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Old 03-27-2006, 12:10 PM   #1
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Focul Nodular Hyperplasia

Hello Everyone!

I noticed that our old thread had been closed after 294 post. I was just checking in to see how everyone is doing. I have noticed a couple of new post about FNH. There is tons of information out there on the old thread. I am doing good. Still not 100%, 8 months out since the liver resection and two tumors as of December 2005. I will followup with my surgeon again in July 2006.

Miss reading and posting with everyone!

Fannylou

 
Old 03-28-2006, 11:32 AM   #2
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Re: Focul Nodular Hyperplasia

Hi Fannylou, I'm a newbie but enjoyed all the information I got from the old thread and wondered how all of you were doing. I have FNH that is just being monitored for now, about to undergo invitro fertilization and hope it doesn't grow from the hormones for that or from pregnancy, if I'm lucky enough to get pregnant. I've been given the blessing of my liver doctor, so hopefully it won't affect it. So do you have 2 tumors still after your resection?

 
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Old 04-01-2006, 02:26 AM   #3
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Re: Focul Nodular Hyperplasia

Hi Fannylou,

I survived liver cancer.. I had my liver resection in December 2004. I am beginning to wonder if I will ever be 100% again.. but am thankful for surviving a cancer that most people don't.. Primary liver Cancer has a very high mortality rate.. I too have since found out that I will probably never be able to get life insurance.. thank god my company had offered it to me just 2 months before I was diagnosed.. they had also offered me Critical care Insurance which I didn't sign up for.. I wish I had now.. but I was fortunate enough to work with some great people who not only donated time to me so I continued to get paid.. but took my daughters xmas list that year and bought her everything on it.. they also brought my family xmas dinner and donated over 23 grocery card gift certificates..
Having cancer has changed my life.. I sure don't take things for granted anymore.. *smiles* glad to hear you are doing well..

Nancy

 
Old 04-04-2006, 06:48 AM   #4
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Re: Focul Nodular Hyperplasia

Good Morning,

Zydecomom---I do still have two tumors still. One, we knew about at the time of surgery. It was very small and would require a 75% resection to remove it at the time of the resection. The second tumor was not found until 8 weeks post op.

Nancycasc---You are very blessed to have survived the cancer. I have read several of your post. You are a very lucky women. I know what you mean by not feeling 100%. You had liver cancer which is much worse than me, but I still don't feel good. My side still hurts sometimes and I still have nausea a good bit. Do you still take pain meds? How do you feel overall. I feel like a big whimp.

Fannylou

 
Old 04-04-2006, 06:33 PM   #5
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Re: Focul Nodular Hyperplasia

Hi everyone. Fannylou, when you have pain, is it constant? I can't ever tell if my pain is from FNH or something else, like maybe just the liver contracting. I just started Lupron and am about to undergo invitro fertilization, and I've noticed the pain has become more frequent, but it has never been a constant pain, just little pangs here and there. The pain has been worse the past few months, a little sharper, but it never "stays" there. What is yours like?

Oh, I should add that the Lupron is making me feel jittery and anxious all over like i drank 5 cups of coffee, so that's why I'm wondering if it's making my liver contract like too much caffeine can do that to the colon?

Also, have you had surgery yet to remove your FNH or are they just monitoring the two you have right now?

Last edited by zydecomom; 04-04-2006 at 06:37 PM.

 
Old 04-05-2006, 08:15 AM   #6
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Question Re: Focul Nodular Hyperplasia

Hello everyone. I am 42yrs old and was just recently diagnosed with 3 FNH tumors ranging in size of less than 1 cm for the smallest and 8.3X6.7cm on the largest. I have been passed from doctor to doctor who all seem to
have a different opinion from "just watch it" to removing the right
lobe of the liver.

After 4 months, 2 biopsies and numerous other tests, I am scheduled
to have a radiofrequency ablation of the largest tumor April 26. Liver resection is my only other option and I'm not keen on that.

Has anyone had RFA on their benign liver tumors and what was the outcome?

Thanks

 
Old 04-06-2006, 08:27 AM   #7
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Re: Focul Nodular Hyperplasia

I had a liver resection last July and still have two FNH tumors about 2cm each. One on the right and one on the left. We are just monitoring them for now. But the one they did remove was about the size of a football. My liver surgeon has mentioned doing RFA on the smaller two if they continue to grow. I would like to know more about that procedure myself, because the resection was really hard. I was in the hospital 9 days.

Most of my pains come and go. Mostly I feeling the throbbing and burning in the urq and back. Sometimes I get real nauseated. Sometimes I just feel the knots from the incission from the resection and they hurt. But most of that is due to scar tissue.

God Bless,
Fannylou

 
Old 04-07-2006, 05:40 PM   #8
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Re: Focul Nodular Hyperplasia

I still have some pain.. though I think its mostly the huge scar on my front.. and I have developed tendonitis in both shoulders.. the Ortho Dr says its probably due to so many months of inactivity... but the worse thing.. the one thing that drives me absolutely crazy is the itching.. i itch all the time.. all over my body... it never stops... I have scratched till i bled... and wtih the tendonitis its hard to reach my back.. does anyone else itch all the time?

I take ibuprofen for pain.. but nothing else.. sometimes it helps.. sometimes it doesn't...


 
Old 04-17-2006, 08:57 AM   #9
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needinfo123... HB User
Re: Focul Nodular Hyperplasia

Hello All,

I was diagnosed with FNH almost 2 year ago. I have three tumors. My largest tumor is 4.3 x 4.3. We are montioring mine every 6 months. The tumors have remained stable so far. My husband and I want to have a baby. I have started fertility medication and was wondering if anyone has any experience with FNH and fertitility med.'s? My dr. says there is a chance the tumors will grow but can't say more than that. I would appreciate anyone with fertility medication and FNH sharing their experience with me.

Thank you!

 
Old 04-18-2006, 12:33 PM   #10
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Re: Focul Nodular Hyperplasia

Hi Everyone,

I am new to this board and am looking for some support. Let me begin with some background info. I began to feel ill back in mid-February of this year. I was running fevers anywhere from 100-101 every day, had a awful headache, dizziness and lightheadedness, general fatigue and malaise, and nausea. I went to my PCP in mid-March after dealing with this for a month (actually my PCP made me come see him). I work at a nursing home and he is our medical director also, so I see him everyday and I was describing how I had been feeling lately to him and he said "come see me this afternoon". Anyways, I went to him and he ran a bunch of bloodwork, which included an LFT, and they all came back within normal limits. A chest x-ray was also done, which was normal. He was really stumped and couldn't come up with a diagnosis, except for FUO(fever of unknown origin).

A week later, I was at work one morning and suddenly got violently ill. I was extremely lightheaded and passed out (luckily I was in a patient room and collapsed onto a bed), my nausea intensified, and I was very shaky. I had a co-worker call my doctor, who order me come over to his office immediately. Again, he ran more bloodwork and this time an EKG, but nothing was found. He did mention sending me to an infectious disease doctor. Later that night I felt sicker than I ever had before. I called the doc back and he said go to the ER. So thats what I did...my mom took me to the ER. More tests were run. They did another EKG, more bloodwork, blood cultures, chest and abdominal x-rays, and a head CT. Again, nothing is found, ER doc suggests I follow up with an infectious disease doctor.

So I go home, and later that evening, in addition to the nausea that had kept me from eating for a week, I developed vomiting so severe I could not even hold a sip of water down. I also developed severe RUQ pain that radiated to my back. I was miserable with this for two more days, and then, out of desperation, called my doc back. He decided to direct admit me to the hospital for intravenous rehydration (I was seriously dehydrated) and more tests. Saturday morning I went into the hospital. In the time I was in the hospital, I had 15 bags of intravenous fluid, a total of 7 different IV's (I have bad veins, ended up having to have a central line, and was on IV zofran for the nausea and vomiting, and IV dilaudid for pain. I also underwent an abdomen/pelvis CT, IVP, brain MRI and MRA, Upper GI Endoscopy, Liver and Gallbladder Ultrasound, and a HIDA scan. All that came back from the tests was a small cyst in the pineal gland in my brain, a small kidney stone in my right kidney, multiple ovarian cysts, "sludge in my gallbladder", and decreased gallbladder function (from the HIDA scan). My hospitalist recommended since because the gallbladder tests came back abnormal, that I see a surgeon to discuss removing the gallbladder. So on Thursday, I met with the general surgeon who said "yes, go ahead and remove the gallbladder, it is inflammed and needs to be removed". Friday I had the gallbladder removed laprascopically, which somewhat helped. The nausea and vomiting decreased, and the RUQ pain decreased somewhat. The next morning I was discharged home.

But here's what brings me here. During the gallbladder surgery, the surgeon found a nodule/tumor on my liver. They also found severe endometriosis, which I will be having surgery for in the near future Right now, I am not sure of the exact size, but will find out next week at my follow-up He biopsied it, but I don't go back to him until Monday to find out what it is, I do know that the quick biopsy they did in surgery did rule out that it was malignant, so we are just looking at something benign here. I have done some research on the net, and have read through some of my nursing books (I am a nursing student) and believe that it may be FNH, or something quite similar. I also have pictures that were taken during surgery and it looks like FNH also. I was just wondering if anyone else has had any of the symptoms that I dealt with for so long before this was found. I am beginning to wonder if nothing really was wrong with my gallbladder, and it was the nodule causing all these symptoms, but I don't know. I do feel somewhat better after having it removed though. Still have the nausea, no appetite, dull RUQ pain, and lightheadedness. I guess I am just stumped...I am only 20 years old and having all these problems, so it is kind of strange.

Sorry for the extremely long post, but all of this is an extremely long story!!
Thanks everyone for reading! I will update next week when I get the biopsy back.

God Bless,
Megan

 
Old 04-20-2006, 10:12 AM   #11
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Re: Focul Nodular Hyperplasia

Hi everyone, I finally found my way back to this board. "NeedInfo123" I am also on fertility meds right now and have FNH. I am taking injections and will undergo invitro in a week or so. Last year I did 3 cycles of Clomid, and subsequent liver ultrasounds showed no change in the size of my nodule. My doctor finally gave me his blessing to do the invitro but I still worry because I do get pains in my right side. I guess he'll just keep an eye on it and see if it grows.

Also, in response to the last post by the nursing student, I have endometriosis, too, and my FNH was found on my liver during a laparoscopic surgery for endo. No endo was found on my liver, but I did have a coworker once who had endo removed from her liver. I really wish I could just get this nodule removed because I hate worrying about it, but it's not worth it right now at this small size. Good luck everyone and I'll check back on this board more frequently. -- Dana

 
Old 04-21-2006, 08:26 AM   #12
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Re: Focul Nodular Hyperplasia

I definetly think these things are hormone related. I have had two miscarriages and had to take progesterone during the first 16 weeks with my three babies and have something called adenomyosis in my uterus. I have had horrible cysts on my ovaries and had surgery to remove them. I need a hysterectomy, but I am holding off until I really am up to it. I just had my resection 9 months ago and I'm not quite ready. I just find it odd. I can't get a doctor to confirm it but I really think so. I am scheduling my MRI and followup for June. I really hope and pray the two tumors that are still there haven't grown.

God Bless you all!
Fannylou

 
Old 04-24-2006, 02:46 PM   #13
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Re: Focul Nodular Hyperplasia

Zydecomom--thank you for your response. And I wish you much success with invito. I just finished my 1st round of clomid with IUI. Unfortunately, we did not have success. My fertility dr. suggest due to the FNH to be more aggressive with fertility sooner than later. Next cycle, I will start fertility injections and possible invitro. I developed a cyst on my left ovary due to the clomid. So, I will have laparoscopic surgery in 2 weeks. I can't help but wonder if these fertility drugs will have some kind of effect on the tumors. My liver specialist tells me to "live my life" and not to worry. He says if they grow then he can get them out, easy for him to say..... His advice sounds so simple but as each of you who live with FNH know his advice is not so easy.

 
Old 04-25-2006, 07:02 PM   #14
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Re: Focul Nodular Hyperplasia

Let me know how your invitro goes. I go in tomorrow for my egg retrieval. It will be interesting to see whether these hormones will affect the FNH - hopefully not! -- Dana

 
Old 04-27-2006, 01:25 PM   #15
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gaille HB User
Re: Focul Nodular Hyperplasia

I'm new here and have had pain on and off under my right rib and side for a couple of years. In January when I went for my physcial my doctor finally send me for some tests - gall bladder ok - and no kdineys stones - they did find a lesion on my liver which he is calling fatty liver - I had a follow up ultra sound and have to go again in July.

I'm quite concerned about this as everyone in my family has died of cancer in one form or another. So far the doctor has not said the C word but they want to make sure the lesion is not growing or moving.

I've read quite a few threads on this site about URQ pain - and it seems to be quite a common complaint judging from the number of people posting.

I welcome any words of wisdom or other threads that might be helpful.

Hope you are all feeling well and enjoying springtime.

 
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