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Old 08-26-2012, 07:48 PM   #1
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Recently diagnosed with FNH and have A LOT of questions

Hello I am a 29 year old mom of two small kids and I was recently diagnosed with FNH. I have over twenty lesions located in all quadrants of my liver. I am started having severe pain that feels as though I can't take a full breath and sharp pains periodically that feels as though the insides are stuck in my ribs. I have one lesion that is 9 cm and another that is 4cm, the others are significantly smaller. I am really lost on what to do. I was seen by an ocologist who is recommending a possible liver resection. How does this work? Do the lesions continue to grow? Do they come back? Can you have more than one procedure. Just kind of lost. Any insight is greatly appreciated.

 
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Old 08-26-2012, 08:16 PM   #2
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Re: Recently diagnosed with FNH and have A LOT of questions

Since the lesions in FNH are vascular, the resection would probably be done on the two large lesions, and the smaller lesions might be left alone, as they may stay small and not pose a risk to you. Of course, the surgeon and oncologist would be the ones to ask. After resecting the large lesions, the smaller ones would be monitored though imaging studies and if any got large enough to pose a risk of bleeding or became painful, a second procedure could be done. It is important for women with FNH to not be on oral contraceptives or hormone replacement therapy because of the increased clotting risk within the vascular tumors.

 
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Old 08-26-2012, 08:29 PM   #3
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Re: Recently diagnosed with FNH and have A LOT of questions

Thank you so much ladybug! I have been on oral contraceptives for over 6 years however I have had an IUD for 3 years. You really helped because the oncologist said that an IUD wouldn't pose a problem and there wasn't a reason to take it out and I had been struggling about going ahead and having it removed anyway. I didn't know that any hormonal therapy posed a risk. Thank you!

 
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Old 09-26-2012, 02:01 AM   #4
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Re: Recently diagnosed with FNH and have A LOT of questions

Hi I've known about my FNH for nearly a year now, however mine is just the one lump. I too have pain like you that has just kept getting worse. I've seen two specialists and both have told me its fine to continue taking the pill.

Ive got surgery booked in for December, my surgeon has said he will do key hole surgery and make the cut on my bikini line so I dont have an obvious scar. My lump is on my left lobe so that may be why its a bit more simple than a liver resection? It is however a large lump, last MRI was 10x9x6cm.

They will know whats best for you but I suggest a 2nd opinion if you're not 100% satisfied. Good luck with it all!

 
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Old 12-15-2012, 02:27 AM   #5
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Re: Recently diagnosed with FNH and have A LOT of questions

I was recently diagnosed with FNH, after being misdiagnosed with a plural effusion. I've been having progressively worse pain in the upper right quad. and have seen multiple docs for this. They are wary of surgery, as it's risky, but we've eliminated the gall bladder, lungs, etc. and know that this pain has to be coming from the liver. I have 3 tumors, one has stayed the same since 2008 (they were first found by accident in 2008, 2 small ones). One tumor has grown from 2cm (2008) to 7cm (present), and I have 2 other small ones as well, one is new since the 2008 MRI. I'm also being told by liver specialists they don't cause pain. My pain has increased substantially in the last few months, I'm even on pain pills now to control it. I've also recently had multiple cases of sinus infections and bronchitis, and even the flu the last 2 weeks. I'm thinking my immune system is down and making me more susceptible to illness.
The liver doc said they appear to be noncancerous, but he wants to wait a few months and do another MRI to see if they grow more.
I'm anxious about the surgery too, have you made a decision to have it? Take care, hope all is well!

 
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Old 12-15-2012, 01:33 PM   #6
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Re: Recently diagnosed with FNH and have A LOT of questions

I disagree that FNH tumors don't cause pain. They can, especially if large, gowing rapidly or on surface stretching the liver capsule. Pain and rapid growth are 2 indications for resection. As to the hormonal implications, some IUD's release progesterone and both they and BC pills can increase clotting. I would research this and be cautious, as these tumors are very vascular./

 
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Old 12-16-2012, 07:15 PM   #7
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Re: Recently diagnosed with FNH and have A LOT of questions

Thanks, I've definitely been researching, and it's so good to see others having the same issues (as much as I wish none of us had to deal with this!) including pain. My 6month MRI followup is in Feb. and I guess it's just a waiting game until then. The pain meds keep the pain under control, but just so frustrating to not be able to exercise or do anything normal anymore!

 
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