Re: interpretation of MRI results???

[Guest guest]

>

> Okay, I got the paperwork from regarding my latest test

results and

> there were a few things my coordinator did not share with me.

First, all of my

> liver functions were elevated again so, while the doctor was

telling me how

> perfect I was (while vomiting) my liver functions were actually

elevated (all of

> them!). Secondly, I the values of my CA-19-9 and AFP are higher

than they've

> ever been before, although they are not astronomical (my AFP is

quite a bit

> further from normal than the other).

What were the lab results? It might help us all to put the whole

picture into perspective.

in Seattle

UC 1991, PSC 2001

[Guest guest]

>

> Okay, I got the paperwork from regarding my latest test

results and

> there were a few things my coordinator did not share with me.

First, all of my

> liver functions were elevated again so, while the doctor was

telling me how

> perfect I was (while vomiting) my liver functions were actually

elevated (all of

> them!). Secondly, I the values of my CA-19-9 and AFP are higher

than they've

> ever been before, although they are not astronomical (my AFP is

quite a bit

> further from normal than the other).

What were the lab results? It might help us all to put the whole

picture into perspective.

in Seattle

UC 1991, PSC 2001

[Guest guest]

>

> Okay, I got the paperwork from regarding my latest test

results and

> there were a few things my coordinator did not share with me.

First, all of my

> liver functions were elevated again so, while the doctor was

telling me how

> perfect I was (while vomiting) my liver functions were actually

elevated (all of

> them!). Secondly, I the values of my CA-19-9 and AFP are higher

than they've

> ever been before, although they are not astronomical (my AFP is

quite a bit

> further from normal than the other).

What were the lab results? It might help us all to put the whole

picture into perspective.

in Seattle

UC 1991, PSC 2001

[Guest guest]

Thanks, Barb. Everything I found when I typed in "foci of arterial enhancement liver" referred to hepatocellular carcinoma. I like what you found much better!!!

(MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs

[Guest guest]

Thanks, Barb. Everything I found when I typed in "foci of arterial enhancement liver" referred to hepatocellular carcinoma. I like what you found much better!!!

(MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs

[Guest guest]

or if they even thought you might

I guess I wish I knew what they do think the reason for them is, that might make me feel better. They weren't there last year, and now they are. My guess is there is some reason that I now have three lesions on my liver. I'm not assuming I HAVE cancer, but I think it's worth keeping an eye on, and 12 months from now isn't soon enough for my comfort. The tx docs obviously aren't planning to look any sooner than that because there was no mention of it. I, too, believe that they should have told me what was found, explained it to me, and if they aren't worried then explain to me why. As I told my SIL, it was at least worth honorable mention.

I have had this happen to me before, which is why I requested copies of my test results. I told my family I was waiting for the results, because it's been my experience that they don't always tell you everything. Proof is in the pudding.

I'm going to send a copy of this report to my endoscopist since we have such a wonderful rapport and get his advice on what he feels is the best way to keep an eye on this. I believe that either my endoscopist or my primary care physician will order an MRI again in 3-6 months -- they know me better than anyone and are usually afraid to take chances with me.

(MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs

[Guest guest]

or if they even thought you might

I guess I wish I knew what they do think the reason for them is, that might make me feel better. They weren't there last year, and now they are. My guess is there is some reason that I now have three lesions on my liver. I'm not assuming I HAVE cancer, but I think it's worth keeping an eye on, and 12 months from now isn't soon enough for my comfort. The tx docs obviously aren't planning to look any sooner than that because there was no mention of it. I, too, believe that they should have told me what was found, explained it to me, and if they aren't worried then explain to me why. As I told my SIL, it was at least worth honorable mention.

I have had this happen to me before, which is why I requested copies of my test results. I told my family I was waiting for the results, because it's been my experience that they don't always tell you everything. Proof is in the pudding.

I'm going to send a copy of this report to my endoscopist since we have such a wonderful rapport and get his advice on what he feels is the best way to keep an eye on this. I believe that either my endoscopist or my primary care physician will order an MRI again in 3-6 months -- they know me better than anyone and are usually afraid to take chances with me.

(MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs

[Guest guest]

or if they even thought you might

I guess I wish I knew what they do think the reason for them is, that might make me feel better. They weren't there last year, and now they are. My guess is there is some reason that I now have three lesions on my liver. I'm not assuming I HAVE cancer, but I think it's worth keeping an eye on, and 12 months from now isn't soon enough for my comfort. The tx docs obviously aren't planning to look any sooner than that because there was no mention of it. I, too, believe that they should have told me what was found, explained it to me, and if they aren't worried then explain to me why. As I told my SIL, it was at least worth honorable mention.

I have had this happen to me before, which is why I requested copies of my test results. I told my family I was waiting for the results, because it's been my experience that they don't always tell you everything. Proof is in the pudding.

I'm going to send a copy of this report to my endoscopist since we have such a wonderful rapport and get his advice on what he feels is the best way to keep an eye on this. I believe that either my endoscopist or my primary care physician will order an MRI again in 3-6 months -- they know me better than anyone and are usually afraid to take chances with me.

(MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs

[Guest guest]

,

I don't like what I pulled up, either. Could you send the results to

Cleveland Clinic - maybe the films themselves, too, and see what they

say? I know that the last time I sent an MRI, I got it on a CD to send

to the other hospital. It was much less cumbersome than the large-

sized filmes, and I'm sure it would be cheaper to mail!

I did my Google search as: MRI foci of arterial enhancement liver. I

think it helped weed out a lot of stuff about brain ischemia and other

things not related to your MRI at all. I know that you've had

a " challenging " relationship with . I wish I could offer some

more ideas on how to handle them!

Love,

Deb in VA

[Guest guest]

-----Original Message-----

The most disturbing

thing that I read is: " There are three foci of arterial enhancement

scattered throughout the liver.

I’m not a doctor……

Foci – abnormally high number of echoes inside an area. I did find some causes……don’t

know if any of these apply to you.

Gallstones, biliary stones, cysts, abscess, inflammation, gas

bubbles and calcifications.

Barb in Texas

[Guest guest]

-----Original Message-----

The MRI report says that " doubtful clinical significance,

though continued annual follow-up is recommended. " Everything I

found when I typed in " foci of arterial enhancement liver " referred

to hepatocellular carcinoma. I like what you found much better!!!

IMHO, If you had cancer or if they even thought

you might, the doctor and/or the MRI would have said so. No one wants to get caught up in that

kind ($$$$$$$$) of law suit.

The guy who reads the MRI doesn’t have all the facts, only

the picture that’s in front of him.

So his saying “annual follow-up” is taken just as a

guideline.

The problem I see is the doctor not telling you what the MRI

found. Good, bad or indifferent, he

should have mentioned it. Now a

days doctor’s should know we patients are very resourceful, we get copies

and read them, what we don’t know, we look up and can often times jump to

conclusions.

Maybe this is something all PSCer’s can learn by –

tell your doctor you get copies of tests, so he better tell you about them

before you find out on your own.

Barb in Texas

[Guest guest]

-----Original Message-----

The MRI report says that " doubtful clinical significance,

though continued annual follow-up is recommended. " Everything I

found when I typed in " foci of arterial enhancement liver " referred

to hepatocellular carcinoma. I like what you found much better!!!

IMHO, If you had cancer or if they even thought

you might, the doctor and/or the MRI would have said so. No one wants to get caught up in that

kind ($$$$$$$$) of law suit.

The guy who reads the MRI doesn’t have all the facts, only

the picture that’s in front of him.

So his saying “annual follow-up” is taken just as a

guideline.

The problem I see is the doctor not telling you what the MRI

found. Good, bad or indifferent, he

should have mentioned it. Now a

days doctor’s should know we patients are very resourceful, we get copies

and read them, what we don’t know, we look up and can often times jump to

conclusions.

Maybe this is something all PSCer’s can learn by –

tell your doctor you get copies of tests, so he better tell you about them

before you find out on your own.

Barb in Texas

[Guest guest]

-----Original Message-----

The MRI report says that " doubtful clinical significance,

though continued annual follow-up is recommended. " Everything I

found when I typed in " foci of arterial enhancement liver " referred

to hepatocellular carcinoma. I like what you found much better!!!

IMHO, If you had cancer or if they even thought

you might, the doctor and/or the MRI would have said so. No one wants to get caught up in that

kind ($$$$$$$$) of law suit.

The guy who reads the MRI doesn’t have all the facts, only

the picture that’s in front of him.

So his saying “annual follow-up” is taken just as a

guideline.

The problem I see is the doctor not telling you what the MRI

found. Good, bad or indifferent, he

should have mentioned it. Now a

days doctor’s should know we patients are very resourceful, we get copies

and read them, what we don’t know, we look up and can often times jump to

conclusions.

Maybe this is something all PSCer’s can learn by –

tell your doctor you get copies of tests, so he better tell you about them

before you find out on your own.

Barb in Texas

[Guest guest]

-----Original Message-----

The MRI report says that " doubtful clinical significance,

though continued annual follow-up is recommended. " Everything I

found when I typed in " foci of arterial enhancement liver " referred

to hepatocellular carcinoma. I like what you found much better!!!

IMHO, If you had cancer or if they even thought

you might, the doctor and/or the MRI would have said so. No one wants to get caught up in that

kind ($$$$$$$$) of law suit.

The guy who reads the MRI doesn’t have all the facts, only

the picture that’s in front of him.

So his saying “annual follow-up” is taken just as a

guideline.

The problem I see is the doctor not telling you what the MRI

found. Good, bad or indifferent, he

should have mentioned it. Now a

days doctor’s should know we patients are very resourceful, we get copies

and read them, what we don’t know, we look up and can often times jump to

conclusions.

Maybe this is something all PSCer’s can learn by –

tell your doctor you get copies of tests, so he better tell you about them

before you find out on your own.

Barb in Texas

[Guest guest]

-----Original Message-----

The MRI report says that " doubtful clinical significance,

though continued annual follow-up is recommended. " Everything I

found when I typed in " foci of arterial enhancement liver " referred

to hepatocellular carcinoma. I like what you found much better!!!

IMHO, If you had cancer or if they even thought

you might, the doctor and/or the MRI would have said so. No one wants to get caught up in that

kind ($$$$$$$$) of law suit.

The guy who reads the MRI doesn’t have all the facts, only

the picture that’s in front of him.

So his saying “annual follow-up” is taken just as a

guideline.

The problem I see is the doctor not telling you what the MRI

found. Good, bad or indifferent, he

should have mentioned it. Now a

days doctor’s should know we patients are very resourceful, we get copies

and read them, what we don’t know, we look up and can often times jump to

conclusions.

Maybe this is something all PSCer’s can learn by –

tell your doctor you get copies of tests, so he better tell you about them

before you find out on your own.

Barb in Texas

[Guest guest]

-----Original Message-----

The MRI report says that " doubtful clinical significance,

though continued annual follow-up is recommended. " Everything I

found when I typed in " foci of arterial enhancement liver " referred

to hepatocellular carcinoma. I like what you found much better!!!

IMHO, If you had cancer or if they even thought

you might, the doctor and/or the MRI would have said so. No one wants to get caught up in that

kind ($$$$$$$$) of law suit.

The guy who reads the MRI doesn’t have all the facts, only

the picture that’s in front of him.

So his saying “annual follow-up” is taken just as a

guideline.

The problem I see is the doctor not telling you what the MRI

found. Good, bad or indifferent, he

should have mentioned it. Now a

days doctor’s should know we patients are very resourceful, we get copies

and read them, what we don’t know, we look up and can often times jump to

conclusions.

Maybe this is something all PSCer’s can learn by –

tell your doctor you get copies of tests, so he better tell you about them

before you find out on your own.

Barb in Texas

[Guest guest]

Do many of you have problems with drs. not having test results, or having to transport files papers, x-rays to different drs. in the same system yourself? I would be so frustrated if that were the way I had to do it. At U.of Michigan every blood test, specialist report, dr.'s notes, test result is on a lap top that is carried by the doctor to each appt. When there is a question, he/she just scrolls back to the last test and can have all the info without any fuss, or rummaging through files. Not having test results, just doesn't happen. Provided everything was done in the U.of M. system.

I can understand carrying files to another system or hospital, but hearing about some of the problems others have had with getting results to the office so they are available makes me appreciate the folks in Ann Arbor.

MizKit

[Guest guest]

Do many of you have problems with drs. not having test results, or having to transport files papers, x-rays to different drs. in the same system yourself? I would be so frustrated if that were the way I had to do it. At U.of Michigan every blood test, specialist report, dr.'s notes, test result is on a lap top that is carried by the doctor to each appt. When there is a question, he/she just scrolls back to the last test and can have all the info without any fuss, or rummaging through files. Not having test results, just doesn't happen. Provided everything was done in the U.of M. system.

I can understand carrying files to another system or hospital, but hearing about some of the problems others have had with getting results to the office so they are available makes me appreciate the folks in Ann Arbor.

MizKit

[Guest guest]

Do many of you have problems with drs. not having test results, or having to transport files papers, x-rays to different drs. in the same system yourself? I would be so frustrated if that were the way I had to do it. At U.of Michigan every blood test, specialist report, dr.'s notes, test result is on a lap top that is carried by the doctor to each appt. When there is a question, he/she just scrolls back to the last test and can have all the info without any fuss, or rummaging through files. Not having test results, just doesn't happen. Provided everything was done in the U.of M. system.

I can understand carrying files to another system or hospital, but hearing about some of the problems others have had with getting results to the office so they are available makes me appreciate the folks in Ann Arbor.

MizKit

[Guest guest]

> My guess

> is there is some reason that I now have three lesions on my liver.

12 months

> from now isn't soon enough for my comfort.

> I'm going to send a copy of this report to my endoscopist since we

have such

> a wonderful rapport and get his advice on what he feels is the best

way to

> keep an eye on this.

As Deb says, definitely send it out for a second opinion from Cleveland.

I belatedly obtained a copy of a CT scan report that had two regions

of hypodensity. When I asked my Endoscopist/Gastro what it meant, I

was surprised to find the hepatobiliary surgery/tx team from his own

hospital hadn't forwarded a copy to him. NOBODY is coordinating the

doctors. He immediately ordered an MRI, which didn't show anything

new. He's planning annual MRI and ERCP with brushings, offset by six

months, for cancer surveillance.

Is the donor evaluation still going on? This is one rough

rollercoaster for you. Hang in there.

Martha (MA)

[Guest guest]

> My guess

> is there is some reason that I now have three lesions on my liver.

12 months

> from now isn't soon enough for my comfort.

> I'm going to send a copy of this report to my endoscopist since we

have such

> a wonderful rapport and get his advice on what he feels is the best

way to

> keep an eye on this.

As Deb says, definitely send it out for a second opinion from Cleveland.

I belatedly obtained a copy of a CT scan report that had two regions

of hypodensity. When I asked my Endoscopist/Gastro what it meant, I

was surprised to find the hepatobiliary surgery/tx team from his own

hospital hadn't forwarded a copy to him. NOBODY is coordinating the

doctors. He immediately ordered an MRI, which didn't show anything

new. He's planning annual MRI and ERCP with brushings, offset by six

months, for cancer surveillance.

Is the donor evaluation still going on? This is one rough

rollercoaster for you. Hang in there.

Martha (MA)

[Guest guest]

> My guess

> is there is some reason that I now have three lesions on my liver.

12 months

> from now isn't soon enough for my comfort.

> I'm going to send a copy of this report to my endoscopist since we

have such

> a wonderful rapport and get his advice on what he feels is the best

way to

> keep an eye on this.

As Deb says, definitely send it out for a second opinion from Cleveland.

I belatedly obtained a copy of a CT scan report that had two regions

of hypodensity. When I asked my Endoscopist/Gastro what it meant, I

was surprised to find the hepatobiliary surgery/tx team from his own

hospital hadn't forwarded a copy to him. NOBODY is coordinating the

doctors. He immediately ordered an MRI, which didn't show anything

new. He's planning annual MRI and ERCP with brushings, offset by six

months, for cancer surveillance.

Is the donor evaluation still going on? This is one rough

rollercoaster for you. Hang in there.

Martha (MA)