liver lesions

[jani4063]

Can anyone offer any advice, i have SLE and hughes/aps syndrome, after a recent ct scan i was found to have 8-10 lesions on my liver...further imaging was done namely an ultrasound using contrast, they thought the lesions were haemagiomas benign lumps, however on the ulatrsound they were not behaving as they should and so i have now had a MRI scan and i am awaiting the results! has anyone else had problems with their liver, as i am worried sick it has been 2 months since the first scan and i am still no further forward with a diagnosis even though the scans have been classed as "red Alert" any advice would be appreciated

[caz59]

Hi jani4063. Yes i had liver lesions in 2003. Wern't discovered until i had a MRI scan because i couldnt breath. After many days and nights of worry and not sleeping. not only me, my family as well, I got a phone call asking if i would go to Leicester General Hospital to meet with world liver specialist Mr A Denison, a brilliant surgeon. Next step was a liver biopsy, from that they diagnosed Haemangiomas, a particular one was very large and was pressing on a lung. So went back in to LGH and had the surgery to remove it. I was monitored for five years on the growth of the other lesions. Mr Denison does'nt think i will need further surgery in the future as they are very slow growing, over alot of years. It took weeks for any news for me to. just hang in there. I would go to your GP an tell him how you feel, tell him you need to know what is happening. 2 months seems a long time for a diagnosis. I understand your worry, please try not to let your imagination run away.Try to be positive. Its Very hard, i know. Get onto your GP first thing Monday and get things moving. Hope this has been of some help. Sorry forgot to say i also have SLE/Lupus, have had it for 32 years. Hope you get some answers soon. Chin up and am thinking of you.

Regards caz59 x

[jani4063 in reply to caz59]

Hi Caz59

Thanks for the reply, i am seeing my rheumatologists tomorrow, but i dont think the MRI scan will have been reported by then as i only had it done on Friday afternoon! the 2 previous scans they were hoping would confirm the lesion were hermagiomas but 2 of the lesions are taking up contrast like a malignant tumour hence the MRI scan.....the whole thing has been a bit of a nightmare and because of a lack of communication between different consultants my first scan report sat unread for almost 3 weeks until i chased it, at this point i was not even aware of the lesions as the scan had been a ct of my kidneys and renal area and these lesions were incidental findings. I'm a radiographer and i am aware of flaws in the system regarding reporting and esclating urgent reports but even i am baffled by the incompetence I have encountered......i think most local hospitals just dont have the expertise to deal with lupus patients and unfortunately trying to get to see my gp on a Monday is damn near impossible..it would be easier to get an audience with the pope....also when you do eventually get to see a gp they just refer everything back to the rheumatologist!

Just wanted to say thank you for your kind words and support, i was feeling really down last night as i was working a nightshift and we work alone in the x-ray dept so if its quiet you have a lot of time to think and worry....your reply really helped thank you...i am trying not to think the worst but you obviuosky know how difficult that can be....thank you again for your kind words its a real comfort knowing someone has been through the same thing, I will keep you posted how i get on

take care

Jani

x

[jani4063 in reply to caz59]

Hi Caz59

I saw the rheumatologist on Monday still did not have the results of my scan......but did a full examination with bloods, breast check, chest xray, spinal xrays, urine checks the works.....he promised he would ring me as soon as the scan had been reported but said that after speaking with the radiologist i would probably have to have a liver biopsy.

However, after another sleepless night my consultant phoned this afternoon to say they are fairly confident the lesions are haemagiomas............thank goodness, i cant begin to explain how relieved i am! he is still concerned that my blood results are still showing that my lupus is not at all under control and has rushed through an urgent appointment with a larger hospital in my area which runs a lupus clinic, another concern is that because i have hughes/sticky blood syndrome for which i inject daily with heparin i could be more at risk of rupture of the haemagiomas.....so he is in discussion with another consultant as to how this can be addressed................but the main thing is i dont have liver cancer. thanks again for your help and advice

jani

x

[caz59 in reply to jani4063]

Hi Jani4063. So relieved for you. A very worrying time for u and yours i'm sure. Have been thinking of you. Sounds like you are going down the same route as i went. I also had to have a biopsy, i dont think they can go forward until this has been done. I was in for a couple of days if i recall rightly. I'm glad i helped to alleviate your worries Jani and i hope all gets sorted as quickly as poss. Just keep thinking positive thoughts and you will get through. All the best and healing thoughts.

Regards

caz59 x

[Kirsty2510]

I had haemangiomas discovered during an abdominal scan. Is this related to SLE ? How many others have these ?

[jani4063 in reply to Kirsty2510]

Hi Kirsty,

Thanks for the reply...haemagiomas/benign lesions are more common in women aged between 30-50 research indicates there could be a link with hormones also they are more common in women who have used oral contraceptives....so not sure if there is a connection with lupus.....however i also have huges/aps syndrome and i think that can effect the liver

[Tr4c3y]

Don't have this particular problem but know what it's like out there in limbo land and how much a word can help - all the best to u all, thinking of u x

[jani4063 in reply to Tr4c3y]

Hi Tr4c3y

Thanks for the support and kind words...it does make a difference

Jani

x

[Pearlis2]

Did you all have pain in the liver? I have just had MRI saying lesions in the liver too. Am seeing an oncologist tomorrow. Am very worried of course but have been told it could be other than cancer. I also have pain in my ovary, I think. Really scared...