Two liver hemangiomas 4.8cm AP and 5.5cm TR

[Charlen3S]

Hello Everyone,

I recently was diagnosed in April as having an enlarged liver. I had bloods done all normal. Sent for an ultrasound Wichita showed a mass on my liver. Likelihood a hemangioma informed that it was around 4.5cm fast forward three weeks for me to have an MRI to confirm it was that and bot cancer. They found two hemangiomas on the MRI 4.8CM and another 5.5cm in the right lobe. Notes from consultant radiographer no further scan or follow up required. Now prior to MRI the gp whom discovered the enlarged liver stated that she would be more than likely referring me to either a heptologist or upper gastrointerologist as it seems it's impacting my health. I've had pain in my upper right abdomen on and off for about five years now and my previous doctors didn't give a hoot. I've spoken with another gp today whom job shares with my regular gp regarding this matter. She said she is going to refer/speak to the liver unit at the Edinburgh Royal regarding my MRI and see if these two hemangiomas are causing the pain. After I discussed that fair enough if I wasn't experiencing symptoms no treatment required but I am. I'm also bloody tired most of the time with hardly any energy in me. Back ache and nausea.

My question is has anyone else had to have something similar size or sizes removed or treated with another method?

[monavi26]

Your Drs seem AWESOME. I was diagnosed with focal nodular hyperplasia in 2012, have had same symptoms as you Drs don't give a rat's ass. As I've got a host of other things and the nhs where I live are just abysmal. Mine was causing the fatigue, nausea, I was vomitting bile too, upper chest pain I did even go to my Drs complaining I could feel the pain of my enlarged liver it's come to the point if I have anything bigger than child sized portions I'm sick. I've tried all their pain killers if you can do get it removed DO IT. i read somewhere when I was diag with mine (I used to read case studies from america which I'm surprised I got access too) that in some cases it can come back. Im gunna be honest with you when they found mine, they assumed it was cancer that spread and gave me 3 months to live without even getting to specialists or even getting the biopsy which in time I refused my tumors were 3 the biggest one being 5.5 cm the other 2 at 2.8 and 2.2cm I decided to ingest cannabis oil each to their own this wasn't exactly sustainable for me but then I did the second MRI showed the big tumo r shrunk just to under 5, which I kinda knew because I stopped vomitting. I tried many diffrent types of anti-sickness and painkillimg tablets all the way up to morphine didn't work. There isn't funding in my area to have the operation myself unless I go private which I can't fund TBH so if I was you go for it! some people have never had recurring symptoms after recovering from the surgery which will take you like 6months so make sure you have some one to look after you after your discharged. I was told by the specialist it's rare but god knows. It was hard finding anyone or anything on forums for me back then lol but even now a lot of Drs and gps specialist don't actually know what it is when they ask have i got anything else and I have to list my liver thing lol.

[Charlen3S in reply to monavi26]

Hi Monavi26,

I am so sorry I actually forgot to reply to you. That's so awful you had to go through the utter stress and worry that they thought it was cancer. To then be told FNH. How on earth do they expect you to trust such diagnoses after that. Good that the CBD oil helped shrink one of your tumours by half a cm. Not so great the side effects from it I assume. Yet possibly worth loosing the awful side effects associated with the FNH. Where do you live?

I called the GP yesterday to find out if a referral had been done to the liver unit at the Edinburgh RI. The receptionist said a letter was done not so much a referral to the Hepatobiliary department. Asking for advice on your hemangiomas. She didn't go in to much detail if what exactly the letter said. However I recall the gp saying she would find out if these were the reasons for the pain I'm experiencing. I mean it's obviously not just the pain. Anyway she had said I will find out and then it will be up to the liver unit if they want to access you or if it can be managed in practice.

My friend says I should push to speak to a specialist face to face.

Currently not experiencing any pain. Yet still fullness, nausea and tiredness. I clearly seem to have bad bouts of symptoms then they subside.

Thanks for the response and time and apologies again for my sloppy response time.

[monavi26 in reply to Charlen3S]

Hi its alright, and i know right i dont trust my gp anymore if anything im an idiot 🤔, i coulda sued them fir that medical negligence tbh just wasnt aware if my medical rights back then. I live in the west midlands, a town by birmingham, my local hospital is manor hospital,(worst hospital ever) the specialists i saw were based at queen elizabeth hospital they where amazing, the small amount of time i dealt with them its just the local hospital and my gps messed everything up. And no, misread or i just poured my heart out wrote too fast and you didnt get my waffling text lol, the cbd oil stopped the side affects, i eventually had 3 MRIS the 2nd where i knew it was working, showed reduction by so much, rhe last MRI my tumors went down to 3.9cm, 1.9cm and 1.4cm, the oil stopped everything that my gp couldnt fix with their anti sickness anti everything tablets i was on like 30-42 pills a day and cbd oil replaced all those tablets only thing i take now is allergy tablets...

Push to speak to a specialist, you're friends are right. I only ever met one person after my diagnosis with the same thing but he was on private had them removed soon as they where diagnosed. It pisses me off that refferal is basically saying "im just a gp, my patient had got this but nhs being all about budgeting is it viable to waste thousands on this patient?" thats what they're basically saying if u have to complain to an mp about this it us you're right to have it removed i had a little google your diagnosis needs resection compared to my FNH. Your higher risk basically. Make sure you tell them your the one living with this. To them (like me) your just another case study with a rare diagnosis. They dont tell you either that you cant take most pills because of the liver stuff we both have. Theres been times ive been given medication which im not even allowed to have. And many times theyve prescribed something ive asked "can i take it with my liver tumors?" and theyve had to stop to prescribe something else because they didnt know what focal nodular hyperplaisa was. Ive been trying to get seen now but my gp is having none of it. I stopped using cbd oil at the masses i was using it at. Past year my liver has grown to the point i look permanently 6months pregnant

Good luck love i really hope u get the surgery done it will be life changing for you xx

[monavi26 in reply to monavi26]

And dont be sorry love. Ever! We all have lives and where all ill so ❤ im the same i only just noticed lol so i waffled again hope u understand my gibberish lol much love and good luck again

[monavi26 in reply to monavi26]

Understood it completely sorry about my late reply I've been ill with a sinus infection and complications from my undiagnosed chrons which run in the family tho I've got to give it to my useless drs they found the linked deficiency though!! I laugh and make light of it but basically everyone where I live is in the same boat. Up north seems to have better healthcare than the Midlands (I have cousins as far as Rochdale lol)

How has your luck been any progress with seeing the specialist? Getting the refferal? I'm going through the same for the ENT now for this sinus thing lol keep complaining cuz the same pains you have I have again but I also had my gallbladder removed and a while back I was told pain from that area could be anything liver/pancreas what's left of my gall bladder tubes lol I forgot what they're called. But yeah. URGH!!! Lol hope yours are better results???

[Amiller604]

I have one the size of a cantaloupe on my left lobe. They discovered it 5 years ago when I went in for right side rib pain. I went threw ultrasounds..& catscans then met with a specialist. He basically gave me a “physical” and said he could actually feel my hemangioma from where he was pressing on my stomach. He told me its possible that it flares up when I’m stressed..? He also said that “I do not want to have surgery to remove this”. Nobody around my area does that kind of surgery. I still have right side rib pain (feeling of someone poking me), dull aches, right shoulder pain, migraines, & upper left back pain. It flares up monthly when my period comes also...so I know it’s hormonal. Honestly I didn’t get much information about it from the surgeon OR my family doctor. I’ve had to basically do my homework and figure out what this thing is because I feel like I got 0 info! I’m suppose to go back here in a few months for another ultrasound checkup...but I can feel that it has grown.