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.

Any word baw?x

Still nothing. I'm going to try and pluck up the courage to ring tomorrow, but don't know if I'll be up to it. How pathetic :( I'm not normally this rubbish, but this has really knocked me for six.

You're not pathetic at all. I think many of us would feel the same in your position.

You are not being pathetic. I would be worrying too- whatever anyone told me. But not ringing won't change the outcome and you could very well be prolonging the worry for nothing. FX if you ring tomorrow!

Update in case anyone's interested. Plucked up all my courage and rang today.Had an absolutely horrendous day of waiting until a specialist nurse rang and told me that the biopsy showed no cancerous cells and that the doctor who did the biopsy was as certain as he could be that he'd got the right area. Unfortunately they have no idea what these lesions are and I now have to have an MRI scan. I asked if there were any possible suggestions and she said no, they were at a loss. I was told that whilst the lack of cancer cells is good news, it's still not guaranteed 100% that there is no cancer there. I am somewhat relieved obviously, but it looks like it's going to rumble on for sometime yet and I still don't have a definitive answer. Thank you to everyone on the thread, you have all been very supportive and it has helped over the last 7 weeks .

Hi Baw , course we are interested, its good news that there appears to be no cancerous cells. Unfortunately for you its still a waiting game. Will the MRi show more than the CT scan you had? Sorry I dont know the difference. Hope you getting lots of love and support from your family and friends x

Hi Baw

That is good to hear!

Remember with my case they also were not able to 'name' it. I had the MRI scan and was told they didn't feel need to biopsy as even tho they couldn't tell me exactly what it was, they could tell it was not cancerous. Like you that wasn't good enough for me and I was so worried.

I had a follow up 6 months later and there was no change. It's been over 4 years now and recently had an ultrasound for kidneys and bladder, and also had a second baby with lots of scans. Lots of bloods and all fine.

I think it just un-nerves us as we want to name and label things it's natural. I just accepted that it was not something I needed to worry about and had to get on with it. Ofcourse every time I've had to have a scan etc for the baby I was terrified they were going to tell me this thing had grown enormous and was taking over my insides. Not happened yet.

The waiting is the worst xxx

Thanks both. I don't know about the MRI, I guess it must show things that the CT can't, or they wouldn't bother.
Yes to wanting to name and label things. Fear of the unknown is awful. It's been a surreal experience, walking around feeling well, but knowing that something is going on inside. To make matters worse, I'm claustrophobic, so the MRI scan will be fun!

That is good news. You must feel some relief? But it is upsetting not to get a definite diagnosis. I think like Le18 says, you might have to accept you never know what it is- just what it isn't!

You must feel a bit hacked off as well as relieved- well I would!

Lulu that's exactly what the consultants words were to me when I was freaking out about them not labelling it. He said 'we don't know exactly what it is, but we do know it's not cancer'.

Holding your hand baw x

Baw dont worry about the MRI ,i was anxious but the tunnel was a lot bigger than i thought, its open at both ends (i thought for some strange reason they bolted doors at each end ,overactive imagination!) they also have air circulated in and out of the tunnel which helps give impression of you not being so enclosed. I just kept my eyes shut the whole time. Are they doing it with dye contrast or are you not sure yet? Its over relatively quickly - hope you get the appointment soon x

Emotions all over the place! Relieved at the biopsy results, but too scared to relax in case the MRI shows something different. Cautiously optimistic now though, which is better than before. I'll cope with the MRI, I have to. Every time I think that there'll be some answers, it turns out there aren't, just more questions. Beginning to think I must have alien genes or something! Perhaps you have too Le1890 Thanks again to everyone for your kind words of support x

Have you got a date yet for the MRI Baw? x

I had it last Thursday (Nov 6th) and found it very hard. Poor woman only started to ask a few questions and I started to cry. I'd been to see my GP a couple of days earlier, as I had an area of tenderness around my liver and just wanted to check there was no complication after the biopsy. Anyway, she brought me down to earth with a bump, by telling me that even though the biopsy hadn't shown a malignant result, they were still looking for cancer. I became so anxious, that by the time of the MRI 2 days later I was almost hysterical. The team were so lovely, they managed to coax me through the whole thing and said at the end that the results would be about a week. My partner rang on my behalf on Tue (11th), as the MRI people had told me to let the consultant's secretary know that it had been done, only for her to say that yes, they knew and they were about to ring me to make an appointment for me on Friday. This must mean that they've had the results earlier than the MRI lady said and of course, I believe that can only mean bad news. Everywhere I've looked has said that people have waited a fortnight for results. I don't know how I'm going to walk into the room on Friday. I can't even make a pretence of holding it together any more. I don't recognise myself - I'm usually so practical and face any problems head on, but this has gone on for 10 weeks now and I'm just a mess. The GP has written me a note, so I'm off work as even though I'm not in any pain I just can't face it. I teach adults and there's no hiding or having a moment to gather your thoughts, you're on show all the time and they don't need to see me blubbering. Sorry, this has turned into a bit of an essay, but thank you for asking after me x

You really have had a time of it. I hope you get a definitive answer on Friday as the unknown would make me so anxious too. Good luck!

Just caught up Baw and want to say thinking of you for tomorrow.xx

All the best for tomorrow Baw, please let us know how you get on x

Thinking of you today Baw x

What time is your app Baw? Thinking of you x

Thanks you everyone for your kind words. Firstly, they don't think it's cancer, but they still don't know what I have. MRI showed 2 golf ball sized growths, which have a lot of scar tissue, whilst the CT scan showed 3. The consultant said that if it was singular or I was older, he would go with focal nodule hyperplasia (FNH), although the presentation was not text book. He said he's never seen anyone with more than one, which I was surprised at, as I know there are at least 2 posters on this thread that have this and have more than one growth. Anyway, he's referred me to the liver unit in Cardiff, as he wants a liver specialist to take a look. He couldn't guarantee that it wasn't cancer, but said he wasn't worried and was confident that the biopsy had taken a big enough chunk to have trustworthy results. He seemed mystified and kept saying that he just didn't know what they were. I'm also having an endoscopy very soon to investigate the stomach issues that started all this. So, not massively informative, but quite reassuring and it has made me feel better. I'm almost scared to breathe a sigh of relief, just in case, but I suppose that's natural after 10 weeks of horrendous worry. Thank you everyone, you have all been lovely. I will update if anyone is interested and also in case anyone else has a similar experience and wants to know the outcome xx

Thank you for your update. The wait between tests/scans and results is awful. I hope they can find something that is easily treatable

Hi Baw

That's great news! I know I keep saying this but remember to this day they also do not know what the growths on my liver are. Just that they are not cancer and nothing of concern.

I hope this saga ends for you soon so that you can just get on with your life. It is fair dragging on for you but fx you will have answers at least and hopefully you will sleep easy tonight x

Hi Baw , so pleased for your promising result, must admit though you have scared me to death now as if I have three fnh and there should only be one, think I have been misdiagnosed x

Aargh! No, no lucy1964, please don't worry, I'm sure you haven't been misdiagnosed, I think they're very careful about that. If mine are FNH, they're not a typical presentation, which is muddying the waters. Also (and I don't mean to be rude about the Dr I saw, because he was lovely), I come from ruralish Wales and I think that the hospital here just doesn't see the variety and breadth of people that other hospitals do. I asked him if he was a liver specialist and he said no, the only place in South Wales that had one of those was in Cardiff, hence the referral, which is over an hour's travelling for me. My torrid Googling has also shown lots and lots of other people with more than one FNH, so please, please don't be concerned. I did think of saying to him that there were people on Mumsnet with more than one, because icanhaveadarksideifyouwantmeto has more than one as well x

20-25% of people with FNH will have multiple areas. It is worrying whilst they rule out everything else but it sounds like they are doing just that