British Liver Trust
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HCC?

So today, hubby had an ultrasound of abdomen and ultrasound elastography of liver. He's had ultrasounds before, but never with the elastography element. I'm assuming this is to measure levels of fibrosis. Anyway, when she was checking his details, she mentioned he had HCC. This is not something that we have been told by anyone else, and I asked her what HCC stood for. She fudged the answer (immeditely setting alarm bells off!) and my suspicions were confirmed when we got home and I checked on line - HepatoCellular Carcinoma!!

Surely if he has cancer, his consultant or GP would have said something?

Thankfully, hubby has not picked up on this. We don't see consultant until mid May, and it's not a question I want to ask in front of my husband anyway. Needless to say, my mind is racing. Does anyone know if HCC could stand for something else?

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It is generally medical protocol in a patient with cirrhosis for them to be screened via ultrasound every 6 months to check for the occurance of HCC - cirrhotic tissue is a risk factor for developing liver cancer and if something like HCC has been mentioned from findings in an ultrasound it probably is what you fear.

I would hope that your husband is not going to have to wait until May for follow up .............. I would be requesting an urgent consultation with his specialist (phone the consultants secretary). The reason for this regular scanning is to pick these abnormal changes up quickly because HCC is often treatable when caught soon enough - hence the 6 month recommended interval. Do you know if your husband has had a recent set of blood tests? One of them which should be done is the AFP (Alpha-Fetoprotein) level which is a tumour marker.

Do not wait until May, chase this up and ask for some clarification based on what you've been told (albeit in a cackhanded way). As I say there are often treatments for HCC and if treatment is possible you obviously want this started sooner rather than later.

Wishing you both the very best of luck. Just wondering how old your husband is and whether he would be a potential candidate for transplant.

Katie x

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Unfortunately afp can be negative even if hcc is present. My hubby. Had negative afp but when they removed his liver he had over 10 tumours. Way over the criteria for transplant

Was very lucky. Over 6 years now .no recurrance

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Hi Katie, thanks for your reply. Hubby gets bloods done 6 weekly and sees his consultant 3 monthly - last vist to consultant was 7 February and bloods were taken at that visit. In the past, if there has been a problem with bloods, consultant has asked GP to redo the bloods. This hasn't happened this time, so I have assumed all is relatively well. He gets bloods done at GP in a couple of weeks.

The HCC wasn't mentioned in relation to ultrasound findings - the radiologist said hubby had HCC before she started the procedure!!!!

Will be phoning consultants secretary tomorrow.

My husband is just approaching his 61st birthday. He had liver failure in 1991 and until 2014 was doing really well, it was classed as compensated even though he has portal hypertension. However since 2014 thigs have gone from bad to worse - he had his first acute HE episode, followed by 2 more in 2015. In 2016 his liver was classed as decompensated , end stage. He was also told there was NAFLD and his UKELD was 49. Since then he has been on the 3 monthly visits to consultant and 6 weekly blood tests. There is a continuing low level of encephalopathy all the time, he is on the maximum medication regime (Rifaximin, Lactulose, Propanolol, Omeprazole, Thiamine, Spirinolactone and also Nefopam which is the only painkiller he can tolerate for his osteo arthritis). We have been told that he doesn't yet meet the criteria for referral to be considered for transplant, but at the same time a transplant is the only thing that could make life better for him.

Sorry this is so long

Faith

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Hi Faith, definitely phone your husbands consultant's secretary - you need clarification about this HCC being mentioned and IF he does have it you need to push for referral to transplant unit. A UKELD score of 49 is the minimum required for listing in the UK and my hubby was listed with far less symptoms than your husband is displaying (ok he was subsequently delisted after 10 months but in medical terms he was stable and fairly symptom free). When HCC is present the UKELD score becomes less relevant as the cancer then becomes the priority issue.

Transplant units prefer to see you too early rather than too late and I would request in the strongest possible terms a referral for consideration for transplant.

Katie

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Hi Katie, just wondering why you asked how old Faith's husband was. Is there an age limit to be eligible for a transplant? I am 70yrs with a UKELD of 51, but transplant has never been mentioned by my GI consultant. Today I go for my 6 monthly US, but the radiologist always says they are not able to if everything is OK or not, so I just have to wait to see consultant after endoscopy and bloods are done.

David

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Hi David, I don't regard 70 as any sort of age at all these days, however, yes some transplant centres do have age cut offs (I have heard of 65 & 70). The Scottish Liver Transplant Unit seems to be more ambiguous with their assessment protocol stating "Age - Advanced age is a relative contraindication to transplantation, and in such patients particular attention should be paid to an overall assessment of their general health." Therefore, they base their assessment on a case by case basis - some 70 year old these days are incredibly fit and well so wouldn't be barred purely due to age.

Katie

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Katie, many thanks for your reply

David

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Hi Faith,

When I have had ultrasounds in the past they have tended to ask do I know what its for? Sometimes, they'll just repeat what is on the instructions and that will include a screen for HCC. Hopefully it'll just be a case of mishearing what was said, but as AyrshireK says its probably worth checking. If it had been picked up earlier I'm pretty sure they would have taken some action already.

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Hi faith

When my journey started it was through bloods being abnormal so was sent for ultrasound where a small area in my liver looked sinister I was told by radiologist about this but at the time she said my GP would be in touch and not to worry as there are many explanations for findings however GP contacted me after only 2 days and referred me to local Hepatology unit who requested CT scan where I had to drink loads of some liquid over couple of hours and also had contrast the results were sent to addenbrookes (one of 6 specialists hospitals) who contacted me again within 2 days to ask me to come to clinic the following week it was only then did I get told I had hepatitis c ( been carrying it around for 35 years)cirrhosis & HCC a very unwelcome hat trick, what am trying to say is hopefully if HCC is evident in your husband they would have acted on it as definitely treated sooner rather than later gives the best possible outcome but your quite right to be worried after hearing what you did so get on that phone and don’t be fobbed off demand an answer to possible HCC

Wishing you and your husband all the very best

Huw

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Is it possible you misheard HCC for HCV? HCV is a term often used for people, like myself, who had hepatitis C. Has your husband been tested for hepatitis C which is one of the common causes of cirrhosis? The new wonder treatments can cure hepatitis C even in people with a decompensated liver. Best of luck, Gerry.

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I was diagnosed with HCC and NASH in 2014. Initially I was given the option of a resection or ablation. At that time ablation was an automatic exclusion from the transplant list due to the minuscule potential of cancer cell spread as the needle was removed. This protocol has now changed. I had the resection, and was informed afterwards that to be under no illusion this cancer would return and sure enough almost 12 months to the day it returned. I was tested to go “on the list” and accepted around May 15. I had to wait 18 months for the call, which ended very badly with my wife and grown up kids being told I had 12-24 hours to live. That was 16 months ago, so someone can’t tell the time. My liver is managed with pretty regular embolisations (4/5 a year) this being despite being told this was no longer an option after I had woken after a 12 day coma, and I have now had 10 of these beauties. I am in rude health, but my outlook on life has changed. Every single day (regardless of what happens) is a good day. I get time to spend with my saint of a wife, my children and my grandkids. I am working through my bucket-list and have managed to tick off a visit to Russia, I am off to the Far East in just over 2 weeks and I intend to keep going as long as I can. I have recently been diagnosed with HE and my regime now is a daily dose of Rifaxamin, Furosemide, Spironolactane and Lansoprozole which I have been on for years.

As has been said confirmation of the diagnosis is crucial, then a plan can be made about treatment and possible inclusion on the transplant list.

I write a blog on my cancer journey which you may find interesting/amusing it can be found at 1liver1life.wordpress.com

I wish you well on this part of your journey, and if you have any questions this forum is a great place to share what is troubling you with people who actually have real life shared experiences and feelings, not medical jargon.

Ray

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My son was diagnosed with a HCC in January and had his transplant last month but his AFP was also normal. We are still waiting for the test results back from the tumour to 100% confirm.

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God bless you

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