going thro hard time

[Guest guest]

Well, I went for a second opinion 2 weeks ago today, August 24,2008

thinking I was just going to hear what my GI in Green Bay told me but

suprise......I went to UW Madison Hospital and on Monday I was

admitted to the hospital to have a prtc test as there was an area

they could not get into with the ERCP....What a roller coaster I was

on all the week I was in the hospital....had an MRI and MRICP on

Monday, PRTC on Tuesday and they were not able to find a bile duct on

the left lobe of my liver, they put 40 to 45 needles in my stomach

between my breast bone...Ont Wed they did not do anything to me but

tell me that on Friday they were going to take the left lobe of my

liver off as it was deformed....the left lobe should be 40% of the

liver and mine is only 20%.....around dinner time on Wed. they called

on the phone and said if they did the surgery without another ERCP to

try one more time to get into that area and they did the surgery I

would never be able to have a liver transplant as the surgery would

be out of protocal.....so Thursday morning they did an ERCP and they

were able to get into that area.....they sent part of the biopsy to

UW Madison and the rest to Mayo's....then I was to go home on Friday

and in comes the surgeon and he sits down and tells me that the team

(head of Liver Dept, who is a wonderful doctor, head of the Oncology

dept, head of Surgery and Transplant Department, head of Radiology

and even the Dr. that the ERCP were sure I had Cholangiocarsnoma

(spelling is not correct, I'm sure) at this point no tests were back

and they told us to wait for the test as they knew it was going to be

positive and and they wanted me to meet with the head of Oncology and

get started on a 6 week treatment of chemo and radiation......well,

he left and the head of the liver dept can in and he was mad that the

surgeon said all this to me.....he said " no, no, this is a worry to

us but not a most worry " but my husband said we are not leaving here

till we know what the test at UW comes back as we live about 4 hours

from the hospital and if we have to meet with the oncologist we want

to do it right away......so to make a long story shorter the

oncologist came to meet us before the test came back and he

said " What is going on here " ....I told him the whole story and he

said " no, no " this is a worry to us but I don't know how to tell you

what I'm trying to say and I told him the other Dr. said it was not a

Most Worry....he said that was exactly right.....the phone call came

in from UW while the Oncologist was there and and the report was

negative.....now we are still waiting for the report to come back

from Mayo's......it is a bit unnerving at this time but my primary

Dr. called me the day before yesterday and I told him that my ALT and

AST are back in the normarl range and the other liver chemistry test

which had been 5 times over normal when I was first dignosed in early

March was now only 2 times over.....He said I am responding beautiful

to URSO with these reading and my CA 19-9 is 46 and has been since I

was dignosed.....My primary said this was great and he would be

shocked if I had cancer....he did not feel I would be responding as

well as I am......and the CA 19-9 would be higher.....I stopped

watching what I eat since all this started and I put on 9 pounds too

so that is another sign that he feels I am OK......that made me feel

better but I'm really sitting on pins and needles.....all this talk

about ca19-9 from the convention was very intersting to me but I was

in the hospital so could not be there......if this test comes back

neg. they want to do another ERCP and some more burushings and send

them to UW and also to Mayo's then if they come back neg they want to

do a scope and a needle in my side to do another biopsy....they are

not leaving a stone unturned as they say if it is cancer it is so

hard to dignose that I can have a Liver transplant at this point and

they can cure me.......my primary said go through all the test but

DON'T LET THEM CUT ON YOU UNLESS YOUR DAMN SURE WHAT THEY ARE CUTTING

AND WHY....

Anyone out there go thro anything like this......My primary said it

is alway a big worry when some one is dignosed with PSC about

anything that looks different that is could be cholangiocarcenoma

(sp).....I'm worried.....

CJ