocks and keep a sure footing on her

path.

I'm 51.5....have has UC for most of my life, now have

a jpouch, was dx with PSC through routine blood tests

in 1997 - 11 years ago. I have terrible itching but

life goes on....I somehow find the energy to keep

going.

I think people with diseases just learn to cope better

with illness. For example, my husband came down with

a horrible, horrible sinus infection/cold. He missed

5 days of work. He generously gave it to me (bless

his heart)...and since I work in customer service and

talk on the phone 8 hours per day, I only missed 1 day

and that is because I couldn't speak above a whisper.

He is at home right now belly-aching about how he

feels and I am at work (lunch break) plugging away at

my job.

I have learned to deal with pain and the annoying

itching that some PSCers get!

I have found Cleveland Clinic is very good at

communicating with people with questions. The last I

knew, Dr. Carey was the hepatologist there...you might

use that as a stepping stone to getting some answers

to your questions. Both Cleveland Clinic and Mayo

Clinic have excellent doctors.

Cindy Baudoux-Northrup

[Guest guest]

As a Mom, my heart aches for you....as a patient -

please understand that life goes on. your attitude

towards this disease can and will affect how your

daughter's attitude is.

Yes this is a very scary disease, but as others have

posted, slow progressing and many live decades. The

key word being live. Never never let PSC prevent your

daughter from living her life. There will be times

when the road is rocky, but she will learn how to

side-step those rocks and keep a sure footing on her

path.

I'm 51.5....have has UC for most of my life, now have

a jpouch, was dx with PSC through routine blood tests

in 1997 - 11 years ago. I have terrible itching but

life goes on....I somehow find the energy to keep

going.

I think people with diseases just learn to cope better

with illness. For example, my husband came down with

a horrible, horrible sinus infection/cold. He missed

5 days of work. He generously gave it to me (bless

his heart)...and since I work in customer service and

talk on the phone 8 hours per day, I only missed 1 day

and that is because I couldn't speak above a whisper.

He is at home right now belly-aching about how he

feels and I am at work (lunch break) plugging away at

my job.

I have learned to deal with pain and the annoying

itching that some PSCers get!

I have found Cleveland Clinic is very good at

communicating with people with questions. The last I

knew, Dr. Carey was the hepatologist there...you might

use that as a stepping stone to getting some answers

to your questions. Both Cleveland Clinic and Mayo

Clinic have excellent doctors.

Cindy Baudoux-Northrup

[Guest guest]

Hi Dora,

My husband, Brad, is 32 years old and was diagnosed with PSC earlier

this year after undergoing a variety of tests for over six months to

determine why his bloods were all out of whack. He has had ulcerative

colitis for over 10 years and initially his gastroenterologist

suspected PSC but after a liver biopsy, it was ruled out. It wasn't

until he was sent to Dr Stuart at The Alfred in Melbourne that

further tests were done and the diagnosis was made. Dr is a

liver specialist and is the head of gastro at The Alfred. They run a

liver clinic for Hep C, cirrhosis and PSC patients and it is free of

charge.

They have the new Fibro Scan machine which takes the place of the liver

biopsy and they also have one at The Royal Pince Alfred in Sydney I

think or at least it's at another hospital in Sydney but I know there

are only two in Australia so I imagine they would be at the hospitals

with the best doctors/facilities in the field of gastro. Or at least I

hope

Whereabouts are you located?

I too have been researching PSC a lot since my husbands' diagnosis and

this group is the most fantastic resource, a real wealth of information

but please feel free to email me at any time if you have any Australia-

specific questions and I will share what I have learned to date

My heart goes out to you. It is scary having an unwell husband, but I

can only imagine how I would feel if it was one of my children.

Good luck and once again, please feel free to ask any questions, I

would be happy to share

Cheers,

Kate

[Guest guest]

Hi Dora,

My husband, Brad, is 32 years old and was diagnosed with PSC earlier

this year after undergoing a variety of tests for over six months to

determine why his bloods were all out of whack. He has had ulcerative

colitis for over 10 years and initially his gastroenterologist

suspected PSC but after a liver biopsy, it was ruled out. It wasn't

until he was sent to Dr Stuart at The Alfred in Melbourne that

further tests were done and the diagnosis was made. Dr is a

liver specialist and is the head of gastro at The Alfred. They run a

liver clinic for Hep C, cirrhosis and PSC patients and it is free of

charge.

They have the new Fibro Scan machine which takes the place of the liver

biopsy and they also have one at The Royal Pince Alfred in Sydney I

think or at least it's at another hospital in Sydney but I know there

are only two in Australia so I imagine they would be at the hospitals

with the best doctors/facilities in the field of gastro. Or at least I

hope

Whereabouts are you located?

I too have been researching PSC a lot since my husbands' diagnosis and

this group is the most fantastic resource, a real wealth of information

but please feel free to email me at any time if you have any Australia-

specific questions and I will share what I have learned to date

My heart goes out to you. It is scary having an unwell husband, but I

can only imagine how I would feel if it was one of my children.

Good luck and once again, please feel free to ask any questions, I

would be happy to share

Cheers,

Kate

[Guest guest]

Hi again,

Sorry, forgot to mention - I went with Brad to see Dr a couple

of months ago and took a list of questions. Some of my main concerns

were the CCA and (as Brad is already at Stage 4, cirrhosis) the

varices. The doc confirmed that they will run tests for CCA, varices

and continue scanning his liver a couple of times a year.

It is at least comforting to know that they are looking out for these

complications.

Cheers,

Kate

[Guest guest]

Hi again,

Sorry, forgot to mention - I went with Brad to see Dr a couple

of months ago and took a list of questions. Some of my main concerns

were the CCA and (as Brad is already at Stage 4, cirrhosis) the

varices. The doc confirmed that they will run tests for CCA, varices

and continue scanning his liver a couple of times a year.

It is at least comforting to know that they are looking out for these

complications.

Cheers,

Kate