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Old 03-26-2003, 03:47 PM   #1
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jskm HB User
Post liver adenoma or focal nodule hyperplasia

My doctor's are not sure whether I have an adenoma or a FNH. I had a ct scan, MR, and a liver spleen scan.
All tests show signs of both. Currently, I am waiting for my three months to be up, (end of APril), and I will have another ct scan. I have been off of birth control for two months.
I am very scared, as if it's an adenoma, liver surgery resection is advised.
Has anyone ever had a resection, and if so, can you tell me about it.
Any other advise would be greatly appreciated.
Thanks,
JSKM

 
Old 04-22-2003, 07:19 AM   #2
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aneika HB User
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I went to the Doctors with pain in my right side about 4 years ago. An Ultrasound showed a couple of cysts and I was told not to worry about it. After continuing to have the pain, I was giving a CTscan which showed a dense mass on my lower right lobe of my liver. An MRI was done, and I was told I had a focal noduler Hyperplasia as well...but was told this wouldnt cause the pain, and to come back if the pain continued.....well....here we are 4 years later, and I STILL have pain, and eat Tylenol with Codeine like it's candy. I hope and pray that you get something done with yours and that all turns out well for you
I've started going back to the Drs and this time, I want answers!

Good Luck with it, and hope all turns out well!

 
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Old 04-29-2003, 08:45 AM   #3
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In addition to what I have, I was diagnosed with "costocondritis". I had severe pain on my right side in the rib area.
This is a disorder which will eventually go away.

Ask your dr. about this. Good luck

JSKM

 
Old 05-16-2003, 06:21 PM   #4
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okay, i'm so glad to hear that i am not the only one going in circles. For 3 months they told me it was a liver abscess. Then FNH, today, pathology from the liver biospsy(that was fun!) declared it an adenoma. I'll tell you, I've read tons of articles on every one of these, and they say, that imaging cannot always differentiate. The liver biopsy will tell you for sure. I can elaborate on that if anyone needs me to in a future note. I'm so glad I had it done because if we had gone with what the CT's and MRI said, they would have been wrong-which is why i had 2 surgeries cancelled thanks to the astuteness of my surgeon. I will tell you that FNH has a central scar and has kupffer cells and biliary ducts. Adenoma doesn't. There are 2 types of adenoma in the liver: liver cell(hepatic) or bile duct. Mine happens to be from the liver cells. Seeing as I've been on a rollercoaster and was treated with megadoses of antiobiotic for abscess for nothing, I strongly advocate the biopsy. The thing is when you are going through it you have no idea how complicated it can be. I just trusted the scans for the diagnosis. I did the liver biopsy and today, two days later, the pain has subsided immensely.and mine was in a critical place-by the heart, lung and portal vessel. You have to have a really good radiologist that will hit the spot right! but the procedure is an in and out thing. At least you can rely on the accuracy of the diagnosis this way you can get on to the treatment.

 
Old 05-20-2003, 09:53 PM   #5
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Jskm- i was wondering how you made out? are you having the surgery? i'm in the waiting process to see if it will shrink but i know that i'm gonna have to get it out because of the high risk of rupture. I'm really stressing about this surgery. I'd love to know what your story is now.

 
Old 06-16-2003, 04:06 PM   #6
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April 29 I had a second ct scan. It had been three months since my first scan and three months since I stopped oral contraceptives.

My tumor didn't change at all, which lead my DR. to believe it's most likely a FNH. They want to still observe it, and have another ct scan in October. If it is still the same size, shape etc, then they still want to observe it and have it ct scanned a year later.

I guess I will know more in October. I'll keep you posted.

JSKM

PS..Good luck. Please be aware, my location of the tumor was too risky to biopsy, which is why it wasn't done. The chances of it bleeded beyond control was a risk the DR.'s advised against.

 
Old 07-10-2003, 04:12 PM   #7
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I'm so happy to hear of others with hepatic adenoma. Mine was dx in December by biopsy. I was almost sched for resection but after 6 mo off the pill they (I have 2) have shrunk considerably. So at this point we are monitoring by MRI. I'm nervous though because of risk of malignancy. Anyone else have experience with a plan to monitor via scan?

 
Old 08-06-2003, 08:51 PM   #8
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Same happened to me almost two years ago... I had CT scans and MRIs, and liver spleen scan, and all tests show signs of both FNH and adenomas.
First doctor who treated me suggested resection, problem is there are 10 of them, so resection is not small... The size of them is small (largest one is 3 cm in diameter). I have no symptoms, I only feel some "discomfort" sometimes (once every two to three months). Next doctor who treated me had me take test every six months, he had a less aggresive approach. In these almost two years almost nothing's changed, tests have been more precise (I've had other kind of scans including MRIs), some of the lesions are clearly FNH and only one of them appears to be an adenoma. Some of them have grown very little, doctor said a little growth is to be expected.
So, first calm down, nothing terrible is going to happen in three months. Just wait and have the MRI's again. Also, ask for another opinion, find a doctor you can trust and feel comfortable with and ask him everything. Keep yourself informed, understand the risks of adenomas, and then make your own decision. Mine is to keep checking my liver every six months, if there's any change, or if my doctor at any time thinks it's best to do a resection, then I will.
You should also know that suspending oral contraceptives doesn't necessarily mean adenomas stop growing. I've been off contraceptives for almost two years and like I said before, there has been a little growth...
Hope this helps you a bit... my email is in my profile, if you want to talk some more....


Quote:
Originally posted by jskm:
My doctor's are not sure whether I have an adenoma or a FNH. I had a ct scan, MR, and a liver spleen scan.
All tests show signs of both. Currently, I am waiting for my three months to be up, (end of APril), and I will have another ct scan. I have been off of birth control for two months.
I am very scared, as if it's an adenoma, liver surgery resection is advised.
Has anyone ever had a resection, and if so, can you tell me about it.
Any other advise would be greatly appreciated.
Thanks,
JSKM

 
Old 08-15-2003, 12:13 AM   #9
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Pely HB User
Cool

Quote:
Originally posted by Morocha Argentina:
Same happened to me almost two years ago... I had CT scans and MRIs, and liver spleen scan, and all tests show signs of both FNH and adenomas.
First doctor who treated me suggested resection, problem is there are 10 of them, so resection is not small... The size of them is small (largest one is 3 cm in diameter). I have no symptoms, I only feel some "discomfort" sometimes (once every two to three months). Next doctor who treated me had me take test every six months, he had a less aggresive approach. In these almost two years almost nothing's changed, tests have been more precise (I've had other kind of scans including MRIs), some of the lesions are clearly FNH and only one of them appears to be an adenoma. Some of them have grown very little, doctor said a little growth is to be expected.
So, first calm down, nothing terrible is going to happen in three months. Just wait and have the MRI's again. Also, ask for another opinion, find a doctor you can trust and feel comfortable with and ask him everything. Keep yourself informed, understand the risks of adenomas, and then make your own decision. Mine is to keep checking my liver every six months, if there's any change, or if my doctor at any time thinks it's best to do a resection, then I will.
You should also know that suspending oral contraceptives doesn't necessarily mean adenomas stop growing. I've been off contraceptives for almost two years and like I said before, there has been a little growth...
Hope this helps you a bit... my email is in my profile, if you want to talk some more....


My 6 year old Kid had on January 2002 a resection of 90% of the left lobule of the liver. At first it was thought to be an adenoma. Biopsy determined to be an FNH.

Last month another FNH was detected on the right lube. Its small so a technique called ablassion was done. It's with an electrode that developed an electric discharge with a ratio of 4 cms.

A litte piece of the FNH remains and another little mass was detected. The Dr. is evaluating the case again to know wich is the best option in the future.

Im also sending all the results to another specialist locally so I could have a second advice. And also sent them to a Dr. in Cuba that treats a case of cousin of mine.


[This message has been edited by Pely (edited 08-15-2003).]

 
Old 08-29-2003, 05:10 PM   #10
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Thanks Morocha Argentina for sharing your experience. I have calmed down somewhat and I do trust my doctor. He is a top liver surgeon in NY and is not rushing me into surgery so I feel confident. Still, I am scared of that malignancy risk even though my doctor assures me that the risk is small and that monitoring by scan will ensure that nothing terrible will happen. Maybe with time I will be less and less afraid. It helps to hear from others in the same situation. Thanks again.

 
Old 03-07-2005, 02:37 PM   #11
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Re: liver adenoma or focal nodule hyperplasia

Hi there,

I am a new one to the site, but so excited to find you all. Here is my story:

I have a 2.2 cm tumor on my liver. I had pain on my upper right side of my body and went for a CT a year ago and that is how they found it. I had another MRI done right after the CT and it concluded it looked to be an adenoma. Then 6 mts later it didn't grow, but the doctors now are saying they don't know what it is and advising me to take it out. I can't have a biopsy due to the location and they think it could make matters worse. I am so upset and have been avoiding the surgery, but they say itís dangerous to get pregnant with this tumor because it could grow and burst as you progress into the pregnancy. I am scheduled to go to Sloan Kettering soon to get yet a 4th opinion. I have had 4 as I said and only 1 place told me to not worry about and let it go. I am so confused. My question is....has anyone had the liver resection before and if so can you give me details??? Also, has any one gotten pregnant w/ an adenoma before and if so what happened?

I would look forward to any information. Thank you and I am so happy you all are out there and no what I am going through.

 
Old 03-07-2005, 06:05 PM   #12
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rotlude HB User
Re: liver adenoma or focal nodule hyperplasia

MsMaryland--Yes, getting pregnant will cause your adenoma to grow. I've had mine for 10 years when it was first at 4.0 cm. When I got pregnant with my daughter (whom is now 3 and perfectly healthy) mine grew to 7.5 cm. I had no problems nor pain with mine during pregnancy but I was carefully watched with ultrasounds each trimester. I was also told of the risk that pregnancy can make them rupture and I was advised not to have any more children or else to have it removed. If it is an adenoma 2.2 cm, that is quite small. If I were you I would not go through the surgery of having it removed at this time either. Any of the web sites you look on will tell you that most doctors don't even consider surgery for those under 5 cm. I'm surprised after only six months, and with no growth, that doctors are so eager to take it out. I have heard that Sloan Kettering is suppose to be an excellent place to go and get an opinion on these, so good luck. Keep us posted.

 
Old 03-09-2005, 08:42 AM   #13
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Re: liver adenoma or focal nodule hyperplasia

It really is nice to hear other people tell there stories. I have been complaining of urq pain for three years. Finally, Nov 04 my new family dr found a tumor 7.6cm x 12cm x 8.5cm on my liver, probably FNH. He was stunned. He immediately order a liver biopsy that same week to rule out cancer. I had the biopsy done and the pain hasn't gone away since. It is FNH. He referred me to a hepatologist in Atlanta who said they don't cause pain and we will recheck in 4 mths with an MRI. I beg to differ...... it does cause pain, why else am I hurting. I had the MRI last week and go back to Atlanta next week. He was totaly against surgery, but he didn't acknowledge the fact that I was having discomfort on a daily basis. I don't think I want surgery either, but I would like to hear some options. What do I need to expect. Do I just need to live with the pain. I am taking nothing for it because he doesn't think it is causing the pain. My family doctor said that it could cause the streching of the capsule and that could cause pain. I do have an appt for a second opinion with a hepatologist at Emory University in a couple of weeks, but I feel really lost. I am bouncing off the walls wondering what to do or ask. I know that FNH tumors aren't near as dangerous as adenoma's but do they get to a point that they are to big. When do you become concerned?

 
Old 03-10-2005, 11:32 AM   #14
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Re: liver adenoma or focal nodule hyperplasia

I am new here -- I can't believe I found other people with FNH and all the issues (FNH vs adenoma). Long story short: stomach pain for ten years - had multiple CT, MRI, upper GI, lower GI - the works. Four years ago they noticed a FNH but said it didn't have anything to do with the pain. Multiple doctors later, one took me off birth control pills and the pain subsided (down from every day to maybe once/twice a month). Then I was referred to high risk OBGYN who said not to get pregnant since he wasn't sure if it was FNH or adenoma. However, at the time I was already pregnant. Pregnancy went fine (although he was six weeks early) but now OBGYN wants the lesion removed before any other pregnancies. OBGYN sent me to a surgeon who does NOT want to remove it. No one really knows what to do. I go for a biopsy tomorrow which hopefully will finally tell me if it is a FNH or adenoma. Has anyone else had uncomplicated pregnancies or any other information about pregnancies and FNH vs. adenoma????

 
Old 03-11-2005, 12:08 PM   #15
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Re: liver adenoma or focal nodule hyperplasia

Thank you both for the replies. I had 7 biopsies taken. I have the biopsy report and it never said that this is FNH but ruled out cancer. It does have some of the characteristics of FNH. It did note that there was acute inflamation sometimes found in chronic chirosis. I saw my familiy dr that found the fnh on Wed. I finally just said... look you know me physically better than any other dr and you need to be straight up with me. This thing hurts sometimes really bad and other time I barely notice it, but what would you recomend if I was you or someone in your family. He responded bluntly...it is very large and he would have it removed. They could have done 20 biospies and missed something. He wanted me to keep my followup with the hepatologist and the second oppinion hepatologits. If then we still didn't agree with a treatment plan he would get in touch with some surgeons and find out what the best direction is. I felt a lot better after leaving his office. But neither of us want to rush into surgery. The Sloan Kettering site.......is this the best place in the nation to have liver surgery? I have seen it mentioned on a few different post on this particular board. I think my tumor is very large!

Mrs Gneome.....I had not been diagnosised with mine before my three pregnacies, but I first noticed my pain during my first pregnacy. Not until after the third baby did the symptoms not go away after having the babies. I always thought that the babies were pushing things around and causing me pain. I had several ultrasounds and blood work during each pregnacy because of the same pain.

Talking to people who understand my situaition makes me feel so much better.
Thank you ladies and thank you for the websites. Keep posting.

God Bless You!

 
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