Liver cyst - anyone with experience? Worried sick.

[baw70]

I had an ultrasound scan on Saturday to look for gallstones, but the sonographer wouldn't say anything other than that she couldn't find any stones. Cue much worrying and a thread on here where some lovely people reassured me. Phone call yesterday from the doctor, results show a 2cm cyst on my liver, I need to go for a CT scan. He didn't give much information, just that he couldn't tell me anything without a scan, which I should hear about in the next week. I am in a complete mess. I'm an anxious person anyway, but this has sent my anxiety rocketing. I understand the results coming quickly, as my Health Trust has employed people from other areas to work weekends, to clear a back log, so I suppose they write the reports immediately and send them to the surgeries, as they go back to their usual hospitals after the weekend. I am worried that they seem to want the CT scan so quickly and have now convinced myself that it must be a secondary cancer, even though I've not been unwell, other than the occasional stomach/highup abdominal pain (every 4/5 months) that led to the gall bladder scan. I would be so grateful for any information as my imagination is running riot. TIA.

Well, for anyone who still around the saga continues. Had an endoscopy to rule out helicobacter and everything looked ok. Thought it was all going well and I was nearing the end, but have just had a call from the consultant's secretary to say that Cardiff want another CT scan and then want to see me in clinic. I phoned the consultant's secretary in Cardiff, who said that once I had the CT scan they would see me in the next clinic to discuss what to do next. I said that that sounded like I would need treatment and she said that yes, she believed that was the case. From everything I've read FNH doesn't need treatment, so now I'm in the grip of despair again. Why would I need treatment if it isn't serious?

Hi Baw

I saw your reply. How are you this morning?

Can you call and ask specifically why another ct is wanted? You are entitled to know what is going on. It's not that, your mind is doing overtime going through all these scenarios and you don't actually know.

Thinking about you.xx

P.s it could be that Cardiff just want closer pictures or a specific angle on the pictures to get a better look. But that's the thing it's all if buts and maybes because you don't know.

I know everyone is different but if it were me I would call and explain that I'm hysterical and can't eat/sleep and ask for the consultant to call you. After my liver MRI I did this. It's your body.

Wish I could give you a big hug xx

Hi Le1890, thanks for dropping in. Not doing so well today, I feel like I should never have relaxed and thought that things would be ok, as I seem to have hit rock bottom very quickly. I asked the consultant's secretary at my local hospital why they wanted the scan and she said she didn't know, they just wanted a repeat of the CT scan that was done 10 weeks ago. I explained what a state I was in and she said she's see if she could get the consultant or specialist nurse to ring me. I told the consultant secretary in Cardiff the same thing and she also said she'd try and get the consultant to ring today, although they don't usually do that. The specialist nurse did ring me back, but she didn't really know anything. She thought the CT might be for a more recent image, but thinking about it now, the MRI would give that. She also said that she thinks they don't know what it is in Cardiff either, but again that is guess work on her part. She seemed annoyed that the Cardiff secretary had said anything about further treatment. I'm so fed up of everything. I don't want to knock the NHS, but it seems that the patient's feelings are the last thing taken into consideration. Nothing is straightforward and whilst I appreciate that if they don't know what it is, that can't be helped, but why not make that clear to me instead of making me wait until I've had another CT scan and an appointment booked, which could take 3 weeks again. I feel I'm given the minimum of information. I keep thinking that if it does turn out to be cancer, it will have taken 15 weeks to diagnose and that could make a big difference.

I agree that you've been treated shoddily and I'll informed. The secretary was wrong to give that information because it's possibly not correct either way. I agree that you need to kick up a fuss about being kept in the dark. I would write to the consultant and express how much anxiety this is causing you and no one will give you reassurance or information

Thanks FrontForward, I know you're right, but (and I know this sounds pathetic) I feel so winded that I don't have any determination or fight in me at all. This is the complete opposite of how I usually am. The whole thing has had such an effect on me, the constant worry and fear has resulted in me feeling paralysed. I thought I was stronger than I have turned out to be and I've retreated into myself. It all seems so stupid, as I feel well. I keep thinking that surely if it was cancer I would be showing some other symptoms by now. No weight loss, no feeling ill or tired, appetite is fine, no signs of jaundice, just feel the same as always. It's likely that the lesions were there for a while before I had the original CT, there's no way they could have developed the week before, so even if they'd developed over the course of 2 months, that would make 5 months in all and it's quite likely longer than that again. The consultant didn't ring today, so as usual I've assumed the worst and that it's because he has bad news that he doesn't want to tell me over the phone. I will be amazed if my mental health remains intact for much longer. Sorry, that's a lot of negativity and moaning I know.

I know personally that when I'm faced with bad news I can rationalise and come out fighting. Faced with maybe...maybe not... what if...but it might be...oh er I don't know I fall apart and cannot sleep.

My gut feeling is that you have a benign condition that doesn't fit into the usual criteria. Because it doesn't the staff lack confidence in telling you anything and are doing more tests to try and get a conclusive result. They have missed the fact that evading your questions does not mean you don't have questions. You are entitled to be given full information. Even if that information is difficult because they can't reassure....what's happening now is worse

You're so kind to post; that's exactly what's happened with me. The constant questioning and what ifs have caused me to fall apart and sleep is indeed impossible. It's taking everything I have just to function at the most basic level. I appreciate you taking the time to post and explaining the possible thinking behind their actions.

I've been where you are. I've had several biopsies (I'm bloody unlucky with lumps, bumps and abnormal cells!!!) and awaiting results is horrible. I've planned my funeral several times now.

When you get the news that it's benign but unusual you'll have a sense of anticlimax because you're so primed for bad news. My best advice is to decide it's fine and refuse to consider anything else.

I will try really hard to do that and sorry to hear that you've been in this position a number of times. I wouldn't wish it on anyone. Here's to hoping that neither of us have to go through it again!

I've had surgery to remove the offending parts! One wasn't biopsied because it looked malignant so was removed 5 days after imaging...the other I had repetitive biopsies and asked to have it removed.

My bits and bobs were all relatively easy to remove and discardable Livers aren't so they will want to check it throughly.

That's unlucky FrontForward! Or lucky they were able to remove them perhaps? It sounds like they moved pretty swiftly with you, which of course is a good thing. I've had the CT scan appointment today, for Dec 8th and will have to drink the horrible aniseed stuff again. I hate aniseed!

I was convinced of the worst each time but all the bits turned out to be normal. Being investigated is to rule out nasties. Think of it that way.
I love aniseed!

Hiya, sorry to jump in so late. I'm going through the same thing, baw. What was your outcome? X

How are you Baw?

Sorry you are going through this too Daisy.... I've been there too.x

How is everything baw?

So, it turns out it's not great news after all. After e-mailing the specialist last Friday, he rung today to tell me that I have epithelioid hemangioendothelioma(EHE), which is an incredibly rare form of cancer. Daisyandbabies, please don't be alarmed by my diagnosis, it's so rare that less than one in a million get it. He wouldn't go into much detail on the phone as he said there was a lot to talk about, but I asked outright if it as cancer and he hummed and hahed and said the phone was not the best way to talk, but gave me the name of it and said it was something that could be cancerous in the future. Having looked it up though, it's cancer from the very start. He did say that he wanted to talk to me directly and that I would need an operation. I asked if it was operable and he said he believed so. Then he dropped a bombshell about seeing spots on my lungs, but then said he wasn't worried about them, he thought my lungs were fine. Do you know what though, I'm not sure if I believe him. I don't know if he's underplaying things until he can speak to me face to face. So, not the ending I was hoping for obviously. It's so rare I can't find much on the web about people who have had it, it's all medical papers from a while ago, so quite out of date. If anyone knows anything at all about it I'd be really grateful if they could pass the knowledge on.

Hi Baw

I'm sorry to hear the news. When are you seeing the consultant? Did he tell you what made them decide on the diagnosis?

I wish u could give you a hug xxx

I am so sorry, what a shock you pot thing. Sending you a great big cuddle. Have you come across this, might be useful?

www.cravatfoundation.org/newly-diagnosed/

Sorry to hear about your diagnosis. I saw that there is a Facebook group for this type of cancer so maybe look there to get more info and meet others in the same boat? Hope your appt gives you more clarification xx

Thanks everyone, especially for the links. He didn't say what had made them decide the diagnosis, just that it was very rare. He said that there would be a few more tests to do, but that we would discuss that when we met. I asked when the operation would be and he said it wasn't immediately urgent, but sometime in the next 3 months. I don't understand that. Surely they should be looking to operate as soon as possible. Perhaps he thinks it's slow growing. He did say that the latest CT scan (a fortnight ago) showed no growth from the previous one which was about 12 weeks previous to that. I also don't understand why he hasn't wanted to see me in clinic before. I should see him in the first fortnight of January. Why aren't they rushing this? He thinks I've had them for some time.

Baw- that is crap news. I am so sorry. You have been worried for months about it. I would ask who is the most expert person in the NHS and ask for a referral to them. You are entitled to do so and it seems such a rare one that you really do want to see an expert.

it does look as if it is an 'indolent' type of cancer - that is the word they used to describe it in the search I did. Very slow growing and not aggressive at all. But having that on your mind until you see him is no comfort I know.

We are here for you over the holidays if you need a shoulder or an ear.

Sorry you had that news.

Thanks LuluJakey. Does anyone know if an NHS Wales patient can access an NHS England specialist? My Googling suggests that the man to see is based in The Royal Marsden, but I know that funding issues may arise.

Right, joined the Facebook page and been given the name of the man to see in the UK. I was right about the funding issues. Phoned my GP today and was told that if he tried to do an NHS referral it would just get turned down, got to committee etc, more time wasted. So I'm going private, but even though my GP will fax the request tomorrow, given the time of hear I doubt I'll hear until in to the New Year. Bad timing!

I went for ultrasound on Friday to find out why my stomach keeps swelling like an hard boiled egg, she also did an internal scan, then i left. within an hour my dr phoned me to say there is a cyst or growth on my liver and i need to have a ct scan. Obviously i have been besides my self worrying since, am awaiting my appointment but feeling so anxious, due to the history of cancer in myself and my family? the waiting is the worst. has anyone had a similar experience. feeling worried :(