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Old 07-12-2010, 10:58 AM   #1
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Hepatic adenomatosis after liver resection of large adenoma

Hi there

I hope someone can help me, give me some advice or just some guidance to help me with my doctors!

2 years ago after several years of being generally unwell - nothing specific, but overwhelming tiredness, itchy skin, hot flashes, irritation and horrendous periods and pms I was diagnosed as Diabetic by my family doctor. She was unsure of the underlying reasons for this as I am young and not hugely overweight. I was sent for an ultrasound which found a huge mass on my liver.
Fast forward 3 months, and a 15cm adenoma was resected from my liver and I was put on insulin for Type 1 diabetes. All better.

Until my next follow up MRI, where is was discovered I have 'multiple' 2-4cm adenomas throughout my liver. I have been told these are inoperable due to the number and the locations and that they are slowly growing.

The consulant I have recently been seeing is clueless about hepatic adenomatosis and diabetes and any relationship between the two (there is one - I found some case studies on it!). He told me I was not to have children and that I will need a liver transplant.

I am generally well and have no real health issues (apart from the obvious) so this seems extreme to me..certainly at the moment anyway. Its now been 2 years since the first adenoma was removed and I am still ok.

Can anyone advise me on their management of adenomatosis so that I be armed with the relevant information at my next group of consultant appointments? I live in the UK and so far I am number 2 of the 2 adenomatosis diagnosis' made in the UK in the last 10 years and noone seems to have any idea how to treat it. Do you? Please pass on any advice you have so that I can discuss it with my doctors!!!

Thanks so much!!!

 
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Old 07-18-2010, 07:15 AM   #2
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Re: Hepatic adenomatosis after liver resection of large adenoma

Hi Kebo
You don't say what part of the UK you're in or whether the consultant you see is a liver specialist. I have an FNH (at least that's what they think it is!) and I remember the consultant at one point talking about radio frequency ablation- putting a small needle in and blasting the tumour with a form of heat to kill it off. Just wondering if this would be an option for you?
If you're not seeing a liver specialist I suggest you ask for a referral to one, there are only a few centres in the UK and if you're anywhere near London, Kings College is probably the best centre in Europe.
don't know much about adenomatosis but i'm sure if you trawl the boards here you will find one or two people with it- click on their name and send them a message direct.
sorry can't be more helpful than that
Mc

 
Old 07-18-2010, 09:02 AM   #3
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Re: Hepatic adenomatosis after liver resection of large adenoma

Thanks for the reply!

I am based in Glasgow and am seeing a liver specialist here..though he really only seems to deal with hepatitis etc so has referred me to the Royal in Edinburgh who have a liver team...am waiting for that appointment just now!
I had heard about the treatment with heat directly into the tumours from a friend as well, though it was for treating cancer so I wasn't sure if it would apply to me - but I will bring it up anyway with the specialists when I see them. Maybe it would be worth trying instead of jumping straight into worst case scenario and giving me a transplant!! Scares the life out of me!

 
Old 07-26-2010, 05:39 AM   #4
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Re: Hepatic adenomatosis after liver resection of large adenoma

Hi Kebo,

I'm based in Dublin and am also being investigated for Adenomatosis. I "only" have 4 adneomas, although one is pretty big (at 13.5cm).

They are currently debating whether to resect my liver or not, although I think they are leaning more towards surgery than not. I am the only one of my kind in Ireland so they've had to go externally for multiple second opinions.

As far as having children is concerned my consultant has told me it's possible under strictly monitored conditions. Any pregnancy I have will have to be planned well in advance and scans would have to be taken before, during (at almost monthly intervals) and for a period of time afterwards.

There is really (as far as I know) no treatment for the condition, except removing them/killing them off with ablation.. and also avoiding hormones like the pill.

I am only at the beginning stage of diagnosis tho.. They found mine last year on an MRI..

hope that's enough info.

Finn

 
Old 08-29-2010, 08:56 AM   #5
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Re: Hepatic adenomatosis after liver resection of large adenoma

Hi Finn,

Thanks for your reply - I only just noticed it today! I am off to see the liver specialists in Edinburgh this week, to get the results of my last MRI..hopefully they will be able to talk through management of the condition with me..or at least set out a plan.

Hope that you are doing ok - I had my liver resected 2 years ago to remove the large singular adenoma and I know how scary it can be. Good luck with everything and keep in touch - since we seem to be 2 of a kind!

Kerry

 
Old 03-04-2011, 04:34 PM   #6
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Re: Hepatic adenomatosis after liver resection of large adenoma

I was originally diagnosed when I was 12 with 2 pea size spots. Dotors never thought much about it. When I was 17 one ruptured but quit leaking so because I had no insurance nothing was done. At 22, I was tested for hemocromatosis, neg. Mine were about 4-6 cm. Lost insurance no more done. 3 years ago after having 2 children my liver is covered, way too many to count. Been having MRI's yearly since. Mine are now 8.3x5.3 cm, 3.3x2.8cm, 6.0x4.4cm & 4.7x4.2cm of the ones that can be measured. I was also diagnosed as type 1 diabetes at 13 but always on very low dose, norm c-peptide & no antibodies which led me to believe I was misdiagnosed. I was tested for Wilson's disease, neuroendocrine tumors all negative. I have clinical signs for Mody 3. Low closterol, high triglycerides and central obesity(looks like a pooch on my belly) this is called metabolic syndrome. Still need low insulin does and liver adenmontosis. My doctor is currently looking into the genetic test for Mody. I may be looking at a transplant because nothing was done & now I'm covered in them with no other way to get rid of them all. I have blood tests that should help them determine if they are turning cancerous such as AFP(alpha-feto protein) done at the same lab every six months. With Mody biggest risk is rupture not cancer(although can turn into). Birth control pills have not affected mine they way they expected. I was told to stop but refused. Mine actually shrunk slightly in that year but have now started to grow. The problem with MODY patients is they don't know why they grow. You can google MODY & find lots of great info. By the way both of my children are healthy. My daughter is the only one to believe to be affected. Testing soon hopefully. You being in the UK, should be a good thing if you have MODY. Lots of the case studies I read about through google searches were journal articles done in the UK.

Good Luck & if I can help anymore don't hestiate to pm me. I'd love to talk to you but phone calls would be expensive, .

 
Old 03-05-2011, 08:44 AM   #7
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Re: Hepatic adenomatosis after liver resection of large adenoma

HI there - it's good to hear from you! I feel less like the only person in the world with these problems! I have recently been told I will probably be rediagnosed with Mody3 - they are sending me for tests to find out if I do...and am going back to see my consultant next week to find out what to do about the new adenomas that have grown (and keep growing)..looks like I have another 2 larger ones that need to come out. Noone can tell me how many more I have or what size they are (there's too many to count). That doctor is doing more tests too to find out if there is anything else they can look at.

It is good to hear you have children - I was told by my first doctor not to have children...but I don't believe that is true (or up to him to decide!). My other doctor thinks I can, but isn't sure what effect it might have - at first they thought this was caused by eostregen..and that wouldn't be good for pregnancy.

I get 6 monthly MRIs and regular blood tests..they've told me the chances of cancer are small but rupture is much more.

Hopefully they'll tell me more next week - the new doctor I have is very interested and doing lots of tests - even on the last adenoma they removed.

It is good to hear from you - keep in touch and if I learn any more next week, I will let you know. I take it you are in the US?

 
Old 03-15-2011, 09:06 PM   #8
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Re: Hepatic adenomatosis after liver resection of large adenoma

Doctors get these types of adenomas confused with the ones caused by birth control pills. MODY 3 patients adenomas aren't effected by them thus becoming pregnant isn't as risking. The only worry with pregnancy is large ones rupturing. If you have no large ones you should be fine. My son was 9 lbs 3 oz 19 1/2" long, my daughter was 7lb 14 oz, 20 1/2" long. Breastfeeding made mine shrink and my diabetes go away. We have been doing research by the tons. I'm fixing to start taking an herb called black cumin which has been known in asian cultures to reduce tumors. It can't hurt & I'm going to try. Also one of the main problems is fatty liver with these as well as these being fat filled. This can be caused by not enough prolactin. I'm going to start taking herbs to raise it, fenugreek(increases breast milk too), milk thistle and caraway seed(cooking with). If this helps it should help clear up my fatty liver and reduce some of my nerves, high sex drive etc. I'm excited because there is no downside. Doctors don't agree but I've not always been treated for these for almost 22 yrs. I'm hoping to see a difference by July MRI. Good Luck & if you have any personal questions feel free to contact me via personal message. I'm been through a lot in these years.

 
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