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.

Monday, April 29, 2019

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 intense than the pain, comes a wave of fear penetrating every cell of my being.  I inadvertently stop breathing and stop whatever I am doing, placing my hands over my sternum.  I close my eyes and try to center myself.  Every muscle in my body tense, the familiar thought patterns re-surface as a means of some form of self-assurance.  "You are fine"... "it's nothing", "if it is something, you have plenty of time to get medical assistance", "you are lucky because you know what it could be which will save lots of time in diagnosis to allow for quick and potentially lifesaving treatment".  "If this is my time, it is totally fine... I've had such an amazing blessed life".  "The fear is not going to help anything, whether or not this is what it might be". "Breath... relax, you are going to be fine".

This is just something I've had to live with, ever since I was rushed to hospital with acute severe abdominal pain (which had started a few hours earlier as a minor, what I thought was, a tummy ache) 10 years ago. The hospital and emergency room staff and doctors were having trouble diagnosing me. 24 Hours and 3 hospitals later, my upper abdomen now expanded to the size of a soccer ball, I was finally rushed to the operating room to have a lifesaving procedure (embolisation) to stop the internal bleeding on my liver. The doctors told my family to prepare for the worse.  I was in my early 30s and otherwise healthy, or so I thought (I had suffered from non-specific symptoms for years which I wrote off to being minor side effects of the pill, just as my GPs always nonchalantly reassured me of).

After the embolization and blood transfusions due to the extensive blood loss, my family was informed that it was a ruptured hepatic adenoma (i.e. unbeknownst to me, I had a large benign tumour on my liver that had ruptured that day, causing internal bleeding into the tumour itself, making it expand in my abdominal cavity like a balloon as it filled with blood).

When I was coherent enough to speak to the doctors, they told me that I must have gotten the tumour from long term use of the birth control pill (I had been on it since I was 16).  The larger the hepatic adenoma, the more prone it is to rupture, this being the biggest life threatening risk of having such diagnosis, aside from the reported 10% chance of malignancy.

After quite an ordeal in the intensive care unit which included severe acute psychotic reactions to two opiate painkillers (thankfully my husband had suggested to the doctors to change the meds which immediately solved the problem) and severe diarrhoea from the strong antibiotics I had to take, I was finally released from hospital 3 weeks later.  There was nothing we could do except monitor the progress of all that old blood in me working its way through my system, with the tumour hopefully reducing in size as a result. A year and a bit later, the size of the tumour had thankfully reduced from roughly 16/18cm to just under half that size. In the process of this happening to my body, a large gallstone formed in my gallbladder (gallstones do not run in my family) and I suffered a host of different symptoms as my body tried to heal itself.  That year and the years to follow were filled with ups and downs, a journey of healing, learning and strengthening, physically and mentally. 10 years down the line, the tumour is still in me and now roughly 6 to 7cm in size.

Every year I go for a liver scan at the hospital to check on things.  My liver specialist concluded that he did not think I was a good candidate for surgery to remove the tumour (a procedure called resection) because it is positioned in a very tricky spot between the left and right lobes near all the major veins and arteries leading to/from my heart. 

So I have to live with this thing in me for the rest of my life... not knowing if it might rupture again or if it might turn malignant. Every suspicious pain I get, a potential precursor to the trauma I suffered all those years ago.

After I was discharged from hospital, I had tried to find support and do my own research on the internet regarding this rather unusual sounding condition and its cause(s).  The one forum I came across was a life-saver. Knowing I was not alone was such a comfort.  I decided to start my own blog on the topic to put all that I had learned in a space on the net to share with others, in the hope that it would also help others. 

What followed was incredible.  Hundreds of women from around the world, writing to me to tell me their similar stories.  This also eventually led me to a Facebook group started by someone in the United States.  This group is growing fast and the last I checked had just under 400 members. 

I started hearing from women (and even one or two men) who had multiple adenomas instead of a singular one like mine.  Some had so many throughout their livers they could not be counted, many of them being told they need liver transplants. Something else was going on here because the people with singular hepatic adenomas generally had either a history of using the contraceptive pill or some other form of hormonal therapy/ treatment, whilst a significant percentage of the people with multiple hepatic adenomas (adenomotosis) had not taken a contraceptive pill in their life.  Could this be caused by other environmental factors too, such as hormone disruptors people are exposed to via air, water and/or in food?!

My aim in raising awareness about this issue which is causing hundreds of people around the world a lot of physical and emotional pain and suffering, stress, anxiety and financial distress, aside from potential loss of life, is to:

  1. Advocate for the World Health Organisation to update the stats regarding the ratio of hepatic adenoma and adenomotosis reported in people who have been on oral contraceptives pill (the stats circulating today are largely outdated, from the 70s/80s; I believe the pill only started being used widely in the 70s).  
  2. Advocate for the World Health Organisation or any independent body, organisation or University to conduct further studies to get to the bottom of what else (other than oral contraceptives and hormonal therapy/treatments) is causing the HAs in patients who have not been on any form of hormonal therapy/pill.
  3. Advocate for the World Health Organisation to send to the medical profession and family planning clinic staff/social workers information educating them of the condition and symptoms of rupture, together with a directive  to immediately stop promoting oral contraceptives (and other hormone therapy/treatments) to patients in a fashion that makes the patient believe there is little to no risk involved and to rather specifically warn patients regarding the additional risk of long-term use, and if electing to do so, to insist they have their GP monitor their livers annually or biannually.
  4. Advocate for the World Health Organisation to send a directive to pharmaceutical companies to more accurately portray the risks/contraindications on the information leaflet that comes with their product(s).
  5. Advocate for the World Health Organisation to send a notice to medical emergency staff at hospitals regarding the symptoms of ruptured hepatic adenoma so as to ensure a fast diagnosis to allow for appropriate life-saving treatment to be administered without unnecessary delay which may cost a patient's life.
  6. Warn uninformed women and men of this additional and significant risk in exposing themselves to hormone disrupting medication/treatments. 
(Due to the alarmingly out of control rate of growth of the human population on Earth, I understand the importance of advocating for birth control and family planning, however all birth control options should be carefully considered and we can only do so once we know the truth about the safety of the methods of birth control that are being promoted so aggressively by professionals in whom we trust have our best interests at heart.)
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