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Old 01-24-2013, 11:26 PM   #1
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shell26 HB User
FNH, Adenoma or HCC

Hi, I am new to this board! I recently had pain in my right side and the doctor sent me to an ultrasound and blood tests. They found a 4cm lesion they said could be a Hemangioma. Then I had a triple phase CT scan that said it is most likely a FNH or Hepatic Adenoma and HCC is not excluded. My AFP is negative and my liver function tests were normal. They have referred me to a Liver Specialist in few weeks. I am so worried as I have a 3 year old boy. I am also confused as to how they do not know what is is. I would love to hear from people who had similar experiences.

 
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Old 02-22-2013, 06:20 AM   #2
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Tarlyn75 HB User
Re: FNH, Adenoma or HCC

Hi there shell26 - I'm new to this board too. Back in October I was in ER for gallbladder attack, after ultrasound they found spots on my liver. Scheduled gallbladder surgery and liver biopsy. Turns out that I have at least 6 Hepatic Adenomas. I'm scheduled for an open liver resection in April. I'm so nervous too, my daughter will have turned 4 the week before my surgery. Doctors say 2 of my larger HA's are on the edge of my liver and they are concerned about rupture. I'm at they point now that I am anxious to get the surgery Over with and move on. I'm great full that these tumors where found by chance, I just wish I knew how long I have had them, maybe that would help explain my miserable pregnancy. I received 3 opinions regarding surgery and was referred to Mt. Sinai in NYC where I feel so comfortable. My doctor has been so helpful and has answered all of my questions. Now I just have 6 weeks of anxiety then focus on getting well quickly. I would love to know what to expect while in hospital and recovery at home. Every case is different, so I will have to wait and see. Major focus is eating right and exercising right now to help my recovery and surgery go a little smoother.

 
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Old 02-23-2013, 06:23 AM   #3
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Jaxi HB User
Re: FNH, Adenoma or HCC

Quote:
Originally Posted by shell26 View Post
Hi, I am new to this board! I recently had pain in my right side and the doctor sent me to an ultrasound and blood tests. They found a 4cm lesion they said could be a Hemangioma. Then I had a triple phase CT scan that said it is most likely a FNH or Hepatic Adenoma and HCC is not excluded. My AFP is negative and my liver function tests were normal. They have referred me to a Liver Specialist in few weeks. I am so worried as I have a 3 year old boy. I am also confused as to how they do not know what is is. I would love to hear from people who had similar experiences.
Hi, I am going through almost the same thing at the moment. A few weeks ago, I started experiencing a slight pain below my rib cage on the right side. My GP thought it might be gallstones, so she sent me for an ultrasound. The ultrasound showed multiple lesions on my liver (I think 5). I then had a CT scan and the likely diagnosis is FNH, but they're not ruling out HCC. I now have to wait over a month to see a liver specialist! I'm so scared and upset and I feel I'm not getting the information and help that I need.

I was taking the high estrogen contraceptive pill Diane 35 (Dianette) for 10 years to treat Polycystic Ovarian Syndrome. I stopped taking it about a week ago when I read online that FNH can be caused by the pill. Shouldn't my doctor have told me to stop taking it as soon as the ultrasound results came in?! There are other treatments for PCOS other than the pill, and it's not a serious syndrome.

I'm curious about what people's symptoms are (if any). Other than slight discomfort under my right rib, I have high cholesterol (maybe non-related), my stools have become lighter in colour (and smell more, but that might again be related to other food intolerances) and I have issues with gas and bloating. I was told by a GP years ago that I have IBS (no tests were done, he just made an assumption) so it's hard to know what symptoms are related to IBS and what are related to my liver. I also have the symptoms of PCOS to contend with.

I'm wondering if these are all tied in (FNH, IBS and ovarian/hormonal syndromes) as many people with FNH on these message boards also mention IBS or menstrual/ovarian issues. Any thoughts?

 
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Old 02-24-2013, 02:59 AM   #4
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shell26 HB User
Re: FNH, Adenoma or HCC

Thanks for your replies! I know how you both feel. It is a really scary and confusing time. Tarlyn75, I am so sorry to hear about your Adenomas. However, it is great they found them and are going to remove them. It is so important to have a good specialist who can ease your fears. I read through alot of older threads on here about what other women went through with FNH/Adenomas and it made me feel not so alone. I am not sure if you would be interested in acupuncture or natural therapies, but they could help you support the liver. It has been helping me taking some supplements, having acupuncture and juicing, exercising etc. It seems even certain foods trigger pain in me. It is hard when you have a young child. I wish you the best of luck with the surgery and quick healing. Jaxi, it was an exhausting month and half where I was scared it was HCC. My dad died in his 50s to bowel cancer that spread to the liver. I really think you need to be referred to a Specialist. I have an amazing one in Sydney. She referred me to have a Mri which was not a great experience, but much clearer with results. It said they are very sure I have a FNH and some cysts, but want to check again in 3 months because FNH and a less aggressive form of HCC can have similar features and also to check growth. However, the radiologist thinks HCC is unlikely...such a relief. They could not see the central scar in the ct scan, but did on the Mri. I was also on that Diane 35 years ago. If I was you I would stop taking the pill for awhile, but some doctors may have different views on FNH and hormones. My specialist said if I got pregnant again it could grow due to hormones and I would possibly be looking at getting it out and possible problems in pregnancy. However, they would monitor it. Your doctor should have ordered liver function tests and tumour marker tests. I had pain in my right upper side and they also thought it was gallbladder until ultrasound showed it on the liver instead. I have also had some right shoulder pain and indigestion. I also got light headed, but that might be something else. I hope you get referred to a good specialist who will find out soon what you have. Take care.

Last edited by shell26; 02-25-2013 at 01:33 PM.

 
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Old 02-25-2013, 03:23 AM   #5
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McRegnal87 HB User
Re: FNH, Adenoma or HCC

hi, I was diagnosed with 5cm FNH in 2008, for a couple of years the docs monitored it to see if it was growing and then discharged me. Recently have had odd symptoms and been back to doctor- am hoping that they will re scan just to check it hasn't grown any more. If the doctors can be sure its FNH they will probably stop watching it like they did with me as it is still preferable to leave it alone rather than surgery which is pretty drastic

 
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Old 02-25-2013, 04:41 AM   #6
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shell26 HB User
Re: FNH, Adenoma or HCC

Hi McRegnal 87, thanks for the reply. How long did they monitor you with the FNH? Was that to check growth, or were they not a 100% sure if it was FNH? My specialist does not want to remove it now, but said it will probably grow with hormones if I have a second baby. That concerned me. I would love to hear from anyone if they had their FNH grow in pregnancy or it stayed the same size. I hope your doctor check up goes ok.

 
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Old 02-26-2013, 02:18 AM   #7
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McRegnal87 HB User
Re: FNH, Adenoma or HCC

I think that there was a question over whether it was fnh although they never told me what it was that didn't look like fnh and they monitored it for 3 years. I think it's quite hard to get your head around leaving something like this alone and I know that depending on what country you're from depends on whether they leave it. UK is very conservative, US seems to like taking them out. There is conflicting research about hormones and growth with fnh as hormones will affect adenoma far more and there is risk of haemorrhage with adenoma in pregnancy but not so risky with fnh. If you plan another pregnancy you need to get hepatologist advice, I think the biggest problem is that even the experts don't know that much about these tumours and there hasn't been enough long term research.

 
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Old 03-12-2013, 07:57 PM   #8
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fireromeo66 HB User
Hepatic Cellular Adenomas

Sorry to hear about your adenomas. I'm glad that you are having the surgery. Wish I had the courage.....I was diagnosed a couple of years back and was actually at Baylor for surgery for the resection. I really freaked out about the surgery and refused, It seemed to I was diagnosed and the next week under surgery. It just couldn't cope with the diagnosis. Now I'm facing some hard decisions. Recent CT revealed unfavorable findings, which is leading to an additional study. I have about 32 adenomas like a grapevine. I'm very nervous about the length of surgery and time under anesthesia. It appears that it is very painful. Not sure at this time if the re-section will even be an option, but if anyone could share tips about preparing for this surgery would be helpful. I'm also type 2 diabetic. Thank you for sharing!!

 
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Old 04-20-2013, 04:02 PM   #9
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MellyO1022 HB User
Re: FNH, Adenoma or HCC

Hi all, before I post my story I just wanted to make sure this board is still active.

 
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Old 05-01-2013, 06:05 AM   #10
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shell26 HB User
Re: FNH, Adenoma or HCC

It is still active

 
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Old 06-04-2013, 10:09 AM   #11
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rachange HB User
Re: FNH, Adenoma or HCC

Hi everyone. I came across this site a little while ago, but am just now posting for the first time. I'm writing because 3 years ago I had a liver resection to remove the largest of 3 hepatic adenomas. At the time, I was scared to death, tried to research everything I could, and had a difficult time finding sites or blogs with information from real people who had been through this crazy situation. I'm certainly no expert on HAs, but I'd be happy to answer any questions about my experience if that would be helpful to anyone.

In my situation, I had been on oral contraceptives since my early teens for incredibly irregular, heavy, and painful periods. In the winter of 2009 I started having strange epigastric pain (not the typical R upper abdominal pain), frequent heartburn (which I had NEVER had), frequent diarrhea and nausea, and just a mild nagging upper abdominal pain that I couldn't pinpoint. After 2 months of worsening symptoms, and a sleepless night with horrible pain that woke me, I finally went to an urgent care facility. (Of course this all happened when I was living/working on a contract in an area of the country I wasn't very familiar with!) I figured I was having gall bladder issues and I was trying to wait for a good time to be off work so that I could have a few days to recover from a cholecystectomy...felt like a pretty big idiot for waiting to see a doctor once the snowball started rolling. The PCP felt it was probably a gall bladder issue as well. My temp was slightly elevated, I had labwork done and they set up an appt for me to have an abdominal ultrasound the following morning. The doctor called me at home the next evening. She told me to stop OCPs, my LFTs were elevated and the ultrasound had shown 3 liver masses. I may want to move back to my home state to be near family and get some support (I had gotten engaged several months before all of this started and was about 1000 miles away from any other family)! Holy crap! I thought I had a little GB problem!

And so began appts with 2 GI specialists, a Heme/Onc MD, tons of additional labs, CTs, MRIs, biopsy, stool samples, etc. I wasn't impressed with the first GI guy and am still waiting for the office to return my phone calls (as I said it's been 3 years). So after waiting 3 wks, I found a second one on my own...I needed answers! He sat down with me after reviewing my information and said "If you were my wife or daughter, I would make you get to a liver specialist ASAP". They set up an appt with a Liver Transplant/Surgery group about 1.5 hrs away. This all happened in less than 2 months, and I felt like I was drowning in fear, stress, anxiety, uncertainty, insomnia, and the symptoms of my angry liver. To be continued...

Now, 3 years later, I am doing pretty well. I have 2 remaining masses that are about 3-3.5cm which haven't grown or changed, and a couple small "dots" that showed up on my last MRI, but no symptoms or pain like I had. I still have appts and MRIs 1-2 times per year with my liver surgeon.

It sounds like many of you are at the point of feeling OVERWHELMED with this fairly new diagnosis. I'm really sorry any of you have to go through this. Hang in there and take some deep breaths. I am sending good thoughts and feelings of peace your way.

 
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Old 06-10-2013, 04:00 PM   #12
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seasthedy HB User
Re: FNH, Adenoma or HCC

Hello,

I am new to this board and posting in general... so please forgive my gaffes.
Recently was diagnosed May 31st - Doctor is 85% sure it is a fnh. Was having pain under breast bone, and left and right sides on occasion. This pain started about 3 months after my hysterectomy. Am scheduled to retest in 6 months. In the meantime I have been trying to eat healthy, exercize. Has anyone had any success with acupuncture for the pain and discomfort?

 
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Old 06-18-2013, 08:07 PM   #13
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vm93 HB User
Re: FNH, Adenoma or HCC

Hi i am veronica I am a 36 year old female and I found out I had a mass on my liver when they were performing gastric bypass on me in 2005. At that point, there was only one and 6.25 cm in size. My gastric bypass doctor was going to cut it out, but didn't feel comfortable doing this because it was covered in veins. I was taking birth control pills at the time and switched to the depo provera because I was told that sometimes birth control is not as effective anymore after that kind of surgery and that deop is more effective. So immediately after surgery, I switched to depo and have been on it ever since.

I have had back pain ever since my surgery and thought that it was from that until last August 2012. I went to the ER with extremely bad back pain, bloating in my ribs and what felt like labor pains in my back. They did another scan and found out that I have gone from one lesion to now having seven. The first one has now grown from 6.25 to 8.3 cm and I have another that is a 4.3 cm and I think the third is like 2.3 cm and the rest are small. I was referred to a digestive specialist in November 2012 who told me that the extremely excruciating back pain was because I needed to build my back muscles and as far as the lesions, that I needed to stop my birth control immediately. This was before he saw my MRI results.

So I left it at that. He made it sound so cut and dried that I've continued to deal with the pain, but no matter what I do, it comes on sitting, standing, sleeping – it doesn't matter. It will wake me in the middle of the night like someone has been boxing me in my right side of my back all night. I get pain in my abdomen from where my liver starts on left side and it radiates to the right where my biggest tumor is. I feel this fullness sometimes so much that I feel like I have a full term baby stuck in the right side of my body between my rib cage and hip. I feel sick on and off and I'm bloating sometimes so bad that I will look pregnant. I feel uncomfortable on the right side under my ribs and it's just annoying. I'm tired all the time and I am so tired of it.

The surgeon I was referred to isn't trying to do surgery and I am so frustrated. I can't take the pain anymore. I thought I was the only one until I started researching this after getting a letter from the the digestive disease doctor I saw a year ago. After a whole almost year he sends a letter saying that after reviewing my MRI, I need a liver biopsy. His medical assistant forgot to send me the letter back in November 2012 and I just received it May 2013. I was just like what?

I started looking it up and that's how I found all of you here. This is not rare and I would like to know if anyone has tried to go after these drug companies or if anyone is interested. I have a daughter who is on birth control now and I'm scared for her. I don't want her to end up like me. This is not rare. There is so many of us out here and they're not listening and not educated on what is truly going on here and they won't, until we as women speak up about these pills and what they are doing to us.

I am so angry. The only warning that was listed on my depo that they highlighted as important was the risk of bone loss, which is very, very minor compared to what is happening to my liver right now. If we just sit here and just keep posting, our voices are not really being heard. I want to speak up for myself and my two daughters. We have to do something. I plan on it and if any of you need my help or want to speak out, post here.

My afp is 6.1, which is borderline. I just had a biopsy few days ago, which I didn't want to do because of the way the procedure was done and the pain after they were finished. I spoke to my surgeon, who just told me that depending on the results of the biopsy, he may not operate which is bull. I can't keep going through this pain and he doesn't think my liver is causing it, so he is making all these other excuses of what it might be, like gallbladder. He checked it and it's normal and my kidneys are normal. Now he is suggesting ulcers, which they would have seen along time ago. There is so much more to my story, it's crazy. He says that he would like to keep monitoring me and continue blood work because he doesn't think it's causing me pain. When I told him about the info on the internet, he got really nasty about it. I guess it's because he is misinformed and doesn't know what he is talking about.

We can make a difference if we work together. So now I am back a square one trying to find a good doctor to understand what the hell I am going through.

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Old 07-10-2013, 12:09 PM   #14
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Lilac Wine HB User
Re: FNH, Adenoma or HCC

Your story sounds exactly like mine! After ultra sounds, CT scans, blood tests, ect. they weren't 100 percent sure if it was FNH or an adenoma.

Ask them to do a MRI! Also, some MRI's have better contrast than others. I did my MRI in a city two hours from where I live because they use a better contrast. After over a year of tests this MRI was able to tell me what I had in a week!

 
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Old 07-10-2013, 12:10 PM   #15
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Lilac Wine HB User
Re: FNH, Adenoma or HCC

Your story sounds exactly like mine! After ultra sounds, CT scans, blood tests, ect. they weren't 100 percent sure if it was FNH or an adenoma.

Ask them to do a MRI! Also, some MRI's have better contrast than others. I did my MRI in a city two hours from where I live because they use a better contrast. After over a year of tests this MRI was able to tell me what I had in a week!

 
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