Newly diagnosed

[ENuk]

4 months ago I had blood tests for tiredness and it highlighted poor liver function, more blood tests and then a scan which showed multiple and large 'lesions'. I was fast tracked to a CT, MRI and nuclear scan as cancer was suspected although markers in blood tests were negative. Neuroendryrine tumours were suspected.

I have had 2 liver biopsies (which appeared inconclusive) and eventually a surgical biopsy to remove a lesion and part of my liver 3 weeks ago. Last week I was told that PBC was likely (not 100%) and I am now waiting to be referred to a liver specialist - Royal Free in London.

I don't know my levels - although I have been told 'not too bad'.

My liver has no scarring but I have multiple lesions which were described as concerning. Is it common to have lesions with PBC? I couldn't find information that describes this

When I see the specialist what information should I find out?

I feel generally well although the fatigue is considerable and it impacts my ability to work fulltime. I know it's a common symptom but does medication help with this?

I also get pain in my upper chest, sharp pain at times which I previously thought was muscular but perhaps is related to the condition.

I would appreciate any advice.

[GrittyReads]

Hi ENuk,

It is good you have found this site, although I would also contact the lovely advisors at the 'PBC Foundation' who host this site on 'Health Unlocked'. There is a link to the 'PBC F' site at the top of this page: you could just browse the site at first, if you like, as it is very good. There will also be phone and email links to contact the 'PBC F' team.

Also, if you join (it's free) you will get much more access to the website, including a recent 8-page summary of a newly agreed UK Guide, for all medical professionals dealing with PBC, on the formal route and testing for diagnosis of PBC. This should help you to feel more secure about the path your diagnosis and treatment is taking, and give you an idea of some questions to ask at your appt. But do talk to the 'PBC F' people, as well, about helping you to work out questions for when you see the hepatologist.

From what I've read and learned over the years, on here, I don't think that the lesions you describe are that typical of PBC, but it is good that they are keeping an eye on everything. Also, remember that the liver is a marvellous organ in its ability to heal itself and regenerate, so it can put up with a lot of dealings and damage. Also, the tiredness with PBC is common, but can ease with medication, plus you will be feeling more stressed and anxious now with tests, waiting, and all your unanswered questions. So, do try to do things to de-stress, and relax yourself. Treat yourself and do things you love and enjoy.

But do talk to the PBC F people, and maybe also the people at the British Liver Trust (BLT) who also have a 'help-site' here on 'Health Unlocked'.

Take care, I hope this helps,

Gritty.