Both parents with Primary HCC

SNAP · New User Joined: 12 Nov 2007 Posts: 5 Location: UK

Just came across this sight and wanted to share my experience.

My mother was diagnosed 6 years ago, aged 65, from HCC as a result of HepC. She was offered microwave ablation, a then new technique offering a simple surgical intervention that would make recovery easier. The only risk we were informed of was that the HCC could trigger another tumour at any time. The 'simple' surgery was really quite a major op that mum never recovered from physically, though we were told the procedure was completely successful. Quality of life was now very poor (alot of pain and discomfort and poor mobility), but 6 months after the op the follow-up scan confirmed she was cancer-free. Within 2 months the cancer came back with avengance and she died with quite some pain. In hindsight, I feel my mother was used as a test-case for a new technique without informing us of the full risks. I'm not convinced the ablation removed all of the tumour and may even have spread it around the liver so that it was too small to detect on a scan.
None of the family were offered screening in case we also had HepC.

Last month, aged 75, my father was also diagnosed with HCC and HepC. The scans reveal the 2 tumours are huge, one is the size of the whole of the right lobe, the other about 4.5cm in the other lobe. Resection is not an option. Chemo is available, but only to slow down tumour growth or at best shrink it a little. The dilemma now is that he is presently completely symptom free and liver function is good. There are no metastases as far as we know, but we are waiting for another scan to confirm this. Side effects from the chemo would worsen his quality of life, so the advice we are being given is to do nothing until symptoms develop, then start the chemo.

In the UK we have free healthcare, which is great. The downside is that clinical decisions are often based on where our health system gets the 'best value'. My worry is whether or not we are getting the best advice for my father or is it a case of the best use of hospital funding?

Does anybody have any experience of a similar situation where different treatment options are offered?

brainman · Posted: Mon Nov 12, 2007 4:05 pm Post subject: Re: Both parents with Primary HCC

SNAP, I can see why the decision about treatment for your father is so difficult for him to make. With his wife's experience as a background, it must make it very difficult. However, each person is different so he needs to make it based on his on condition and medical advice. Have they given him a prognosis without vs with treatment? His quality of live could go down very quickly either way. Continue to work with his medical team to find out all the information he needs to make an informed decision about treatment.

You and your father are in my thoughts and prayers.
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SNAP · New User Joined: 12 Nov 2007 Posts: 5 Location: UK

Thanks Brainman.

Yes, he's had very mixed feelings. When first diagnosed his immediate reaction was to do nothing. I managed to convince him not to rule out surgery and he became very positive about it until this option was ruled out. He remained positive about chemo until it was made clear this was not curative and at best would only buy him some time.

We've not been given a definate prognosis. They will scan again in January and the rate of growth will give them a better idea. All they will say is that at an age of 75, HCC growth is much slower so they don't anticipate a sudden downturn in his health.

Thanks again for your support

laupw · Posted: Tue Nov 13, 2007 8:59 am Post subject: Re: Both parents with Primary HCC

Hello,
A blood test, perhaps once a month, for the level of alpha protein
in his blood stream may gave an indication of the growth rate of the tumours in his liver.

My mum was diagnosed with advance stage of HCC in January.
She had Chemo embl', which i persuaded her to take. I thought this would help, but, with the benefit of hindsight, i think it may have contributed to the deteoriation in her condition. At this stage, i dont think chemo was helpful - personal opinion.

Seek further advice from his consultant about best avenue to take.

i hope this helps,

pwl

My mother was infected with HCV from a blood transfusion in 1974.

She passed away in May, this year.

SNAP · New User Joined: 12 Nov 2007 Posts: 5 Location: UK

Hi laupw

Thanks for that

They did measure his AFP originally to help diagnose but the levels were not really that high. Never really thought about it until you just mentioned it but it sounds like a useful measure.

Sorry to hear about your mum. I take your point about the chemo and at the moment we're letting him enjoy the quality of life before going down that route.

Thanks again

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