Focal Nodular Hyperplasia

[1414km]

Hi, I’ve recently been diagnosed with FNH x 3. They are intermittently symptomatic with no real pattern (upper right quadrant pain and gastric symptoms). My consultant has advised conservative management and not said any more than that. I’ve been taken off oestrogen containing medication and have decided to go caffeine free. Wondering if anyone else has similar experience or any information to share?

[scotsgirlni]

Hi,

I am awaiting a final diagnosis but have a 9cm tumour in the right lobe of my liver. They suspect FNH but after an ultrasound, 3x bloods, 2x CT and 2 xMRI the multi disciplinary team can still not confirm that it is FNH. I had a liver biopsy on Friday and am awaiting the results (and praying its benign which means its FNH). I also have pain, nausea, etc and in fact the reason i initially went to the consultant was because I thought it was my gallbladder. Can I ask what size the fnh are? I have read if they are under 5cm they do manage them conservatively with observation to see if they are steady or growing. If they are steady then they won't do much else with them.

[1414km in reply to scotsgirlni]

Hi,

I really hope yours are benign 🤞🏻

I have 3, the biggest is 5cm. They’re confident they are FNHs and I’ve had 2 MRIs 2 years apart which have showed no change. I’m not pushing for surgery or intervention, I just want to know how to manage things myself and feel like I’ve been given such little information. It’s frustrating, especially when you get the ‘FNHs don’t cause symptoms’ line as mine definitely do.

[scotsgirlni in reply to 1414km]

Thank you. I think depending on their location in the liver they can cause symptoms and if you have three and they are pushing on the diaphragm or liver capsule then you get pain/nausea as you do. I haven't read anything which suggests ways to manage fnh other than surgical removal or potentially ablation

[1414km]

I’ve read similar. I just wish I knew if there was anything I could do to avoid flare ups and how best to manage them when they do happen. I’ve cut out alcohol, caffeine and fatty foods which has helped a bit I think (not that I was a big drinker or eater, I weigh 10 stone!)

[scotsgirlni in reply to 1414km]

Hi, Just thought I would come back and update you, my biopsy was benign so it must be fnh. My case still has to be discussed at MDT panel, and I'm not sure whether they will observe for 6-12 months or what. I did say to the consultant - similar to you that I do still have symptoms - thats what brought me to them in the first place. I have read coffee is good for your liver, but I have found that a frozen cocktail sets off my pains as do highly processed fatty foods.

[1414km in reply to scotsgirlni]

Hi, I’m so pleased that it’s benign. Hopefully you’ll find out the plan for you soon. I’ve gone caffeine free and pretty much alcohol free as I find both seem to trigger my pain. You’re definitely right about fatty foods too. I had a chat with a nurse specialist called Kirsty on the Liver Trust helpline the other day. She suggested I ask to be referred to a liver specialist at the liver unit in Leeds to see if they have any further options or are doing any research. I’m definitely going to try that. I’m Katie BTW and I’m in Lancashire 😊

[BritishLiverTrust4]

Dear 1414km

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 10am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[1414km]

I will do that, thank you