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Old 07-02-2008, 04:44 AM   #1
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nhbiker HB User
Giant Liver Hemangioma

Hello all,
Iíve read some of the other threads and thought I would post so I can get some information from other posters. In April 07, while doing a CT scan for appendicitis they discovered a 17cm mass on the right lobe of my liver. Later, on a follow up CT specifically to look into the mass they determined it to be consistent with a hemangioma and after my surgeon discussed this with a liver specialist it was determined that I would go in for a yearly US to monitor size etc especially since it was not bothering me.
1 week prior to my first annual appointment for the US I had severe LEFT chest pains along rib cage and just below the point where the ribs meet. It was bad enough where I went to the ER thinking I was having a heart attack or something and never really even thought about the hemangioma. It was determined that I was just having chest wall pain. Well, last month I went for my US and they now say it is 19-20cm so, obviously it is growing. They had me go for another CT and a red blood cell scan which all confirmed the size and that there now looks like a smaller hamangioma on the left lobe of my liver.
My primary care referred me to a liver specialist at the Lahey Clinic in Burlington who I see tomorrow.
Funny thing is, left chest pain is now just about gone but I now have pain/pressure in the upper right abdomen and under the right rib cage and last week I had a severe right shoulder pain which they said was just a muscle pulled from sleeping on it wrong (I had been camping in a pop up all week). I just donít know if this is all in my head or I just never really paid attention before. Does the pain come and go? Has anybody else had shoulder pain etc?

Any of you who have gone through this have any thoughts, or maybe questions that should be asked (just in case I miss something)? Any help, comments etc will be appreciated. Nervous about tomorrows appointment.
Thank you

Last edited by nhbiker; 07-02-2008 at 04:49 AM.

 
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Old 07-02-2008, 09:42 AM   #2
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kt8889 HB User
Re: Giant Liver Hemangioma

Hello NH,
You are the first guy that has asked about this, but you seem to need a little help. I am one of many woman in the FNH/Adenoma/Hemangioma group. Many of us have been talking for about 6 months about our surgeries and recovery. Our tumors are/were caused my long term birth control, so that is why I say you are the first man.
You can read through our threads, even thought it is not the same thing, if you need to prepare of some tests, biopsy or surgery we can help. 20cm. is very large and of course it is going to cause you pain. It is like you have a football growing in you, even though it is benign. Is you liver specialist a transplant surgeon? Sometimes it is good to go to the biggest teaching hospital in your area, these docs see these all the time. If you like your doctor and he has seen many of these tumors, you are on the right road.
Sorry I don't have more answers, but we would welcome you to our group if you have any questions.
Katie

Last edited by kt8889; 07-02-2008 at 09:43 AM.

 
Old 07-02-2008, 09:48 AM   #3
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Re: Giant Liver Hemangioma

I looked up your hospital, you are in the right place. They do transplants there and that is the best. Your doctors will love you because you have a healthly liver, just a tumor. Honestly, my doctor said that to me.
Good luck tomorrow and let us know if you have any questions.
Katie

 
Old 07-02-2008, 10:13 AM   #4
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patriciamia HB User
Re: Giant Liver Hemangioma

Hi,
This is exactly what I have on my liver. A giant hemangioma. Just one 11.8 cm. It grew a cm in 3 months. I'm having it removed tomorrow. Yikes. Scared, but I definitely want it out. All the pain you've had, I've had. I thought it was sleeping weird, or having a bad mattress or bad posture or sitting too long, or pulling a muscle, but it would come and go. And the GI docs, said wait and see. So I did and it grew. Mine is complicated by the fact that I eventually want to have kids and they do grow with pregnancy and can rupture during delivery. While they may be caused by hormones, they can also be congenital, just something you're born with. I decided to get rid of mine as soon as possible. I pray it goes well tomorrow. I know it's major surgery, I just do not like the idea of something this big continuing to grow. Let us know what your doc says. Good thoughts and prayers with you.
Patricia

 
Old 07-02-2008, 10:18 AM   #5
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LindaG40 HB User
Re: Giant Liver Hemangioma

nhbiker: the shoulder pain can also be referred pain from your liver. I am on the FNH/Adenoma thread as well, so my story is that I have three small hepatic adenomas that were discovered a little over a year ago when one ruptured. I had the pain in my chest that felt more like gastric pain, as if my clothes were too tight. I took several Tums and a Nexium, but no relief. I also had severe pain in my right shoulder, and then it progressed to my right abdominal area. The ER doctor said that since there are no nerve endings in the liver, the pain will get referred to another part of the body, usually the right shoulder.

I'm surprised that with such a large size growth on your liver that your physicians decided to monitor you rather than remove it. I was told that any growth 5cm or larger should be removed due to the risk of rupture. Maybe it's different with a hemangioma rather than an adenoma. Do you feel it or see it?

Good luck to you with your appointments tomorrow. Be sure to ask a lot of questions, write everything down, and try to bring someone with you so that you have an extra set of ears.

Linda

 
Old 07-02-2008, 10:22 AM   #6
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nhbiker HB User
Smile Re: Giant Liver Hemangioma

Katie and Patricia,

Thanks for writing back. I was going to post in your thread but kind of noticed it was all females and figured it was better to start a new thread LOL. I am divorced and not seeing anybody, work with a bunch of guys, have 2 girls, brother and my mom lives in AZ and she worries a lot so I try not to get her too worried. They all do support me but I also donít want them to worry too much especially my girls and mother. So, I went looking for support on the internet and I found the thread that you two are in and I do desperately need help Being a guy as Katie pointed out , I was really impressed on how you ladies pull together and support each other and I have actually gone back and read a lot of the posts on the thread. I am thinking of all who are recovering and getting ready to go into surgery. It defiantly helps to talk to and read other peoples post that have gone through or are going through the same stuff as you are.

All my labs are ok but I am real nervous about my first meeting with the specialist. What should I expect on the first day with the specialists? Like I said, I have had US, CT and Red Blood Cell tags. I just really want (as you put it) this football out of me.

From your experience, anything special I should ask the specialist?

Patricia, from what I have read so far you will do great tomorrow. My thoughts will be with you. Hang tough and do as the doctors and nurses say. GOOD LUCK!

Thanks again for writing back, it really does help.
Randy

Last edited by nhbiker; 07-02-2008 at 10:26 AM.

 
Old 07-02-2008, 10:54 AM   #7
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patriciamia HB User
Re: Giant Liver Hemangioma

Hi again,
With hemangiomas it's always a wait and see approach unless there is pain or rapid growth because they do not have the potential to turn malignant and are unlikely to rupture unless there is blunt trauma to your liver they leave them alone, i think because they are masses of dilated blood vessels that could potentially bleed out. The kind of questions I asked were is it cavernous, exactly where was it, if it kept growing would it be a more complicated surgery later? What about laporascopic potential? Would other hemangiomas show up? I actually had to push a little bit to get referred to a liver surgeon. GI docs thought it best to wait and see for a year -- it's been almost 9 months since i found out about this, the surgeon let me make the final decision but added i am young and as i got older it would grow and the surgery could get more complicated and more of my liver would have to go as it is it's on a small portion of my left lobe, not cavernous yet. You could also ask about where it is in relation to your major arteries. And if they were to remove it how much liver would they have to take. Is it close to your gall bladder? Have you already had that removed? Drs. do sometimes let hemangiomas get pretty big, i think the decison might be partly yours.
Thinking of you
Patricia

 
Old 07-02-2008, 11:23 AM   #8
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nhbiker HB User
Re: Giant Liver Hemangioma

Hi Linda,
I really canít notice it as I have a few extra pounds on me Until I had the left chest pain, right shoulder and abdomen pain recently I did not have pain. Iím not sure if the tightness I feel all the time is in my head now or if itís actually just got to the point where it is causing pain. The pressure kind of stays there all of the time but the pain and fullness comes and goes depending on position I am in, if I just had something to eat etc.

Patricia,

I really did not have to push to see a liver specialist. My primary care ran all the tests and basically said time for me to go see the specialist itís above his pay grade. I real feel my primary care has done a great job with this and hopefully the specialist will be great as well. I hate when the patient has to push, the doctors should give us every option and discuss them all completely.

Those are great questions and I have not had anything other than my appendix removed.

Notice you live in Albuquerque! I drove thru there last OCT on the way to AZ to bring a car out for my Mom and Step-dad. Beautiful city and we lucked out as it was the balloon festival. If it was not for my two girls I would move out to AZ or NM in a heartbeat especially after last winter LOL.

Good luck tomorrow, you will do great!

You ladies are awesome!

 
Old 07-02-2008, 12:27 PM   #9
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Re: Giant Liver Hemangioma

Just out of curiosity what is the biggest liver hemangioma anybody has heard of? How big do the commonly get etc?

Thanks
Randy

Last edited by nhbiker; 07-02-2008 at 12:28 PM.

 
Old 07-02-2008, 01:22 PM   #10
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kt8889 HB User
Re: Giant Liver Hemangioma

Hey Randy, so glad some of the ladies are able to answer some of the questions for you, and remember, no question is stupid or to gross! Dealing with a liver tumor is not fun, but we are all in it together.
Linda had great advice, write down your questions for the doctor tomorrow. Are you bringing your scans with you? Your surgeon might want a different scan done,MRI ect.,, but he might not. He will get some blood just to check for tumor markers and check your liver enzyme levels. As Patricia said, the option for surgery might be up to you, but you need to talk about all the pros, cons and options. Patricia has great questions. She is ready for surgery, can you tell? If your surgeon is talking surgery, ask about options of how, open, hand assisted laposcopic, laposcopic or RFA. (RadioFrequent Ablation) It is a type of laser I believe.
Fannylou was in the original group of wonderful women on here and she had a very large FNH tumor. She called hers the size of a football, but I don't remember how big it was. She checks on here still, so hopefully she will help us out. I thought my softball size adenoma was big.
Randy, you can join us in our thread if you wish. You will be our token guy and we really are here just to help and support each other through all of this stuff.
Good luck tomorrow,
Katie

 
Old 07-02-2008, 05:31 PM   #11
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nhbiker HB User
Re: Giant Liver Hemangioma

You ladies are awesome!! The support you show each other and even me is unbelievable. When you work with all guys and none of them have ever had anything like this itís tough LOL

Katie,
My primary care told me he did all the blood work for tumor markers and everything and has already sent the specialist a CD of my cat scans and all the reports etc. They even burned a copy for me so and had me pick that up along with the films from my US to bring down just in case the ones they sent got misplaced I tried an MRI last year and could not do it, to small of a hole for a guy that is 6í2 and on the larger size LOL I made the mistake of opening my eyes. Anyway, they said the CT scan and red blood cell scan was just as good.

Patricia, again good luck tomorrow I will be thinking of you.

Thank you all for your suggestion and input. I truly appreciate it.

Randy

 
Old 07-03-2008, 07:22 AM   #12
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kt8889 HB User
Re: Giant Liver Hemangioma

Randy, I let the ladies on our thread know you might be joining us. I will be out of town this weekend, and not sure about computer access. ( I will be on a houseboat) We are a great group of woman that I am proud to call many of them dear friends. Please join us and ask any questions you might have. Good luck with your appointment!
Katie

 
Old 07-03-2008, 08:55 AM   #13
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bethegk7 HB User
Re: Giant Liver Hemangioma

Hi Randy, I am one of the adenoma/fnh gals. Sorry to hear about your tumor. I know one of the ladies that was on our posting very early on had a tumor the size of a football. I do not remember off hand what it was but I think an FNH. My pain with my adenoma came and went....the shoulder pain would drive me nuts!

Hey I used to live up in Plymouth....I have not been back to NH in 5 yrs!

Hang in there.

Best,
beth

 
Old 07-03-2008, 06:34 PM   #14
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nhbiker HB User
Re: Giant Liver Hemangioma

Hi Beth,

I just spent 9 days up in Meredith for MC week and rode through Plymouth numerous times.


Feel a little better after seeing the specialist. He has been doing liver transplants for over 25 years and told me lets continue to monitor unless the pain gets real bad (it only hurts now and then although on two recent times it was enough for me to go to the doctors). He said I will definitely feel fullness and tightness with the size that it is but, if I can handle that and the little bit of pain for now it would be better than the risks of surgery. As far as it still growing he said that depending on what slice of the scan they looked at and the exact angle of measurements from one year to the next could be the 2cm difference between each yearís scan.

So, it looks like unless the pain gets worse we will just monitor it yearly. Still thinking on if I want to get a 2nd opinion but I felt very confident with his explanations and answers.

What are your thoughts?

I really want to thank you ladies, your thoughts, whishes etc kept me from losing it and I will still be showing up on this board
Thinking of Patricia and the rest of you who are in recovery and going into surgery soon. You ladies have a great support system here.
Randy

 
Old 07-07-2008, 02:12 PM   #15
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neens7982 HB User
Re: Giant Liver Hemangioma

Hey,

I've also posted a lot on the other thread about my hemangioma. I had half of my liver removed due to one that was 7 cm. I went to Baylor University Medical Center in Dallas. I live in NM also. My doc said that he has seen people with ones that were 15cm-20cm in size. He told me that the case just depends on every person and whether they become symptomatic or not. He has had people with 2cm hemangiomas that have caused horrible pain and people with 12+ cm that have no issues at all. I had intense left shoulder pain in mine. We watched it grow from 2cm to 7cm in 4 years. As it grew, it began to press on my diaphragm and it hurt to breathe at times. So, that was what aided in the decision for mine to come out. If you click on my name, you can read through my surgical experience. I had the right lobe of my liver taken out. I am 30 years old and am now 6 months post surgery. I have no pain whatsoever in my shoulder or when I breathe. Anyhow, I still have two hemangiomas...maybe a tiny third one left on my left lobe. They have never changed for the past four years. I have no clue what makes some grow and not others. Don't be nervous about seeing a specialist. They are amazing at what they do. I had many blood tests(tumor markers) initially...a CT scan/MRI with gadolinium contrast. The MRI with gadolinium is pretty specific in the diagnosis. Your doc may want it to come out due to the large size and the risk of rupture...or if it starts to compress other organs/structures like mine did. If you have any questions feel free to ask! Best of luck to you!!

 
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