I have just had been sent for a CT sca... - British Liver Trust
I have just had been sent for a CT scan, I have Hep C One of my tests came back with Alphafeto protein. Should I be freaking out .
Hi AFP is one of the blood test results which is routinely measured in liver units. It is just part of a whole mixture of tests which need to be looked at by the hepatologists - so it depends on the results of the AFP tests and all the other tests. Good luck
Thanks, I'll try to keep calm, I'm getting good at this waiting game anyway 
What was the figure given for the AFP?
It's not a 'routine' test, but is normally done alongside CT imaging if you have cirrhosis caused by your HCV and are being kept an eye on for risk of HCC. (sorry gamesmaker, its only 'routine' if you are having surveillance monitoring for HCC but as an abbreviation is easily confused with ALP or ALT which are part of the liver function panel)
I have had AFP checked routinely for a long time, as part of my NASH investigations - but never had a CT. (I had MRI and U/S though). My GP checks AFP between hospital visits. Mine was checked even before I had cirrhosis. I think hospitals differ - I have definately not confused with ALP or ALT as I know the different abbreviations.
I'll agree with you on that gamesmaker, my hubby also has AFP checked during his regular blood results, he has cirrhosis too. He has never had a CT scan or MRI scan just 6 monthly ultrasounds. AFP and ultrasound can obviously highlight the formation of hepatic carcinoma lesions and the protein it gives off and the reason it is done so regularly is because when caught early (as it would be if tests are done often) then it is manageable and very treatable.
The hospital sent me a letter saying the CT scan shows an abnormality.......It says....." it is possible that this is a type of growth in the liver that we get in people with chronic hepatitis and scarring of liver ( cirrhosis ). The scans are being looked at urgently by our heptobiliary team. Once we have a better view we should have a better idea of the next investigations that are needed. " The letter goes on to say, " This is an Important abnormality to pursue and at the moment means that the hepatitis C should be on the back burner until we are a bit clearer.
I don't know what the AFP numbers are yet.
Hi coastie. That all makes sense to me - is there any part of it you feel you don't understand?
When I read up about AFP , I started to get concerned about liver cancer, so my fears were really exacerbated by that. I also received the letter after I posted the question. I am still concerned that my condition is irreversible, I just fancy some good news for a change I am trying to look after myself though and that is helping.
Thanks.
By the way I am also on the Nomads forum, ( a newbie ) so some of my postings may be replicated on that site also.
I have my AFP checked too, along with 6-monthly imaging. Because the risk of HCC is higher with viral hepatitis (i.e B and C), high alcohol consumption, haemochromatosis, and NASH, it's patients with these + cirrhosis that will be more likely to have AFP screening than patients with autoimmune and PBC where its still possible to develop cirrhosis but less likely this will lead to HCC. As Coastie has both Hep C and what sounds like cirrhosis from her CT scan report, that's probably why she had the AFP test too. But it's not 'routine' in those without a diagnosis of cirrhosis in the way that the Liver function and Full blood count tests are run on pretty much everyone with symptoms or a diagnosis of liver problems.
Hope you are getting lots of support and useful feedback on Nomads Coastie. Its probably the best UK forum for those with Hep C.
As an afterthought - the Hep C is reversible through treatment, do you know which genotype you have and have treatment options been discussed with you by your liver specialist? Statistically treatment times are longer for those with cirrhosis, I guess to make sure the dragon has been thoroughly slayed, but it's still possible to clear. I think the jury is still out as to whether cirrhosis is reversible or not, it seems to depend on which liver specialist you talk to or which research report you read, but certainly clearing the virus can slow the progress of cirrhosis. The hospital is right though, you wont be eligible to treat while there is uncertainty what the CT scan has picked up.
I talked to the one of my doctors associates today. I still don't know my Genotype , ( forgot to ask, I was in Tesco's when he rang ).
I have a 10cm growth on my liver in one section, they want to look into it further and I am meeting with the surgeons on Nov 6th. I am really at my wits end, the waiting and the worry are wearing me down, but, tomorrows another day, I'm reluctant to google Hepatomas,liver cancer ect.......... It just spins my head around , but I will try to later, when I settle down a bit and get used to the news.
Thanks
BTW Bolly I'm a bloke
Oops sorry coastie! Not sure googling liver cancer will give you the answers you need right now, will probably just cause more angst. All I can say is from personal experience, you will be (or are being) fast tracked through the process of imaging (you've had that done) and now hopefully a full and frank discussion about what the imaging shows and what the 'plan' is for you, depending on what the diagnosis is. Hopefully an appointment is already being made for you to return to the hospital where you had the scan to discuss the results with the liver specialist. Waiting is the worst, unfortunately it comes with the disease. Be thankful we have the good ol' NHS and that, slow and lumbering and stretched to the limit though it is, everything that has been and will be done for you is free. What happened to me was, having had in my case an AFP result which was above 'normal' and with a history of viral hepatitis, I was sent for a CT which discovered 'something' and then an MRI pretty soon after which was enough for a conclusive diagnosis. Within a month after that I had surgery and am now 3 years post surgery.
From diagnosis to surgery it was all pretty surreal and I don't think I had a real grasp of the situation, just went with the flow and agreed to whatever was suggested at the time. However ... have since learned that not all lumps bumps and lesions discovered on CT turn out to be HCC (mine was confirmed by biopsy AFTER surgery, don't let them poke a needle into you before any treatment!), so hang on to that hope in your mind. If it does turn out to be an HCC, then in most cases some sort of treatment option will be offered, though not always surgery. Have they definitely said 10cm and not 10mm as 10cm sounds quite large?
Thanks Bolly, that settles me down a bit. I do have an appointment set for Nov 6 th with the Heptobiliary team, then another appt. on Nov 13th with my specialist. They did just give me a call asking whether I had been given a scan for my chest, as far as I know I hadn't so they are scheduling that in also, I'm not sure why but I got the impression it was routine.
I think the chap said 10cm but I can't be sure, i wasn't in the best environment to take a call, so hopefully I misheard, he did say it was only in one section of the liver though ?
Surreal would be the right word for the world I am living in right now, but thank god for the NHS, I would have been screwed if I had stayed in the US.
May I ask about your surgery experience as something tells me this is on the cards ?
Thanks.
I guess the Hepatobiliary apt will discuss the results of the CT and what to do next. Your specialist I presume is the one you have been seeing for the viral Hep C, and should continue to be involved in your care though, as you have probably already been told on the Nomads site, its unusual to be considered for HCV treatment if there is a suspicion of something like HCC, so the HCV will be on the back burner for now with the focus on what to do about this growth.
The 'only in one section' is positive, the '10cm' not quite so, I hope its something you misheard and its 10mm instead. The most effective treatment for liver cancer is surgery, and (according to what I've been told and according to the British Liver Trust) is currently the treatment that gives the best chance of a cure. It's easy in these stressful circumstances for the brain to hear the word 'treatment' and convert it into the word 'cure'. Whether you will be suitable for surgery depends on a number of factors including the size and position of the 'growth'; and whether the rest of your liver is healthy enough to regrow and compensate for the missing section or lobe that surgery will remove. Other treatment options include things like injecting directly into the liver with chemicals or using extreme heat, or types of chemo.
I was 'lucky' (lol) that I had a 1.6cm growth on the outside surface of the liver that was encapsulated and hadn't spread into other tissue or blood stream and could be popped off like shelling a pea without taking too much of the liver segment with it. My surgery was done via laparoscope so I had a shorter recovery time than someone who had conventional abdominal surgery, I was home again in 4 days. I had a lovely Macmillan Nurse who talked me through the whole procedure beforehand and was on hand 24/7 via bleeper or mobile if I had any worries or questions. Not sure if every hospital has these, where are you being treated?
Hi Bolly, do you remember me? We were chatting until I mentioned that I was excluded from the new treatment for HCV because of certain factors? Well my doc doc has now asked for me to be considered and I had my first appointment last Saturday and the doc doc has asked me to be pro-active and find out all the details, year, date, results etc. of my HCV Drug Trial. I think I was on the first one and so I have already done a lot of work on this. I bet you are surprised . Best wishes.
Hi Tatjana. Yes I remember you! Hello again. You were around when Daisy (I think) was seeking support, though she seems to have vanished at the moment. Glad to hear you are being given a second go at treatment. As a Geno 1 non-responder I cant see a reason why you shouldn't treat with the new Triple treatment. Probably your cirrhosis (cant actually remember if you have this), and your history of cysts/resection will be checked again to make sure you are up to the treatment, but I hope you get the go-ahead.
I posted this on the Nomad site, so I just copied and pasted it here.......sorry for the laziness on my part, but we are a bit down at the moment............
Well I'm afraid the news is not good, I have a growth on the liver, yes it's primary cancer, it's too large to operate on.......so I will have to go on either chemo, ( tablets ). Or radiotherapy , ( which may not be possible ).
Anyway I've been given a year, maybe more , maybe less. I'm in good health and the cancer isn't anywhere else.
I'm sorry I can't write more right now, we only found out a short while ago. But I will get back to you.
thanks
love and Peace
Mick
Hi Mick, just noticed your text, we have been in contact, I do still have your details and we spoke when your visitor arrived. I would like to keep in touch. Best wishes and cyber hugs. xx
