"There's a myth that anyone who has a liver problem has brought it on themselves" This quote is from a Crohn's disease patient living with a blocked portal vein hoping for a liver transplant (Independent 31st Oct 2010)

Thursday, 4 August 2011

Cyber support

3-monthly AFP tumour marker blood test today. I have a love/hate relationship with this test. I want it done for the reassurance a good result gives, and I hate the moment of opening the envelope to read the results in case its gone up.

On the support forum I help administrate a member who has finally cleared Hepatitis B after a course of drug treatment has been diagnosed with multiple HCC tumours. He's waiting to find out if he can be assessed for a liver transplant. This tragic news came just after I'd posted my positive July blood results and I had to admit that his story will haunt me for a while. Within a few hours of my post, a knowledgeable HCC survivor wrote me this message:

"They excised segment 2 of your liver, apparently with good margins, and you had a single mass? Early stage 2? No lymphatic compromise? If that's the case then I wouldn't be stressing too much about the HCC coming back. It might very well down the track, perhaps a very long way down the track, but it's unlikely to be the same one. Given that you *didn't* have a cluster, and that everything remains fine, then I think your prognosis is good. Obviously I'm not qualified to make that call, but it's my (reasonably educated) opinion. Unresolved HCCs usually come back like a train. If it's been more than a year - and it has by now, surely - then you should be relaxing about it. Relaxing in this context doesn't mean not being vigilant"

Thanks Dallo, if you ever pop by and read this!

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