This post may be a bit long I’m struggling to know where to start, here goes, in July I went for a mri for back pain 2 weeks later a doctor rang to say I possibly had spinal secondary cancer and I Needed a ct scan, then the ct showed abnormal looking liver, then they said this could be to do with my NAFL I have been told I have for at least the last 10+ years, they were looking into the previous due to a deranged gamma gt?, so next the MDT did a bone marrow test, so in the last 12 weeks we have gone from secondary bone cancer, liver cancer, lymphoma on the table too today when on Monday the gastro consultant rang to say I have cirrhosis. I have seen nobody so the only info I get is from the internet, which can be so negative, all I’ve been told is the lesions will be rescanned in 6 months and I will have 6 monthly screening for the liver issue. I’ve been so anxious I can’t begin to tell you the impact this has had on me not knowing and just researching the unknown,
Thank for baring with such a long post that my not make sense X
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Quennie
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Hi Quennie, sorry to hear of your situation. So can I just clarify, the cirrhosis diagnosis is on top of all the other things?
Whilst cirrhosis is serious providing it remains 'compensated' then your liver can carry on doing many of it's 500 jobs without much issue and the correct monitoring is indeed 6 monthly scans and bloods to check for changes. My husband's consultant has patients on his books who have had cirrhosis for 20+ years. Hubby has had it for 8 years now and remains stable (ok not 100% fit and shows some symptoms).
It's when the liver becomes decompensated that major issues start.
If you have had a diagnosis on non alcohol related fatty liver disease and an ongoing elevation of GGT then it is perhaps unsurprising that this has gone on to progress to some degree of fibrosis. If you are able to address the NAFLD there is some chance that even cirrhosis can repair to some degree.
Don't go doing 'Dr Google' as it will convince you it's all doom and gloom, stick to reputable sites like NHS or the British Liver Trust.
You might find the BLT pages on NAFLD and Cirrhosis useful together with lots more of the BLT site on looking after your liver, living with liver disease and the patient charter which outlines what care you should expect.
Here's the NAFLD and Cirrhosis ones and you can navigate the rest of the BLT site from there.
To clarify a bit maybe, I am type 2 diabetic, prior to this I have always had slightly elevated LFTs and ultra sound that diagnose NAFL for the last 10/15 years. Earlier this year I had 2 deranged gamma gt blood results and was in the process of having a scan as they though I may have some sort of biliary issue? At the time I had a mri for lower back pain which showed the spinal lesions that then sent me for a ct scan that highlighted a abnormal looking liver, but they eventually said this maybe be due to my NAFL. So then the MDT decided to do a bone biopsy to rule out bone cancer and tumour marker for liver, breast etc as the suspicion of the lesions at first being secondary cancer, thankfully these all came back as negative, but a repeat scan in 6 months. The MDT suggested me being referred back to the gastroenterologist due to my LFTs. It was a week later when the consultant rang and just said I have cirrhosis. I’m so confused I have few symptoms, but is that what’s expected, I just feel so alone with few explanations.
I can totally understand your confusion. May I just ask please, have they now ruled out cancer, or are they saying that yes, you have primary cancer somewhere, but not secondary cancer?
I think personally, that if I was in your shoes I would be going back to my GP and demanding answers. Once a liver becomes cirrhotic, there is a chance for tumours to begin to grow, due to all the heavy scaring. Most patients will require an MRI scan every 6-months or so just to check for any possible tumours.
In nearly all cases these tumours turn out to be benign. But, if there is already primary cancer somewhere else in the body, these liver tumours could become malignant. Early identification of any tumours is most important as these need to be of a certain size before they can be dealt with.
If tumours were to develop I would hope that in your case your consultant would refer you to see a hepatologist who specialises in hepatocellular cancer and neuroendocrine tumours.
As for your diabetes, this could be due to your liver becoming insulin resistant.
I have recently explained this to someone else yesterday. Have a read at my comments on diabetes to Rugby50’s post entitled, “Cirrhosis/Child-Pugh”
They have said there is no connection between the lesions in my back and my abnormal looking liver, all Timor markers have come back negative for cancer 🙏I think they said it was nodules they were looking at that looked abnormal, however a ultra sound in May just reaffirm NAFL no mention of a worsening liver just a deranged gamma gt LFTs. I have rung the consultants secretary (gastroenterology) and she says she will send me the letter explaining the telephone assessment, which is the Contact I have had so far, I am seeing my gp tomorrow as he understands my treatment and lack of face to face appointments has filled me with total anxiety☹️
Regards
Hi and welcome Queenie,
It certainly sounds like you have been through a lot lately. If you are UK based why don't you call myself or Kirsty on our nurse led helpline? Its open Monday to Friday 10am to 3pm on 0800 652 7330
Hi. I have a high gamma gt. my other liver enzymes are fine well alt is 42 and my gamma is 216. I went to the doctors and she’s told me anything can up gamma and she said they don’t really test gamma gt unless other enzymes are high as it’s the most sensitive one? I’m going for a liver scan but I’m going out of my mind with worry thinking I have something seriously wrong with me. I’ve gone from eating chocolate and a lot of take aways, drinking Pepsi max to drinking water and eat grass basically 🤣 it’s stressing me out what I can and can eat my family thing I am insane but I am really worried! My doctor has tried to reassure me that it’s most likely fatty liver if anything and said 90 percent of the popular will have fatty liver and won’t know about it, if we carry fat on our body anywhere she said it sits on the liver. Not sure if it’s right or not or she’s trying to blag me 😂 I’m trying to not think about it until my ultra sound and then she said from there My bloods will be checked in a couple months time. I had obstetrics cholestatis with my daughter and that was due to liver so that’s why she’s sent me straight for scan rather than having my bloods retaken.
Hi, just wanted to update yourself and possibly reassure you, as I too have been going through the anxiety and the terrible stress. Yesterday I received a letter from my consultant saying in fact I do have fatty liver that has not progressed since 2015, so unsure why she stated I had cirrhosis? Anyway my only significant ALF was the gamma gt which was 600 and elf marker of 10.64, the letter states that I have a Child Pugh A with MELD score of 7%. The recommended action for this is 5% weigh reduction which I am in the process of doing and a 6 monthly scan and bloods. To also let you know my letter does also state that 85% of patients in my position would still be the same in 10 years. 🙏 so at least now I will be having regular scan to ensure it does not worsen as before I only had a scan if I went to the GP with abdominal issues. For me I feel the raised gamma gt may have something do do with me taking codeine for pain relief, due to back issues.
Yeah I was taking ibuprofen up until my blood test for achy leg. Doctor said it may be that ibuprofen hasn’t agreed with me or I’ve had viral infection. I am not over weight but I do carry it around my stomach I used to be 9stone and now I am 13 but I’m tall. I am still waiting for my scan it’s 3 weeks this week! Feel like it’s taking forever to come through.
Hi I don’t know much about the medical side but I can tell you I’ve had cirrhosis since I was six and I’m now 20 and I’ve have barely any problems my whole life! My liver remains doing quite a few of its functions and I don’t suffer any side effects apart from a bit of general fatigue! I think it can be a bit doom and gloom about cirrhosis online but it’s not all that bad for everyone!
Thankyou AMDA26 I’m glad to hear your story of coping with a diagnosis of cirrhosis and the positivity of this situation. For myself today having the letter from the consultant saying, although some of my LFT are elevated I do have a very good liver function and this hasn’t changed in 15 years, so I don’t know why she said I have cirrhosis and now back to my original diagnosis of NAFLD, the only thing is something they call a ELF score of 10.64, I really don’t know what this is and how relevant it is
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