Verrrry large FNH tumor

I am 32 yrs old. I have a FNH tumor that is 20cm.  It causes me pain but the liver doc says I don't need surgery. The amount of my liver he would have to remove is almost half, which makes him the most reluctant to remove the tumor. I'm so tired of living in pain. I have fibromayalgia and diverticulosis, which has put me in the hosp. 4 times in the last 4 years. So I would really like the tumor removed so I have one less cause for pain. Does anyone have any suggestions?
Thank you.
Lisa

[Sir_Osis]

Sorry to hear of your maladies....

Can they try to shrink the tumor with Steroids? Chemo? Radiation? Just wondering aloud mostly....  

Id at least ask the doc questions and see what She He comes up with...

J

[mrsmiceli]

You need to seek out another doctor! Please take it from me. I am now 28, i got sick when i was 26 experiancing pain and weight loss because I kept throwing up everything I ate, feeling tired and weak. I went to a doc who told me it was the stomach bug, knew something was wrong, went to the gastro, they found 6 "lesions" through MRI. They sent me for a biopsy of the tumors, missed my tumors took my liver instead causing it to be inconclusive. Went to another doctor, they said my biggest lesion was 5 cm on the left lobe right by my stomach. I kept saying and there is no way its pressing on my stomach making me sick? nope it shouldnt be causing you pain, so i contacted some liver doctors down in NYC (where im originally from) and they took me right away looked at all my tests and still had no idea what type of tumors i had. My liver surgeon took 1 look and said that left lobe where the 5 cm tumor is has to be removed. I had surgery at New York Presbyterian the next week and come to find out the tumor was 8.5 cm and was squeezing my stomach and had to have it laprizcopically done with a c-section type of surgery to pull the tumor out. And now 2 years later im healthy and all good with 5 more tumors left in there that I get monitored once a year by MRI. PLEASE GET ANOTHER OPINION!!!

[TabStar77]

I was reading what happened to you - Mine is very similar, I'm tired, weak, fed up and they have now done a CT after the ultrasound which confirmed a 10cm lesion on the left lobe and a 3.5cm one on the right. I have to take laxettes in order to go to the toilet properly and sometimes, I even throw up becuase as soon as I eat, the pressure is just unbearable and its a horrible feeling as I know its pressing on my stomach. Ive lost 6kgs from just keeping digestion flowing. In the last week, Ive gotten terrible indigestion and the doctor said they were going to do nothing, and he wrote me a script for some antacid ******** for the reflux.

Just the last few days Ive had stabbing pains under my ribs on the right which wasnt there before. It all started 6 months ago, and I am so tired and sick of being sick..

I told him I'd stopped my contraceptives in January last year, and he assumed it was Jan 2009 - and said the adenoma would shrink...

I havent taken any for 15 months... but he wouldnt listen to anything else I tried to say.

If I get a second opinion do I tell them about the previous one?

[painpainpain125]

i feel your pain, i to have diverticulosis and a cyst like structure on my left lobe, along with bilaterial ovarian cysts. just had a colonoscopy done where they removed two polyps....i worry because no one seems to be adressing the cyst on the liver, which kills me daily with pain....I am 35 and all of this is just coming about within the last 2 months. i too am sick of being in pain all the time... think the family is done hearing about it too!!! keep me posted with what you find out.
and good luck to you.

[mrsmiceli]

TabStar77,

Yes keep all record of any tests you have had. I had a HUGE folder that had every test with the results of what they found along with my scans on a CD. I totally FEEL YOU!!!!
I know what your going through, the 3 hospitals here in Rochester, NY kept telling me I was crazy the way I was feeling and I felt like you! I would drink fruit punch because I didnt want solid food and I would throw it right back up. The doctors here kept telling me I had GERD and to take prilosec and all these other things, but i knew in my heart it was the tumor pushing on my stomach causing me not to be able to digest. The tumors will not shrink by going off of your b.c. They pulled that **** with me and my tumors did not change for a year! and I suffered and suffered, i left work early, i felt horrible every day. If your lesion on the left lobe is 10 cm...PLEASE SEE SOMEONE ELSE!

[TabStar77]

Mrsmiceli,

I don't want to be all doom and gloom about this, but I know that generally when I'm feeling sick with something - something isn't right and because of my high tolerance to things, when I get ill, its usually something serious!

Its been 15 months off the pill, and its 10cm now... imagine how big it must have been back then, if it shrinks once you stop those (according to him)? That's why I think its a heap of ****.

Ive made another appointment with my doctor and hopefully we'll get to the bottom of this. Ive been feeling alright lately, but I know thats because I sleep in til lunchtime, and am not working, so I rest all day.

Thanks for your advice! what was the surgery like? did it leave much of a scar?

I want to go have fun with my friends, and I cant go dancing or do anything with this big thing in me because I heard it can rupture if you're not careful.. is that true too?

Did you feel heaps better afterwards?

[BHolder]

TabStar77,

How are you doing now?  I hope you are dancing again with your friends.

In June of this year I went to the Emergency Room with what I thought were heart attack symptoms.  I had a sharp pain in my right shoulder blade going down through my arm.  And, I started vomitting, my heart hurt and I was sweating.  In the ER room, they confirmed that I had a large tumor (9 cm) that ruptured and I was bleeding into my liver.  The pain was intense because the blood did not have anywhere to go.  They said it was a good thing it bleed inside the liver so that it was "compressed"; otherwise, I would have bled out.  After several other tests and liver biopsies, they confirmed I had 20 tumors, FNH mostly, all benign.  They said that there are so many on my liver and due to the locations of them and the large number of them, surgery is not an option for me.  They have put me on a "liver transplant waiting list".  They insist that I need a new liver!  I suggest you get plenty of second opions.  I see the St. Luke's Liver Transplant Team in Houston Medical Center.  I believe they are one of the best.  I hope you are finding good doctors to take care of you.

[ssdown]

I have not followed your full story, but alos have some similar problems. I have three tumors. Found them 7 years ago, They were no problem . Suddenly pain so bad thought I had kindeystones. My largest is 6.1. Is there eveytime they do something before something really bad happens? Started the test again, almost wish I could just walk away from it,Don't know who to belive anymore.

[screechymonkey]

I have FNH and Fibro myself...and I was dx'ed 11 years ago...I have seen many doctors and done lots of research..please if your on the pill..STOP..these tumors grow because of the hormones. The pain can be intense...if you can try to find a good pain specialist for medication and do meditation...sounds hokey I  know..but it does work with helping with the pain...also..take all fats out of your diets..the liver has to work hard to digest them...the pain will easy some if you do this. I live just in the burbs of Toronto, Ca. And I'm looking for another doctor..someone one actually gets this disease..I've been to several, but with no luck. So if anyone has any suggestions I would greatly appreciate it. Also...don't take Tylenol...this is bad for the liver and will increase your pain.
If anyone has any information or would just like to chat with someone who knows..contact me..my email is ***@****
I wish all of you the best. Keep your head up and keep laughing.