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Hi all --

Well, after many calls back and forth and to the hospital here in Portland, ME,

I finally found out that the hospital did not send a copy of my CT scan (done in

May to check my iliac aneurysm) to my doctor at Mass General even though I asked

them three times and gave them his address. Oh, well --------!!!!!!!!!!!!!!!!!

They did finally send him a copy of the film and he sent me a nice note.

Everything is stable (which I knew), but now my doctor in Boston wants my CT

scans done at Mass General - I guess he is not happy with the hospital up here

in the " sticks " (LOL!!!!!!!!). Of course, I love the " sticks " !!!!!! So now I

need to decide if I want to go to Boston once a year for this or just stick with

the people here in Maine. I have never had a doctor out-of-state before, so am

not sure exactly what to do. I still want to keep my vascular doctor here,

because you never know when an " emergency " might happen - but I want my doctor

in Boston to have all the info he needs because he will be the one who will fix

it if it gets any bigger.

I'm thinking of going and talking with my doctor here and make sure he is OK

with this -- I'm sorta leaning towards doing the Boston thing. Any

advice/suggestions would be greatly appreciated. Thanks.

Love, Patti

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  • 4 years later...

, I have been through that twice this past year and both times

they decided it was not cancer, just progression of the PSC and my

cirrhosis. I too was freaked out when they called and said that they

needed to rule out cancer. I never thought the diagnosis

of " progression of the PSC " would sound so sweet, but it sure brought a

smile to our face.

My hep at Baylor All Saints knew we were stressed out, so after she

told us it was only progression of the disease she said, " Now get out

of my office and go do something fun " . I hope you too get " good news " .

PSC 5/07 Listed

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, I have been through that twice this past year and both times

they decided it was not cancer, just progression of the PSC and my

cirrhosis. I too was freaked out when they called and said that they

needed to rule out cancer. I never thought the diagnosis

of " progression of the PSC " would sound so sweet, but it sure brought a

smile to our face.

My hep at Baylor All Saints knew we were stressed out, so after she

told us it was only progression of the disease she said, " Now get out

of my office and go do something fun " . I hope you too get " good news " .

PSC 5/07 Listed

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Hi ,My husband has had PSC for 18 years but always remained stable.  The first part of November they found cancer on his liver.  It's called HCC (Hepatic Cellular Carcinoma).  After consultations and more scans he was moved to the top of the transplant list about the middle of November.  He got his first call for a possible transplant the day after Thanksgiving (8 days after going to the top of the list).  It turned out that they couldn't use the liver for my husband but then we got another call in another 5 days.  That was on December 3.  The surgery went very well and he's feeling good.  We've had a problem with rejection but that seems to be better.  I told you our story to let you know that in our case, cancer got my husband a new start.  Good luck to you and God

bless. Judy from Central Illinois (Ron PSC 1/91, transplant 12/3/08)To: Sent: Thursday, January 15, 2009 5:06:48 PMSubject: CT Scan

Just wondering

I had an abdominal/liver ultrasound done early December followed by a

colonoscopy the next day. A couple of weeks later, I was called by my

hepatologist to complete a CT scan (coming up in 2 weeks). It turns

out they're looking to clarify whether I have nodules on my liver.

Anyone had those? Should I be concerned? Very little of what I've read

online about nodules has anything positive to say as it mostly talks

about cancer.

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Hi ,My husband has had PSC for 18 years but always remained stable.  The first part of November they found cancer on his liver.  It's called HCC (Hepatic Cellular Carcinoma).  After consultations and more scans he was moved to the top of the transplant list about the middle of November.  He got his first call for a possible transplant the day after Thanksgiving (8 days after going to the top of the list).  It turned out that they couldn't use the liver for my husband but then we got another call in another 5 days.  That was on December 3.  The surgery went very well and he's feeling good.  We've had a problem with rejection but that seems to be better.  I told you our story to let you know that in our case, cancer got my husband a new start.  Good luck to you and God

bless. Judy from Central Illinois (Ron PSC 1/91, transplant 12/3/08)To: Sent: Thursday, January 15, 2009 5:06:48 PMSubject: CT Scan

Just wondering

I had an abdominal/liver ultrasound done early December followed by a

colonoscopy the next day. A couple of weeks later, I was called by my

hepatologist to complete a CT scan (coming up in 2 weeks). It turns

out they're looking to clarify whether I have nodules on my liver.

Anyone had those? Should I be concerned? Very little of what I've read

online about nodules has anything positive to say as it mostly talks

about cancer.

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Hi ,My husband has had PSC for 18 years but always remained stable.  The first part of November they found cancer on his liver.  It's called HCC (Hepatic Cellular Carcinoma).  After consultations and more scans he was moved to the top of the transplant list about the middle of November.  He got his first call for a possible transplant the day after Thanksgiving (8 days after going to the top of the list).  It turned out that they couldn't use the liver for my husband but then we got another call in another 5 days.  That was on December 3.  The surgery went very well and he's feeling good.  We've had a problem with rejection but that seems to be better.  I told you our story to let you know that in our case, cancer got my husband a new start.  Good luck to you and God

bless. Judy from Central Illinois (Ron PSC 1/91, transplant 12/3/08)To: Sent: Thursday, January 15, 2009 5:06:48 PMSubject: CT Scan

Just wondering

I had an abdominal/liver ultrasound done early December followed by a

colonoscopy the next day. A couple of weeks later, I was called by my

hepatologist to complete a CT scan (coming up in 2 weeks). It turns

out they're looking to clarify whether I have nodules on my liver.

Anyone had those? Should I be concerned? Very little of what I've read

online about nodules has anything positive to say as it mostly talks

about cancer.

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Hi

> I never thought the diagnosis of " progression of the PSC " would

sound so sweet, but it sure brought a smile to our face.

Well that sounds positive. I'm hoping that's all it ends up being.

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Hi

> I never thought the diagnosis of " progression of the PSC " would

sound so sweet, but it sure brought a smile to our face.

Well that sounds positive. I'm hoping that's all it ends up being.

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Hi

> I never thought the diagnosis of " progression of the PSC " would

sound so sweet, but it sure brought a smile to our face.

Well that sounds positive. I'm hoping that's all it ends up being.

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Hi

> In liver cirrhosis, benign nodules can often develop. It is

important to distinguish between these non-cancerous nodules and pre-

malignant or malignant nodules, which would be more serious. The

following article suggests that magnetic resonance (MR) imaging may be

better than CT in distinguishing between them:

Thanks for the info. As far as I know, there's no cirrhosis yet since

my PSC doesn't seem to be that advanced yet. However, depending on the

outcome of the CT scan, I'll see about getting the MRI done as well.

I'd say it doesn't hurt to be too cautious in identifying this one.

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Hi

> In liver cirrhosis, benign nodules can often develop. It is

important to distinguish between these non-cancerous nodules and pre-

malignant or malignant nodules, which would be more serious. The

following article suggests that magnetic resonance (MR) imaging may be

better than CT in distinguishing between them:

Thanks for the info. As far as I know, there's no cirrhosis yet since

my PSC doesn't seem to be that advanced yet. However, depending on the

outcome of the CT scan, I'll see about getting the MRI done as well.

I'd say it doesn't hurt to be too cautious in identifying this one.

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Hi

> In liver cirrhosis, benign nodules can often develop. It is

important to distinguish between these non-cancerous nodules and pre-

malignant or malignant nodules, which would be more serious. The

following article suggests that magnetic resonance (MR) imaging may be

better than CT in distinguishing between them:

Thanks for the info. As far as I know, there's no cirrhosis yet since

my PSC doesn't seem to be that advanced yet. However, depending on the

outcome of the CT scan, I'll see about getting the MRI done as well.

I'd say it doesn't hurt to be too cautious in identifying this one.

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