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Old 03-11-2005, 01:13 PM   #16
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Re: liver adenoma or focal nodule hyperplasia

So, I went for my biopsy today (through an ultrasound) and they could not find it. They saw the fnh on previous ultrasounds and "think" they saw it on the CT scan on Monday. They think I might be able to have a biopsy though a CT . . . but this doctor was pretty sure the pain is NOT due to fnh anyways. Very confusing and frustrating. FannyLou - you are so right - finding other people in your situation does help!!!

 
Old 03-12-2005, 06:11 PM   #17
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Re: liver adenoma or focal nodule hyperplasia

Hi MrsGenome-- I am one of the "lucky ones" walking around also that have been through one pregnancy with an adenoma. My adenoma, when found ten years ago was 4 cm. I went through an uncomplicated pregnancy and had a C-section due to my daughter being in the breech position. My adenoma however now is 7.2 cm so you can tell that it definitely grew. I, too, would like to have another baby but have been told I need surgery before I consider another pregnancy. Mine is in the left lobe, segment 3. I am currently considering all my options on surgery. I definitely will not get pregnant again until I have this removed. Its just too much of a risk with mine being as large as it is. Did yours grow significantly through your 1st pregnancy? I've been told mine is in a perfect location for laparoscopic surgery because it is right in the middle of my chest so we'll see. Keep us posted.

 
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Old 03-15-2005, 09:29 AM   #18
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Re: liver adenoma or focal nodule hyperplasia

Hi Rotlude - In 2002 it measured 5 cm in the left lobe. In 2/04 it measured 2.7 cm and in 6/04 it measured 3.5 cm (Feb and June was during pregnancy). I'm not sure about now. They said they saw it on the CT scan but when they went to do the biopsy with ultrasound they couldn't find it. Just waiting now to here from doctor what next approach is. I will have my gallbladder out next month . . . My husband and I are both getting up in years and I don't want to be 45 having the next child so I really want to get this taken care of!!! We are both 37 now. It is just frustrating getting all these different opinions from the docs!!!

 
Old 03-15-2005, 03:37 PM   #19
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Re: liver adenoma or focal nodule hyperplasia

Hi Rutlude,

Thanks so much for writing. I am the one with the 2.2 cm adenoma (or FNH) and I am going to Sloan like I said on Monday to meet w/ a surgeon. I met w/ a liver specialist and a surgeon at Johns Hopkins and they are the ones that are convinced that I should get the surgery. I am so confused! They are also telling me they can't rule out cancer, but my mom said they always have to say that. So I am wondering are you going to have yours taken out before having another child? I went to see a high risk OBGYN and he had no idea about adenomas and pregnacy, which scares me. Did yours grow from 4-7.5 cm during pregnacy? Has it gone down? Will you have it out? I am soooo confused I don't know what to do. I would rather have it out now before children than to have it out after. And one more question to you.....are you seeing a Heptologist or a Surgeon or a Primary Care doctor? In other words who's opinion are you going by?

Thanks so much for writing me back!
Take care!

 
Old 03-15-2005, 03:46 PM   #20
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Re: liver adenoma or focal nodule hyperplasia

Ms. Genone,

Hi. I am confused. Did you say you had one child and the tumor went from 2 something to 3.3 during/after pregnacy? Are you going to have surgery? Did they suggest it? I am sorry to ask so many question please forgive me if you have already posted the answers. I to really want to get pregnant, but I am scared to even if mine is small only 2.2 cm I am worried it will grown and rupture. What do you think?

Thanks so much and good luck.

 
Old 03-16-2005, 04:29 AM   #21
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Re: liver adenoma or focal nodule hyperplasia

I'm so happy to have found this board.

I found my FNH 9 years ago, probably like others have - accidentally, while investigating another problem. I had already had 2 children and was not experiencing any pain or discomfort.

The surgeon did an incision and looked at it during an operation where she removed a cyst from under my arm. Nothing about a nodule was mentioned. Just that I had hyperplasia, that my liver had "made more liver", that I was probably born with it and never knew, and that nothing further was required except to keep an eye on it.

This past year, I started to experience pain and discomfort. I realized it must have grown substantially when I went to really have a good feel.

I've had blood tests, an MRI, and a review of my records sent from the US. (I now live in England.) Last week the consultant said they have ruled out cancer based on that, but I have not had a biopsy. The growth is 5-6cm but I have nothing to compare that to - no mention in my records of a prior size. I'll be scheduled to see a liver specialist to discuss surgery to remove it.

I'd describe the pain as a "pinchy" feeling right at the site and more general pain and discomfort in different places around my upper abdomen.

I discovered recently that the more general pain (although it can sometimes be quite intense) might actually be gas. Seems silly, but I never realized it before because it's in places where I'd never felt gas pain - much higher. But, I suppose, it's because other parts are more crowded in there now. So, I've learned to deal with that a bit better by trying to work it "out" and that helps.

Sleeping is difficult. I can't sleep on my stomach any more and trying to find a comfortable position on either side is tricky. The area is sensitive to touch (pressing) and I can't fold my arms and lay them on my stomach without feeling the pinch.

None of the doctors I've seen have ever questioned that the FNH is causing this pain.

I will certainly consider surgery when I'm better informed about it by the specialist, but I'd like to learn all I can beforehand. I have been to every site I could track down on the subject. But, it's frustrating because it's unclear if these growths can shrink on their own.

For instance.. if the growth is affected by pregnancy and birth control, is growth hormone-related? If yes, would a diet of (?) estrogen-blocking foods benefit us?

I was told there was no "magic pill" and no dietary changes were recommended. I did not notice any change while I was pregnant either time, but that was before anyone knew I had FNH. I find it very curious that mine grew to the point of causing pain just as my periods were stopping (entering menopause). Could this have triggered the growth? or contributed to it?

I don't have answers. I am not going to wish for a magic pill, but if I can limit the growth, lessen the risk of a re-growth after surgery, etc, I'll certainly try things like a diet change.

I plan on visiting this board often. And I'll be sure to post anything new I learn after my next appointment. It can't hurt to share this information and our experiences.

My best to all.

 
Old 03-17-2005, 10:28 AM   #22
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Re: liver adenoma or focal nodule hyperplasia

MsMaryland--Yes, my adenoma grew while I was pregnant and unfortunately has not gone down any. It actually grew from 4.0 cm to about 6.5 cm during my pregnancy, and now ultrasounds are saying it is at 7.2 cm. My gastroenterologist and a liver surgeon I saw 4 years ago both advised me that if it got over 5.0 cm I needed to look at having it removed. I am contemplating having it removed now because I talked to the Radiologist after my uls in February and he told me that "it had definitely gotten bigger than it was a year ago", now measuring 7.2. This scared me to death because I do not understand how or why it is grown. When I was pregnant my gastroenterologist sent me to a liver surgeron just in case something would happen while I was pregnant, so he would be familiar with my case. He told me at that time (I was currently 6 months pregnant), that my pregnancy should be Ok and that he didn't believe mine would rupture while I was pregnant, but he also told me that if he had seen me BEFORE I got pregnant, he would have told me to have it removed. He also said that should I plan on having more children, or if the adenoma would grow any, that I should look into having it removed. I definitely AM NOT going to get pregnant while I still have this. With the size of mine, it is just too much of a risk for me. Unfortunately, it seems as if most physicians are not educated on adenomas. My family physician nor OB/gyn are no help at all. After talking with the Radiologist last month, he said he thought I should look into having it taken out laparoscopically, because mine is very easy to get too--left lower lobe Segment 3. Therefore, I referred myself to one of the laparoscopic surgeons at the best hospital in my city. After having an MRI, I was informed yesterday, that there should be no problems having mine taken out laparoscopically. I never thought much about having surgery to have mine removed over 10 years, since it didn't bother me and I just felt blessed to have one healthy child. But now that they say mine is growing?? is the reason why I am looking at having it taken out. I have also asked about the possiblity of getting pregnant after it is removed maybe 1-2 years from now, and have been told that it should NOT grow back. Yours is still so small at 2.2, and you only have one right? I feel for you. It is definitely a hard decision, espeically if you cannot have a biopsy done. What about having a PET scan or nuclear medicine scan done? Has either of those been suggested? Or maybe they just need to watch it for a year and have you followup in 6 months with another type of scan. I hope I didn't babble too much. Let me know what other questions you have.

 
Old 03-17-2005, 10:30 AM   #23
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Re: liver adenoma or focal nodule hyperplasia

MsGneome-Mine is also in the left lobe and I was just informed yesterday that there are no "barriers" to prevent me from having mine removed laparoscopically if I chose to do so. Do u know what segment yours is in and has this option been discussed with you? MIne is Segment 3, left lower lobe.

 
Old 03-17-2005, 10:39 AM   #24
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Re: liver adenoma or focal nodule hyperplasia

RCNH- With the size of mine, there is no way I would even think about having another baby right now. That is too much of a risk. If something were to happen to an innocent child i.e. born prematurely with health problems or if the baby died, I could not live with my selfishness. I would like to have another one, but I also feel blessed with having one healthy child, especially after having a miscarriage before her. I also know there are all types of infections, adhesions, etc with abdominal surgery. With my daughter being born in the breech position, I had a scheduled C-section, so I have been cut on before, and had an infection at my incision one week after being home. Nothing life-threatening though and antibiotics cleared it right up. I definitely wouldn't want to have to go through liver surgery though when I am 50+ years old. I still have a lot of thinking to do, but if mine has been determined that it has grown over a year, I will be having mine out this summer.

 
Old 03-17-2005, 01:46 PM   #25
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Re: liver adenoma or focal nodule hyperplasia

Hi Rchn,

Thanks for the replay. I just saw a gastro doctor at Georgetown and a surgeon there and they told me not to have surgery. I am seeing Dr. Choti at Hopkins. He and the liver specialist Dr. Mezey said I should have it out. You are right its so small why do some say have it and other not. I talked to a woman who had liver surgery w/ Choti and she said it went fine, but I am so scared of surgery. They don't know what it is, but the report did say that it had a central scar which is indicative of FNH, right? But then on the next line of the report it said NOT characteric of an adenoma or FNH. So I don't know what to think. Because of where my tumor is they can't do a biopsy because it would be to dangerous and they said its not a 100% test. So I am left feeling so confused. I would like to see Dr. Scholick, but I am scared because if Choti finds out I am seeing him it would be a bad thing to talk to different doctors in the same practice, right? Or should I not even worry about that??? I don't want to make anyone mad considering I may really need them. I just feel like w/ this thing its going to grow no matter what if you get pregnant so its like have now or later. I don't know. So have you gotten pregnant with yours or plan to?? I can't remember? And how long have they been following yours at Hopkins?

Rutlude- thanks for writing. If I were you I would have the lapo surgery done ASAP! Its a pretty easy operation. My friend had it done when they discovered she had an adenoma while pregnant. She was so sick and so she had a emergency C-Section and 1 month later had lapo on her liver. She was lucky because they didn't have to perform open surgery and it was only a small amount of her liver that had to be taken out. So yours sounds like the same story. Have it done and move on- you will be just fine. Let me know what you decide.

Thanks so much for writing. This is such a difficult situation.

 
Old 03-17-2005, 04:38 PM   #26
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Re: liver adenoma or focal nodule hyperplasia

RCNH-- See this quote below concerning a post I read under "hepatic adenoma--page 3 under Bettyi. This is about the rupture of an adenoma while this young girl was pregnant. I'm not sure how large hers was, but there is definitely no way I would consider another pregnancy with 7.2 cm tumor.

in sept 2002,at the age of 23 i had and lost a healthy baby girl(at 36 wks) due to a ruptured hepatic adenoma that put a 6inch tear in my liver and caused internal bleeding for 3 days, put me in a coma for 2.5 wks, caused me to come way to close to death more than once and a list of many other health problems over the next 8mths and counting.if it had to be done i've had it or i am getting it.my point-had i not been pregnant this undetectible tumor would have been found over time with the proper scheduled symptoms and treatments.hormones throughout a pregnancy cause these types of tumors to grow rapidly. needless to say this is a very rare and complicated case that only happens to 1-1,000,000,000 people!

------------------

 
Old 03-18-2005, 01:13 PM   #27
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Re: liver adenoma or focal nodule hyperplasia

Hi Guys,

Thanks for you replies! I have a question for you all. How does your doctors know for sure that you have adenomas? Hopkins keeps telling me they don't know for sure what it is and that there is always a chance its cancer. Did your doctors tell you that?

Also, RCHN I would love to see Dr. Scholick but what if Dr. Choti found out? Wouldn't that be sort of going over his head? What do you think? I just don't want to step on anyone's toes because you know I may need them one day.

Also, RCHN are you planning on getting pregnant? and would you w/ your adenoma?

Thanks so much. I am going to Sloan on Monday will report the finding.

Take care!
Ms. Maryland

 
Old 03-29-2005, 02:05 PM   #28
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Re: liver adenoma or focal nodule hyperplasia

About a week and a half ago, I had liver resection to remove an adenoma the size of a tennis ball (7-8cm) from my liver. While they were in there, they found two other small masses that they also removed. Post surgery, they were able to confirm that the large mass was benign and sent the smaller ones out for further tests. I went in today to have my staples removed and the nurse confirmed that both of the smaller two were also benign. I haven't seen the doctor yet to explain the difference between what he thought it was and what it actually was, but prior to surgery they thought it was an adenoma from the hormones in birth control. They said the risks were rupture and turning cancerous later in life. The risk for rupture was greater during pregnancy (which I hope to do in the next couple of years), but the c-word was not a worry for decades they said. Either way, I was happy to have it taken out. Today though, the nurse said it was hyperplasia. I am expecting the doctor to explain the difference...
I guess my point in writing is to say that although the surgery was not pleasant, I am happy to have had these questionable items removed from my body. My follow up care will be ultrasounds every 3 months to make sure nothing grows back. I would recommend pushing your doctor to remove it if there is a question of what it could be. My doctor said not to bother with a biopsy since they were going to remove it anyway based on the size. I didn't experience any pain (before hand) by the way; I had an emergency appendectomy last summer and the surgeon who performed the operation saw something on my liver. He said it looked small, but that I should have it checked out - it turned out to have a much larger mass below the surface. Best of luck to all of you in getting your care needs met. If you need a recommendation, I went through the liver speciailists at the University of Michigan Hospital. One of the doctors on staff is one of the top 5 liver specialists in the country.
Also, I was told that a biopsy does not always come back with the correct diagnosis - both finding cancer when it isn't and finding nothing when it is cancerous. Something to keep in mind.

Last edited by megswis; 03-29-2005 at 02:10 PM.

 
Old 03-30-2005, 11:25 AM   #29
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Re: liver adenoma or focal nodule hyperplasia

Megswis,

I don't know if you have read any of my post "FannyLou" but I have a focal nodular hyperplasia tumor that is 7.5 x 12 x 8.5 cm. I am going to the surgeon for the first time tomorrow and find out what he recomends doing.

I just wanted to ask you about your visit and the surgery. Ronnic said that her cut was 17 inches long. I am a big baby and don't really know that I want surgery. But my family doc said the same thing you did. They really don't know what it is until it comes out and biopsy aren't always right.

Thanks in advance for any information you are up to posting. How are you feeling today?

FannyLou

 
Old 03-30-2005, 01:33 PM   #30
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Re: liver adenoma or focal nodule hyperplasia

Quote:
Originally Posted by FANNYLU
Megswis,

I don't know if you have read any of my post "FannyLou" but I have a focal nodular hyperplasia tumor that is 7.5 x 12 x 8.5 cm. I am going to the surgeon for the first time tomorrow and find out what he recomends doing.

I just wanted to ask you about your visit and the surgery. Ronnic said that her cut was 17 inches long. I am a big baby and don't really know that I want surgery. But my family doc said the same thing you did. They really don't know what it is until it comes out and biopsy aren't always right.

Thanks in advance for any information you are up to posting. How are you feeling today?

FannyLou

 
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