wonder if anyone has been diagnosed with this. Awiting for another MRI which I thought was going to be done but it was a ct and told that there is a tumour and they want me to have another test so its another wait which is getting me down. Was told that will probably have embolization. And additionally liver transplant.
I keep looking at the websites and now decided not to look up anymore.
Hi daisy. Sorry to hear this diagnosis. I was diagnosed with HCC 2/12 years ago. Have you been back to see your specialist to discuss the diagnosis and options, I guess so. Perhaps they are doing the MRI to make a final decision on how to treat. Surgery/liver resection might be another option rather than embolization, but it will depend on where the tumour is, and the health or otherwise of the surrounding part of your liver.
What questions do you have? I'll answer anything I can. I had a resection to remove my tumour, but I know people who have had TACE and others who have had embolization.
Thank you for replying. Due to go back 2 weeks time and hopefully have had MRI done, quite truthfully I do not think I was told in a manner that I would have liked, firstly my hubby was not with me, and then was told that the nurse can answer any questions. At this point I was not told until nurse said. Afterwards I went home and my hubby said we will pay private to have MRI so I rang the nurse and she knew all about me and said had the doctor given me literature which he had not so she sent and she said TACE - what is the difference between TACE and embolization? Apparently I have a very nodular liver which has been like it for years and then last year was suffering from stitch like pains over liver and they did ultrasounds and it was only the new doctor who sent me for other tests. Anyway I have AIH/PBC/PORTAL VEIN AND APS so as you can imagine I am quite scared. Is it one drug that is put into the said part?
Sorry to be so down like this, but what with the GP not knowing as she said she would have usually got a call, she is supportive. Why does everything happen at weekends and bank holidays????????????
HI Daisy
I want to share something with you. November 2nd 2012 after every test possible I was diagnosed with HCC. I was given the choice of Liver Resection,decided on Liver Resection like Bolly. Had Liver Resection on 4th January this year. When the surgeon came on his round and I was scarcely compus mentus (hubby was with me) I was told that now he did not think I had HCC but Extra Nodal Marginal Zone Lymphoma but that I had to wait for histology to confirm. It got me thinking 'why did I have a resection, was it really necessary? I discussed this with my surgeon and another doctor and from their answers I realised that I had chosen the best option for me. After a 'wait' I had it confirmed that I had ENMZL and not HCC.
I really do know how you are feeling, all the waiting - there is always waiting. Waiting for the Ultra Sound result, then the MRI, then the CT, then the Biopsy, then the Contrast Ultrasound, etc. What I am trying to give you is hope, it worked out better for me and it can for you also. You must remember after full discussions (I wrote all my questions down on paper) you must be given the options, Liver Resection, Embolization,Chemo etc. Remember, the choice, after investigating the health of your liver and your options with the Surgeon, is yours.
What Bolly said about it depending where the tumour is and the health of the surrounding liver is totally correct. A liver biopsy will give you that answer. They do not take a biopsy from the tumour.
As for the way you were told, I think it is disgusting. First I saw the registrar with my husband and he sort of told me - he was very sympathetic how he spoke and I had to ask 'Are you telling me that I have Liver C' and he said yes. Then my usual consultant joined us and said that I was being transferred to a Specialist Hospital and it went on from there.
Can I please give you an invisible hug.
Hi again Daisy. Everything Tatjana said is correct. I know you must feel battered by this news, try to take a few breaths and sit down with hubby to discuss options. There are a number of treatment options for primary liver cancer. Surgery or transplant offer the best cure. My view is that with surgery (resection) the date is there in your diary, its usually only a few weeks after diagnosis, and then with a mix of surgical skill and luck you are on the road to remission and cure. With transplant .. who knows when a suitable organ may be available, if ever. Anyway, that's just my view.
I would avoid agreeing to having the tumour biopsied while still in situ. I was advised by my specialists that poking a needle into a tumour risked seeding it elsewhere. An MRI can distinguish between tumours and nodules and cysts etc and should give an accurate enough diagnosis for treatment to be decided on, without any risk to you.
Treatment options, as I said, do depend on where the tumour is, the stage of the tumour, and the overall health of your liver (and you!) Options to reduce the size of the tumour (or zap it completely) include TACE where a chemo type drug is injected into the main liver artery; Embolisation where the blood supply to the tumour is cut off; Cryosurgery where the tumour is frozen; and RFA or radiofrequency ablation using heat.
I'd be asking my specialist to go through these options with me (if they say surgery isn't an option because of the position of the tumour) telling me the pros and cons of each for Daisy and for Daisy's tumour position etc. If your specialist is only offering emobolisation because that's all his hospital does, but you feel one of the other options is better, then find out where the other procedures are carried out and email the consultants (via their secretaries, you'd be surprised what you can find out on the internet!)
Take advantage of the Bank Holiday to do as much research as you can.
Here is a link to the British Liver Trust leaflet on HCC 79.170.44.126/britishlivert...
The leaflet is downloadable.
There is also a really good AIH support forum at autoimmunehepatitis.co.uk
Like you I had a bum deal with being told about the cancer. My specialist rang me on my mobile while I was at work! In retrospect, I'm glad he got hold of me asap and told me straight, rather than hang around for a suitable time. I wanted something done fast, no dilly dallying about.
Tatjana - sorry to hear you went through surgery thinking you had cancer. I guess the thinking may have been better to be safe than sorry on your medics part, but that's no excuse for a misdiagnosis. I've know a couple of people where there had been uncertainty as to whether they had HCC or Fibrolamellar, and went through surgery. The liver regenerates pretty quick, so hopefully by now yours has regrown to its original mass.
Hope you are recovering ok. Cyber hugs to you too, lol!
Bolly, I reciprocate and thank you for the hugs. You know what you said about not having a biopsy on the tumour itself, I totally agree with that. I did not have my tumour biopsied because I was also advised by my surgeon that the C could seed elsewhere and he also made a point of saying that the biopsy was taken from a safe place. It worries me a bit what you said. Do you agree that a biopsy can be taken from a different unaffected part of the liver safely and that if Daisy could also be assured that were it would be taken is safe, then she could go ahead? I would so appreciate your views. Cyber hugs to you and Daisy.
Hi tatjana. Yours sounds like an unusual case. It seems its not common to find lymphoma in the liver. The stomach/intestine is more usual as it seems to have a connection with the H.pylori bacteria found in the gut. So perhaps not surprising you had a misdiagnosis as the radiographer/histopathologist would have been initially lookong for more common liver disease such as cysts or tumours. Would you have been treated with radiation rather than surgery if the diagnosis had been different?
Should daisy have a biopsy to confirm hers is HCC? Liver biopsies are invasive, sometimes uncomfortable, and not without risk. An MRI with contrast can pick up/diagnose an HCC tumour, making a biopsy uneccessary. I'm not sure that taking a biopsy tissue sample from elsewhere in the liver would tell you if the suspicious area was HCC or not. It will be a post surgery biopsy of the tumour that confirms stage/grade/type etc. A tissue sample from elsewhere in the liver would diagnose/confirm the underlying liver disease but Daisy already knows she has AIH/PBC overlap (though I cant remember if she has ever had a biopsy to confirm this or if its based on blood tests/medical history). I dont know if the TACE procedure daisy has been offered includes taking a tissue sample at the same time, or if the treatment goes ahead based on an MRI scan.
AIH on its own doesnt commonly lead to liver cancer, but I dont know if the PBC overlap makes a difference. On the other hand daisy was left untreated for many years for the AIH and only recently started on meds for it. She already had symptoms of cirrhosis, and what she describes as a 'nodular' liver for many years. It may be the degree of cirrhosis and the state of the liver tissue that makes surgery too risky. I still think she should be given more information on options rather than just told 'we are doing this'.
I was immediately allocated a nurse on diagnosis, a Macmillan nurse, who was lovely and was patient and well informed. It was nicer getting the info from her than direct from a surgeon/medic as she had more time and went patiently through the prodedures, what would happen next. I hope Daisy's nurse is a Macmillan nurse too.
Bolly, you talk a lot of sense. You are totally correct - what I had is very rare - I think I am one in a thousand. My eminent surgeon said that he had met one person with what I had. Last week the doc who did the stitching said he never met anyone with a primary lymphoma of the liver like mine. Forty years ago next month I had a baby, left too long in labour, baby was yanked out because of distress. Seven days later in hospital I lost 14 pints. In those days the blood was not tested. Whenever I went to my GP because I felt ill, he thought it was all in the mind. In 1991 I found out I had HCV. My GP actually apologised for not believing me! I do not drink. Went on a drugs trial in 1997 (genome 1A) which did not work. Oct 2012 was told I had HCC then Jan 2013 diagnosis changed. I have been told I have fibrosis, no cirrhosis I also have my own nurse attached to the hospital.
I also hope that Daisy is treated with more respect. I was lucky and still am whenever I have an appointment. I think Daisy needs lots of hugs and support and I will be there for her, all the way, you too Bolly.
Thank you again for your comments, they made me feel a bit happier about my present situation which is 'wait and see.'
Hi again Tatjana. There must be a lot of women unaware they have HCV due to blood transfusions during emergency caesarean before bloods were tested. Anita Roddick is the most famous.
I too have been made to feel I must have indulged in risky behaviour (IV drugs or unprotected sex) to have contracted Hep B in my teens. My medics have only just come to agree that I must have picked it up some other way in East Africa, as that's where my genotype comes from.
Anyway, that is irrelevant history, but interesting to me all the same!
Are you aware of the new treatments for Geno 1s, that include Protease inhibitors. Is your team recommending you leave the HCV untreated (this means you will eventually progress to cirrhosis and end stage liver disease) or have they put the option of treating again on the table.
Waiting and seeing is not always the best option for a progressive disease like HCV. Its easier to treat with either no fibrosis or a bit of fibrosis, but much harder to clear if that has been allowed to progress to cirrhosis.
Your surgeon will be best placed to keep an eye on any recurring damage in your liver that might need his skills, but he is not the best person to treat HCV, in fact that's not his area at all. Are you under a hepatologist for the HCV?
Hi Bolly the waiting and seeing refers to the C (Lymphoma) I think they will try to help my HCV but they are waiting until I have got over my op. I have been untreated for 40 years and still have only fibrosis. They know they should have given me regular ultra sounds but, my heptologist told me that the criteria for those was cirrhosis which I do not have. I think they might change their criteria now LOL! I had a pain in Turkey which told me to go to the Hospital. They did ultra sound there. I cheekily said 'so everything is OK and the radiologist said 'you have a mass on your liver.' Just lying there that is how I found out. I stayed for the rest of my holiday!
I did see on the notice board about a drugs trial for HCV. Phoned spoke to the doc. Very polite but, I think I am precluded NOW because of the Lymphoma and, AGE??
I do have a haematologist but my Heptologist is still keeping an eye on me. If I am not on this website for a few days (month) it is because I am flying today abroad. Best wishes to you and Daisy I replied to your new message without coming to this page first. Cyber hugs to all.
Well I am waiting patiently for nurse and doctor to phone me, but nothing! My GP said she was going to ring local Hep dept to find out what is going on as usually she is telephoned to say about urgent cases, but still waiting. I have been researching over this bank holiday and there is a surgeon who is the best in UK to see if there is anything else other than TACE and minimal blood loss as I suffer from a clotting problem and I am on warfarin. Just sent email
Good to hear from you Daisy. Glad you have some details of a surgeon. If you don't get a reply from him/his secretary by the end of the week, ping off another email, or ring the secretary.
If you don't hear anything from your GP today ring them as well.
With the NHS, good things don't always come to those who wait (patiently or otherwise!). You have to become the worlds best nag - keep at 'em gal.
Re the warfarin, I don't know for sure as I'm not medically trained, but they may get round this by taking you off the warfarin for a period before the procedure. But I think you are very wise looking into this aspect. The clotting problem may be why you are not eligible for surgery, as the liver is a very 'bloody' organ to operate on.
TUMOUR HCC (cancer) No transplant. No treatment. I can’t accept this.How do I get to see another hepatologist just for 2nd opinion and the choice of methods for HCCAPOINTMENT DAY HAS ARRIVED - HCC and then transplant
6 months routine HCC liver monitoring results 
Diagnosed with cancer (HCC) just from a scan? 
