I'm a 29 year old man who recently was diagnosed with Focal Nodular Hyperplasia. Of course, that's just what they think it is -- a 7.2 x 4.7 x 4.5cm lesion on the right hepatic node -- I suppose these things are never 100% certain, which is why I'm freaking out a little.
I have relatively minor health problems, I tend to get colds a lot (4 or 5 a year?) and have trouble recovering, frequently ending with a 6-8 week chronic cough. I've had doctors alternately tell me I'm asthmatic or have acid reflux or post-nasal drip or whatever. The reason this thing was found was a follow-up with an ENT suggested that I go in for a set of CT scans due to a slightly enlarged lymph node on my neck (less than 1cm, so no need for biopsy, they say).
During these initial CT scans, they found an incidental mark on my liver. Had the follow up MRI, the reading suggests FNH. My GP recommended a trip to a gastroenterologist, who confirmed, said "Your blood tests are normal, liver function normal, you're a healthy young man. If the alpha-feta protein comes back high, you can kiss yr butt goodbye, otherwise we just follow it and scan again in 4-6 months." Well, alpha-feta protein came back normal, which is good, obviously, but I continue to get the caveat, "We just don't know unless we biopsy." But I had another chat with my GP and he suggests a biopsy because "the issue is in the tissue" -- i.e., there is just no way to tell FOR SURE what this thing is without going in for a biopsy.
So, I've been scanning the boards, reading about FNH, getting myself good and worked up about the possibility for resection (though no doctor has mentioned it, this tumor is bigger than average AND I'm a man which seems very rare).
Any other men diagnosed with FNH? All I see on this board with FNH are women who were on birth control.
Anybody have any experiences with CT-guided liver biopsies they would like to share? My Doc seems keen on it for completeness but warns that there is always risk of complication. I guess he's just being conservative and thorough, which I appreciate, but the specialist sees no need for a biopsy yet. I would have it done if there was no chance for complications, but I guess that's always a risk?
I'm terrified of cancer (who wouldn't be) -- just doesn't seem plausible in a man of my age, no hepatitis, no cirrhosis .. I did smoke for 10 years and I drink moderately, but primary liver cancer?? All these scans and not a problem anywhere else in the upper half of my body. I'm generally pretty healthy at the moment, though I'm going through a ton of psychosomatic stress, wondering constantly, "Is that a pain in my side? Is my tumor growing?"
I've been there too. I am a woman, like you said there seem to be no guys around here. I know how stressful this is. Like you, mine appears most likely FNH, my bloodwork is all normal too and you are right about the chances of primary liver cancer being nil. My Dr. told me you can't be 100% certain with out a biopsy but he said if it were him he would not have one. People on this board seem to have had the biopsies without complication, I just have a low threshold for pain so I chose not to. My friend who is a Dr. told me that she would not get one either unless there was a family history of GI cancer. She said that if it's cancer that bloodwork usually is off too. My Dr. very conservative did not want to expose me to more radiation and has had me go in for ultrasounds instead every 3mos and have my bloodwork done too. The fnh size changed minimally but that could just be the way the tech measured it and my bloodwork is still all normal. Now I will have another one in 6 mos. To me, after the initial dx, waiting 3mos seemed reasonable but the only sure way to know is with a biopsy.
I hope some others can help you out with their biopsy experiences, I think the complications are minimal if you go that route. Good luck!
I am a 34 year old woman.The Dr found my FNH when I was 4 years old.back then They didnt have a name for it.I guess I was born with it.I had 2 children.The docters found them again after I had my daughter and said they were FNH.That was 9 years ago havent been back.The doctor said not to worry,they do not turn into cancer.He said instead of a smooth liver mine is bumpy.It functions normaly.I wound not worry. I have had mine 34 years.Maybe you were born with like me just never knew it.Believe or not it happens to alot of people they just dont know.I dont think it matters if your a man or woman,I guess it can just happen.Good luck dont worry.