Hi, diagnosed 13 years ago at 24 with Cirrhosis as a result of Hemochromatosis, had a US last week and the Radiographer started asking me about if I had a Biopsy previously and seemed concerned, no one has ever mentioned a biopsy scar, my Gastro mentioned this and the Correspondence stated ‘3.4cm Hyperechoic lesion????’ I’ve been referred for a CT scan on 4th March, I always believed HCC would come along before failure, my concern at the moment is that my CT is almost a month away, if it is a lesion, it can’t grow more than 5 centimetres otherwise I won’t be listed for Transplant (not assuming I would be allocated one), can anyone shed any light on how quick HCC grows as I’m concerned, the only treatment option for HCC advanced Cirrhosis is a transplant if a) I pass the assessment b) a Liver is available and c) HCC is < 5 cms, the suspected lesion is on my right lobe.
I’ve read masses on the subject since dx but find little literature on what happens if I start to approach the 5 cm threshold.
I’d really appreciate any information, many thanks all and take care x
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tommyc
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Hi tommyc. I had HCC (2 tumours). I had 2 sessions of T.A.C.E which shrunk my tumours and held them stable for 4 years. There are others on this forum that have had the T.A.C.E procedure. I had it done over 4 years ago and I only had my transplant 5 months ago. So don't panic. It's frightening I know when you first get this kind of result and your mind goes into panic and overdrive and you imagine that things are growing at a fast pace when in actual fact it's a lot slower process than you imagine. In the meantime while you wait for scans and tests it is best for your system to eat healthily and don't drink alcohol or do anything to put extra burden on your liver. If you are worried about the time you are waiting for your scan you could ring your specialist's secretary and let them know how anxious you are and see if there is a possibility of having the scan moved forward. Stay in touch with the forum, you will get a lot of support on here and I'm here if I can be of any help with any further questions. All the very best. Alf.
Hi Alf, cheers, that has put my mind at rest, did you have Cirrhosis which induced the HCC or were you completely independent of Liver disease (if you don’t mind me asking)?
I had cirrhosis and my tumours were 4 cm and 2 cm. I had one session of TACE on the larger tumour and then 2 months later I had another session for the smaller tumour and they did the larger one again in that session. The tumours held stable as I said for 4 years. The criteria back then for transplant was different and I was not eligible for transplant. It was when I entered liver failure through cirrhosis early last year that I was offered a transplant, The tumours had not re-grown but they did give some priority for my wait for transplant. I was only 10 weeks on the list before I got my phone call. I am doing very well now thank you and I hope it's not too long before you are travelling the same road, Hang on in there. Alf
My son had a transplant last year due to a HCC which I I believe was 6cms, I thought they had changed the criteria on it? But either way they monitored his for 2 years first and there wasn’t much change in size.
I’m glad he got his Tx, did he wait 2 years due to where he was in the ‘scoring system’ I.e. he was near the top of the waiting list at 2 years post diagnosis and thus got his transplant?
He waited just under 3 weeks. We didn’t really get told much about the scoring system at the time but his consultant did say that she didn’t think the wait would be long. I think it was helped by the fact he needed a right lobe and the majority on the paediatric list are much younger and waiting for left lobes?
I know it’s difficult, but try not to overthink or worry too much. Identifying HCC liver cancer is not always straightforward with hereditary haemachromatosis (HH).
I have HH. Apparently it provides a breeding ground for HHC. My recently diagnosed HCC is 4cm but because it’s driven by HH it’s apparently a less aggressive biology. Just for comparison it was there in 2014 at 1.4cm and so not much movement in 5 years!
This doesn’t mean we shouldn’t be vigilant. Perhaps you can try and bring your scan forward to try and ease your worries?
Even if your lesion is HCC and it’s >5cm they can potentially downsize it with TACE or other treatments.
Other people will come on here and advise who have more direct experience. I’m still waiting for evaluation for treatment.
Cheers Grank, it does, do you have Cirrhosis too? Bit surprised there was nothing six months ago on US and 3.4cm suspicious mass there now, I suppose everyone’s difference, thanks again.
Hi Tom and Grank, sorry to butt in 😁 but I am curious to know what your ferritin levels were prior to cirhossis diagnosis? I hope you don't mind my asking? I've a condition that makes me load iron, I'm under hepagology but still waiting to see what damage it's done. I wish you both all the best for your treatments, Stacie. Xxx
Thank you from both of us (this is Grank’s wife)! It’s been difficult getting to this point, a hard week, but the people in Birmingham have been amazing. Can’t thank them, and all of you, enough! Good night and bless.
I had cirrhosis when diagnosed with HH 30 years ago. Ferritin was 2,000. Cirrhosis was bad.
I was neither a drinker or smoker and the cirrhosis was found to be much improved over time. I had annual checks and ultrasounds. 3/4 of my liver was found to be in good shape 10 years ago.
My venesections for HH we’re terminated 5 years ago when our health board moved the goal posts for ferritin levels (100 -150 instead <50) and annual checks ceased. According to my consultant Cirrhosis has built up again and created a perfect breeding ground for HCC.
I’m hoping that my HCC hasn’t had a growth spurt from 4cm in the last 2 months as I will be ineligible for surgery. It has an adjacent tumour thrombus and both surgery and transplant will be ruled out if the HCC is >5cm. I have a CT scan on Sunday and hopefully it will be good news. If my tumour biology has been slow growing in the last 5 years it doesn’t mean it can’t change.
In that case ask whoever is on your case in Birmingham to bring your scan forward. My husband’s has been brought forward. The sooner treatment can be decided on the better.
I’ve contacted my Gastro regarding the scan, did Grank have symptoms with his Cirrhosis I.e. significant fatigue, poor memory, muscle loss etc, thanks for sharing
No symptoms at all. I’ve had to persuade him to stop building a stone wall because I’m not sure what can happen with his condition (which includes a portal vein tumour thrombus). I couldn’t honestly say whether he is really fit, but it does appear that way.
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High AFP
Results
AIH and Cirrhosis 
Had a CT scan when I had appendix out. Would they mention Cirrhosis if it was there? 
Six month scanxiety.
