hemangioma on the liver.

[Ph1ldad]

Hi everyone. I have cirrhosis from HCV contracted some forty years ago. I was treated successfully some eighteen years ago. On a routine US scan they found a lump which,after two MRI scans six months apart, turns out to be a rapidly growing hemangioma. I found out that the consultant has referred me the Birmingham for transplant assessment. I've not seen the consultant yet (can't get in touch) but I'm wondering if anyone else has any experience of this. According to the letter to my GP the growth is too close to the colon for thermal surgery and the cirrhosis is too bad for a lobotomy. This is all completely new to me and was hoping that I would live long enough for something else to bump me off first. I'm quite concerned now and a little reassurance would help. I don't drink alcohol and have a good diet. Support and advice is what I lack being a single parent with two children living at home still. Thanks in advance Phil

[Bolly]

Gosh ph1dad I hope you didn't mean 'lobotomy', as that's neurosurgery on your brain!, lol. Did mean resection?

I've not heard of a hemangioma on the liver but presume its a benign growth. Is it a concern because it may bleed or grow and disrupt blood vessels?

[Ph1ldad]

lol yh couldn't think of the term and thought "the liver has two lobes so...". I'd never heard of it so I looked it up on Mayo clinic. seems its not so rare in women between 30-50 or pregnant or on hrt. Must be my feminine side coming out. It is considered to be like a benign tumour made up of a spaghetti of blood vessels and the prime consideration is similar as for other benigns; putting pressure on surrounding organs and structures. Just got a phone call from hospital whilst writing this. I'm going to see the consultant tomorrow so I should have more info tomorrow. I'll put an update on here tomorrow so there's information for anyone else who develops this. Thanks for responding Bolly.

[AyrshireK]

Good luck on your meeting with consultant Ph1ldad, hope all goes well whatever the treatment options turns out to be.

Katie xx

[Ph1ldad in reply to AyrshireK]

Thanks Katie. Just hope I can avoid the TP route: Might beggar up my holiday plans lol. All the best, hope hubby is ok Phil

[AyrshireK]

I think hubby would jump for joy if he was told he was getting a transplant - he just wants some life back. He's feeling really down, stuck in a rut, absolutely exhausted all the time, not sleeping at nights and no energy. Taking it's toll mentally definitely, he often says how he doesn't know how you cope with two youngsters to care for too. Hubby is going for another endoscopy & banding tomorrow (so you know how he feels just now, absolutely dreading it again!) - that's 40 bands now, he's aiming for the 'Golden Band ..... number 50' should come in 4 weeks if things persist as they are. Latest ultrasound for him showed a possible gall stone - no word from consultant as to whether this is something to be concerned about. No results from his transjugular liver biopsy either as yet and doc hasn't let us know what his last bloods showed either. Won't imagine we'll learn much tomorrow even though it's his liver consultant who does his banding, she doesn't have time to go into much 'consultation' during the endoscopy and if she doesn't talk to me hubby has no recollection of what she might say due to the sedation.

Our 'holidays' at present consist of caravan visits to East Lothian to be close at hand for the hospital, we just don't seem to have gaps between appointments or waiting for appointments.

Anyway, hope all goes well for you tomorrow. If it does come to TP for you then you are getting your life back and there will be loads of holidays ahead. All the best.

Katie

[Brummi in reply to AyrshireK]

Hi, All will be well in the end, I had a liver transplant in June 2013. Your hubby will get his life back Good luck to you both...

[AyrshireK in reply to Brummi]

Thanks Brummi, he isn't even listed yet, we just wonder how poorly or low you've got to sink before an assessment is even considered. Hubby didn't even know he was poorly before a massive upper GI bleed revealed varices and then further tests showed cirrhosis with a suspected auto-immune cause. Life long tee totaller, super fit walker. Just been having endless endoscopy and banding. Transjugular liver biopsy over a fortnight ago to have another look at the possible cause of his cirrhosis as LFT's have recently gone deranged again and a course of steroids did nothing to improve things so it's thrown doubt on an initial Auto-Immune Hepatitis diagnosis. Under the liver transplant unit at Edinburgh but no word on a transplant assessment as yet. We just hope he doesn't have to go into a serious decline mentally or physically before an assessment is sanctioned.

Thanks for your kind words. All the best to you with your continued recovery and new life.

Katie

[Brummi in reply to AyrshireK]

Hi Again,I really know how you feel as I have been through it all as well. I lost 3 stone in 3 weeks after a blood test I was found to have PBC. Two n Half years later I done my assessment. Although my transplant was done in Birmingham I heard that Edinburgh is an excellent hospital. As for waiting times certain factors come into play, severity, blood groups and a few other things I feel sure that the consultants are watching him more closley then what you think as they were with me. Being fully aware of your feelings be positive, your hubby will not be allowed to go in a serious decline. I'm always ready for chatting to on here. I,m 65 yrs old,,,,,Take care

[Ph1ldad in reply to Brummi]

Always good to here from someone who's been through the mill brummi and come out the other side. That's the great thing about this site; the support from the users. I'm not as old as you (only 62

[Brummi in reply to Ph1ldad]

Hi Ph1ldad, Thanks for your message. Things are going ok and a return to work soon is looking good. As for age in our sixty we are the new teenagers....lol. Being honest about it all attitude is a good thing ,Be positive , a few changes here and there and all will go back to normal. Keep in touch..

[Ph1ldad in reply to AyrshireK]

Stick at it Katie, like brummi says, we're all rooting for you and your hubby. I don't have Banding's any more; Birmingham said there is no real evidence of of any benefit once you get past the the first couple of dozen. Dr says I'm better waiting for a bleed and then get them banded like with your hubby. I really sympathise with him; they're awful. I'm also lucky in that Birmingham is only one to two hours from here so I don't have to spend the night. I'm sure that they will find the cause of his disfunction and you can get on with the next phase of life. Always thinking of the two of you

[AyrshireK in reply to Ph1ldad]

Thanks to both you and Brummie and your positive messages, hope your appointment today has gone well Phil.

As for us, Hubby explained to nurse how rotten he was feeling at present and next thing we knew his liver consultant was at his bedside as she wanted a chat before he had his sedation and next lot of banding [just the 2 today (total of 42 to date).... scarring up nicely..... just the camera next time].

Well, what a difference 24 hours makes, consultant explained that his biopsy had just confirmed that he has badly fragmentated liver cells with very advanced cirrhosis and she said his liver tissue was basically 'burnt out'. Unlike in a typical AIH flare that others have, his blood enzyme levels are only in the 70's rather than 100's or 1000's but as they haven't responded to the steroids there is no other treatment option available to treat his liver. With the reduction in his energy levels and quality of life together with the fact this thing has crept silently upon him with no early warning signs or previous episodes of ill health she now feels it is time to progress to an assessment for transplant. Came as a surprise to hear it today but finally some positivity, we will hear from transplant co-ordinator shortly via telephone and sometime in next 4 weeks he'll be admitted to Edinburgh for the 4/5 day assessment which doctor explained to us briefly. She did stress that it might not be cut and dried at this time as hubby's condition is a bit atypical with only small flares in blood levels, no major jaundice, no ascites or full blown HE. She said these cases are easy to assess whereas hubby's with its strange manifestation might be difficult to assess. However, at least we are progressing and with all the tests they'll do and different people on board the assessment panel they'll get a better picture of what is going on and perhaps if the decision isn't for transplant at this time they might come up with some additional options. We remain hopeful though. Hubby is 53, i'm 40 and with only having been together for the last 4 years we hope to live a long and happy life together yet.

Thanks again for your best wishes ..... sorry for hijacking your thread Phildad, as I say hope things have gone well for you today too.

Katie

[Brummi in reply to AyrshireK]

Hi Again, It seems like the ball is rolling, like your hubby I had never shown any sign of illness at all. His outcome is looking good and you both will have a long time together. Looking on a lighter side on the day I got discharged I went to the hospital restuarunt and had Liver and onions for my lunch thats the truth....

[AyrshireK in reply to Brummi]

Thanks Brummi, fingers crossed all goes well.

[AyrshireK in reply to AyrshireK]

Well the ball is rolling, transplant co-ordinator just off the phone and he goes into Royal Infirmary of Edinburgh on 17th of this month. Decision should be taken on 20th. OMG!!

[Ph1ldad in reply to AyrshireK]

Gr8 news for you and hubby. I'll keep my fingers crossed for you both. Just heard; it's not hemangioma it's a hepatoma i.e. cancer. V. slow growing but waiting for appt with Birmingham prior to seeing the transplant team for assessment. Not sure yet how I feel but I'll get there

[AyrshireK in reply to Ph1ldad]

Oh sh*t mate. Hope they can get you sorted out. That's why you have the tests so regular because it generally is treatable when picked up as early. Stay positive. Our thoughts are with you.

Katie xx

[Ph1ldad in reply to AyrshireK]

Thanks Katie, mine are with you two. It's good news in that at least I'll get an outcome and won't be left in no-mans-land Keep us informed on how things are going with hubby. Hopefully he will have his TP soon then you can give a blow by blow account of his recovery up to getting your life back. Phil xx

[johnho82]

I have ultrasound scan recently at hospital and they find haemangioma near liver and consultant said I don't need any treatment for benign growth

[Ph1ldad]

hi John no, it's down to the size, position and rapidity of growth. The scan in November showed an undefined mass but the April scan showed it had grown and was very close to the colon. Will find out more later today.

[Bolly]

Good luck ph1dad, let us know what they say.

[Ph1ldad in reply to Bolly]

Hi Bolly, don't know if the posts get copied to all but if not here goes: It turns out it's a slow growing cancer so I'm waiting to see Dr Holt in Brum then on to the assessment team. Hopefully it'll happen quickly but no more in limbo and hopefully I'll be in your position in twelve months time. Thanks for the support. Phil

[Brummi in reply to Ph1ldad]

Hi, I saw Dr Holt a short while ago, he's a great guy and talks sense.