Within the space of three months my poor hubby has found out that he has cirrhosis of the liver due to hepatitis B and not only cirrhosis but also four HCC tumours ( the largest is 4 cm) ( all because of abundant ascites) ( i had previously put it down to simply being 'portly' and just 'wind')
He has started Entecavir Baraclude to get his vey active viral load down. In the specialists letter another to local specialist he says that that the liver needs to improve to Childs B7 or better before anything can be done for the HCC. Presently at B9 -
I have been scouring this forum for a month or so already and have drawn a LOT of support from the many posts I have read from everyone with liver problems even if not exactly the same ones. So I have just signed up to be part of this community myself.
Does anyone has any experience of having had to wait for HCC treatment whilst treating something else like hep B ? and how long it might be before liver function improves?
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liveronmymind
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Hi. I've had Hep B for 30+ years but due to various reasons received no treatment until a few years ago. My viral load has always been pretty low, only in the 100's, and years ago the protocol was that low viral loads were not treated. However I progressed to cirrhosis and then HCC in 2010. I'm told now that ALL HBV positive patients are treated, how ironic!! I'm on Tenofovir which is the newest drug and seems to be keeping my viral load undetectable.
I was diagnosed with a single HCC 1.3 tumour on the outer edge of one liver segment. BEFORE I was put on the Tenofovir I was whisked into hospital to have a liver resection and had the tumour and one segment of my liver removed. I needed no chemo post surgery as the cancer had not spread to surrounding tissue, and chemo treatments for HCC are pretty poor anyway. It was a while after the surgery that I started the HBV treatment. I'm Childs Pugh A. It may be that surgery is too risky for someone of Childs Pugh B. There are strict criteria for surgery which include the liver health, the level of cirrhosis (the liver bleeds so easily a badly scarred liver could just cause the patient to bleed to death), how many and how big the tumours, how many segments they involve etc etc. My guess is that your husbands liver health needs to improve before they could risk surgery, and the Entecavir should help the liver health. How long will it take to improve is impossible to answer I'm afraid.
Hi Bolly, Thank you SO much for your long and explicative answer and for taking the trouble to do so.
It's a great shame that you weren't able to get anti viral treatment even for a low viral load which would have stopped you from having got cirrhossis and so on especially as yours could have been prevented since you knew about it. But lucky they caught it in time.
Yes, I suppose like you say they don't want to risk doing anything to a failing liver. So that's why we have to wait.
I think I read somewhere that it takes about six months anti viraltreatment for any noticable results to become obvious so far as any, if any, of the livers recompensation is concerned .
But, by that time who knows how bad the cancer will have become.
You said that chemo tratments are pretty poor, did you mean the TACE procedure ? as that is the only option left to my husband anyway ( provided there is no metastase) elsewhere - which is possible as the specialist said they had picked up a shadow on the backbone. Husband had bone scan a couple of weeks ago for that too. We have an appointment for the 29th so I don't know either whether we would have heard something about it if it had metastised or whether they are just waiting to bombshell us with that at the next meeting. In fact the specialist said that if it had metastised " there is nothing else I can do for you" - not even TACE - which seemed a rather harsh thing to say.
I'm wondering what will happen if it has metastised and I just don't want to even consider this possibility. It's not good news having HCC but that would be devastating .
Thank you again Bolly for having replied to my post x
The chemotherapy treatment that was discussed with me 5 years ago was Sofosbuvir. It doesnt have a great success rate, and anyway the docs decided I didnt need any 'mopping' up with chemo to catch any little 'bu**ers' that might have escaped during surgery, as my tumour was in a capsule on the outer edge of the liver and could be popped off a bit like a pea.
TACE is different and is the most common treatment offered if surgery is a no no. I think they inject the drug into the tumour direct, whereas Sofosbuvir would be IV into your bloodstream. TACE sort of shrinks or fries or burns the tumour I think.
However its not without risk or discomfort and if your husband's cancer has spread to his bones, blood or lymphatic system, then removing the tumours from his liver will not remove the cancer from his body.
I would get in touch with the British Liver Trust via their website. They have a leaflet that is downloadable or readable online that describes different liver cancer treatment options. Try and get yourself up to date on the latest treatments, so that at your next meeting with the specialist you can at least say, can we try this, or why cant we try that. Then at least you will know you have explored all avenues.
HBV is a real nasty one, and does have a high probability of leading to cancer. I cant remember if I have asked already, but have you and close family members been tested and vaccinated.
Please keep in touch and let us know how you get on at the 29th clinic.
Thank you for your advice and directions. I went and had a look as you said at the downloadable brochures and downloaded and read. it's very informative and as you say it's necessary to know the options to be able to ask.
I suppose the hepatologist knows best and will do and wants to do the best he can! Thats what the S Nurse said afterwards. I did ask him about radiofrequency and he said that he didnt want to burn holes in my husbands liver .
I think the worst bit was being shown a shadow on the spine on the hepatologists screen and him saying " we have concerns that it may have metastised already" if this is the case then there is nothing I an do! The S nurse said she was hoping and praying it was nothing. Then they could do TACE which sounds a lot better than general chemotherapy which is all that would be offered I suppose if it had metastised. Do you know which department would be doing it if ths was the case? But I hope and pray it's not. I would rather know by email rather than waiting in the waiting room heart thumping with anxiety. I wish I could know beforehand to come to terms gently ( but hpefully it's not) The first radiologist who did the full bone scan said I don't think there is any need to do the second local scan but then the other radiologist said "the doctor has requested it be done so i'm doing it" These words instilled a false hope maybe? Oh dear.....! but they are not allowed to say anything so don't know really!
Yes. Horrible Hepatitis B
It looks like hubby has had it for a long time based on the damage it's done but it never got detected and he never knew anything about it!
We haven't said anything to our children yet (two of them in their thirties the others in their twenties) until we know what's going on yet cancerwise and don' want to worry and upset them yet. But, it would be selfish not to tell them at least about the hep B so are going to tell them and to get themselves tested etc. I myself went last week to the GP for a blood test to see about myself so will hear next week about that.
Thank you Bolly for reading all this and for reaching out.
It was good news on the 29th June as the specialist said it didn't appear to be cancer on the backbone but a hemangioma! a sort of blood blister. It's amazing how one can feel relieved even in adversity ( having the HCC to start with!) But it was a big relief so now it's just a case of ****" watchful waiting"**** as they called it.
Another CT scan to be done in two weeks time to see what's happening ...... and blood tests were done to see if there is any improvement anywhere. ( don't know the results yet)
Specialist was friendly and cheerier this time! and I think as soon as the liver recompensates will consider local treatment.
I think the ascites seems to be under control with dieuretics.
By the way I had the check for hep B but appear to just have antibodies and not antigens so theyve arranged for a vaccination! (is it really worth it at my stage of life?!)
Will be suggesting our family gets checked but not just yet.
That must be a big relief all round. Now you can focus on one thing and not worry about too many at the same time. Presume the CT scan and blood tests are to monitor the HCC. Is there a treatment plan for the Hep B yet?
I still get muddled by the various Hep B blood tests. From what I remember, there are 2 different Hep B antibodies:
1) The Surface Antibody (HBsAb or anti-HBs) which is formed in response to the hepatitis B virus. Your body can make this antibody if you have been vaccinated, (which you haven't) or if this test is positive, can mean you have recovered from an acute hepatitis B infection.
2). The Core Antibody (HBcAb or anti-HBc): A positive test indicates that a person may have been exposed to the hepatitis B virus.
They would look for antigens as evidence of recent infection, and finding none would recommend the vaccination. However I thought that one could have passed the acute phase and moved into the chronic phase with a positive ++ Surface antibody present.
You would be antigen AND antibody negative if you had never been infected.
Thats how I interpret the Hep B Foundation chart anyway, but it is confusing and I may be wrong.
If your husband is in the care of a hepatologist then yes they will know what options are available on the NHS better than a gastroenterologist or general surgeon. Because I was a surgical case initially, I was put under the care of a hepatobilliary surgeon. It was after the surgery and with ongoing liver problems this time caused by autoimmune hepatitis that I was then transferred to a clinical hepatologist, i.e one who understands how to treat rather than operate.
During the lead up to surgery and for some time afterward I was also assigned a Macmillan Nurse. Is that what you mean by an "S Nurse" (specialist nurse)?
I remember her as being very informative and supportive but my husband remembers her as scaring him silly as she gave him the worst case scenario!
If it was prostate cancer or testicular cancer, then I'm sure surgery would be an option. But after so many years of damage your husbands liver sounds like it cant be operated on, he would bleed to death on the operating table. I had a pea sized tumour and it took near on 6 hours to remove it because of all the cauterizing the surgeon had to do with blood vessels etc to stop the liver bleeding out.
I spent years trying to work out how I became infected and never got an answer. The docs always ask about drug use and sexual activity, but I know for sure it was not those. It could have been dental treatment in the 60's when dentists were not so clued up on sterilisation. It could have been ear piercing. But it wasnt til my hepatologist did a genotype test which showed where in the world my 'type' of HBV is most prevalent that we came up with East Africa. I do remember feeling fluey and ill for a day during a trip there the year before I was diagnosed. I more recently read a medical research document that discovered bed bugs can keep infected blood in their bodies long enough to re-infect humans with another bite - yuk, but now the most likely route of my infection.
Unfortunately there is much stigma attached to blood borne hepatitis, and when/if you tell your family be prepared for a negative reaction. However I do recommend you give them enough information for them to choose whether to get tested or not for the antibodies. I would have thought there would have been signs of illness among you by now, but you just cant tell from the outside if someone has the virus. Its most common form of transmission is from mother to baby, could that be a possibility in your husbands case. Did he travel abroad much, are there any clues in his past.
The waiting for tests, the waiting for results, the waiting to find out what the treatment plan is is awful, just the worst, and I empathise with you and your family. Try and keep busy to keep it at the back of your mind if you can, and if you like doing medical research, then research research research, but only genuine peer reviewed publications please or you will scare yourself silly with Mr Google.
Anything you want to ask, please do, I check Health Unlocked most days.
Awww, Thank you for that reply which even had me lol once or twice as in the case of Mr Google! as yes i've read some pretty scary things already although 'You Tube' has a lot of ' hope' and 'success despite of all' stories!
I really am in a state of turmoil mindwise!
Like yourself we've no idea where it came from! Husband never having had any untoward 'doings' ( as far as i know!!- (joke) - It might even be from myself not because of any shady lifestyle but like you say have had plenty of dental treatment done and in other countries too! Surely dentists can't sterilise everything like if speks of blood spray into the air and land on the body of the drills themselves . Not everything can be sterilised! Also barbers shops abroad who use gillette blades for shaving hair or even scissors etc??!!
Also we too have both been bitten by bedbugs too! they are horrible things!
I think our nurse is just a Specialist nurse although not sure whether she is a Macmillan one or not. But I don't think so. She was kind and pleasant though but we had the feeling that you go into the hepatologists for the hard cold facts then you get ushered into the nurses room for her to make you feel human again! It may not be the same for everyone though of course! but she was very helpful ( not scary, the hepatologist was though!)
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