Large Hepatic Adenoma

Hi my daughter has recently gone through exactly the same as you. We are also at home waiting for it to reduce. I notice your post was a year ago. Can I ask how u are now? Did u have surgery? Thank you for your time

I'm a 26 year old female just diagnosed with multiple adenomas, the largest being 9x6x6 cm. At first they thought they were hemangiomas but I heard back from my MRI yesterday that they are adenomas. I was told to stop taking birth control (which I've been on for 9 years) and have another MRI in 3 months to see if they shrink. Has anyone gone off contraceptive and experienced shrinking tumors? Nothing at all was mentioned about surgery or dietary restrictions that could help. I don't like playing the waiting game but this is all the information I was given. I also asked about getting an IUD or other non hormonal birth control and was told we could talk about it after the next MRI, which was disappointing considering it sounds like pregnancies can be dangerous with these tumors. I guess I'm just looking for women who have gone through similar situations, so please comment if you have any input/advice!

Hello Christie. I have recently been diagnosed with a 11cm adenoma and advised to have a resection, which really scares me. I’ve stopped taking the pill but the surgeon doubts it will shrink the tumor. Do you have an update on your situation?

I asked the doctor to send me a copy of the MRI report which did recommend a surgical consult, but the nurse left that out entirely when she called with the results. I'm getting frustrated but I called today with a list of questions and have not heard anything back yet. I'm actually hoping I can have the surgery and move past this, but having multiple adenomas I'm not sure they would chose to remove them all.

Hi, im wanting to follow up and see how things are. I have been diagnosed with 2 large adenomas and they are centrally located too big to resect. I was advised i need a liver transplant. Worried.

I'm still not hearing much from anyone. A nurse called back and said my doctor isn't too worried about it and wasn't recommending I see a specialist, but I asked if they could refer me anyway. I asked if I was able to ski this winter and they said as long as I stick to the easy runs and don't fall, which is a bummer. I feel like this is more serious than they're treating it and I don't want to walk around my whole life being careful so I don't pop my huge tumor. I spend half of my year working for the national park service and I'm often in very remote areas where I can't get to a hospital quickly if something were to happen. I'm frustrated. Still haven't had the conversation about if this means I won't be able to have kids either. I'm thinking it's time to get a more helpful family doctor after all this.

Yes, I think you are right to ask to be referred! It’s all such a worry... especially if you want children.
Have you had anymore updates?
I had PVE two days ago in the hope that the left side of my liver grows enough to have a resection. Do you live in the UK or USA?

Hi I have the same thing and it took me a very long time to get an answer as to what it was. I had a terrible time with 2 different gp practices but eventually got a diagnoses around 18 months ago. Mine is symptomatic, I have a lot of discomfort, vomit frequently, elevated lft, blood pressure, and have bloating among other things so that is why I initially kept going back to doctors....thought I was pregnant!!
From what I understand this isn’t something that your doctor should really be taking charge of. Many of them don’t know anywhere near enough about it and I would suggest you insist on seeing a specialist. Mine sometimes asks me for updates/ new information when I pop in to pick up prescriptions and has actually told me thereslef they had to do a bit of reading about it.
All in all I would say I have seen around 4/5 different gps over the last 4 years when this all first started and none of them were aware of this even being a thing. I kept being fobbed off and was accused of alcoholism being the reason my lft results were elevated, then that it was clearly a normal result for me etc.in the end I accepted it was normal for me to feel lousy and just settled for taking omoprasol to help settle the nausea and vomiting.
None thought to look for anything beyond the initial blood tests until I switched doctors and saw a lady who started a full investigation after me mentioning what had been going on for a couple of years in a routine check up.
Mine has bled twice and both times I was doing normal day to day activities like Work and gardening. It does seem to be that repeatedly bending up and down was what triggered it as I was doing this shortly before on both occasions. Not claiming to be an expert but from my experience this is what I have found. How comfortable are you going to be skiing with this at the back of your mind. You sound like an active person and you need to weigh up if you are going to be able to continue your activities to the same level and not be worrying about something happening. For me I have found it’s the mental stress and anxiety more than anything that has caused the most upset. I understand what others say be they feel like they have a ticking time bomb.
And in terms of children I was advised that it wasn’t recommended, although if I didn’t have it removed and insisted on children the hepatologist would work closely with the antenatal team to monitor me.
It’s not fair that no more information is being given to you. I was also told initially that they would monitor every couple of months to check if they had shrunk. I was then told upping seeing someone else that they very rarely shrink until after the menopause.
In terms of diet I already ate healthy, but switched to vegetarian, did regular liver cleanses, stopped having dairy cut out alcohol and it literally made no difference to size! I vomit much less but between my scan in October and another the very end of December it had grown again. So in my experience diet had little impact. Iv also been off the pill for nearly 2 years now. Came off it after researching online and starting to suspect hormonal links. So although they say that was the initial cause. Stopping the pill hasn’t stopped it growing.
I am due to get mine resected next week and although I am very nervous, it’s also worth it to reduce the risks associated and also just to be able to live a normal life where I’m not worrying about doing anything that could cause a bleed again.
Seriously insist on a referel. I have been told so many things by different doctors and much of it conflicting information, you need to see someone who works specifically in hepatology for solid information and just for your own piece of mind. Sorry for the essay I just wanted to give you as much info on what I have experienced in the hope it helps you.

Christie here again. I did end up having them refer me to a specialist, although they made me feel like what I was asking for was unnecessary. I saw a gastroenterologist last week and did not really gain much more information. He changed my next MRI from three months after the initial one to five months to give it a little more time to see if there will be any shrinkage. He told me I should be ok continuing to work my regular park service job, even if it's in wilderness/remote settings and I only need to worry about hard impacts. When you say you've had bleeding twice, is that something where you had pain and went in for tests and was told it was bleeding? Did they do anything or did it stop on its own?
I asked about having kids and was basically told it depends if we see any shrinking or not, but definitely not to get pregnant in the next year at least. I asked about the chances of the tumors shrinking and he made it sound like it is expected to get smaller, although it may happen very slowly. Everything I've seen online has been people saying they are not very likely to shrink, so I'm not sure if post are mainly being made by people who have not experienced shrinking, or if it is truly unlikely and doctors are just trying to keep me optimistic until I have a follow up MRI. I also asked why surgery wasn't an option and was told they would have to take half of my liver and they don't want to consider that big of an operation if I'm not experiencing symptoms. I also have many smaller adenomas in addition to the big one and I think they're in both sides of my liver so it wouldn't even remove all of them. He tried to show me my MRI but the computer wasn't working so I still haven't gotten an answer about how many I have and how much smaller the others are from the big one.
All in all I'm still worried about everything but thinking about it all the time doesn't do me any good. I'm still going to do all of the activities I enjoy, including skiing, and at least I know to see a doctor if I do have a bad fall and have pain in the area. I'll try to update again in April when I get results from my follow up MRI and I certainly appreciate all the advice and responses from others who have gone through this.

I live in the USA. I gave an update in a separate post below.

How did the resection go?

I finally found someone who can relate to me! I had multiple hepatic adenomas from taking oral birth control. Same exact thing happened to me! I was rushed to the ER after one of them ruptured and I had internal bleeding and was in excruciating pain! They continued to watch it for about a year and last April we found out 2 of the adenomas has turned into cancer. I had a huge liver resection last June in which they removed about 80% of my liver but got all the cancer out. A couple weeks ago in one of my routine scans, a couple new liver lesions popped up that they are saying do not look like cancer, but of course I am freaking out! It’s too small to biopsy so we are just watching it. Good luck to you! Make sure they stay on top of things and don’t let it get any worse.

I finally found someone who can relate to me! I’m a 21 year old female and I had multiple hepatic adenomas from taking oral birth control. Same exact thing happened to me! I was rushed to the ER after one of them ruptured and I had internal bleeding and was in excruciating pain! They continued to watch it for about a year and last April we found out 2 of the adenomas has turned into cancer. I had a huge liver resection last June in which they removed about 80% of my liver but got all the cancer out. A couple weeks ago in one of my routine scans, a couple new liver lesions popped up that they are saying do not look like cancer, but of course I am freaking out! It’s too small to biopsy so we are just watching it. Good luck to you! Make sure they stay on top of things and don’t let it get any worse.

I also have 2 large adenoma and have had a hysterectomy 2 weeks ago any updates with anyone re: shrinking adenoma after stopping hormones/birth control?

Anyone still active on here? I have posted before (above, Christie) but I have had some developments. I was diagnosed in November 2017 with "multiple" HA's, the largest of which was 6x6x9cm and was told to stop birth control and just follow up with a GI and have yearly MRIs. I was supposed to have a follow up MRI march on 2019, but I had a spontaneous bleed from my largest HA and ended up hospitalized and getting that MRI a bit early. The largest HA had grown and started bleeding, but luckily it stayed contained within the liver capsule. They kept me three days and the bleeding resolved on its own, and I was referred to a cancer surgeon at my local hospital, who wanted to remove 70% of my liver this spring. I was also informed that I have 25-30 HA's, when I had been thinking "multiple" meant ~3-5. I felt really uncomfortable jumping into such a large surgery so soon, and not ever even consulting with a liver specialist, so I reached out to a larger hospital (University of Michigan) and was able to get in with a liver surgeon. He highly recommended not jumping straight into the surgery, but having an embolization performed to try and shrink it to make the surgery easier (as well as allow me to work my job with the National Park Service for the summer season). I was very relieved to hear his opinion and I had the embolization performed this week (May 2019). I feel a little under the weather, but they said it should resolve within a week or so and I have a follow up MRI at the end of the month. I plan to have another MRI in the fall and probably schedule the surgery for late fall. One thing I'm concerned about is the fact that the liver that will remain after surgery will still have HA's in it (but small ones) - has anyone else had this done? From what I've seen it sounds like people with as many as me have typically ended up on the transplant list. It's going to be a big surgery and I am not looking forward to it, but it would be nice to have peace of mind that I don't have any huge HA's remaining to worry about spontaneous bleeds. I'd be happy to hear from anyone with similar experiences or advice