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Old 03-30-2005, 02:37 PM   #31
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dana99 HB User
Re: liver adenoma or focal nodule hyperplasia

HI Fanny Lou,
I have responded to a couple of posts before as I too have been diagnosed with an adenoma. I am to wait until June for another CT csan and then most likely surgery. The surgeon said the scar would be about 10cm horizontally. They are now waiting to see if it shrinks but even if it does I want this out as it is giving me other problems. I can feel this ache 24/7 and my back is sore and my feet and hands feel arthritic which the specialist has agreed is somehow related. I am getting a second opinion from another surgeon that I have been able to get a quick referral to through a friend. Are you having any other health related issues with this? Thanks Dana

 
Old 03-31-2005, 07:30 AM   #32
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FANNYLU HB User
Re: liver adenoma or focal nodule hyperplasia

Good Morning Dana99,

I am suppose to be on my way to Atlanta for the second time to see the surgeon. Both times I have been turned around because he has a liver transplant come up. I don't really mind because I know it is for a good reason, but it is a let down to have to wait until Monday and try again. I always feel this pinching feeling on the right side. The burning in my back is almost always there and sometimes this thing doubles me over. It will throb like a pulsing sensation and make me nauseas and sometimes I will actually get sick. I will have loose stools that are a chalky yellow color. You can't get comfortable. Sitting hurts. Laying on my left side helps sometimes. Sometimes streching my upper body to the left will help. Sometimes nothing helps. I have all the symptoms of gallbladder problems but it is fine. That's how we found the tumor. There is some mass effect on the gallbladder but the tumor is the problem.

How big is your tumor and where is it located? Mine covers the entire right posterior lobe.

Fanny Lou

 
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Old 03-31-2005, 01:18 PM   #33
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coreday HB User
Question Re: liver adenoma or focal nodule hyperplasia

Hello all, this is my first time posting, although I have been reading the board for the past few months. I am 27 years old and last August the doctors found a 7cm adenoma on my liver. They immediately took me off birth control and have been monitoring it since hoping it will shrink. My question is: has any of your adenomas shrunk since being off BC or in general? and how long did it take if they/it did? My doctor wants to wait to see if it will shrink before deciding that surgery is the way to go. I agree with that to some extent. I don't want surgery, but I also want this thing out. I am not experiencing any side effects other than a constant dull side cramp feeling that extends around to my back. I don't even know if this is a side effect and my doctor does not seem worried about it right now. I do not have any kids, but I definately want some in the future. I don't want to wait until I am ready to have a family and then say "oh, wait, first I have to have this thing removed". But on the other hand, if there are proven cases where the HA has shrunk, then I would like to wait to see if that will happen. If we were to do surgery today, they would have to take a little more than half my liver out. Does any of this sound familiar to your stories? Being that this tumor is so rare, it was nice to find this board to post my questions to people going through the same thing as me. Does anyone have any advice for me?

 
Old 04-01-2005, 05:45 AM   #34
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rotlude HB User
Re: liver adenoma or focal nodule hyperplasia

Hello Coreday- When my adenoma was found I was 22 and mine was only 4 cm. My doctors also took me off BCPs, but mine never shrunk. My doctors told me that it is possible for them to shrink, but also rare. I had a Liver/spleen nuclear scan to determine mine was adenoma and not FNH. I have been followed for the past 10 years with an ultrasound. I even went through one pregnancy which of course, caused mine to grow. It is now currently 7.2 cm and I am definitely having it taken out. I saw a surgeron this week and have scheduled my surgery for July. Fortunately for me, mine "hangs off" the left lower lobe of my liver and therefore only 10-15% of my liver will be taken.
I'd have to agree with your doctors to monitor yours since it was just found. However, I would probably think that after a year if it has not shrunk, then they may consider removing it. Also, with your young age of 27, if you plan to get pregnant in the future you'll need to let your doctors know this because I am sure it will grow with pregnancy. Hopefully you'll get a reply from someone where theirs has shrunk after discontinuing BCPs.

 
Old 04-01-2005, 06:02 AM   #35
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dana99 HB User
Re: liver adenoma or focal nodule hyperplasia

Hi Fanny Lou,
The mass covers the right posterior lobe as well and was at 9.9 cm but did reduce to 6cm after they embolized two blood vessels when I had an acute attack. Good luck with your appointment. Dana

 
Old 05-23-2005, 04:11 PM   #36
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Re: liver adenoma or focal nodule hyperplasia

Megswis: Would you be willing to tell us what the surgery and recovery was like? I have a 9 cm tumor on the left lobe of my liver that after CT scan, MRI, and biopsy still cannot be definitively classified. They think it's most likely adenoma, but say it also has signs of being FNH or a very rare, but less bleak (?) form of HCC called fibrolamellar carcinoma. I've had a surgery for thyroid cancer before, which wasn't that bad, but I'm just terrified about this one. They are now suggesting I have an "open biopsy" where a pathologist will be standing by and he or she will make the determination immediately on whether or not to do the liver resection. I meet with the surgeon this coming Friday.

After the resection, what's the pain level like? How long before you could get up or walk at all? Are you literally flat on your back for a week or more, unable to care for yourself? I'm concerned about how day to day life is going to continue after this procedure.

Any comments from anyone would be appreciated. I'm trying not to freak out!

Thanks,
Jean

 
Old 05-25-2005, 08:02 PM   #37
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RhondaGD HB User
Re: liver adenoma or focal nodule hyperplasia

Hello Everyone,

I recently discovered that I had a tumor on my liver as well. The tumor was discovered when I was preparing for another surgery. The tumor is 7 centimeters and the doctor is pretty sure that it is an adenoma. I have had several cat scans and a liver biopsy. I was referred to a surgeon at one of the best hospitals in New Orleans only to find out that the doctor is not on my insurance plan. That surgeon has suggested a liver resection along with removal of my gall bladder. Does anyone have any experience with adenoma and pregnancy? I am 34 years old and ready to start a family. I have been off the pill for several years so it doesn't appear that the tumor is going to get any smaller. I am still considering surgery but will have to find another doctor. I am in the process of appealing with my insurance but don't know if I will be successful. Also, can anyone advise on what to expect if I have a liver resection. I too am very scared of that surgery and wondering what to expect.

Thanks
Rhonda

 
Old 05-25-2005, 10:01 PM   #38
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Nancycasc HB User
Re: liver adenoma or focal nodule hyperplasia

I had a liver resection.. the Drs. removed 2/3rds of my liver and a 15 pound tumor that was cancer.. I am healing but its been a long process and my Dr. states recovery is a good year from this surgery.. My scar is like the inside of a "Mercedes Benz" symbol.. it goes from one side to the other of my belly and from just above my belly button to up between my breasts.. its huge, its ugly, but I am testing cancer free for now.. my surgery was Dec 8th 2004.. now today.. I still have back pain, that I never had before.. I still see my Dr. every few weeks.. still having labs drawn.. and still very tired.. work takes about all the energy I have.. but each day I get a lil better.. am thankful to God that I am alive to raise my 10 year old daughter.. *smiles*


Last edited by Nancycasc; 05-25-2005 at 10:03 PM.

 
Old 06-05-2005, 04:20 AM   #39
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SilverB HB User
Re: liver adenoma or focal nodule hyperplasia

Wow Nancycasc!

I've just discovered your posts and have to say you sound like a remarkably strong woman. :c) You should be proud.

I had surgery to remove my FNH on April 21st and I thought that was scary. But you have faced much more and come out with such a positive and helpful attitude.

I just wanted to write to say I also have back pain and strong suspicions on what's caused it. I've always had lower back pain but the pain timed with my FNH is about mid-back. I strongly suspect that mine is related to muscle loss and hunching over since my FNH grew so large months ago. Now, 6 weeks after surgery, I find myself still hunching because of that tugging feeling at the surgery site and swelling, discomfort & pain below my "mercedes" incision. I have to really concentrate to sit and stand straight.

I'd researched back pain ages ago and learned that abdominal muscles have a lot to do with it. It makes sense to me that strong abdominal muscles normally help support the back. Perhaps our loss of abdominal muscles from inactivity or reduced activity before surgery and then after the surgery itself is the culprit in this new back pain.

Do you think your back pain may have the same cause?

When I am fully recovered (whenever that is!) I want to do back-strengthening excercises as well as regain my abdominal muscles. I feel confident that will help with the back pain I'm experiencing.

I just wanted to mention it to you in the hopes it's just a case of regaining some abdominal muscles (when you're able) :c) that may put an end to your back pain. Here's hoping. You've been through too much to be left with any pain at all.

Submitted with prayers and good thoughts for your continued recovery

 
Old 06-06-2005, 05:33 PM   #40
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jeanthecat HB User
Re: liver adenoma or focal nodule hyperplasia

Hi, Everyone.

Thanks for your story, Nancy. I wish you all the best in your continuing recovery. I'm going in for a liver resection this Thursday, June 9, so after that I'll be able to report back for anyone who's found themselves in a similar position and wants the details of what to expect. Fortunately, mine most likely is not cancer, although they can't tell exactly what the heck it is until they yank it out.

 
Old 06-08-2005, 11:40 AM   #41
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Nancycasc HB User
Re: liver adenoma or focal nodule hyperplasia

Silver B, You could be right about the back pain. I am not sure. I had a MRI on my back today and have already had a bone density scan.. you have the same scar I have.. the Mercedes.. all I want to know is where is the car to go with it.. *laughs*.. I hope your recovery continues to progress..

jeanthecat, I hope everything goes well tomorrow.. just be prepared to take the time to recover.. its a major major surgery.. I will say a prayer for you tonight.. oh and btw.. it took almost 2 months for me to find out if it was truly cancer or not.. so don't be surprised if you don't know right away..

 
Old 06-09-2005, 01:54 PM   #42
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rotlude HB User
Re: liver adenoma or focal nodule hyperplasia

Hi RhondaG:
I can give you some input on the pregnancy issue. I am 32 y/o and currently have one adenoma that is 7.5 cm. Mine was discovered at age 22 after only being on BCPs for 4 years. I have had one pregnancy and my daughter is currently 3 y/o. I do not advise pregnancy with yours at the size it is. Mine was only 4.0 cm when first discovered and remained stable until I got pregnant. Starting at my 2nd and 3rd trimester mine began to grow and reached 7.5 cm. It has remained that size for the last three years. I am, however, having it removed on July 21st. Mine is located "hanging off" a portion of my liver and only 10% of my liver will have to be removed. It is directly in the middle of my chest/upper abdomen. I have been told that mine is in a "perfect location" if I had to have an adenoma. I did read a post in here about a month ago, where a young woman went through her entire pregnancy not knowing she had an adenoma until she was 34 weeks pregnant. Then, hers ruptured and she began to hemorrhage. Her daughter, unfortunately, whom was perfectly healthy until this point, did not make it. It broke my heart to read and made me realize just how lucky I was to make it through my pregnancy with a healthy child. I also know of someone personally whom was pregnant with an adenoma (which she knew she had) and it ruptured while she was at work in the hospital (she was a nurse). Her baby was fine and eventually she was too, but the surgerons said they almost lost her twice on the operating table. I STRONGLY ADVISE AGAINST PREGNANCY with yours being over 3 cm. Talk to your doctors/surgerons. Good luck.

 
Old 06-09-2005, 02:02 PM   #43
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rotlude HB User
Re: liver adenoma or focal nodule hyperplasia

RONNIC AND MEGSWIS:
Please give me some input on what to expect after liver resection. Mine is shceduled for July 21st. I was told I will be in the hospital for 5 days. When will I be able to walk around or get out of the bed? What about weight loss and trying to eat. Do they leave you on liquid diet in the hospital for a few days. Were your staples the type that dissolve or did they have to be removed? What is your pain like when you go home? How long before driving? Anything else you can think of would be greatly appreciated. I have scheduled 3 weeks off work, is this enough time? I work from home but am on the computer all day sitting. Thanks!!!

 
Old 06-09-2005, 09:56 PM   #44
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RhondaGD HB User
Re: liver adenoma or focal nodule hyperplasia

Thanks Nancy and Rotlude for your replies. You ladies have given me a lot of inspiration and I think that I will make it through the surgery. It is so nice to have someone to talk to about this condition. This website is a Godsend. Nancy, I will keep you in my prayers. You have been through a lot and are truly an inspiration. I feel sort of selfish after hearing your story. I am not sure if the tumor is cancerous but the doc's think that it is benign. Rotlude, thank you for your insight regarding pregnancy. I am desperate to start a family as I am 34 almost 35. But after your advice, I will not risk it. I am in limbo waiting to hear whether my insurance company will cover the doctor that I have been seeing. Otherwise, I may need to start from scratch and find another doctor. Rotlude, do you have any idea about pregnancy after the surgery? My doc said I should be ok but I am just wondering if it will be possible. I guess I am starting to think about other options in starting a family and wondering if I should start thinking about adoption. Also, have any of the adenoma sufferers considered filing a lawsuit against the makers of the BCP? I think that we should have been warned about this possibility. I know that they have that small warning in the fine print but that is not sufficient. I am thinking we may have a class action lawsuit on our hands but not sure how successful we would be. I am wondering if anyone has any insight as to that. Ladies, thanks again for your replies. I feel a lot better knowing that there are other women who have faced the same surgery and have come through it. God Bless you all!!

 
Old 06-09-2005, 10:02 PM   #45
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Re: liver adenoma or focal nodule hyperplasia

Rotlude, Please keep me posted on your surgery. I will keep you in my prayers as well. When you are feeling better write and let me know what to expect. Good luck and God Bless you!

RhondaGD

 
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