enigmagirl
01-25-2006, 05:47 PM
Well, I just wondered if anyone could help. Back in July of 2005 I fainted at work. I had a CT Scan of my mid-section as well as heart monitors, blood tests etc and they found nothing. EXCEPT that in looking at my heart they found a "spot" on my liver. They thought this needed additional checking, so I endured more blood tests for liver disease, all of which were normal. Did an MRI and found out that I have a tumor the size of my doctor's fist roughly. Attempted a CT-guided biopsy. They told me they must have missed the tumor b/c the biopsy results revealed normal tissue. A few weeks later I had a second biopsy only real-time sonogram one this time. Again, tissue samples came back normal. Doctor said it could be focal nodular hyperplasia or a hepatic adnoma but it's non-cancerous. If on the small chance it's the later, it's possible it could rupture. But he was just about 95% sure that was not it.
Oh, just a little history--had my gall bladder out in 2003 and have had a lot of stomach problems since. Seems they documented finding this tumor then too, but didn't follow through on checking it out.
Anyway, the doctor decided that I needed to have another CT scan 6 months from the July date and they would probably send me to see a liver transplant specialist for another opinion b/c my doctor seems worried and calls me an "enigma". So I have now had the new scan, and nothing has changed. It's still there, same size and have it set to send me to the new specialist.
I have pain under my ribcage there but it's more of a dull ache most of the time with sharp breath catching pain only rarely. I am not much of a drinker and my diet isn't completely healthy. But the doc hasn't really commented on any of that as helping or hurting.
Any ideas? Could use the help. Stressed out and don't want to go through anymore biopsy's and testing.
Oh, just a little history--had my gall bladder out in 2003 and have had a lot of stomach problems since. Seems they documented finding this tumor then too, but didn't follow through on checking it out.
Anyway, the doctor decided that I needed to have another CT scan 6 months from the July date and they would probably send me to see a liver transplant specialist for another opinion b/c my doctor seems worried and calls me an "enigma". So I have now had the new scan, and nothing has changed. It's still there, same size and have it set to send me to the new specialist.
I have pain under my ribcage there but it's more of a dull ache most of the time with sharp breath catching pain only rarely. I am not much of a drinker and my diet isn't completely healthy. But the doc hasn't really commented on any of that as helping or hurting.
Any ideas? Could use the help. Stressed out and don't want to go through anymore biopsy's and testing.
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liz49
02-01-2006, 02:46 PM
Hi..
Sounds like you've been through the wringer. The stomach probs after gallbladder surgery are real common, but don't ignore them. I had my gb out 11 years ago and still can't tolerate eggs, ham, fried food, fats..kind of a blessing, I guess, they're not great foods. Drinking and ANY liver probs is bad, so don't drink at all, if you can avoid it. I, too would be worried about a lesion/tumor the size of the dr's fist. They would HAVE to get a good sample of the tumor long before they'd consider tranplanting. (I know b'cuz my hubby has primary liver cancer and it's been tough getting him to the transplant stage (we're still working on it--4 weeks and counting) ..and he had a positive biopsy.
Sounds like you are getting lots of advice and lots of conjecturing but no answers. 2nd opinions? remember too, that we think the dr we're seeing is as worried about us and we are and they are just too busy to do that--be proactive and make them listen to you and get some answers. That's a pretty big tumor to just be assuming anything. The first choice of treatment won't be a transplant, it's the last.
Good luck!
Sounds like you've been through the wringer. The stomach probs after gallbladder surgery are real common, but don't ignore them. I had my gb out 11 years ago and still can't tolerate eggs, ham, fried food, fats..kind of a blessing, I guess, they're not great foods. Drinking and ANY liver probs is bad, so don't drink at all, if you can avoid it. I, too would be worried about a lesion/tumor the size of the dr's fist. They would HAVE to get a good sample of the tumor long before they'd consider tranplanting. (I know b'cuz my hubby has primary liver cancer and it's been tough getting him to the transplant stage (we're still working on it--4 weeks and counting) ..and he had a positive biopsy.
Sounds like you are getting lots of advice and lots of conjecturing but no answers. 2nd opinions? remember too, that we think the dr we're seeing is as worried about us and we are and they are just too busy to do that--be proactive and make them listen to you and get some answers. That's a pretty big tumor to just be assuming anything. The first choice of treatment won't be a transplant, it's the last.
Good luck!
coreday
02-15-2006, 04:14 PM
Hello,
Sorry to hear what you are going through. I have the same thing. They say its an hepatic adenoma and it is about 7cm x 6cm. I have known about it for about 1 1/2 years now and we are just watching it. Surgeons want to operate, liver specialists just want to watch it. Supposedly the tumor was caused by my being on birth control for about 9 years. They took me off the pill to see if it would shrink...it did not. So now we are watching it by getting CT scans every 6 months. I am glad it is not growing, but I am really tired of going through the CT scans and wondering what it is doing. I have not done a biopsy, nobody has really even suggested it yet. We talk about liver resection to remove it, but because of where it is ( in the middle of my liver) they are not to keen on it as they would have to take about quite a bit of liver. Every day I have a dull ache on my right side and a little towards the front..I think its this tumor, but the specialists say it has nothing to do with it..so who knows. My doctor also says rupture is very rare and he is not worried about that. I know I cannot offer much help, but sometimes for me, knowing there are others out there with this, and I am not such an enigma, makes it a little more comforting. My next CT and appt. is in April, so we will see what they decide. I hope all goes well for you and I will look for your posts on this page in the future.
Sorry to hear what you are going through. I have the same thing. They say its an hepatic adenoma and it is about 7cm x 6cm. I have known about it for about 1 1/2 years now and we are just watching it. Surgeons want to operate, liver specialists just want to watch it. Supposedly the tumor was caused by my being on birth control for about 9 years. They took me off the pill to see if it would shrink...it did not. So now we are watching it by getting CT scans every 6 months. I am glad it is not growing, but I am really tired of going through the CT scans and wondering what it is doing. I have not done a biopsy, nobody has really even suggested it yet. We talk about liver resection to remove it, but because of where it is ( in the middle of my liver) they are not to keen on it as they would have to take about quite a bit of liver. Every day I have a dull ache on my right side and a little towards the front..I think its this tumor, but the specialists say it has nothing to do with it..so who knows. My doctor also says rupture is very rare and he is not worried about that. I know I cannot offer much help, but sometimes for me, knowing there are others out there with this, and I am not such an enigma, makes it a little more comforting. My next CT and appt. is in April, so we will see what they decide. I hope all goes well for you and I will look for your posts on this page in the future.
enigmagirl
03-06-2006, 03:09 PM
Thanks! Very good to know someone else is out there with the same thing. Interesting that you have that pain in your liver area still. I have the same thing and I think it does have something to do with it, but it doesn't seem the doctors agree. Odd how we both have that. :confused: Yes, they used the same term with me--hepatic adnoma or focal nodular hyperplasia. He seems more leaning towards the latter, but I still don't want to just "watch" it and have to do CTs either every 6 months, but I am not a doctor, so we will see. April is my visit to the liver transplant specialist. He is giving a second review of my files with my other doctor, so we will see how this turns out! Thanks again for the reply and good luck!
rotlude
03-08-2006, 12:11 AM
Hi Enigma,
Just read your post. I haven't been on these boards very much since I had my liver resection in July 2005. I had what all the doctors, surgerons, etc. told me was an adenoma for 10 years. Went through one pregnancy and it grew about 3 cm in size. Finally was "told" that I needed to have my removed. It was totally 7.5 cm in size. I had liver surgery last summer and once pathology reports came back my mass was said to have been FNH-focal nodular hyperplasia. Everyone was shocked. I had an MRI and ultrasounds every year for the past 10 years. Anyways, to give you some insight in case this does become a decision for you, my surgery went very well and I am just happy to have this tumor removed. I have also been told that since it was an FNH that there is no liklihood of it returning and I am can have another child if I choose. ( I was told after my daughter was born that I could not have anymore pregnancies, so I was happy to hear that now I can). Anyways, my surgeron also found another tumor "hiding" behind the bigger one and took it out. It took me about six weeks to get back to "halfway normal", but I am just relieved to have it gone. I will go for a one year followup ultrasound in July just to make sure everything is OK. Best of luck to you. Not too sure when I'll be back on again, but if you have any questions feel free to post them.
Jen
Just read your post. I haven't been on these boards very much since I had my liver resection in July 2005. I had what all the doctors, surgerons, etc. told me was an adenoma for 10 years. Went through one pregnancy and it grew about 3 cm in size. Finally was "told" that I needed to have my removed. It was totally 7.5 cm in size. I had liver surgery last summer and once pathology reports came back my mass was said to have been FNH-focal nodular hyperplasia. Everyone was shocked. I had an MRI and ultrasounds every year for the past 10 years. Anyways, to give you some insight in case this does become a decision for you, my surgery went very well and I am just happy to have this tumor removed. I have also been told that since it was an FNH that there is no liklihood of it returning and I am can have another child if I choose. ( I was told after my daughter was born that I could not have anymore pregnancies, so I was happy to hear that now I can). Anyways, my surgeron also found another tumor "hiding" behind the bigger one and took it out. It took me about six weeks to get back to "halfway normal", but I am just relieved to have it gone. I will go for a one year followup ultrasound in July just to make sure everything is OK. Best of luck to you. Not too sure when I'll be back on again, but if you have any questions feel free to post them.
Jen
Sharrie2006
03-09-2006, 10:43 PM
Well,
This is just amazing, since I came here tonight to ask just this question. I've been trying to make sense of this ache under my ribcage for months. I've had all the blood tests, the doctors say my liver is not enlarged or inflamed, and I've had the CT scans for everything - including the gall bladder. I went over to altavista and typed in, "Can you have liver cancer and normal ALT/LFT?" Of course, the answers didn't fit my situation, which was frustrating.
Now, I read this. What's funny is that I had stomach surgery in 2004, and it's in my medical notes that there were two small lesions either on or in my liver. It said the lesions were so small that they weren't concerned. Now I read what you guys are saying, and I'm wondering if maybe I should go and get a liver biopsy done?
What's weird is that this doesn't seem to be affecting any blood tests or CT scans.
What do you think? Another biopsy?
Sharrie
Well, I just wondered if anyone could help. Back in July of 2005 I fainted at work. I had a CT Scan of my mid-section as well as heart monitors, blood tests etc and they found nothing. EXCEPT that in looking at my heart they found a "spot" on my liver. They thought this needed additional checking, so I endured more blood tests for liver disease, all of which were normal. Did an MRI and found out that I have a tumor the size of my doctor's fist roughly. Attempted a CT-guided biopsy. They told me they must have missed the tumor b/c the biopsy results revealed normal tissue. A few weeks later I had a second biopsy only real-time sonogram one this time. Again, tissue samples came back normal. Doctor said it could be focal nodular hyperplasia or a hepatic adnoma but it's non-cancerous. If on the small chance it's the later, it's possible it could rupture. But he was just about 95% sure that was not it.
Oh, just a little history--had my gall bladder out in 2003 and have had a lot of stomach problems since. Seems they documented finding this tumor then too, but didn't follow through on checking it out.
Anyway, the doctor decided that I needed to have another CT scan 6 months from the July date and they would probably send me to see a liver transplant specialist for another opinion b/c my doctor seems worried and calls me an "enigma". So I have now had the new scan, and nothing has changed. It's still there, same size and have it set to send me to the new specialist.
I have pain under my ribcage there but it's more of a dull ache most of the time with sharp breath catching pain only rarely. I am not much of a drinker and my diet isn't completely healthy. But the doc hasn't really commented on any of that as helping or hurting.
Any ideas? Could use the help. Stressed out and don't want to go through anymore biopsy's and testing.
This is just amazing, since I came here tonight to ask just this question. I've been trying to make sense of this ache under my ribcage for months. I've had all the blood tests, the doctors say my liver is not enlarged or inflamed, and I've had the CT scans for everything - including the gall bladder. I went over to altavista and typed in, "Can you have liver cancer and normal ALT/LFT?" Of course, the answers didn't fit my situation, which was frustrating.
Now, I read this. What's funny is that I had stomach surgery in 2004, and it's in my medical notes that there were two small lesions either on or in my liver. It said the lesions were so small that they weren't concerned. Now I read what you guys are saying, and I'm wondering if maybe I should go and get a liver biopsy done?
What's weird is that this doesn't seem to be affecting any blood tests or CT scans.
What do you think? Another biopsy?
Sharrie
Well, I just wondered if anyone could help. Back in July of 2005 I fainted at work. I had a CT Scan of my mid-section as well as heart monitors, blood tests etc and they found nothing. EXCEPT that in looking at my heart they found a "spot" on my liver. They thought this needed additional checking, so I endured more blood tests for liver disease, all of which were normal. Did an MRI and found out that I have a tumor the size of my doctor's fist roughly. Attempted a CT-guided biopsy. They told me they must have missed the tumor b/c the biopsy results revealed normal tissue. A few weeks later I had a second biopsy only real-time sonogram one this time. Again, tissue samples came back normal. Doctor said it could be focal nodular hyperplasia or a hepatic adnoma but it's non-cancerous. If on the small chance it's the later, it's possible it could rupture. But he was just about 95% sure that was not it.
Oh, just a little history--had my gall bladder out in 2003 and have had a lot of stomach problems since. Seems they documented finding this tumor then too, but didn't follow through on checking it out.
Anyway, the doctor decided that I needed to have another CT scan 6 months from the July date and they would probably send me to see a liver transplant specialist for another opinion b/c my doctor seems worried and calls me an "enigma". So I have now had the new scan, and nothing has changed. It's still there, same size and have it set to send me to the new specialist.
I have pain under my ribcage there but it's more of a dull ache most of the time with sharp breath catching pain only rarely. I am not much of a drinker and my diet isn't completely healthy. But the doc hasn't really commented on any of that as helping or hurting.
Any ideas? Could use the help. Stressed out and don't want to go through anymore biopsy's and testing.
enigmagirl
03-10-2006, 10:54 AM
Thanks Jen. That is helpful. I have heard the surgery could be rough and a painful, long recovery so it's nice to hear it went well for you. I have sharp pain every so often and a dull ache every day. I just want it out also. I am just trying to stay positive until April 6th when I go to KU Med Center. Glad you are doing better! Thanks for the post!
enigmagirl
03-13-2006, 06:48 PM
Interesting the similarities, Sharrie. What is odd is that they say nothing is wrong with me either, except that I have this tumor which with 2 biopsies they say the tissue is normal. But I experience the pain there and its mostly an annoyance, but at times is pretty intense. But I had a very rough time with my first biopsy. I don't know that I would recommend a CT guided one, but ask for a sonogram biopsy.
I also was able to get my appointment moved up. I wasn't able to get into the liver transplant specialist until April 6, but they called today with a cancellation for THURSDAY! I am excited to knock off about 3 weeks of time, but incredibly nervous just the same. From reading the different posts, I am not sure I want surgery. But at the same time, I want the pain and the stress of having the tumor there to be a thing of the past! Not sure what to do. I guess I can't decide until I get the specialists opinion. Is there anyone out there that would definitely recommend or not recommend surgery?
I also was able to get my appointment moved up. I wasn't able to get into the liver transplant specialist until April 6, but they called today with a cancellation for THURSDAY! I am excited to knock off about 3 weeks of time, but incredibly nervous just the same. From reading the different posts, I am not sure I want surgery. But at the same time, I want the pain and the stress of having the tumor there to be a thing of the past! Not sure what to do. I guess I can't decide until I get the specialists opinion. Is there anyone out there that would definitely recommend or not recommend surgery?
enigmagirl
03-17-2006, 05:46 PM
~~Quick Update~~
I was able to get in earlier than April due to a cancellation to see the liver specialist. I spoke with two doctors and a nurse who seems ligitimately concerned and wanted to know how to make me happy. It was a nice change from the other doctor. They took more blood. Wanted to do their own analysis there I guess and a few more tests, just to rule out anything odd they said.
Then they said after they look at my films from the other hospital I may need another CAT scan/MRI. I was OK with that. But then they also said they want me to see the surgeon :eek: !! Just a little worried. I am nervous about surgery. The most "major" surgery I had was laparascopic when they removed my gall bladder. But I guess I also want it because if they get rid of this tumor then the stress and symptoms should go right along with it.
I was very surprised to get a call not two hours later saying they were able to get me into the surgeon on the 27th! I was shocked that it's happening so quickly. I guess I could be in surgery in no time. I guess that's good. No more time to stress!
If anyone has any questions you think I should ask the surgeon, please share. I am not sure what to ask or what to consider before going ahead!
Thanks!
Enigmagirl
I was able to get in earlier than April due to a cancellation to see the liver specialist. I spoke with two doctors and a nurse who seems ligitimately concerned and wanted to know how to make me happy. It was a nice change from the other doctor. They took more blood. Wanted to do their own analysis there I guess and a few more tests, just to rule out anything odd they said.
Then they said after they look at my films from the other hospital I may need another CAT scan/MRI. I was OK with that. But then they also said they want me to see the surgeon :eek: !! Just a little worried. I am nervous about surgery. The most "major" surgery I had was laparascopic when they removed my gall bladder. But I guess I also want it because if they get rid of this tumor then the stress and symptoms should go right along with it.
I was very surprised to get a call not two hours later saying they were able to get me into the surgeon on the 27th! I was shocked that it's happening so quickly. I guess I could be in surgery in no time. I guess that's good. No more time to stress!
If anyone has any questions you think I should ask the surgeon, please share. I am not sure what to ask or what to consider before going ahead!
Thanks!
Enigmagirl
zydecomom
03-17-2006, 06:29 PM
Hi Rotlude. I was reading about 59 pages of posts from last year and I came across you saying that you live in SC but right near the border of NC. Did you happen to have your surgery in Charlotte? My liver specialist is in Charlotte, too, and I have FNH. He doesn't recommend surgery because of the size but I worry over the thing incessantly, especially now because I'm about to undergo invitro and hopefully pregnancy. I just wonder if you would recommend your doctor and who it is and where you had surgery, so if it comes to that with me, at least I have some sort of recommendation. For all I know we have the same doctor. I'm glad to hear you are doing well. Your posts and the others were very reassuring. Sorry to post on here but that thread ended. :wave:
enigmagirl
04-24-2006, 06:36 PM
I just had a third biopsy, this time at a new hospital. The gal told me that since my doctor is on vacation for two weeks, I can probably talk to his nurse, but the report read something about "benign hepatocytes"? She couldn't explain it and I had to leave a message for the nurse to call me back. In the meantime, does anyone know what that means? I had a nuclear medicine test that showed "low uptake of lesion consistent with adenoma", so I assume that meant that the tumor is more of a hepatic adenoma rather than FNH.
Please help if you can! I am really stressing. I think I just want it removed! But I am stressing over that too. If it's a hepatic adenoma, I am told this can turn malignant. Anyone?? :confused:
Enigma
Please help if you can! I am really stressing. I think I just want it removed! But I am stressing over that too. If it's a hepatic adenoma, I am told this can turn malignant. Anyone?? :confused:
Enigma
corricatt
06-04-2006, 05:35 PM
I had the liver resection surgery in April, to remove a benign tumor and my gall bladder. 5.5 days in the hospital and a huge 11 inch scar. They said that they had to take the gall bladder when any surgery is performed on the liver. I refused a biopsy because I had heard that it was extremely painful and you have to spend the night in the hospital anyway. Why go through that twice? The gastro I saw prior to the surgeon told me that these types of tumors are common in women of child bearing age. I also read through extensive online research that they normally go undetected. The tumors usually don't get larger and the dr's don't like to take them out unless they reach 6 cm or become symptomatic. I began to feel mine although it was only about 4 cm. It's been 7 weeks since the surgery. I'm in tremendous pain all the time. I've had to return to work. My surgeon won't listen to me when I tell him that I have alot of pain. I can certainly understand the "wanting to get the tumor out". It's so scarey knowing there is an unwanted foreign thing that's like a parasite living within you. Is my quality of life better now? Absolutely NOT! I could cry all day if I wasn't trying so hard to "deal" with this pain. Oh, and by the way, they called my tumor an hemoangioma (I think, because the assistant surgeon told me that 2 days after the surgery when I was still delerious with general anesthesia and morphine). They haven't told me to come back in a year, they really didn't tell me much at all. I think I'll go back to the gastroenterologist about the pain because it could very well be adhesions causing it. Good luck to all of you.