Upsetting Update on Me

[Guest guest]

Dear Friends,

Yesterday afternoon we got the test results back of a genetic test

called the `FISH' test that was sent out after my September

appointment and stent removal. The test is a biopsy and was sent to

Mayo by one of my doctors, and wires got crossed; somehow my

hepatologist never got the message that this test was completed and

sent out. He ordered this test again this Monday, after my most

recent ERCP and stent placement, and got a call today asking if he

really wanted to do this test over. At this point he was made aware

that a `FISH' test had already been completed on me, and the results

were abnormal.

Now this part I may be wrong about, so bear with me, it's just my

understanding: This test shows the morphology of chromosomal

abnormalities, as cells turn from benign to cancerous. My cells in

this stubborn strictured area that have been a pain in my side (HA)

for the last year, are on their way to becoming cancerous. One could

say this is similar to when I had my colon removed; high-grade

dysplasia throughout the colon indicated that cells were in the last

stages of turning from `abnormal' to `cancerous'; that's what is

happening in this strictured area in my bile duct right now. This

has been slightly suspected for some time, but none of my doctors—

even until 2 p.m. yesterday—truly thought that my situation was

indicative of cholangiocarcinoma; but we've caught it before it

became full-blown CCa.

My hospital, Washington University Medical Center and -Jewish

Hospital in St. Louis is one of three hospitals that participates in

an extremely strict protocol for this exact type of situation—Mayo

Clinic and University of Pittsburgh Medical Center being the other

two—and given lots of confounding factors, I am a perfect candidate

to participate in this protocol. We already have a plan in place, as

we must move quickly with CCa.

Within the next two to three weeks I will go in for an exploratory

laproscopic surgery to be certain that there is no visible cancer

anywhere in my abdomen, except for the strictured area. We will also

biopsy the surrounding lymph nodes, and expect these studies to come

back clean. I will then see a fertility specialist to harvest and

freeze my eggs to preserve future fertility. As soon as this is

completed I will undergo chemotherapy and radiation treatments that

are very specialized and somewhat localized to the bile ducts. When

these are completed, another exploratory surgery will take place to

again confirm that there is no other cancer.

When all of this has been completed, I will be listed for liver

transplant with top priority (automatic additional points to give me

a high MELD score, based on the results of the FISH test and the

procedures I will be going through). We expect that a liver will

then become available to me within three to six months time, and I

will undergo a full traditional liver transplantation with arterial

reconstruction.

The risks are many, the benefit is life. As you all know,

cholangiocarcinoma can be very deadly—it is a boogeyman, as my

hepatologist says. It jumps out of nowhere for most people, and

those of us with PSC have the `benefit' of knowing that we need to

watch for this boogeyman. Well, we've found him, in my case.

I want to tell you more, but I don't know more at this point. I

didn't come home with any paperwork explaining anything to me, I am

just expecting `a call' from `someone at WashU' `sometime soon' to

get this process started. This all happened at 4 o'clock yesterday

afternoon. My hepatologist and surgeon sat down with my husband

, myself, and my Dad (an M.D.) and explained it all—mostly to my

Dad, in very technical terms, and then dumbed it down a little bit

for and myself—but then my hep had to leave around 5:30 to pick

up his daughter so we had to cut the session short. They had already

added my name as to the program for this protocol before talking to

me about it, knowing the answer would be yes. I hope to know more

very soon.

For now, I am scared shitless. I have only been processing this

since about three o'clock yesterday afternoon, and I'm already way

out of tears. I'm on lots of drugs right now to even me out, or I

might be having a nervous breakdown; for now I'm just numb. I need

your support. Please, anyone who has been through this: I need your

comments and advice about this process, and your hands to hold as I

go through this. My doctors said this will be a horrible year for

me, and to remember that my health, family, and friends are ALL that

matter right now; I can pick everything else back up in a year, when

this is all just a very bad dream.

Thank you for your support,

Genevieve

UC 1983, J-Pouch 1999, PSC 12/07

[Guest guest]

Hey Genevieve,

So sorry about your diagnoses, but happy you were diagnosed so early

and that there is a viable, survivable treatment.

We were devastated when we learned that had cholangiocarcinoma.

It was hellishly hard, but nothing compared to what people go through

with untreatable CCA. is back to work, now, and loving life

again. There are whole days that I do not think about the cancer, and

transplant, or all that we went through to get here; proof that it

does pass.

and I are here for you. We are happy to hold your hand, and do

anything we can to get you through this.

God Bless,

Franson

wife of (psc 1994, cca 2007, tx 2008)

There is a support group for CCA at cholangiocarcinoma.org. Good

people. Good support.

[Guest guest]

Hey Genevieve,

So sorry about your diagnoses, but happy you were diagnosed so early

and that there is a viable, survivable treatment.

We were devastated when we learned that had cholangiocarcinoma.

It was hellishly hard, but nothing compared to what people go through

with untreatable CCA. is back to work, now, and loving life

again. There are whole days that I do not think about the cancer, and

transplant, or all that we went through to get here; proof that it

does pass.

and I are here for you. We are happy to hold your hand, and do

anything we can to get you through this.

God Bless,

Franson

wife of (psc 1994, cca 2007, tx 2008)

There is a support group for CCA at cholangiocarcinoma.org. Good

people. Good support.

[Guest guest]

Hey Genevieve,

So sorry about your diagnoses, but happy you were diagnosed so early

and that there is a viable, survivable treatment.

We were devastated when we learned that had cholangiocarcinoma.

It was hellishly hard, but nothing compared to what people go through

with untreatable CCA. is back to work, now, and loving life

again. There are whole days that I do not think about the cancer, and

transplant, or all that we went through to get here; proof that it

does pass.

and I are here for you. We are happy to hold your hand, and do

anything we can to get you through this.

God Bless,

Franson

wife of (psc 1994, cca 2007, tx 2008)

There is a support group for CCA at cholangiocarcinoma.org. Good

people. Good support.