Hepatic adenoma "...most commonly occurs in people with elevated systemic levels of estrogen, classically in women taking estrogen-containing oral contraceptive medication." ... "The majority of hepatic adenomas arise in women aged 20–40, most of whom use oral contraceptives. Other medications which also alter circulating hormone levels, such as anabolic or androgenic steroids, barbiturates, clomifene, have also been implicated as risk factors." Source: Wikipedia

Hepatic adenomatosis "...is the presence of numerous, more than 10 and up to 50, hepatic adenomas. It is a rare disorder, best characterized with MRI." ..."Patients with hepatic adenomatosis do not necessarily have the classic risk factors associated with the development of hepatic adenomas, such as steroid or oral contraceptive use, or the presence of a glycogen storage disease." Source: Radiopaedia website

Hepatic Adenoma / Adenomatosis Survey

If you have been diagnosed with either an hepatic adenoma or hepatic adenomatosis, please consider completing my survey which I have developed in order to gather data regarding these conditions. You are welcome to stay anonymous by providing an alias on the form instead of using your real name, if you choose. Email me at ninette at mwebbiz dot co dot za to request a survey form. Read my post "Living with an Hepatic Adenoma" for the reasons why I am doing this survey and for what I intend to do with the information.

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Living with an Hepatic Adenoma

Out of the blue, a sharp pain radiates through my chest from the core of my upper abdomen in the region of my liver, with it, more inte...

Disclaimer

Important Notice/Disclaimer: I am not a doctor, I am a patient and this is merrily a blog offering my opinion and some useful information and links I have compiled from other unverified sources. Only consult your doctor for medical advice. Although I have done my best to accurately portray facts in this blog, I cannot guarantee the accuracy of the information obtained from other websites and sources and also suggest you visit the websites directly, at your own risk, to obtain information that may have later been updated since I obtained the information. I cannot guarantee the authenticity, accuracy or safety of links to other websites today although at the time of posting the links were safe. This blog is run on a voluntary basis and may not be updated regularly.

Q&A & Definitions

What is an 'Adenoma'?
"An adenoma is a benign tumor (-oma) of glandular origin. Adenomas can grow from many organs including the colon, adrenal glands, pituitary gland, thyroid, etc. Although these growths are benign, over time they may progress to become malignant, at which point they are called adenocarcinomas. Even while benign, they have the potential to cause serious health complications by compressing other structures (mass effect) and by producing large amounts of hormones in an unregulated, non-feedback-dependent manner (paraneoplastic syndrome)." Source: Wikipedia

What is a 'Hepatic Adenoma'? ["HA's"]
"Hepatocellular adenoma, also hepatic adenoma, or rarely hepadenoma, is an uncommon benign liver tumor which is associated with the use of hormonal contraception with a high estrogen content.[1] Patients taking higher potency hormones, patients of advanced age, or patients with prolonged duration of use have a significantly increased risk of developing hepatocellular adenomas." Source: Wikipedia; "a benign tumor of the liver, usually occurring in women during the reproductive years in association with lengthy oral contraceptive use. The tumor is usually solitary, subcapsular, and large, composed of cords of hepatocytes with portal triads. SYN: hepatocellular adenoma." Source: Right Diagnosis's website

Two types of Hepatic Adenomas
"...tumors of bile duct origin and tumors of liver cell origin. Hepatic adenomas of bile duct origin are usually smaller than 1 cm and are not of clinical interest; typically, they are found incidentally on postmortem examinations. Hepatic adenomas of liver origin are larger—on average, they measure 8-15 cm—and are often clinically significant." Source: Emedicine

What is a 'ruptured Hepatic Adenoma'?
"Hepatic adenomas may rupture and bleed [hemorrhage](internal bleeding), causing pain in the area where the liver is situated (upper abdomen on right hand side of torso) and for this area to be distended [Swollen/raised due to pressure from inside] ). The primary reason for advocating surgical resection of a hepatic adenoma is this risk of rupture/hemorrhage. The risk of hemorrhage increases with increasing tumor size (>10.0 cm) and hormone use." Source (adapted by me): EMedicine.; "The most extensive complication of hepatic adenoma is intratumoral or intraperitoneal hemorrhage, which occurs in 50 to 60 per cent of patients." [my bolding] Source: US National Library of Medicine

What is 'resection'?
"Resection, in surgery, refers to removal of an organ or lesion by cutting it away from the body or the remainder of the tissue. A doctor may say that a tumor can be resected, or is resectable, when it can be completely removed by surgery without leaving any of the tumor tissue, or without causing death to the patient by removing or damaging an essential structure." Source: Wikipedia; "Elective resection of hepatic adenoma has a mortality rate of less than 1 per cent, while the mortality rate with free rupture is 5 to 10 per cent. Because of the relative safety of elective versus emergency resection and the potential for malignant change, the treatment of choice for hepatic adenoma is surgical resection." Source: US National Library of Medicine

What risk is there of the hepatic adenoma becoming malignant (cancerous)?
"Malignant transformation is rare, but for this reason, surgical resection is advocated in most patients with presumed hepatic adenomas." Source: EMedicine; "Adenomas can progress to adenomatosis, which are inoperable, or malignant transformation..." [my insertion: to hepatocellular carcinoma (HCC)] . "...Focal nodular hyperplasia is marked by a stellate scar, sometimes accompanied by hemangioma, but is asymptomatic. It is not increased in oral contraceptive users, but occurs in older women. It can transform to fibrolamellar hepatocellular carcinoma. The 2 benign lesions can be distinguished by radionuclide scanning and angiography. Only fine needle aspiration is advised for biopsy, because of the risk of hemorrhage with adenoma. Focal nodular hyperplasia takes up radionuclide, stains intensely on angiography, and is safe to biopsy percutaneously." Source: US National Library of Medicine. "Alpha-fetoprotein (AFP) levels are helpful in differentiating hepatic adenoma from HCC. A high AFP level indicates the presence of HCC, although not all patients with HCC have elevated AFP levels.5 Several cases have been reported in which highly differentiated HCC was diagnosed within an adenoma, although preoperative AFP results were negative." Source: Emedicine

What is Adenomatosis?
"Hepatic adenomatosis is the presence of numerous, more than 10 and up to 50, hepatic adenomas. It is a rare disorder, best characterized with MRI." Source: Radiopaedia website

Incidence of Hepatic Adenomas
"Hepatic adenomas are strongly associated with use of oral contraceptives, anabolic androgens, and glycogen storage disease. They are less commonly associated with pregnancy and diabetes mellitus.The incidence of hepatic adenomas has increased in the last several decades, a trend that coincided with the introduction of oral contraceptives." Source: UptoDate; "Ninety percent of hepatic adenomas arise in women aged 20–40, most of whom use oral contraceptives." Source: Wikipedia; "The incidence of these conditions has been increasing since 1970. Hepatic adenoma primarily affects young women of childbearing age who have a long history of using oral contraceptives..." Source: US National Library of Medicine; "Race -No known racial predilection for hepatic adenomas exists. Sex - In a retrospective analysis of 437 patients with liver tumors, 44 patients had hepatic adenoma.12 Of these patients, Weimann et al reported a male-to-female ratio of 1:3.9 (9 men and 35 women). Age - In the study by Weimann et al, the mean patient age was 34 years (range, 15-64 y) in those affected by hepatic adenoma (44 patients)." Source: Emedicine

Size of Hepatic Adenomas
"Hepatic adenomas range in size from 1-30 cm, averaged 8-10 cm in diameter, contain vacuoles and glycogen, but no Kupfer cells or bile ducts."...."users of oral contraceptives who have hepatic adenoma develop are likely to have larger tumors and higher rates of bleeding and rupture than nonusers who have hepatic adenoma develop." Source: US National Library of Medicine. " Hepatic adenomas of bile duct origin are usually smaller than 1 cm and are not of clinical interest; typically, they are found incidentally on postmortem examinations. Hepatic adenomas of liver origin are larger—on average, they measure 8-15 cm—and are often clinically significant." Source: Emedicine

Can a Hepatic Adenoma get smaller or disappear without surgery/resection?
[My note: From my owner experience, it can get smaller!]
"Although hepatic adenomas may regress after discontinuation of oral contraceptive use, this is not a consistent finding." Source: US National Library of Medicine
"The lesions can occasionally regress after cessation of oral contraceptives; however, less commonly, enlargement has been observed after cessation." Source: Emedicine

Can I die from it?
An hepatic adenoma itself is not necessarily life threatening, but if it ruptures, it can be life threatening. Rupture is a significant risk from what I have read ('50 - 60% of patients'). For the Hepatic Adenoma to become malignant can also be life threatening, however, the risk of it becoming malignant, according to what I have read, is very low. [My note] "Rarely, hepatic adenomas may undergo malignant transformation to hepatocellular carcinoma (HCC). Alpha-fetoprotein (AFP) levels are helpful in differentiating hepatic adenoma from HCC. A high AFP level indicates the presence of HCC, although not all patients with HCC have elevated AFP levels.5 Several cases have been reported in which highly differentiated HCC was diagnosed within an adenoma, although preoperative AFP results were negative." Source: Emedicine

Frequency
"The incidence among long-term users of oral contraceptives is approximately 4 cases per 100,000.7 In women who do not use oral contraceptives or have used them for less than 2 years, the incidence is 1 case per million." Source: Emedicine

Focal nodular hyperplasia and hepatic adenomas
Focal nodular hyperplasia is another type of benign liver tumour that is sometimes confused with hepatic adenomas. "Focal nodular hyperplasia (FNH) and hepatic adenomas are rarely seen in childhood. Both of these benign lesions have an association with a high estrogen environment and frequently occur in adolescent girls. Hepatic adenomas are associated with oral contraceptive use.

Signs and symptoms may be absent or are nonspecific and include abdominal pain and mass symptoms.

A characteristic central scar on CT scan is pathognomonic [definition of pathognomonic: 'characteristic for a particular disease'.] for FNH. Unenhanced CT scans reveal a hypodense well-defined lesion. A 3-phase CT scan is the optimal study to make the diagnosis of FNH, including an arterial phase, portal venous phase, and delayed images. During the arterial phase, an FNH lesion appears as an early contrast-enhanced homogenous lesion that becomes isodense with the normal liver parenchyma on delayed images. A less-enhanced central scar can be seen in less than 50% of lesions." "Differentiating FNH from adenomas may require a technetium sulphur colloid scan, which reveals uniform uptake by FNH lesions." "FNH lesions have no malignant potential and are often asymptomatic. Many surgeons advocate elective resection to prevent spontaneous rupture and hemorrhage; however, other surgeons follow these lesions with serial ultrasonography monitoring. If the lesions are symptomatic or rapidly enlarging, complete surgical resection, embolization, or hepatic artery ligation may be used for treatment.

Hepatic adenomas are treated with complete surgical excision because these lesions have a small risk for rupture, hemorrhage, or malignant transformation to hepatocellular carcinoma." Source: Emedicine
[From what I have read, FNH is different from HA in that FNHs don't appear to have a link to use of contraceptives, HAs tend to be/get larger, HAs more chance of malignant transformation, FNH have a central distinguishing scar, FNH more common in older people, where HAs more common in women of childbearing age. Anybody, please correct me if I am wrong.]

What are the symptoms of having a Hepatic Adenoma?
From what I have read, they say that mostly, there are no [recognisable] symptoms and that usually HAs are discovered 'accidentally' while the patient is undergoing other medical evaluations/scans. [read my blog post 'Symptoms' for my own experience regarding the symptoms before and after the rupture of the HA].

How can I get tested to see if I have an Hepatic Adenoma?
You will need to have a CT scan or MRI done, however, if the HA is large enough, your GP (doctor) might be able to feel it by gently pressing on your abdomen at the liver. [The HA in my body is now 8cm x 8cm and if I lie down on my back I can still see a slightly raised area, but if I press gently on it, I can definitely feel it. It feels like a hard mass/ball.] For a definite diagnosis, you will need to have a CT scan or an MRI done. From what I have read, it is NOT recommended to perform a biopsy due to the risk of rupture.

What are the symptoms of the Hepatic Adenoma rupturing?
If the HA ruptures/starts bleeding, you will know that something is wrong. In my case, I started off with what felt like a stomach ache/pain. My stomach then started to feel more and more bloated and the pain intesified in my abdomen (I think it was in the space of an hour as my 'stomache ache' started when I was in a meeting). Your abdomen/stomach region will become more and more raised with the lapsing of time as the HA bleeds internally. The pain will also continue to intensify. You need to get to a hospital quickly as this is an emergency situation.

What should the doctors do in the case of a ruptured adenoma?
I cannot answer this as I am not a doctor but I can tell you what happened in my case. I was fortunate in the doctor at which hospital I was admitted, after diagnosing me, said that I should be transferred to another hospital which was well known for their liver specialist surgeons. The surgeons decided not to resect at that time (refer above definition of resection) because it would be too life threatening due to the extent of the internal bleeding. They decided to perform an embolisation which resulted in the internal bleeding coming to a stop. After the successful embolisation, because the HA was so large and so much bleeding had taken place internally, they decided to wait for me to stabilise and for the tumour to become smaller as the (old) blood dissolved back into my system before deciding when and if they should operate.

What is embolization/embolisation [in this context]?
"The procedure is a minimally invasive alternative to surgery. The purpose of embolization is to prevent blood flow to an area of the body, which effectively can shrink a tumour or block an aneurysm.

The procedure is carried out as an endovascular procedure by a consultant radiologist in an interventional suite. It is common for most patients to have the treatment carried out with little or no sedation, although this depends largely on the organ to be embolized. Patients who undergo cerebral embolization or portal vein embolization are usually given a general anesthetic.

Access to the organ in question is acquired by means of a guidewire and catheter(s). Depending on the organ this can be very difficult and time consuming. The position of the correct artery or vein supplying the pathology in question is located by digital subtraction angiography (DSA). These images are then used as a map for the radiologist to gain access to the correct vessel by selecting an appropriate catheter and or wire, depending on the 'shape' of the surrounding anatomy.

Once in place, the treatment can begin. The artificial embolus used is usually one of the following:

Once the artificial emboli have been successfully introduced, another set of DSA images are taken to confirm a successful deployment." Source: Extracted from Wikipedia

As a user of contraceptive pills, when should I get a scan to see if I have an Hepatic Adenoma?
I can only provide you with my opinion. I would definitely get a scan if I was on the pill for 10 years or longer. If you like to be super safe and you have the money/resources to do so, I would get a scan if I have been on the pill for 5 years or more. Also, when you go for your annual check up with your doctor, it can't harm for you to ask him/her to examine your abdomen in the region of your liver for any exterior signs of a possible large HA (this shouldn't cost you anything extra).

Now that I know about this, should I discontinue use of contraceptive pills?
This is entirely up to you. Not all women using contraceptive pills get HAs. The risk is yours to take, if you feel it is a risk worth taking.

Saturday, October 3, 2015

Hepatic Adenoma Rupture 2015 Update

Hi all, I turned 40 in June and my HA rupture (I have 1 HA currently approx 5x7cm and in too risky a spot to operate) took place 5 years ago (Feb 2010) at age 34 (I was on the pill from age 16 to 30 and also underwent acne treatment with Androcur, etc).

I had my annual ultrasound earlier than usual this year, in early June instead of August. Pretty much no change in size, well apparently 1mm smaller on one side and 1mm larger on the other side. I guess that means it has shifted, but basically very little, if no difference in size. Doc seems happy and we will continue monitoring annually. I had a peak at the screen when they were doing the scan and I noticed that the 'moon' type craters that showed up so clearly on last year's scan weren't visible this time. It just showed up as it was before, i.e. a 'liquid' component on the one side and the rest a solid mass.

It is difficult to know what of my symptoms are associated with the HA and which are completely unrelated but I am reporting everything here so please take it with a pinch of salt as it could be that I am suffering from other unrelated ailments. My liver surgeon is of the view that most of my (ever changing) symptoms are unrelated to the HA/HA rupture. No doctor has been able to give me a firm diagnosis of anything I have experienced after the rupture and whenever I go and get blood tests done, all comes back normal. I sometimes wonder if some symptoms are psychosematic and whether I should go see a shrink about it!

I decided to go for a scan earlier than usual this year because I started off having a tough winter having been ill for a few months. It seemed to have something to do with my inner ear but symptoms included severe nausea, vertigo,dizziness, foggy head, etc. It was horrible and although most certainly unrelated to the HA, I just thought it best to have the scan to make sure all is okay still.

Once this year and twice the year before (in winter) I also had some sort of strange attack (not sure if it was a gallbladder attack or something else) which involved severe chest pain (as if having your wind knocked out of your chest and a feeling of straining) which was so painful that it left me crawling on the floor and unable to speak (first time I went to emergency room I was so scared). The attack lasts a minute or longer and then subsides. To this day I do not know what it was (by the time I got to emergency room it had subsided). First time it happened I was incorrectly diagnosed by a GP with Hyatias Hernia and second time I did not get a diagnosis. First time it happened it happened a few days after I had an MRI. It then happened about one month after that. A year later (a few months ago) it happened again.

Other than that I have been doing better. I have been suffering from less 'liver' pain and also less frequent gallbladder pain. I am still struggling with indigestion, heartburn and digestive issues and eventually went to see a GI who seems to think I have irritable bowel syndrome. I keep a daily diary of all my symptoms, bowel movements and food I eat and something is telling me that I may be struggling to absorb nutrients. I've always sufferred from weak spells when not having eaten enough or when I have eaten food with sugar, but the nature of the weak spells I have been experiencing lately seems different and to not coincide with my eating habits as it did before. I would feel them after eating a meal or in the middle of the night and they would coincide with the times that my bowel movements were loose or runny, same applied to the nausea/general ill feeling. I found that by drinking Rehydrate when I feel like this helps me feel much better. I'm not into drinking supplements but I've also started taking one women's 'high potency with collagen & cranberry' multivitamen daily and this also seems to be helping.

Another 'regular' symptom I have had over the past few years which also seems to be cyclical is that I get what I call "underarm" pain in my right armpit and the area also swells up and becomes very tender/sore to the touch. This starts shortly after ovulation increasing in swelling/pain up until I start my period. It eventually subsides towards the end of my period and is gone a week after my period. I thought is is my lymph node but am not sure anymore because the swelling seems to be into my breast almost in the formation of a line. Again, I don't know if this is completely unrelated to the HA.

I also still experience regular bouts of unexplained itchy skin.

Something else that started this past year is that I find that if I have a glass of wine or two I get blotchy red in the face. I drink very little but enjoy one or two glasses of wine or a beer on the weekend. It doesn't happen all the time but I have become thankful for it because it is the way my incredible body guides me in what I should and should not do. It is a goal of mine to start being more in tune with my body by listening to the messages it is sending me instead of my body being my 'enemy' which is how I have felt up until now after the rupture.

It is amazing how the following to this blog is increasing. It shows how many of us are suffering the same plight in this world. It is difficult for me to respond to each comment individually but I have read all of your posts. A few general responses regarding posts received since last year:

For those of you who are scared, this feeling is normal and there are things we can do to not let the fear take over our lives. I find it helps to keep a diary to record daily symptoms, eating habits, bowel movements, etc. This is also good in case you need to report back to your doctor. Talking also helps... whether it be by communicating with people on this blog or other forums, by seeing a therapist or joining a support group, you need to get out what you are feeling otherwise it will eat you up inside. My biggest problem is that I have become a bit of a hypochondriac in that every little symptom makes me think I am about to die. I am working on this and trying to 'roll with the punches' as my hubby says. I don't ignore the symptoms and if things get bad I go to doc and spend a bunch of money on blood tests, etc.... then they tell me I'm okay and then I feel better again. I'm just getting to the point where when I experience a strange symptom I tell myself, okay, this is interesting and try to keep a level head about it rather than panicking. I record it in my diary and 'keep an eye' on it. I think the fear is the most difficult thing to overcome. I'm slowly also working on letting go of my fear of death because it is the root of my problem. I think the key to this is becoming accepting of it and seeing it as a part of life, no less beautiful than actual life itself, rather than living in constant fear of it. To accept that we are not in control also helps. Remember, you are lucky to know that you have HA(s) which means you are one step ahead and should you experience a frightening symptom which requires for you to go to the ER, you can notify the medical staff to ensure quicker action in case of rupture

For those of you with multiple HAs, thank you for sharing your stories on this blog, we are hearing from more and more people in the same boat as you. It is in this way that patterns can be picked up and hopefully soon we will have answers as to what is causing this, how to treat and manage it. It seems some woman who have multiple HAs have not been on the pill or have been on the pill for a short period. I would be interested to know whether these women have been on any other long terms meds, hormone therapy or acne treatments or if they all live in same areas/eating habits, etc. We are exposed to so many hormone disrupting chemicals in our lives, there seems to be something other than the pill playing a role in the development of multiple HAs. It would be great if one of you with multiple HAs is able to start a blog or forum specifically for multiple HAs for the purpose of gathering more information to help play a part in solving the puzzle. If each person posting their story can also share what meds they have been on, etc to see if there is a pattern.

A lot of you have questions about the safety of pregnancy. I think each case is unique and your doctor would have to guide you. My liver specialist unfortunately has not been able to give me any feedback on this topic but I will not be having children in this lifetime. There are general concerns that pregnancy may cause the tumour(s) to grow. For those of you who have fallen pregant and given birth, please share your stories so that we can continue to gather more info on this.

A lot of you are complaining of fatigue. I also tend to need to sleep a lot. This was especially the case for the year after the rupture but even today I struggle if I am not in bed by 10 and I can sleep straight through to 7am or even later. Just before bed time the fatigue is so severe that I sometimes wonder if I will even make it to my bed! If I get enough sleep, I feel fine during the day, except on those days where I have multiple loose bowel movements. On these days I start off with 'morning sickness' (nausea, weakness/fatigue, unwell feeling) and start feeling better in the afternoons. Thankfully I have been having these type of days less often than I have been over the past four years.

Now that I am 40 (this was a hard adjustment for me), I am also curious to know how menopause will affect us and have noticed that this is a question on some of your lips too. Over the past few months I've also started experiencing night sweats from time to time each month. Wonder if this is the start or something else? Guess time will tell. I've decided to stop worrying, it is not going to help anything.

A quick word of thanks to Tan, Chemene and others for having provided support by sharing your experiences and words of comfort to others on this blog. I ask that all of you reading other peoples post where you can relate, please don't be shy to reply on their comment to provide encouragement.

I've read every single one of your posts and although I may have not responded personally I AM WITH YOU AND AM FOLLOWING YOUR STORY AND SO ARE MANY OTHERS FOLLOWING THIS BLOG, I would really love to hear from you again to see how you are doing. Many of you were scheduled for ops/resection. Please write back to tell us how it went and thanks to those of you who have already done so.

Strength and love to you all. You are not alone and we can conquer this together, at the same time help others which brings purpose and meaning to what we are going through.

ONE LAST THING, and this is a reminder to myself... STRESS is a killer. We need to work on limiting / reducing stress in our lives. Make this a priority in your life. Sometimes it is ourselves that cause the stress, this is something we have control over and should change. By assessing your daily routine and work life you will discover there are ways to reduce and manage stress. Google it! ;) xx

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