AIH,PBC, APS AND PORTAL VEIN

[daisy11]

Well I came across this looking on the British liver trust site. I suffer from above and I feel quite alone getting around this. Everywhere I read on this it says that cirrohosis caused by AIH will cause cancer - I just do not know where to look.

[Hidden]

The internet can be a great source of information but it does not replace what you can get from talking to a hepatologist. If you have not already done so, get a referral from your GP and have a list of questions you want answering. Take someone with you if you want moral support.

My own diagnosis of cirrhosis did lead to a cancer. Fortunately, this was spotted early in a routine scan and in December 2011, I had a liver transplant.

[jenniwren]

I have had AIH with cirrhosis for 13 years, since the age of 13. I visit a consultant at least every 3 months and my Dad is a GP. I have never heard of there being a link between this and cancer. I would definitely recommend getting a referral and asking your consultant questions as the internet will always scaremonger.

All the best

[daisy11]

Thank you for replying to everyone, actually I am under the care of Hepatologist and he is b rilliant, but each time I go which is every month I have a list and I am a little embarrassed by adding another to the list, but next time I am going to ask. There are regular scans, endoscopies etc but the thought is there

[witchiegirl]

How I view it is this: having AI liver disease, indeed any liver disease, does seem to increase risk of certain cancers, but that doesn't mean everyone gets cancer, and getting regular medical care, scans, bloods etc. will show up problems early so that something can be done. In a sense, knowing about increased risk (of certain cancers) is a good thing, as for the general population they can be quite insidious and caught quite late. I hope that helps.

daisy11, you shouldn't feel bad about asking questions when you see the specialist - answering questions is one of their roles, and they do get paid for it! Writing a list before an appointment is actually a good way to prepare for a medical meeting, and most doctors accept this, some welcome it!

[Jtxx]

I have AIH/PBC overlap syndrome. I was told that long term use of Azathioprine increases the risk of cancer. However, I was also told that if I did not take it I would be dead in 3yrs. Decision made! However, I am current in remission and after 2yrs they are going to try and take me off the azathioprine (they recon I have a 30% chance of staying in remission). If my LFT's go up again I will be on them for life. Just got to stay positive and try and live as full as life as I can and listen to my body. Take care. X

[daisy11]

Thank you once again - I am or Myfofic (sorry can't spell) along with other drugs and it has been mentioned about Azathiaprine as my lfts are quite high. I do write a list but one can see the look of amazement when I start reeling them off, however I was thinking last week well we pay them to look after us so I am going to mention it next time in two weeks.