Had an ultrasound yesterday and the nurse said I have a collection of blood cells in my liver...I believe this is a hemangioma, which is a non malignant tumour. Has anyone else with PBC been diagnosed with this? I know that it's not supposed to be something to be worried about, but just wondering anyone else's experience...did yours get bigger and cause pain....can this develop into liver damage or even a cancerous growth?
Just when I'm coming to terms with this condition something else is thrown into the mix!!
Hilary x
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Hils67
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I have a 10cm liver hemangioma and two smaller ones. As far as I know to date I do not have PBC but awaiting further mri results and to meet liver unit again. If you have a hemangioma it may be small and cause no further problems but you will have to insist on having it checked regularly. Mine was only 2 cm in 2004 but has grown and now causing a lot if symptoms . I am likely to have a liver resection but still waiting to hear. If hospital had kept an eye on it then I could have had it shrunk when it was small enough. Now its a giant hepatic hemangioma and dangerous.
I hope things will be good for you but please insist on getting more info and scans from your hospital.
If I can help in any way please let me know. I haven't found many uk patients on this site as giant ones are rare and surgeons have not conducted operations on it. An American site has more patients having had this condition which may help you to read for more info.
Good luck and yes PBC is enough to deal with without this.
Thanks Cariad for your reply, and I will insist on getting it monitored. I wish you all the best in getting yours sorted. The radiographer was very reassuring in saying that they're quite common but rarely cause problems...but that type of complacency is partly reassuring but also concerning, as they might not see that it's worth monitoring...but as your experience shows if definitely does need monitoring.
hope it all goes well for you. keep updated and same to other s here who have replied.
without scaremongering. liver hemangioma need checking regularly. a lady on this site was told it was benign and huge at 20cms. turned out when operated it was cancerous. she is recovering from many further operations. strong lady mama41.
Sorry to hear that. Hope all goes well with the giant hemangioma and treatment. I have not heard of anything else with one that size. Sorry can't be of any help, but sending positive thoughts your way. Take care, Ivette, Chicago
Hi Hilary. I have PBC. I also have 6 haemangiomas. For good measure I have 2 Focal Nodular Hyperplasias (FNHs) also! These are also benign tumours. To be told initially you have "spots & lesions" is absolutely terrifying. However I had ultrasounds, a CT scan & 2 MRIs so far. The images have been read by the initial radiologist & my consultant. I am very lucky in that my consultant told me he was taking a cautious approach & even though he & the radiologist agreed they were all "probably" a mixture of haemangiomas & FNHs, he decided to seek a third opinion from another consultant. He too has agreed that in all probability they are correct in their diagnosis. he also recommended that I have a repeat MRI in 2 to 3 years. While these can grow & cause problems as the other poster has mentioned, I believe I read previously that they cannot become cancerous. However, people with PBC can be more at risk of liver cancer generally than those without PBC, so I will certainly be ensuring that this is monitored as suggested. I may even ask for an earlier MRI to be on the safe side. So yes they are definitely scary, but for me I feel all the steps that can be taken at this point have been & I just need to ensure they are monitored appropriately. Yet another reason to smile on the outside & seethe on the inside when someone says "but you don't look sick...." 😉
Thanks Lisa for your reply. Glad to hear you're being monitored properly...and I will insist on the same...when I eventually get my appointment through to see my consultant. I was told back in December that waiting time is about 9 months! Another question to add to my list. All I can say is thank goodness for this forum and the PBC foundation.
Oh I know what you mean about not looking sick...people just don't understand this condition at all, and if you try and explain they just think you've overdone the alcohol!! My partner is in a rock band so we do quite a bit of socialising, so friends automatically assume I've brought this on myself by drinking and partying...I feel obliged to add in to any explanation that it's not caused by drink! And no one really understands the tiredness...I get knowing looks saying 'ah you're probably working/exercising/partying too hard' grrrr!
yes I agree I am so fed up of people telling me.. you look well... argh... I say well that's as you can't see my liver and from being a size 10 I'm now huge n look 7mths pregnant and can't fit into my clothes which are uncomfortable anyway!!! yes I also liked to party and yes again people assume alcohol! luckily I don't have alcohol as a disease and awful illness but if I did then that is an ILLNESS...
I understand you completely! Always something, but don't worry. It seems like once your in the system and being monitored they spot everything. Think of it as being minded really well would love a little break from it all though.
Hi Hilary I too was told I had a collection of blood vessels in my liver I think it was a couple of years ago now (not sure when I can never remember the details) but my consultant said they're nothing to worry about. I have had an ultrasound every 6 months and there has been no change in them so hopefully you will be lucky like me.
They found 2 in my liver and polyps in my gallbladder when i had a ultrasound before diagnosed with PBC in december last year. When I seen the consultant these weren't mentioned so know idea. Still waiting g for my 3 month check up appointment.
Hi, I have at least 5 haemangiomas, they are common in women apparently. I think when I had my first MRI 10 years ago I only had 1, so they have developed over time. Mine have remained similar in size, but in researching the condition it does seem they can potentially grow big enough to cause problems. But do not develop malignancy.
I've been assured by consultant and hepatologist not to worry. Just have them checked at least annually.
Hi Hiliary, I have a hemangioma that shows up on my scan every time. It's been stable. It did get a little bigger than the beginning but I've had it for over 15 years. It does not bother me or cause any symptoms. Depending where it is located, they can't remove it without causing damage and risk of bleeding. I guess we're born with them or they form on their own, but like you indicated they are benign so I don't worry about it. Just keep an eye on it for any changes on your reports and always ask your doctors about it to ease your worries. Hope this helps. Take care, Ivette, Chicago
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would love a little break from it all though. 
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