The recent CT has shown that my husband has a small cancer on his liver. They are planning a MRI scan to check and then will get it removed by injecting it then using microwaveable heat to remove... He has been on the transplant waiting list for 2 years now....
I am so worried ://
Sorry, the rest of my post had disappeared...
The Prof said that it is a few cm... Has anyone else had this experience? Has anyone else successfully had a tumour removed?
The Prof said he is going to push for my husband to get a transplant.... I thought being on the list was enough of a priority...
There are avnumber of treatments for small tumours. I had TACE which involves placing drugs close to the tumour via an artery. These can reduce the size of the tumour. Having this diagnosis will give your husband more points on his UKELD score which should push him up the waiting list. Best wishes. Mike
I guess the consultant has already given you all the information on transplants for cancer patients but here's what I've been told. The waiting list is made up of three groups (at least in Birmingham): The urgent group is made up of people who need a liver for long term survival; the priority group is for those who's condition is likely to mean that they won't be able to last as long and this group usually includes those with primary cancer of the liver; and the third group are super priority for whom days are important and include those who had had a TP that has failed. The UKELD score doesn't usually apply for those who have cancer (my case). My consultant also told me that I will be taken off the list if the tumour grows larger than 5cm or if I develop more than two tumours. Sometimes the tumour is easily treated by chemotherapy to reduce it's size and radio-ablation if it can be accessed without damaging surrounding tissues and organs (not in my case). It seems that there are three things that affect the speed of a transplant: How ill you are, the more poorly you are the better quality liver you might need to ensure survival; your blood group, the more common your group the more livers available but the greater demand and finally which sub-group you are in. I've been on the list six weeks and have been offered three opportunities. All three were classed as not of sufficient quality unfortunately. Hope your hubby doesn't have too long to wait now. Good luck, Phil
Sorry to hear you haven't yet had that proper call Phil. Hopefully won't be long now.
Katie xx
Hi I had liver cancer. My MRI picked up 2 tumours which were 3cm in size if more had appeared or if they grew to 5 cm they will not transplant .
I was already on the list then went to priority at Birmingham and prof mutimer and his team got me in 6 days later for a successful Tp. That was 18 months ago and touch wood I haven't had a problem. I was off work 2 months and then went back on reduced hrs at first and a few months later was back full time. I go back to Birmingham outpatients every 10 weeks for check ups.
Hopefully you will be as fortunate. Birmingham were fantastic though couldn't of wished for a better place to be treated.
We are at the Royal Free... The Prof did say that the CT picked up one.. MRI will determine any others etc...
Thank you so much for taking the time to reply... We have been so anxious and are extremely overwhelmed with all sorts of feelings...
Hi Pear, yes I had a 1.6cm tumour successfully removed by surgery 4 years ago. But in your husbands case surgery is not an option as his liver is in too poor a condition. As others have said this should bump him up the list and the TACE treatment is to keep the cancer under control and within the TP limits until such time as a donor liver is found. My best wishes to you both, what a rollercoaster this is for you.
You are right, the Prof said they will use a technique which involves a needle and then isolating it followed by something which burns it.. He said it would be like microwaving...
Just having you all here sharing your experiences is giving me some clarity and comfort... We are both so frightened..
That is the procedure I am about to have. I was terrified but people's experiences here calmed me. Best of luck.
Why is this post here, its two years old, thats shown in a very light almost not noticable font color
All posts no matter how old remain on the forum and sometimes if you've searched something then other relevant posts show up in a 'related posts' box at the side. You've then obviously gone into that and reactivated the thread by posting. Thankfully as we now know Pears hubby went onto have first one then a second transplant & is still battling on. 
Katie x
Thoughts with you both though providing but don't get overly frightened you may well find a call comes sooner rather than later for hubby's transplant especially after his already long wait. I would imagine the appearance of a tumour will have jumped him up the list (the UKELD scale goes by the by once any tumour is found) and the current plan for shrinking the tumour is to keep it below the size cut off for transplant - it is why our love ones with cirrhosis have the regular scanning to keep on top of these nasties should they appear. Our transplant docs have always said that cirrhotic liver tissue is always treated as pre-cancerous cells and its why AFP levels in blood and the regular scans are done. When caught in time it is treatable or indeed a transplant should get rid.
All the best to you both and best wishes for a speedy transplant now that this has come to light.
Love Katie xx
Thank you... I had read on the internet that this sort of tumour is extremely dangerous as it quickly spreads... I try not to look at any other sites than the BLT but the one time i choose to look, i come across this awful prognosis... I didn't say anything to my husband about it, but i think he picked up on my anxiety... I have talked to him about all the things you all have said.. It is reassuring and because you have first hand experience, your advice is so valuable... Thank you from both of.us...
Could anyone tell me how quickly does it spread to other parts of your body?
Thank you
Goodness I doubt anyone can answer that for sure. Its a complicated process, and can be dependent on how the malignant cells travel, i.e by the blood, by the lymphatic system or by growing and breaking off from the original tumour. From what I remember the most common places for liver mets are the lungs and the bones.
We have at last been able to speak to a specialist nurse.. We have been told that the tumours, which will need to be confirmed through MRI, are very small and early stages... They are not at risk of spreading... So the main concern is to keep them small just like quite a few of you have said...
Glad to hear you have had some professional advice and support Pear. It's easy I'm sure to get concerned about a possible future outcome of each new development, but try to stay focused on the main plan which is keeping your husband eligible for TP. Because we have an opt-in rather than opt-out organ donation system in the UK it restricts the availability of organs. Also as far as I understand it (and you and Ayreshire know so much more than me) the donor has to die in hospital for organs to be harvested, so all those potential donors who die outside of the hospital or hospice environment arent added to the list of availability. It must be horrendous for you all this waiting and I can only keep my fingers crossed that soon you will come on here and tell us that you have had 'the call' and everything is underway.
Thanks Bolly, we've a long wait ahead like you say - its down to the shortage of available (and suitable donor organs). It means that only those with highest priority can get and sadly this means folks like my hubby who although very poorly and with no chance of improvement without a transplant will have to wait until he is much more poorly before his chance arrives - not much fun waiting to let your health deteriorate, wondering how much more poorly you have to be. We are back at the transplant clinic tomorrow so we'll see how his bloods etc. are doing then.
You are quite right about the organs only being 'gifted' by those who die in hospital - normally it is people who've been on life support systems who are brain deceased (these are the best organs and can be transplanted within a 12 hour window), cardiac deceased organs have to be transplanted in 6 hours as the organ wasn't having blood pumped through it before donation. Sadly as many recipients and those listed find out often an organ isn't as good as first thought and if it isn't then it won't be used which can mean multiple false calls before a suitable liver is found.
We just have to trust that the system works and when the need really arises then hopefully a liver will be found in time. I can't bear to think of the alternative to be honest. I dearly hope to live a long and happy life with my hubby - we've only been married 2 years and i've never known him well so fingers crossed he gets a new liver and a new life before too long.
Best wishes to all of those waiting.
Katie xx
It is quite easy ignore all the nightmare outcomes... And i guess.we had been ignoring it... And just hope it never kind of comes true...
I pray that we all are blessed with the call we are waiting for...
There was a tv programme not long ago that I watched on BBC "The Human Tissue Sqaud" about the teams who work not with organ donations but tissue donation such as skin, tendons, heart valves, etc. I cant remember the exact figure but it was something like one person can save or enhance or extend over 50 lives. I know it may be religiously or ethically impossible for some people and some families to consider donation, and for some the question 'will they allow their relative to be a donor' can be at a distressing time. But what a wonderful gift - over 50 people helped. Unfortunately I have too much wrong with too many parts of me to be of much use, as you say Katie, the donated bits need to be tip top, but I still have my card in my purse and my name on the list, just in case
We are due to go in tomorrow for MRI and a cocktail of appointments... We kind of put the potential of liver tumours to the deep back of our minds... Now we need to face many other potential problems... My husband has been so hysterical, only calmed down slightly today... The compassion shown by all on this site reminds me everyday of how this terrible disease has put me in touch with some truly awesome people... Thank you
We have been told that there is definitely the one tumour...
I'm so lost and devastated... He really needs a transplant more than anything now... Will he get one in time... Or will there be more nasties in store? These are questions just running through my head...
we have to go in on Monday and they said they will begin the treatment in the next couple of weeks...
A very broken pear :/
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