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Old 01-28-2012, 04:16 PM   #1
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Focal Nodular Hyperplasia - they think?

Hi all, im new to this, so bear with me!

Im a 22yr old female who has just been told I have a large mass on my liver. Ive always felt sick since I was about 17 and have never been able to drink and just feeling plain sick.

For years I was having bad heart burn and just wrote it off as something I was eating. Kept getting worse so I went to the doctors and she suggested an ultrasound, they found a 5cm lump on my liver, 2 weeks after I had a MRI which said it was 10x9x6cm. Since then Ive had a colonoscopy and gastroscopy, another MRI (still waiting on results) and plenty of blood tests. Was referred to a liver specialist (apparently like the only one in my state!). After driving for 5 hours he sat me down for about 5 mins and basically said he was fairly certain it was Focal Nodular Hyperplasia, and that it shouldnt grow anymore because of my age, that the pill wasnt growing it, that it wasnt affecting my liver function and said it was only sitting on my stomach.

Since finding out I've noticed week by week im feeling worse. Dizziness, sharp pains, uncomfortable, feeling absolutely exhausted, short of breath, feeling full after eating very little and just plain sick in my stomach (pretty sure I can feel it sitting there). When I lay down on my side I have to pack blankets underneath so I dont feel sick.

I told all this to the specialist and he said all these symptoms should have nothing to do with the lump and go back to my GP. Although the heart burn is probably from it (which I now take daily pills for). If I dont take these tablets I get a really odd feeling when I lay down, and straight away sick. Usually lasts for about an hour of hot sweats and having to sit up straight feeling nauseous.

So I've been back to my GP who got me to do more blood tests, found out Im iron deficient. So Im on tablets for a month to see if this fixes anything.

Im feeling a little frustrated about it all. Wanting a second opinion about the lump but I dont think thats possible. All my other doctors told me to not be surprised if the liver specialist wanted to operate.

One day I will want children. And Ive read lots about people having children with FNH and there is complications. Also not wanting to take tablets for the rest of my life! Just wondering if anyone else has felt these symptoms from having FNH and if they got it removed did it help? I figure better to have the op while im young and expecially if its going to cause problems later in life.

 
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Old 03-28-2012, 04:03 AM   #2
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Re: Focal Nodular Hyperplasia - they think?

Hi! I m concerned about the fact he was "fairly certain" it was an fnh as that's what the spec told me and now I find out it is an adenoma. Mine is only 4cm but if it were 10cm I would be wanting it out! Are u on birth control? Did they say it's possible to be an adenoma coz if u r on birth control it could keep growing and rupture and it can be fatal. If u r not sure Ask ur dr for a nuclear medicine liver scan and that should clarify if fnh and if it is it is less likely to worry about as no chance of rupture or malignant transformation but still that is one big tumor I would still be pushing for a resection! TAke care and good luck!

 
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Old 03-29-2012, 03:16 AM   #3
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Re: Focal Nodular Hyperplasia - they think?

Thanks for the reply! I think they weren't sure because I don't have the scar that FNH does. They've never mentioned adenoma before, not sure what that is? Most of what I know about FNH I've researched myself, I wouldnt even know where it is in my liver, so have been questioning their professionalism! Also found an article that says exactly the opposite to what they told me! I am on birth control yes, and have continued it since he told me it was okay to use. Still looking for a second opinion!

 
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Old 04-04-2012, 02:34 PM   #4
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Re: Focal Nodular Hyperplasia - they think?

The doctor is 90 percent sure I have focal nodular hyperplasia. I am waiting on an MRI to rule out hepatic adenoma, though.

I am a 28 year old female who was looking into having children in the next couple of years. This is all very frustrating for me. I have been to two doctors and one specialist and all seem to tell me different things.

First off, the only symptom I ever had was a dull, poky pain in the liver area. The doctor thinks this is due to fatty liver.

When they first found my mass it was about 3x4 cm or so. Pretty small. The first thing they told me to do was to go off birth control and they would do another ultra sound in six months.

No doctor seems concerned about focal nodular hyperplasia and pregnancy. I guess there is an increased chance of rupture during labour but they would probably just do a c-section if needed. The thing is if it is a hepatic adenoma, those grow due to hormones. Hepatic adenoma is the mass that may be caused by your birth control. They can also grow during pregnancy.

In the past seven months mine measures a couple centimeters smaller. They are not sure if it just shrunk, or is measured not totally accurately. This is why I'm waiting on an MRI before being pregnant. If it is hepatic adenoma they are going to remove it before pregnancy.

I would love to hear other peoples stories.

 
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Old 04-05-2012, 01:24 AM   #5
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Re: Focal Nodular Hyperplasia - they think?

Have you had an MRI before, or just ultrasounds? I first had an ultrasound and they said it was 5cm, then the two MRIs after they said it was 10x9x6.

I feel your frustration! I've found it helps a lot to do your own research and write down any questions you have. Also not everyone online knows what they are talking about so keep that in mind! I also heard with pregnancy it depends a lot on where in the liver your FNH is, on how much it would affect your pregnancy.

Im a little confused how a baby is supposed to fit there as well as a massive lump and would love to hear any stories of anyone during their pregnancy, was the pain worse?

When they told me to go off my birth control it was more a reccomendation until they did more tests, then when I met with my liver specialist he told me that its a big myth with FNH and that I could still take birth control but I feel like my symptoms are getting worse. Does anyone take medication for the pain?

Im surprised you've known about the lump for this long and still cant tell you exactly what it is. Have you had any other tests other than MRi's and ultrasounds?

 
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Old 04-05-2012, 08:15 AM   #6
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Re: Focal Nodular Hyperplasia - they think?

This is how my timeline goes approximately:

June 2011: Go to the Doctor for high blood pressure. To check for causes of high blood pressure they were going to send me for an abdominal ultrasound to check my kidneys. While at the appointment, I mentioned I was feeling some discomfort in my upper right abdominal quadrant. He said he would note that on the ultra sound report; figured it might be gal stones.

A couple weeks later I get a call from my doctor. They found a mass and want to do a CT scan. The ultrasound report said "likely focal nodular hyperplasia, also shows characteristics of hepatic adonema." At this point I went of birth control because like you, they just wanted to see what would happen. If it majorly shrunk in the upcoming months due to going off birth control then there would be more of a chance of it being hepatic adonema.

So I got my CT scan a few months later. I don't remember exactly what the report said but it wasn't a 100 percent answer either.

So they sent me to a "specialist" here in my small city. He didn't seem too concerned at all! He just said they would monitor it during pregnancy and maybe have to do a c-section.

Well I kept pushing my family doctor and I wanted answers. So in January I got into a specialist in a larger city and I had six month follow up ultrasound. This came back saying focal nodular hyperplasia and that it did measure a couple cm smaller. Not sure if it is shrinking because I am off BC pill and it is hepatic adenoma, or if it just measured slightly different. So off to the specialist I went. They are going to do a MRI after two ultra sounds and one CT scan and hopefully get a definite answer. I've been waiting for over two months to see when my MRI will be

The last specialist I saw did say focal nodular hyperplasia is not an issue with pregnancy. If it is hepatic adenoma they may want to remove it. I'm not sure, though, maybe it's because mine is so small?

 
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Old 04-08-2012, 04:08 PM   #7
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Re: Focal Nodular Hyperplasia - they think?

They seem to take forever between each scan for you! They should be trying to do it lots quicker, I'm sure it must be hell not having an answer!

Keep pushing them, I've been having lots of troubles with doctors too. I'm at the point where I'm thinking of calling an amulance to try get some attention. It's good that its small, my specialist was saying that if need be key hole surgery could be an option, an mines huge. Keep looking at the positives and good luck with your MRI.

 
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Old 04-11-2012, 10:22 AM   #8
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Re: Focal Nodular Hyperplasia - they think?

I won't be going for my MRI until October!

 
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Old 09-25-2012, 10:29 PM   #9
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Smile Re: Focal Nodular Hyperplasia - they think?

Hi sorry its been a while, it sounds like Lilac u are in the same boat as me but
I finally had mine clarifyed when they did the nuclear medicine scan my scans were kept to every 6 months, I had the Ultrasound first that found the tumour about 4 cm and then I have MRI within a week and then I went off BC and had a CT not much had changed and still not sure FNH or Adenoma so
then I waited another 6 months and my GP organised my Nuc Med test and then referred me to our new local Liver Specialist and he told me before I have a baby I have to have removed so I will be now seeing him next week to discuss when to have my surgery, oh and they found a "Satellite" adenoma on my first MRI that is 1cm and on my last CT scan (to check grow) that was done in May 2012 another one has turned up so I have 3 now so hopefully I will have all removed and can have a baby next year. Anyway just wanted to share where I was up to. And yes it does seem to take forever, I first found mine last year in April confirmed only this year but the doctors aren't too worried as they are benign and really they would leave there but as i want to have kids i am going thru with surgery so hopefully fingers crossed this is going to happen soon!

 
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Old 12-15-2012, 02:32 AM   #10
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Re: Focal Nodular Hyperplasia - they think?

I SO want to have kids too in the next year or so, but:
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.
Do you ladies have any more info or results?!

 
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Old 12-15-2012, 10:27 AM   #11
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Re: Focal Nodular Hyperplasia - they think?

After nine months I finally got my MRI done at the specialists.
They are certain it is a FNH. They say I am 100 percent fine to have a baby. FNH are not associated with hormones and should not grow during pregnancy. I guess I will find out next year.
My mass is only a few centimeters and never causes me problems. Over the past 1.5 years it has also never changed in size. I did go off the birth control pill just to make sure that wasn't causing it. If you go off the birth control pill, and it is an adonema, it should shrink.
I also had fatty liver and I think, and the specialists think, that is what was causing me pain. I lost 15 pounds and my liver area feels better and all my liver enzymes are down.

 
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Old 12-16-2012, 02:40 PM   #12
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Re: Focal Nodular Hyperplasia - they think?

Hi, glad to hear it was FNH, if is doesn't have to come out that is good news. I am going in for my surgery in January....bit nervous. 5 weeks today until I have my resection, bit nervous.

 
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Old 12-16-2012, 07:09 PM   #13
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Re: Focal Nodular Hyperplasia - they think?

Quote:
Originally Posted by dippyluv View Post
Hi, glad to hear it was FNH, if is doesn't have to come out that is good news. I am going in for my surgery in January....bit nervous. 5 weeks today until I have my resection, bit nervous.
Good luck in January! I have my next MRI in Feb and then probably will be scheduling the resection surgery shortly after that. Please keep us posted as to how your surgery goes, take care!

 
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Old 12-17-2012, 03:47 AM   #14
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Re: Focal Nodular Hyperplasia - they think?

Thank you Malel! I will let u know how it goes it is the first time it is going to be done here in Wagga so I will probably be like a guinea pig I have never been in hospital or had surgery now it's getting closer It s scares me but I really want to start trying for kids soon I m 30 next year. So I hope it all works out let me know how u go with your scans too.

 
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Old 12-17-2012, 04:55 PM   #15
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Re: Focal Nodular Hyperplasia - they think?

Good luck everyone! Ive just been released from hospital from having my liver resection.

Glad its over, now to recover. I was only in hospital for 4 days, not in a great deal of pain, im only on panadol, but it is uncomfortable trying to sleep etc. Had a 6hr drive home and the bumps were painful! They did mine key hole (to try and save me having a large scar). So i have one large scar at my bikini line and 3 smaller scars near my liver so they could put their instruments in. All is healing fine and confirmed my lump was FNH.

If anyone has any questions feel free to ask.. Good luck to everyone with their scans and surgeries and hope for it all to be over for you shortly.

 
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