irenea

Hi —

Just want to add that many, many medical centers recommend AGAINST the biopsy as a diagnostic tool because spread is a concern. However, I think for some of us, true diagnosis is SO difficult that they end up at biopsy because nothing else tells the story. In my case I had been warned about a MILLION things it could be — but no one had put cholangio on my radar screen.

Hi Betsy:

Not sure there are too many that are cancer-free, but I think some (those of us in the “incidentally found” tumor world, as in “oops there’s a tumor in your liver. No there’s two!”) are , to some degree, symptom-free.

Which is something.

Hi,
Welcome John. We are a supportive group of folks although it’s never good to have to join our little club, as Lainy often says.

It’s a scary and awful thing, but I think if everybody here could tell you one thing it would be to try to put all the horrible predictions of doom out of your head. THis is a nasty nasty disease and it tries its hardest to harm us all, and honestly, it usually wins. But these days a lot of us are fighting a better fight than was thought possible a few years ago. More people are surviving for longer periods of time, and it is in fact possible to maintain quality of life for some time after the diagnosis.

PLease check in often and honestly, expect this overwhelming depression to take hold of you. That, in some ways, is worse than the illness itself. It’s quite a fight.

Courage,
Irene

Hello,

Please add me to the long list of those sending positive thoughts and courage to Lisa.

Love,
Irene

Hi —
Just some info from personal experience about the surgery. The more opinions you get, the better — there are some docs who are much more willing to be aggressive with difficult tumors than others. That being said, there are, unfortunately, many many reasons why surgery cannot work or even when it fails (as it did in my case.) In my case the primary tumor is wrapped around the portal vein, and the chances of removing the tumor without damaging the portal vein — which is necessary to sustain life — is slim. They are ways to “create” things like portal veins, but they are terribly risky and not too dependable (although things are always improving.)
There is also the concern over the size of the tumor and if it intrahepatic, how much liver needs to be removed. While the liver can amazingly essentially regrow itself, it CANNOT regrow the vital veins and arteries that get removed during the surgery, so the liver does not ever function normally again in many cases.

Anyway — don’t mean to be grim, but wanted to share my own experiences. There are many of us on the board who went in for surgery and woke, only to find that the surgery failed.

Take care,
Irene

Hi Lisa,

Was awful to read of your predicament — they get us everywhere, don’t they?

Have you considered a reverse mortgage? It is kind of the option you’d want to try last but it could work for someone in our circumstances — essentially someone else gains equity in your house and you are guaranteed a home and often a small monthly stipend until you pass. Of course the awful downside is that it leaves you nothing to pass on to your children. But I think for some people in our circumstances, it is something to consider.

Thinking of you,
Irene