British Liver Trust
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Some advice please

My mum found out she has cirrhosis 2 years ago and has had a regular MRI and Ultrasound. 3 weeks ago she went to see her specialist but saw a junior doctor. He told her outright that her scans show she has liver cancer. He then went on to tell her that there was no treatment and nothing they could do for her.

Last week she saw a consultant who said without a biopsy they couldn't be certain what they are dealing with and didn't know what they were looking at. The MRI shows a couple of fluffy shapes, as well as one so small they had to point an arrow to it.

She is having a biopsy on Tuesday and is already fearing the worst. We are all very stressed, as well as confused as to what is going on.

Any thoughts or advice would be appreciated.

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Is this a liver specialist she is seeing? It would be unusual to biopsy a suspected liver cancer due to the danger of seeding the tumour. It's wrong that she was told so bluntly and given a prognosis of no treatment. Depending on the location and size of any tumour and mum's overall other health (age etc) there might be treatment options.

Hope you get some proper answers and treatment options soon.

Katie

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Yes, it is a liver specialist she has been seeing regularly for the past couple of years, as well as seeing a liver surgeon a couple of weeks ago at the Q.E Birmingham. He seemed less concerned about the lesions. They have both seen the same scans yet have taken different approaches to diagnosis. There is something there but really they don't know what until the biopsy results.

She had a biopsy earlier this week and gets the results next week. The stress is unbearable.

Prior to the biopsy she had seen the liver consultant again and he still insisted it was serious and told her she had months not years. Not helpful!!

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Hello ukplayer, this must be shocking news for you. Firstly there a few things here that should be pointed out.

Like all professions, future doctors have to start their careers off somehow and this sometimes means learning from their mistakes. It would appear that this doctors approach was bang out of order. What the scans would have most likely have shown was the presents of tumours on the liver. These tumours could well turn out to be benign. So he had no right making such a prognosis before knowing all the facts.

Before I had my transplant I had five tumours on my liver. The secret here is identifying the tumours earlier enough. The size of the tumour is important, as sadly if they are too large they can be inoperable. If they are too small they have to wait for them to grow. Once they have reached the right size, they are burnt off using a technique called liver ablation.

I don't what to go into long details here about Ablation at this stage as I think it would be better if we know the results of your poor mum's liver biopsy first.

Don't give up ukplayer, your not alone here are there are plenty of people in here that will offer you help and support. Try and remain positive.

Kind Regards

Richard.

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Thank you for the kind words.

The junior doctor was definitely out of line. He simply told her she was out of time and there was nothing that could be done. Great attitude. As you can imagine this has stunned her. There had been no indication of any issues recently other than scarring, of which there is a lot.

The are 2 anomalies on the scan and one tiny one. She saw a liver consultant last week and he said they are puzzled by what they are. He did write in his notes 'probably benign' because of course the damage had already been done mentally by the words cancer. He told her it has spread into her bile duct as well but the consultant made no mention of this whatsoever. She is freaking out.

What would be considered a large tumour?

Hopefully the biopsy will show they are in fact benign but this has been a very traumatic 3 weeks.

Thanks for the support, it is good to know I have found somewhere to get some advice.

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I agree there are treatments for certain liver tumours. Your mum should tell her consultant about the junior doctor as he seriously needs to improve his bed side manners and he won’t learn if no one says anything. I had a registra who wouldn’t listen to me, luckily the consultant walked in as I cried out and then retold him he wouldn’t be able to get a venflon in the back of my hand!!! He was told to get out and he never came near me again! I heard the consultant have “words” outside my room after she apologised to me! So speak up please for everyone’s benefit.

Good luck x

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As you'll be aware, there are a number of different causes of liver damage, and my claim to fame is Alcohol. I put together my own website covering all aspects of alcohol-related liver disease. Under the heading of "Medical Consequences" I speak of the liver ablation treatment. This can be viewed at: taep.eu/jobs-a.htm

Try to avoid using the "C" word. Call them tumours instead, What Katie spoke of is absolutely right. They normally wouldn't risk doing a biopsy if they suspected the tumours were cancerous.

Please keep us posted as to your mums progress. It's easier said than done, but please try and tell your mum to calm down.

Regards

Richard

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I will take a look at the site Richard. I am a reader, so like to get as much knowledge as possible.

Apparently the liver damage is genetic. She rarely drinks. She has some varicose veins as well-does that sound right.

She only found out 2 years ago that there was anything wrong with her liver and all had appeared well, which is why this has all been so sudden.

I am trying to not use the C word. I like your approach that they are just tumours.

I will keep you posted as and when we have news.

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Hi the only genetic liver problem i know of is alpha 1 antitrypsin deficiency.was this mentioned?

My hubby has this was transplanted in 2011.Numerous tumours found on explant. Still here

Good luck

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Haemochromatosis is also a genetic condition and can also cause cancer within the liver due to iron overload.

Haemochromatosis and alpha 1 antitrypsin deficiency are the two most common genetic liver problems but there are other rarer ones.

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I'll be honest I don't know which liver condition it actually is, other than she discovered that she had cirrhosis. She has had a couple of scans over the past two years and seen a specialist but never told much more than that. Which is why all of this seems out of the blue.

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Forgot to say her tumours are 2 cm and 3 cm and one that is barely visible.

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I do believe that the size should be no more than 5 cm. I had mine carried out by the wonderful team at the Queen Elizabeth Hospital in Birmingham. They have a good publication that explains all this. You can read it here it is a PDF file so you could always download it and read it later: uhb.nhs.uk/Downloads/pdf/Pi...

While they are carrying out this procedure, they will take a sample of the tumour and test for any cancerous cells. There is little risk of any cancerous cells spreading at this time as the whole tumour is burnt away. Is your mother presently at a specialist liver hospital, or at a local one?

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Morning, I know every situation is different, however, I had an abdo scan 4 and a half years ago and it showed I have tumours on my liver, they told me I had liver cancer and kept me in hospital for 21 days. They carried out MRI's contrast CT scans drained fluid and still said I had liver cancer. I saw a specialist two weeks after being discharged, they said that although I have tumours on my liver this didn't confirm I had cancer, it turned out I didn't have liver cancer, I did have Cirrhosis of the liver and portal vein thrombosis (they went on to diagnose blood cancer but that's different) I still have tumours on my liver (23 of them now I think) I am on the transplant list too have been for a while.

Tell your mum to try and not to worry (easier said than done) but what ever is there the doctors will be able to confirm it soon, worrying about it wont change anything. I know it feels like you have a long journey in front of you, even just to get to have the biopsy, just take each day as it comes and find reasons to smile and eat cake.

I wish you all the luck in the world and hope that the answers give good news only! Keep us informed x

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Thanks Chelle. Sounds like you have been on quite a journey yourself. I appreciate the kind words. I am trying to be the positive one, which is why I did some searching and found this group. Glad I did your comments are comforting 🙂

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As Richard and others have said, there are lots of benign "lesions" that can appear on scans. So those are more likely. However, even if the do turn out to be non benign, that still doesn't necessarily preclude treatment. Even transplant could be an option. If you need info on that have a look for the "Milan Criteria".

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Thanks Kristian. I keep telling her there are plenty of options whatever the result but she is spooked by the 'c' word and thinks that is the only thing it can be. I will look into the Milan Criteria. Thanks.

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Hi,

Welcome to the forum.

We are sorry to read that your mum was told she had liver cancer in such a distressing manner. It is important to present all the medical facts and various options before making such a diagnosis to a patient.

As the members have already posted, there can also be benign tumours in the liver. You may find our publication 'Benign tumours and cystic disease' useful to read prior to your mums appointment and to then discuss with the specialist;

britishlivertrust.org.uk/wp...

With regards to the junior doctor, you may also wish to discuss his practice with PALS.

The Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters. They provide a point of contact for patients, their families and their carers. Every NHS trust will have a PALS department and they will be able to investigate your concerns.

Wishing your mum all the very best for her future investigations and we hope you find the forum a supportive place to visit,

Trust1

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Thank you for all of the information provided. This is really useful and very comforting. I think the way things were presented to her have certainly made the situation more difficult than they perhaps could have been. I think he has jumped the gun but hearing the 'c' word has got her very freaked out.

Coming on here has been very reassuring and supportive for me already. Thank you.

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Hey, I happen to agree with Chelle. The "C" letter stands for CAKE. Oooh could really go a good slice of fresh cream vikki sponge.

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Hi all. I just thought I would give everyone an update. Mum got her biopsy results this morning,after a 3 weeks wait, and we are confused an angry. They say they are pretty certain the lesions on her liver are cancerous. But they think she actually has colon cancer.

The liver surgeon has said that she definitely does not have liver cirrhosis at all. So 3 years of tests every 6 months and follow up appointments looking at scans, saying yes they can see the scarring etc. and now just like that she doesn't.

Next up is a colonoscopy.

All very strange. I think we were expecting to get an answer one way or another this morning and are now more confused than ever!!

The journey continues.

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