I'm checked every 6 months for hcc. My last scan was all clear. I know with cirrhosis there is a high chance of getting liver cancer but how high?
Also I've heard a lot of people say they have 50% liver damage or 40% cirrhosis. I asked my go and he said he had no idea. Is this correct or do I need to have a certain test to find out?
Thanks
How will knowing the % risk help you? A scan and an AFP blood test every 6 months is what you get on the NHS. Even if they could work out that you had a 40% risk and I had a 60% risk we still both get the same 6monthly monitoring. Try and be reassured that this level of monitoring generally picks up HCC at a stage when it can be treated, so make sure you go to all your appointments. If you want to start a bucket list thinking you are doomed to die, I guess you could. I didn't and I'm still here 5 years post treatment for a HCC that was picked up by an AFP blood test.
I rather echo what Bolly has to say, why worry about 'what ifs'? You are having the same monitoring as everyone who has cirrhosis in the 6 monthly scans and regular AFP blood tests and should anything untoward appear it should be picked up in time to be treatable.
I don't think anyone ever gets told what percentage chance there is of getting HCC, as it is a chance and is in no means inevitable.
Katie xx
Thanks for your comments. I guess if I knew it would motivate me to do more with my life. I really want to make a difference but aa I'm tired all the time I feel I'm letting life slip by.
I didn't want to know what percentage the chance is of cancer I wanted to know the percentage of damage I have. That way it would also motivate me more to b more healthy and do more with my life.
What % of damage you have could be assessed by biopsy, but I dont recommend that! You mentioned in another post your doctor had diagnosed from a CT that you had portal hypertension and varicies. These are side effects of what they call 'decompensated' cirrhosis. Liver damage progresses from none, to fibrosis, to bridging fibrosis where the damage crosses bridges in the liver to other parts of the liver, compensated cirrhosis (where the damage is more but the liver is still 'compensating' for the damage so the patient stays relatively symptom free) to decompensated where the liver is no longer coping and the patient gets side effects: - fluid retention, blood pressure problems, mental confusion. So you are pretty much at the high % of damage end. You no longer drink, which is fab. But you do still have to take medication for your anxiety etc, which is not so fab for your liver as it has to process this, but you need to take the meds, so not a lot you can do about it.
Yes you will be tired all the time, the liver is a source of energy and yours cant store the 'energy' needed any more. Its partly a physical tiredness from the liver damage, and partly a mental tiredness from being fed up with it all. Not sure what to suggest really, apart from trying to find something to make it worth getting up for each day: family, friends, a pet, some volunteer work to make a difference to someone else's life, looking outward to the world rather than inward to yourself. Sending hugs (((0)))
Very good explanation.
I'll just add that in all honesty there are no accurate numbers to be had until someone can remove the liver and take a really good look. Every other measure has a large margin of error and no measure you get will make any difference to what you have to do on a daily basis to allow maximum liver function and recovery.
So saying that, let the symptoms tell you how seriously to take it. Bolly put it quite well and you really only have one choice - that being to do everything in your (and your medical team's) power to look after yourself, your liver and to make the most of your life and to hope things don't get worse. It may seem daunting but at least it's simple - and you may find the daily achievement of doing something positive, eating well, seeing the people you like, sticking to your meds etc. strangely comforting.
Very best wishes.
I've was dx 11 years ago with symptoms including Portal Hypertension, my Meld is 13, my UKELD is 56 and Spleen fluctuates between 22 and 25 cms, I've always been referred to as Compensated (despite British Liver Trust stating on their web that PH is associated with Decompensated), to my knowledge, I've never had a Liver T assessment even though anything over UKELD 49 should be considered for Transplant and I'm at the QE in Birmingham, thee Liver Specilaist Transplant Centres of all Transplant centres in the UK.
Can someone please clarify whether I'm Comp or Decomp? No variaces, HE (possibly minimal), Ascites etc.
I'd happily take 2 years with a decent QoL then like the past 20 years of being symptomatyic.
If you have no varices or ascites and only minimum signs of HE then you'd be classed as compensated. Your liver is coping ok if you are relatively symptom free. It's when your liver really starts to struggle with lots of the red flag symptoms (ascites, more severe HE and such like) that you'd tip into the decompensated category & your life might then be at risk.
If you are relatively symptom free then you'd have a long wait for transplant - you would qualify with a UKELD of 56 though as you're bloods are obviously out of range . Transplant is seen as a sort of last resort option and due to the shortage of quality donor livers it is a life saving operation rather than a quaranteed life improving one.
However, you are better hanging on with your own liver if you arn't experiencing too many symptoms.
My hubby was assessed and listed for 10 months but delisted because he is seen to be too well for transplant. He has had portal hypertension with varices (though these are currently eradicated through banding), he has minor HE symptoms, no jaundice, no ascites and now no PH because he had an operation to block off aneurysms in the splenic artery which resulted in his enlarged spleen actually dying off - this improved his blood count and most of the time his LFT's are next to normal. He remains under the supervision of doctors locally and at Edinburgh, has 6 monthly scans and an annual endoscopy.
Wishing you all the best, Katie
Cheers Katie, whilst I hear what you are saying and I'm aware LT doesn't guarantee an better QoL, for me, it's the only light and the end of the tunnel, I've been significantly symptomatic since I was an Adolescent, I'd rather take short term quality of life than long term poor quality fo life.
Despite not having the big four Decomp symptoms.
I get you and hubby and I have felt the same though he's only been diagnosed since 2012. His quality of life is rubbish and he certainly isn't living the life he'd hoped to. We saw transplant as the light at the end of the tunnel but due to the shortage of livers they can only do it as a life saving operation rather than a QOL one - they can't guarantee it will actually improve quality of life.
Have you actually asked the question about transplant? You've been unwell for so long and like you say had limited quality of life. Your UKELD score would qualify you for transplant it's whether the multi disciplinary team see the benefit of transplant outweighing the risks in your case and the only way for this to be assessed is via transplant assessement. It might be worth asking the question and pushing for an assessment at least.
Katie xx
I understand the whole QoL conundrum, I never asked as I was under the impression I wasnt considered as I was frequently referring to the MELD score and I was too low, I didnt really understand calculate my UKELD as my Gastros always referred to Meld however I calculated it yesterday, I'm going to chase this up tomorrow, thanks for the info.
Hi
Unfortunately there is no way to know who will or who won't get cancer due to cirrhosis, or at what stage.
My husband was listed for transplant on October 2011 and transplanted in Dec 11. I n
between times he had no further scans but just waited. When the liver was removed they found over ten tumours. .
If they had scanned again and found them he would not even have been a candidate for TP.
So I think it is just luck of the draw as and when, and whether or not you may or may not, develop HCC.
Are you on the TP list, what hospital do you attend, do you see a Gastro or Hepatologist, do you know the cause of your cirrhosis?
Good Luck
Just a bit more to my previous EMail.
AFP in certain people does not show HCC, as was in my husbands, case, but it did us a favour!
Hello xxx
Cirrhosis - whatever level or degree - mean your liver is not good 😓😓
Tiredness is another symptom - I suppose without scans (ultrasound/MRI/fibroscan) they can't give you a % but any % is not good as it is permanent scaring - those bits of liver with cirrhosis in will not repair themselves - but the bits that aren't can !!!! It is very difficult to keep positive and keep those good bits of liver going because - as you say the fatigue - but if you aren't waiting for transplant then there is no reason why you shouldn't keep a healthy lifestyle - ask your Drs for advice about keeping healthy or have a look on Liver Trust website xxxx to be honest if the cirrhosis has damaged your liver 'fully' - blood tests etc would show that xxxxxxx. Keep strong and positive - if your not waiting for transplant then do as much as you can to help your liver - transplant is the last resort - so until you get placed on that list keep strong and do what you can 😘😘😘😘😘😘😘😘 good luck xxxxx
Being blunt there is no such thing as 40% cirrhosis, cirrhosis is the whole live being scared and this is why the liver won't repair back to its normal state. Cirrhosis is the end stage of a series of liver damage stages that get to the end result that being cirrhosis. There is pretty much double the chance of HCC with cirrhosis than a normal healthy liver which is to be expected. Cancer is normally the results of cellular damage. You are doing the right thing, ultrasound or CT every 6 months, some clinics chose to alternate. AFP blood test as-well. However, the scan and the blood work is the gold standard for assessing HCC because AFP might not be elevated in 55% of cases of HCC. Both put together give a pretty good indication of whether HCC is present.
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