Giant liver hemangioma

[Cariad64]

Hi

Is there anyone in the UK who have had or got giant liver hemangioma

Got a few questions as it is so rare and having contradiction opinions from professionals

Please help ☺

[Mama41]

I was diagnosed with FNH 7 years ago. I had a very large what they thought was a benign tumour on my liver however after surgery it was found to be cancerous.

I would recommend you push to have it removed. What are the Drs advising?

[Cariad64 in reply to Mama41]

Hi again. two separate surgeons have said to wait another 6months then have another Mri. both said too dangerous to operate but they will grow and eventually burst. my tummy is getting bigger and pain is worsening. waiting for magic eye in stomach and pelvic ultrasound as also have fibroids and cysts on ovaries. have previously had a few laparoscopy for endometriosis.

eating is painful and have pain on right side lower back and shoulder. not sleeping and depressed.

I am confused as American sites show people who have had laparoscopy for hemangioma of my size. 10cm is largest on 6th right lobe.

thank you for replying. ☺

[Cariad64 in reply to Cariad64]

also nauseous a lot. I am glad that you were treated and are ok. where did you have your op?

[Mama41 in reply to Cariad64]

Have they mentioned doing an open op instead of laparoscopically? My ops have all been open ones.

Have you had it biopsied so they are sure what it is?

[Cariad64 in reply to Mama41]

no they won't do any operation as said it's too dangerous and won't do biopsy either. have had ct and mri scans. they told me the hemangiomas are benign.

I 've just read that America sites have done laparoscopy.

they told me I would be hard pushed to find a UK surgeon as even though it's growing and causing problems. UK surgeon won't do it as benign.

I am thinking should I go to America ?

thank you

[Mama41 in reply to Cariad64]

Well they thought mine was benign but thankfully they still decided it needed to be removed. It was over 20 cms when it was removed.

Are you seen by a hepatologist at all?

If it's causing issues then they should remove if if it's safe to do.

[Cariad64]

yes seen by two at different hospitals. yours was huge. they both say not safe to operate. think have to see Gp for advice too. not understanding why they won't operate.

thank you so much for being in touch.. feeling very isolated. x

[Mama41 in reply to Cariad64]

Maybe try and get refered to one of the transplant centers. They have the best liver surgeons there. They may be more willing to operate. X

[Cariad64 in reply to Mama41]

Hi. yes both were transplant surgeons. I guess I have to see next mri.. so glad others understand. thank you

[Mama41 in reply to Cariad64]

Sorry I coudnt be much help. Fingers crossed they will be able to operate after the next Mri. X

[Cariad64 in reply to Mama41]

You have helped. just chatting about it to you as you have been there helps. lot frustration when people ask what's wrong and have no idea. thank you. Will let you know xx

[Cariad64]

how are you getting on mama41? think of you and hope things going as you hoped.

let me know you 've been great help to me. xxx