momtocj2003
01-14-2006, 03:39 PM
Hello all, I hope I can join you here (not that I want to but by necessity). I saw the awesome large thread below about FNH but I didn't want this to get lost and I'm hoping to kind of renew what's been discussed down there as well. Hopefully you will all come back and keep giving advice for those of us new to this disorder or is it a disease? I don't even know.
Okay here's my story... New's years eve day I went to the local clinic (not my regular doc) for what I thought to be gallbladder issues. The doc thought it was stones and sent me for an u/s which showed a healthy gall bladder but a mass in my liver. So they of course sent me for the CT which came back indeterminate as well as showed a nodule in my right lung that didn't completely show up. By now this goofey doc has me thinking it could be cancer and I'm freaking out rightfully so at the ripe old age of 28. So they sent me for a chest CT and a liver MRI. The chest CT came back with a benign nodule on the lung possibly due to childhood asthma and boughts of pnuemonia/bronchitis, we will repeat the CT in 6 months to make sure it doesn't grow. Now the liver came back of course with FNH. My tumor is small (2 x 2.4 cm) but it must be the position that is causing the pain. It's strange because when I eat fattier foods it hurts worse (which is why I thought gall bladder) and I noticed a big flare up after going back on my birth control pills (we had tried for another baby for 6 months and now decided to wait). So everything I read pointed to this thing being estrogen affected. I finally got into my reg. doc who confirmed this and put me on the progesterone only pill (mini-pill) for now with a referral to a Gastroentorolgist (sp?). Now I'm awaiting the Gastro to call me for an appointment to see if surgery will be necessary.
My issues are this, the surgery stories I'm reading sound pretty scary but I haven't read to much on a successful pregnancy with one of these. I've read of people discovering them well into pregnancy and able to go on to deliver but nobody that knowingly had this and got pregnant ya know?! I really want to have another baby but at what risk, this has been the question bearing on my mind. Any thoughts, advice or maybe another website I haven't seen yet that may provide some answers? My other thought is if birth control puts me in this much pain what will pregnancy do??? Ack! Anyways, thanks for reading my novel and hopefully someone can make me feel so not alone!
_________________________
Angel
My blessing Christopher 9/10/2003
Okay here's my story... New's years eve day I went to the local clinic (not my regular doc) for what I thought to be gallbladder issues. The doc thought it was stones and sent me for an u/s which showed a healthy gall bladder but a mass in my liver. So they of course sent me for the CT which came back indeterminate as well as showed a nodule in my right lung that didn't completely show up. By now this goofey doc has me thinking it could be cancer and I'm freaking out rightfully so at the ripe old age of 28. So they sent me for a chest CT and a liver MRI. The chest CT came back with a benign nodule on the lung possibly due to childhood asthma and boughts of pnuemonia/bronchitis, we will repeat the CT in 6 months to make sure it doesn't grow. Now the liver came back of course with FNH. My tumor is small (2 x 2.4 cm) but it must be the position that is causing the pain. It's strange because when I eat fattier foods it hurts worse (which is why I thought gall bladder) and I noticed a big flare up after going back on my birth control pills (we had tried for another baby for 6 months and now decided to wait). So everything I read pointed to this thing being estrogen affected. I finally got into my reg. doc who confirmed this and put me on the progesterone only pill (mini-pill) for now with a referral to a Gastroentorolgist (sp?). Now I'm awaiting the Gastro to call me for an appointment to see if surgery will be necessary.
My issues are this, the surgery stories I'm reading sound pretty scary but I haven't read to much on a successful pregnancy with one of these. I've read of people discovering them well into pregnancy and able to go on to deliver but nobody that knowingly had this and got pregnant ya know?! I really want to have another baby but at what risk, this has been the question bearing on my mind. Any thoughts, advice or maybe another website I haven't seen yet that may provide some answers? My other thought is if birth control puts me in this much pain what will pregnancy do??? Ack! Anyways, thanks for reading my novel and hopefully someone can make me feel so not alone!
_________________________
Angel
My blessing Christopher 9/10/2003
Sponsor
amykcpa
01-14-2006, 08:16 PM
momtocj2003:
Hi -- I also have fnh but mine is a lot larger than yours -- probably about twice the size. I don't have any consistent pain -- quite honestly not much pain at all. I found out about it in August 2004 by what else -- an ultrasound of my gallbladder. Incidently -- my gallbladder is perfectly fine but I have this fnh.
I did get an opinion from a liver specialist and I had a liver biopsy by a liver transplant surgeon.
I will tell you what I was told but I definitely suggest that you seek out an opinion from a hepatologist or liver transplant surgeon before proceeding with a pregnancy. You will also want to advise your obgyn of the situation so that your fnh can be monitored carefully.
I don't have any children and don't plan to in the future so my doctors did not dwell on the fnh/pregnancy issues.
I was told that I could have a baby if I wanted to. I was further told that my fnh would be monitored carefully throughout the pregnancy -- I think every three months. I know other women on this board have had successful pregnancies and I think all of them had c-sections to prevent undue stress on the fnh during delivery.
Your fnh is tiny so you are very lucky but I do know that location can play an important role as to whether it is painful or might cause problems for you in the future or during the pregancy -- which is why it is important to get the go ahead from a liver specialist before proceding with the pregnancy.
My doctors don't seem too worried about fnh being affected by estogen. I was told that I could continue taking b/c pills but that my fnh would be monitored if I chose to do so -- again every three months.
After sporadically researching on the internet and being on this list for the past one and a half years I am not so sure that I believe fnh is not affected by estrogen -- it is a highly debated issue. So for me personally I just don't want to do anything that is going to cause a surge in estrogen -- but that is me. And I have never dealt very well with my fnh emotionally.
I was also told that fnh is not surgically removed unless it is causing pain. I have seen that surgical consideration is also given to fnh lesions that are very large.
I hope this information helps. I am sure that others will chime in to give you advice as well. There are several frequent fnh posters that have been through quite a lot and have had many more doctor appointments than me with an opportunity to ask questions.
Hi -- I also have fnh but mine is a lot larger than yours -- probably about twice the size. I don't have any consistent pain -- quite honestly not much pain at all. I found out about it in August 2004 by what else -- an ultrasound of my gallbladder. Incidently -- my gallbladder is perfectly fine but I have this fnh.
I did get an opinion from a liver specialist and I had a liver biopsy by a liver transplant surgeon.
I will tell you what I was told but I definitely suggest that you seek out an opinion from a hepatologist or liver transplant surgeon before proceeding with a pregnancy. You will also want to advise your obgyn of the situation so that your fnh can be monitored carefully.
I don't have any children and don't plan to in the future so my doctors did not dwell on the fnh/pregnancy issues.
I was told that I could have a baby if I wanted to. I was further told that my fnh would be monitored carefully throughout the pregnancy -- I think every three months. I know other women on this board have had successful pregnancies and I think all of them had c-sections to prevent undue stress on the fnh during delivery.
Your fnh is tiny so you are very lucky but I do know that location can play an important role as to whether it is painful or might cause problems for you in the future or during the pregancy -- which is why it is important to get the go ahead from a liver specialist before proceding with the pregnancy.
My doctors don't seem too worried about fnh being affected by estogen. I was told that I could continue taking b/c pills but that my fnh would be monitored if I chose to do so -- again every three months.
After sporadically researching on the internet and being on this list for the past one and a half years I am not so sure that I believe fnh is not affected by estrogen -- it is a highly debated issue. So for me personally I just don't want to do anything that is going to cause a surge in estrogen -- but that is me. And I have never dealt very well with my fnh emotionally.
I was also told that fnh is not surgically removed unless it is causing pain. I have seen that surgical consideration is also given to fnh lesions that are very large.
I hope this information helps. I am sure that others will chime in to give you advice as well. There are several frequent fnh posters that have been through quite a lot and have had many more doctor appointments than me with an opportunity to ask questions.
njfashionista
01-15-2006, 06:24 PM
Sorry for all that youve been going through..if you have seen my previous posts im a 24 y/o woman who was diagnoses with FNH in june of 05 found it post op appendectomy. The liver biopsy confirmed it was FNH my tumor measured at 10cm x 9 cm extremely large!! I met with a liver surgeon/transplant who is top notch in NYC so discuss my options which were a livere section or just watch it but b/c of its size sooner or later surgery would have to take place so because Ive been married for 6 yrs already with no children yet and plans of pregnancy next yr the surgeon thought it was best to have it removed now b/c of the complications it could give me in my future pregnancy. I never have taken birth control pills so how this thing grew in my liver to tthat size is baffling! My resection was on Nov 8 and im recovering well-few complications like 105 fever 11 days after discharge but now am doing really great! Good luck and keep us updated
momtocj2003
01-16-2006, 12:00 PM
Thank you both so much for the responses. It's so nice to know I'm not alone out here with this weird thing. By the way, do you guys get really mad or upset about this? I mean who said this foreign thing could invade my body???? Urgh, okay that was vent, sorry. I'm glad to hear the resection went well and I did read your story and was wondering how you were doing after those complications, no fun. My only worry is that this small fnh is very painful, it must be because of where it's located or something because by everything I read it's relatively small in size and shouldn't bother me. Well I still haven't heard from the Gastro yet (they have the liver specialists at that office) and hope to get some answers soon, until then I just wait.
Has anyone found anything to make the pain better like warm bath, ibuprofen etc.? It's not completely unbearable but it's not comfortable either. :confused: Thanks again so much ladies, you have been a great help. I hope you don't mind if I ask more questions along the way.
Has anyone found anything to make the pain better like warm bath, ibuprofen etc.? It's not completely unbearable but it's not comfortable either. :confused: Thanks again so much ladies, you have been a great help. I hope you don't mind if I ask more questions along the way.
FANNYLOU
01-16-2006, 04:20 PM
Hello Everyone
I discovered by FNH Nov 04 and had a resection July 05. I had 3 pregnacies and didn't even know the tumor was there. I felt horrible pain during each of my pregnacies and each time they said it was my galbladder, but never saw a thing. The tumor was on the right posterior lobe. I believe it was there during each pregnacy over a 10 year period. They just never saw it with ultrasounds. I had dozens trying to find out what was wrong. Finally after my third child who was 3 before we found the tumor the pain wouldn't go away. I was in the hospital 9 days and it was worth not feeling the fullness and throbbing pain everyday. I ended up taking Loratab for the pain it was so bad before surgery. I have a huge scar 67 staples, I think and 21" length in total. I still take Loratab 6 months later for the pain as needed. But I also have a small 1 cm tumor that was left in there and a new tumor that has come up since surgery. So I don't know if the pain is from the small tumors or from the scar tissue and healing pains. I never found anything over the counter to help with the pain. I don't take bc pill and I need a hysterectomy.
I have adenomyosis and fibroids in my uterus and have always had csyst on my ovaries on and off. I believe all of this has got to be related and would love to know how and why. Does anyone else have female problems with the FNH?
Fannylou
I discovered by FNH Nov 04 and had a resection July 05. I had 3 pregnacies and didn't even know the tumor was there. I felt horrible pain during each of my pregnacies and each time they said it was my galbladder, but never saw a thing. The tumor was on the right posterior lobe. I believe it was there during each pregnacy over a 10 year period. They just never saw it with ultrasounds. I had dozens trying to find out what was wrong. Finally after my third child who was 3 before we found the tumor the pain wouldn't go away. I was in the hospital 9 days and it was worth not feeling the fullness and throbbing pain everyday. I ended up taking Loratab for the pain it was so bad before surgery. I have a huge scar 67 staples, I think and 21" length in total. I still take Loratab 6 months later for the pain as needed. But I also have a small 1 cm tumor that was left in there and a new tumor that has come up since surgery. So I don't know if the pain is from the small tumors or from the scar tissue and healing pains. I never found anything over the counter to help with the pain. I don't take bc pill and I need a hysterectomy.
I have adenomyosis and fibroids in my uterus and have always had csyst on my ovaries on and off. I believe all of this has got to be related and would love to know how and why. Does anyone else have female problems with the FNH?
Fannylou
momtocj2003
01-17-2006, 10:53 AM
Oh thank you Fannylou, I had a very similar experience just not to the extent of you. I had a horrible pregnancy with my son including preclampsia and ended up with an emergency c-section. I never knew if the pain was from pregnancy or not. Shortly after my son was born I kept complaining of the RUQ pain, feeling nauseaous etc. so they ran the battery of tests. The first ab u/s the tech said she thought I had fatty liver disease but the doctor brushed it off and said it was nothing to worry about and told me to get to a healthy BMI (I still had all the pg weight obviously). Then they did a HIDA scan and an upper GI and found a hiatal hernia (sp?) and said all the pain was from this causing acid reflux and put me on a med for that. Well time has gone on for two years now and the pain comes and goes but I'm still thinking it's the reflux so they change my meds etc. I went back on the pill a few weeks ago since we were unsucessful getting pg and I didn't want two birthday's so close. Well finally I thought it had to be my gall bladder, I felt so ill I had not slept in days so I went back (I'm at a different clinic now) and so begins my story above. They also found in the scans that I have paraovarian cysts which I can't find much about, I know that ovulation is painful as well as menstration. My mom had a hysterectomy at 40 because of cysts on her ovaries so I'm not sure if it's hereditary or not. So long story short, yep, I have female issues too but have always chalked them up to it just being my unique body, I'm not so sure anymore.
I'm glad your surgery went well and it's very encouraging to hear these stories. Honestly, the thought of surgery scares the crap out of me but the pain and burning in the back has become unbearable sometimes and keeps me awake at night. My side is also tender to the touch which seems strange seeing as how my tumor is so much smaller then everyone else's. My family doc referred me to a Gastro who with I have an appt. next Wednesday but I just called the local Hematology office because if someone is going to operate I want it to be an expert! ha ha Just waiting to hear back from them with an appointment. I still don't know what they will say, maybe it's too small to operate on or in a bad place. Mine is in segement #5 on the right lobe which is maybe why it makes me nauseaous, I don't know. I just wish I knew more about this and what to expect ya know? You guys here are wonderful for sharing this information, I'm just trying to take it all in and do as much research as possible so I can be well informed.
Oh and does anyone else feel a bit violated? I feel like some foreign thing has invaded my body and it makes me feel a little sad and angry about it all. Are these emotions normal? I thought I would feel better after I found out it wasn't cancer and I do but I still feel a bit off about it all. Maybe I'm just crazy!
I'm glad your surgery went well and it's very encouraging to hear these stories. Honestly, the thought of surgery scares the crap out of me but the pain and burning in the back has become unbearable sometimes and keeps me awake at night. My side is also tender to the touch which seems strange seeing as how my tumor is so much smaller then everyone else's. My family doc referred me to a Gastro who with I have an appt. next Wednesday but I just called the local Hematology office because if someone is going to operate I want it to be an expert! ha ha Just waiting to hear back from them with an appointment. I still don't know what they will say, maybe it's too small to operate on or in a bad place. Mine is in segement #5 on the right lobe which is maybe why it makes me nauseaous, I don't know. I just wish I knew more about this and what to expect ya know? You guys here are wonderful for sharing this information, I'm just trying to take it all in and do as much research as possible so I can be well informed.
Oh and does anyone else feel a bit violated? I feel like some foreign thing has invaded my body and it makes me feel a little sad and angry about it all. Are these emotions normal? I thought I would feel better after I found out it wasn't cancer and I do but I still feel a bit off about it all. Maybe I'm just crazy!
njfashionista
01-19-2006, 09:33 AM
I definatley felt violated and still am very upset on why this happened to me and most importantly how this thing came about? Im scared of doing something that will make another thing grow! My FNH was in my right lope close to portal vein in seg 7/8 It actually never caused me any type of pain at all-I had no idea anything was even wrong with me. I used to do millions of crunches and exercise and never felt a thing sigh Im just glad I finally did find it!! I feel so great now, I havent felt like this since before my diagnosis of FNH. Surgery is rough atleast for me anyway, but if that is needed eventually, we are here for you to answer any questions you may have. Im so glad i found this board while"googling" FNH after my diagnosis, its great to speak to others with FNH!
momtocj2003
01-20-2006, 10:19 AM
njfashionista - Thanks for replying, I'm glad I'm not the only one who feels this way. It's like, "I didn't order this!" :confused: But alas I can't dwell on the why anymore just the where to go from here. I have my appt. with the Gastro Wednesday morning and hopefully I'll get some answers. Thank you so much for the support, I too am glad I found this site while googling FNH, I'd be lost without it! Thanks so much everyone!
momtocj2003
01-25-2006, 12:48 PM
Well I had my Gastro appt. today and here's the update:
Just when I thought they had run out of ways to take pictures of my guts they dig up yet another way. I go in on Monday to Abbott to have a SPECT scan done, fun stuff. Has anyone had this yet? Can you tell me what it was like? They said this will give them a little different perspective on the tumor. My tumor is symptomatic and flared with the birth control which leads them to believe it is an Adenoma shadowing as FNH which is very common I guess. So I’ll have this new scan Monday, had a full liver blood panel today and will go back on the 21st of February to meet with the Hepatologist (liver specialist) and his nurse practioner to go over the results of these tests. I can't believe how busy these folks are to have to book a month out!
Oh and the Gastro thinks that I’m too young to have this Osteopenia to the state that I have it and thinks the extra calcium I take may not be doing any good so he suggested to my regular doc to have that followed up by a Renal specialist. I was diagnosised last year with Osteopenia at the ripe old age of 26, my mom, grandma and great-grandma all have Osteoperosis and Osteopenia is the first stage. My physician put me on 1500mg of calcium a day to supposed help. Boy I’ll have my own person practice here soon!
Just when I thought they had run out of ways to take pictures of my guts they dig up yet another way. I go in on Monday to Abbott to have a SPECT scan done, fun stuff. Has anyone had this yet? Can you tell me what it was like? They said this will give them a little different perspective on the tumor. My tumor is symptomatic and flared with the birth control which leads them to believe it is an Adenoma shadowing as FNH which is very common I guess. So I’ll have this new scan Monday, had a full liver blood panel today and will go back on the 21st of February to meet with the Hepatologist (liver specialist) and his nurse practioner to go over the results of these tests. I can't believe how busy these folks are to have to book a month out!
Oh and the Gastro thinks that I’m too young to have this Osteopenia to the state that I have it and thinks the extra calcium I take may not be doing any good so he suggested to my regular doc to have that followed up by a Renal specialist. I was diagnosised last year with Osteopenia at the ripe old age of 26, my mom, grandma and great-grandma all have Osteoperosis and Osteopenia is the first stage. My physician put me on 1500mg of calcium a day to supposed help. Boy I’ll have my own person practice here soon!
amykcpa
01-25-2006, 06:57 PM
momtocj2003:
I have not had a SPECT test done. I'm not even sure I know what that one is.
It sounds like you are being very well taken care of which is a good thing. I'm sure the doctors will eventually figure this out for you.
It is true that fnh usually doesn't cause pain while an adenoma more often does cause pain. Adenoma is also an estrogen driven tumor so b/c pills can make it increase in size and I think hurt too.
Do you know if your liver tumor has a central scar. If it does it would have been seen on the mri. Typically fnh has a central scar -- although not always.
Does your tumor have defined border? Adenoma usually does but fnh usually does not. Of course nothing is completely certain with these liver tumors. Adenomas and fnh share a lot of features in common which makes it difficult to determine which type of liver tumor you have.
I will say it doesn't seem too uncommon for the doctors to have difficulty in arriving at a definitive diagnosis. If you read back in some of the threads this was my case as well.
Do you know if you qualify for a biopsy of the tumor? That is what I had although the biopsy results can be difficult to interpret too.
If I want to see the liver specialist I have to wait seven months for an appointment. So one month isn't so bad. I know at most major medical centers the wait is expected to be about three months.
How did you find out you had osteopenia? Did you have symptoms? Osteoporosis runs in my family too.
Good luck with your test. I hope this will give the doctors some further insight as to exactly what your liver tumor is.
I have not had a SPECT test done. I'm not even sure I know what that one is.
It sounds like you are being very well taken care of which is a good thing. I'm sure the doctors will eventually figure this out for you.
It is true that fnh usually doesn't cause pain while an adenoma more often does cause pain. Adenoma is also an estrogen driven tumor so b/c pills can make it increase in size and I think hurt too.
Do you know if your liver tumor has a central scar. If it does it would have been seen on the mri. Typically fnh has a central scar -- although not always.
Does your tumor have defined border? Adenoma usually does but fnh usually does not. Of course nothing is completely certain with these liver tumors. Adenomas and fnh share a lot of features in common which makes it difficult to determine which type of liver tumor you have.
I will say it doesn't seem too uncommon for the doctors to have difficulty in arriving at a definitive diagnosis. If you read back in some of the threads this was my case as well.
Do you know if you qualify for a biopsy of the tumor? That is what I had although the biopsy results can be difficult to interpret too.
If I want to see the liver specialist I have to wait seven months for an appointment. So one month isn't so bad. I know at most major medical centers the wait is expected to be about three months.
How did you find out you had osteopenia? Did you have symptoms? Osteoporosis runs in my family too.
Good luck with your test. I hope this will give the doctors some further insight as to exactly what your liver tumor is.
momtocj2003
01-27-2006, 02:58 PM
Amy - Thanks for the info and kind words, I hope to finally get to the bottom of this too. I poured over the imaging results but none of them mention a central scar so maybe it doesn't have one or it's just not in the reports. I think the u/s said it had well defined borders but none of the other CT's or MRI mention that so who knows. They haven't mentioned biopsy but I'm sure that will be the next step if it's in an ideal location. I know a month is not so bad, I'm such an impatient person these days! LOL
Oh and the osteopenia, funny story actually, I went to the health fair at the state fair with my mom and family and she had the bone density test to make sure her Fosamax (sp?) was working and I thought I'd do one for fun. Well my scan turned out almost as bad as hers. So I scheduled a follow-up with my family doc and they did the actual scan (the fair had the heal thing) and that came back with moderate (can't remember the level) bone loss so they put me on the calcium. I also had to do a 24 hour urine collection to make sure I wasn't spilling the calcium and that came back fine, what fun though! (note the sarcasim) I would definately go in and get a scan just based on family history, it can't hurt to request it and better to know ahead of time before you break that hip! Let me know if you have any more questions and I'll be happy to fill you in, I at least know a thing or two about that subject. ;)
Angel
Oh and the osteopenia, funny story actually, I went to the health fair at the state fair with my mom and family and she had the bone density test to make sure her Fosamax (sp?) was working and I thought I'd do one for fun. Well my scan turned out almost as bad as hers. So I scheduled a follow-up with my family doc and they did the actual scan (the fair had the heal thing) and that came back with moderate (can't remember the level) bone loss so they put me on the calcium. I also had to do a 24 hour urine collection to make sure I wasn't spilling the calcium and that came back fine, what fun though! (note the sarcasim) I would definately go in and get a scan just based on family history, it can't hurt to request it and better to know ahead of time before you break that hip! Let me know if you have any more questions and I'll be happy to fill you in, I at least know a thing or two about that subject. ;)
Angel