Re: Questions about CA 19-9/Cindy/

[Guest guest]

Cindy, was this your colleague with Hep C? It was a different type of

cancer, most likely hepatocellular carcinoma. There's an established

protocol to treat that cancer and then transplant, and I guess they

have pretty decent outcomes. UNOS allows it because the transplant is

not likely to be futile.

The cancer we are at risk for with PSC is cholangiocarcinoma (CCA),

bile duct cancer. This is a very insidious cancer, because it's hard

to see in imaging. CA19-9 can detect it but it can also be elevated

with inflammation, and with pancreatic cancer. Mayo uses a cutoff of

greater than 100 for suspicion of CCA. Most centers send patients home

if CCA is discovered at the time of surgery for transplant because

they do not have clearance from UNOS to transplant if there is CCA.

However, Mayo (and I think U Neb, Omaha) do have permission to

transplant under an experimental protocol. This involves the cancer

being smaller than a certain size, not having spread to lymph nodes,

and so forth. The trouble is, it's hard to find the cancer at this

early stage.

For and Mark, I suggest that you contact Dr Gores at Mayo,

Rochester, MN, and send him Mark's records to decide whether he might

benefit from making the trip to Mayo. You can't use CA19-9 to diagnose

cancer alone, there has to be some other evidence too.

>

>

> Wait a minute....my coworker just had a liver

> transplant because she had liver cancer. There are

> some transplant centers that do transplants even if

> you have cancer....so if they find it earlier enough,

> or it is contained within the liver, a transplant is

> viable.

>

> The 3 hospitals that I KNOW does this is U of M in

> Michigan, Henry Ford in Michigan and Mayo Clinic in

> Minnesota.

>

> Do not go home and give up....fight...PSCers are

> fighters. Never, ever let a doctor dictate your life

> expectancy...they are human and make mistakes...and

> your will to survive factors into when you check out

> of here.

>

> Sorry to be so strong in my message, but if you have

> ever read the history of what my family had gone thru,

> you would know that we definitely blow those doctor's

> statistics right out of the water!!! Because, we

> choose not to believe or accept their statistics.

>

> Cindy Baudoux-Northrup

>

>

>

>

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