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.

Featured Post

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.

Tuesday, September 10, 2013

My scan results 27 August 2013

I went for an ultra sound on 27th August, one year after my last scan.

The good news is that the tumour has not gotten bigger since the last scan. The tumour is the same size at what it was a year ago, i.e. 8cm x 10cm.

I discussed the results with my liver surgeon. He confirmed that it seems like the tumour has now settled into the size it was before the rupture. We obviously don't know for sure whether this is the size it was before the rupture, but it seems logical that over the past 3 years the blood from the rupture has dissolved/been processed and now all that remains is the 'original' sized tumour.

Again, same as before, my surgeon has confirmed that I am not a suitable candidate for a rescession because the tumour is situated in a very tricky spot (an operation would be very high risk because the tumour is literally surrounded by all the major veins and arteries to/from my heart & supplying blood to my liver, all of which I need in order to survive - he said that if we try and remove it, it would be like trying to change the spark plugs of a car through its exhaust while the engine was running!). He suggested that all we can do is continue to monitor annually.

I am now 38 years old and don't have any children. Although my husband and I are not 'broody', my mom asked me to ask the surgeon whether I could safely get pregnant. He could not give me a firm answer on this and said he was soon going to attend a conference with a bunch of other liver surgeons from all over the world and would make some enquiries about this (pregnancy after rupture of HA) to see what he can find out. (by the way, I told him about my blog and said to him that he must let other patients know in case they are looking for support on line :) I also told him about some of the things you guys have shared with me, much of which he found of interest, for example that many of you are reporting that you have multiple HAs and have never been on the pill. I said to him that I think that we should all be involved in a study to get to the bottom of things.

I also asked him whether he thought there was a risk of my HA rupturing again. He felt pretty confident that I don't have to worry about this because the 'main' blood supply to the tumour was 'cut off' when they performed the embolisation on me. He confirmed that the tumour is still surrounded by many tiny blood vessels the size of hair, but that the rupture was at the large vessel that was feeding it blood and which was more like the size of a pencil (the vessel that was 'shut'/closed by way of embolisation). He said that there is not much risk with the tiny blood vessels surrounding the tumour now. This is such a relief for me because re-rupture was one of my worst fears.

For the first time ever, I asked my doc to take me through what happened when the rupture took place 3 years ago because I always heard all the information 2nd hand from my family and actually didn't really understand everything. While I was in ICU after it happened, I was so drugged up that I couldn't register what was happening. Then, 3 weeks afterwards when I was released from hospital, I was so afraid for the first year, that I couldn't really face it all. Something new he told me which I didn't know is that when I had the rupture, that the bleed was first 'into' the tumour, the tumour 'blowing' up like a balloon until the tumour actually burst, bleeding into my abdomen. He said at the worse part of it, my tumour was literally the diameter of a ruler! After the rupture, it reduced after it bled out and then over the past 3 years it reduced in size as the blood slowly was being processed through my body.

Well I think I have covered everything discussed with my doc, but if I remember anything else, I promise to share.

(holding my breath!...)Some other very significant and incredible news I have to report is that as from the beginning of August (2013), I have been feeling A GREAT DEAL BETTER. I've felt reluctant to share this with anyone because I was just waiting to feel terrible again because I know my symptoms happen in cycles, but I am certain now that it has been long enough to honestly say I am feeling better. My symptoms that were giving me so many troubles and really impacting my quality of life seem to be practically gone. I am knocking on wood here because I really hope this lasts and it is not just a brief period of relief.

I am continuing to keep my diary of everything I do each day (diet, bowel movements, symptoms) to see if I can figure out the mystery of what is going on with me. I strongly suggest you do the same. Keeping a log of everything, religiously, really helps a lot, psychologically speaking, and, who knows, maybe we can learn something from keeping a good record of what is happening to us.

Will keep you posted regarding any further news. Please also keep me posted regarding how all of you are doing. If you have not yet signed up as a follower of my blog please do so now. My dream is to start a proper forum and international support group for all hepatic adenoma sufferers. Keep your chin up and sending all of you LOADS AND LOADS of strength. Love, Ninette

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3 comments:

  1. AnonymousNovember 18, 2013 at 9:52 AM

    So glad to have found your page. Like many others mine was found screening for something else (colon polyp). I have a MRI tomorrow. CT scan shows it is currently 6cm x 10cm. Very interested to see what your doc says about a baby. I was in the process of trying but have now stopped due to finding out. I was on clomid for one cycle but that may not be an option now.

    ReplyDelete
  2. SherryJanuary 1, 2014 at 2:24 PM

    Hello and thank you for starting this blog! Has anyone had a pregnancy after being diagnosed with HA? Did you have pain associated with its growth during this time?
    I started with a 4cm, which got smaller after stopping BC, but after a one-week pregnancy (miscarried) I was already starting to feel the familiar bile duct pains, most likely due to the tumor coming alive again (it was found right next to my gallbladder when they had to remove my gallbladder due to calcification/small stones). I actually think the tumor caused the problem with the bile ducts that ultimately destroyed my gallbladder, and I am nervous about trying to conceive again--wondering what is in store as far as pain, etc.

    Thank you for your help and any advice!
    Sherry

    ReplyDelete
  3. NinetteJuly 21, 2017 at 6:19 AM

    Hi Sherry, let us know about your experience if you decided to have a baby.

    ReplyDelete

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