Re:I have actual CT report and would love some help/Aubrey

[Guest guest]

I'm trying to learn from your interpretation too, because I also get

copies of my records (and then puzzle over them). As I recall,

had his CT because of somewhat elevated CA19-9; I believe it was well

under 100. Does that change anything in the type or frequency of tests

you recommend?

The contrast is administered IV, so does it primarily show blood

perfusion of the liver? Does the attenuated response to contrast

indicate that smaller blood vessels are blocked in the abnormal areas?

I also wonder when they say in a report " there were no focal masses in

the liver " , because isn't cholangiocarcinoma usually extrahepatic, and

it follows the ducts? So would it really form a focal mass? I sort of

think of it as some kind of pernicious lichen on a tree trunk, but I

have no idea if that's at all accurate.

Thanks for your expert help.

Martha (MA)

>

> The last report suggests that only two areas of the liver appear to be

> functioning and looking fairly normal; the lateral part of the left

> lobe and the posterior section of the right lobe. No definitive area of

> ductal enlargement is seen and therefore dilation of the ducts would

> probably not be of benefit. However, a contrast MRI might provide a

> better picture of what is going on with the liver and the ducts. No

> mass is seen and this is a good thing because it means that there is no

> cancer to cause the picture of the poorly functioning areas of the

> liver. On the positive side the liver doesn't appear enlarged or

> shrunken and neither does the spleen. An enlarged spleen and a fibrotic

> looking liver mean that portal hypertension and varices are far more

> likely to be present. Since your son has been diagnosed with PSC

> further imaging studies should probably be ERCPs and MRIs, because what

> you want to know is what is going on with the ducts which tend to be

> better seen on MRI and more obviously using ERCPs. The timing and

> repetition of these studies depends on symptoms and other signs. The

> other test that may be necessary down the road is an endoscopy to look

> for varices. Early on none of these tests needs to be done on a regular

> basis.

>

> Aubrey, MD

> PSC '81, UC '90, LTX '98, Recurrence '05

>

[Guest guest]

Martha

You really do have a good memory. I am impressed! The elevated CA19-9

was the reason for this CT scan.

Thank you for taking the time to write. I am glad that we have this

board. My sister has ALS and while they have a great clinic and an ALS

Associataion that is very helpful and they have monthly in-person ALS

support group meeting that we can attend - they don't seem to have an

active online support group although they do have online support groups

they do not have multiple daily posts (unless there is one that I have

not yet found).

Kind Regards,

Nichole

[Guest guest]

, this disease can go in fits and starts. You can be reasonably

good for a long while and then feel awful. Get a bit better again,

sometimes, and then go on for a while as if nothing is happening. Or it

can be quite progressive and you can get really unwell quite rapidly.

It's quite variable, as noted by all our members. The most common

pattern is a long slow decline with periods of exacerbation during this

decline. I had liver problems for 18 years before tx. Initially it was

quite bad with fatigue being the main symptom. I found that really

devastating. But that improved a bit or I got used to it. Then came

bouts of itchiness on and off that drove me crazy. That added to the

insomnia I was experiencing. Which made the fatigue worse. I'm a bit

concerned by your saying that the colon growth has returned and the

surgeons or doctors don't want to remove it. Has he had regular

colonoscopies and biopsies of this area? Growths in the colon can turn

malignant. And if he has UC this increases the risk of malignancy. One

of the sad aspects of this disease is that you don't know how bad

you'll feel until you experience it as the disease gets worse. For

example, I thought the fatigue and inability to do much was really

terrible when it started. But in the months leading up to my tx this

got much, much worse. It was indescribable how the simplest activity

wore me out. The bouts of cholangitis was horrible as well. But I never

experienced any that didn't go away in a day. I'm sure others who had

ascending cholangitis experienced much worse agony. I encourage you to

get that new colon lesion biopsied soon if it hasn't been. I had a

tough day yesterday because I had to tell one of my patients that she

has metastases in her liver and lungs from a cancer removed from her

colon 2 years ago.

Martha, you are correct in thinking that something is blocking the

activity in that part of the liver with lower attenuation. But it may

be on the output side of things. In other words the flow of bile may be

reduced due to shrinking of the small bile ducts, so called small duct

PSC. Or scarring from chronic inflammation of the liver tissue. Because

of the concern about cancer they were looking for a mass such as a

liver metastases from the colon. This would appear as a sort of ball or

roundish lesion in the tissue of the liver. Your interpretation of

cholangiocarcinoma is probably correct as well. It would be like a moss

on the common bile duct but growing inwards (and outwards) choking off

the flow of bile. I'm not sure what layer of the duct it starts in and

because it may start in one of the outer layers, brushings of the duct

may not get any cancer cells until too late. This is one reason why

suspicion of development of this cancer is required in interpreting

scans (MRIs) and why doing a tx before it develops is so important. My

tx hepatologist told me on my first visit (I had liver disease for 16

years by then) that he wanted me on the list ASAP so that I could

possibly get a new liver before I developed CC. His statement was

something to the effect that by 20 years of having liver disease (PSC)

the risks of having CC at the time of tx were unacceptable. Almost

forget, CC is extrahepatic.

Aubrey, MD

PSC '81, UC '90, LTX '98, Recurrence '05