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.

Friday, July 8, 2016

Ruptured Hepatic Adenoma 2016 Update

Hi everyone, I had my annual ultrasound done last month, 14th June. The results were that the tumour has shrunk by 1cm (width) but is still the same length as one year ago. The radiologist noticed a large discoloured area on the right lobe of my liver but the imaging was not clear enough to indicate what it could be. My liver surgeon ordered that I have an MRI done as soon as possible to check it out in more detail. I was terrified but went ahead with the MRI on 28th June. My surgeon was very busy for the remainder of that week and only called me with the result Tuesday this week (5th July). After much mental anguish and anxiety, I am so grateful to report that it was nothing and that everything is fine. The existing tumour is still the same (stable) and doc said I can come for another scan again one year from now. Leading up to the annual scan, the past few weeks were tough in that I became quite sick (digestive issues) and was told I had an inflamed stomach lining. My husband is convinced it is stress. Some of you have asked how are we dealing with all of this emotionally. It is extremely hard, especially knowing you have a ticking time bomb inside of you. I have finally resorted to seeing a psychologist to see if she can hopefully help me overcome my fears and to help me better deal with my symptoms. I will hopefully be starting a therapy called 'Mindfulness Therapy'. A friend of mine explained to me how it helped her deal with the extreme physical pain she was experiencing due to her own (unrelated) health condition. I will give all of you feedback on how it goes. Thanks to all the new posters and please if you have been diagnosed with an HA, 'follow' this blog so that you can automatically get these updates from me and so that we have a way of keeping in touch. To give you guys an idea of how many women worldwide are affected (or atleast the women who have found my blog), I have had close to 70,000 page views, now have 30 followers and have had over 100 comments/woman sharing their stories. Sending all of you love. Keep, strong, stay calm and carry on. More posts to follow.
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Thursday, April 21, 2016

News Story - Hepatic Adenoma

This audio clip is by Jennifer Lysle-van Dyk from the University of Wollongong (Australia). Jennifer is majoring in Journalism and did this radio news story as one of her major assignments. Jennifer was diagnosed with one HA; here is a summary of her personal story:
I was diagnosed with one HA on 1 March, after having blood tests and an MRI to try to find out why I'd been feeling like I was on the verge of having gastro for the last 4 to 6 months - pains in my abdominal region, nausea and vomiting, bloating - but no diarrhea. I thought I'd developed lactose intolerance but the scan showed a 50 X 24 X 50 millimetre tumour that my doctor said was an HA. I'm going to see a liver specialist on the 19th and expect that he'll tell me it's got to be resected because of the size and that its symptomatic. But, I still don't know if resection is an option because I don't know exactly where it's located - will wait to see what the specialist says.
Thank you Jennifer, on behalf of all of us for doing this and good luck with getting the clip aired on your local radio station! Please also keep us posted on your condition.
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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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Tuesday, August 5, 2014

Hepatic Adenoma Update 05 August 2014

Greetings everyone. I went for my annual scan this morning. Again, an ultrasound instead of a CT or MRI. So, (drum roll)...... the tumour has shrunk and is now 5 x 7 cm! This is a substantial difference from last year (8x10cm), and the year before (no reduction in size). Just a quick recap for the newbies, 4 years ago (Feb 2010) the hepatic adenoma in my chest which I knew nothing about had a blood vessel burst (into the tumour itself) causing the tumour (hepatic adenoma) to expand (blow up like a balloon) as it filled with blood only stopping when it was physically incabable of getting any larger (it was between 16 & 18cm!). I was rushed to hospital and had an emergency embolisation performed in order to stop the bleeding and since then have been recovering and patiently awaiting the shrinking of the tumour as it is situated in too tricky a spot to have it removed. As the doctor was moving the ultrasound gadget over my upper abdomen this morning, I twisted my head to the side to see what I could make out on the screen (as if I would even know what I was looking at!) I however immediately noticed that the adenoma looked completely different. There were what looked like multiple round circles on/in it. I said to the radiographer that it looks very different and he agreed, but assured me that it is smaller in size. I then had to wait until my doc reviewed the results with the radiographer before he saw me. As I walked into his consulting room the first thing he said is how good I looked and he then asked me what I have been doing? I was not sure why he asked this but he did have a curious smile on his face. He said the good news is that the h.a. has gotten significantly smaller. He then added that it has changed in character (when it used to be what he would draw as a circle with the top section being 'solid' and the bottom (larger) section being liquid, he now drew it as a circle with the top small 'solid' section looking the same, and the bottom now filled with what the radiographer described as (round) nodules - to me it looked like craters on the moon). My doc could not explain it but said that my case is so unique and that he has not seen it before but he says that because the tumour has gotten smaller, he is not too concerned. If it had grown in size, he would have been. He did however say that he was going to review the results more thoroughly compared with my previous ultrasound and with my previous CT and MRI scans and will also show it to another liver surgeon and will then phone me in about two weeks time to discuss again. He said it may be time for another CT or MRI scan but before we go down that road, he wanted to review the image a bit more carefully. If I am doing well and the adenoma is smaller, then he is not worried and we can then wait until next year to review again. So, there you have it! As for how I have been doing physically since my last post, I can honestly say I am doing very well. I still have my monthly cyclical changes in bowel movements, cyclical mild nausea and odd pains. When I told doc about two new pains I have been having, he just sort of laughed it off and suggested I take an asprin or panado. So I guess my paranoia with the pains needs to stop because doc doesn't seem to be too worried about them at all. (I still have that massive gallstone, but he said unless if it really starts troubling me, there is no need to do anything about it). I will post further as soon as doc phones me in two weeks time. Thanks again for all of you who are following my blog and posting comments / sharing your stories. Keep your chins up!
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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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Sunday, August 18, 2013

UPDATE FROM NINETTE 18/08/2013





Hi everyone, sorry it has been so long.  I have managed to catch up on the most recent comments posted by everyone. Thanks for all the contributions.  Here is some info I picked up from posters I’d like to share with everyone:
A SINGLE HEPATIC ADENOMA OR MULTIPLE HEPATIC ADENOMAS?
There are woman (and men) who have multiple hepatic adenomas (liver cell adenomatosis - not associated with the long term use of birth control or hormonal therapy/ies ) as opposed to having one adenoma liver cell adenoma associated with the use of the pill/hormone therapy/ies).  For those of you who never took the pill, we need to find the answers regarding what causes this.  Sharing our experiences will help.
One poster has offered some new links for us to read.  I found the following link very informative: Liver cell adenoma and Liver cell adenomatosis - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2023950/
Here is another link on general HA info: http://www.uptodate.com/contents/hepatic-adenoma
OTHER NEW TERMS I HAVE LEARNED
Some of you have shared how you have had:
Radiofrequency ablation (RFA) - http://en.wikipedia.org/wiki/Radiofrequency_ablation
Or
stereotactic body radiotherapy (SBRT).- http://www.radiologyinfo.org/en/info.cfm?pg=stereotactic
As far as I can tell this is a treatment that does not make the HA’s disappear, but damages the cells of the tumour so that they cannot reproduce.  RFA seems to be based on using an electric current while SBRT is based on using radiation.  The two links I provide here will give you more information.  I find the RFA option interesting, but wonder about if that sort of treatment can be used on the larger tumours or just the smaller tumours.  For those of you who have had one of these treatments, please let us know how you are doing and more about your experiences with these treatments.
OUR SYMPTOMS – THERE ARE MANY AND THEY SEEM TO VARY FROM PERSON TO PERSON
Many of us are also sharing our symptom experiences.  It is clear all of us are having loads of symptoms which some doctors often say are unrelated (i.e. digestive and menstrual issues, etc).  In addition, some of us are suffering from pain more than others.  From what I can pick up, I believe it depends on where your HA’s are situated on the liver that may impact the type and severity of symptoms.  For example, if the tumour is close to the gallbladder, it may be impacting the flow of bile (bile helps aid digestion) (see Cholestasis - http://en.wikipedia.org/wiki/Cholestasis) . Also, I have noticed that many of us are experiencing that our symptoms are also somehow tied to the timing of our menstrual cycles and ovulation. The liver performs a host of important functions in the body, it regulates hormones, processes and eliminates toxins, etc etc.  For me it seems to make sense that all of this is somehow connected to what we are experiencing, although we need to be sure to have ourselves looked over to make sure there is no other underlying issues.
RISK OF RUPTURE: IS IT SAFE TO LEAD AN ACTIVE LIFESTYLE?
Many of you concerned about possible rupture due to exercise or leading a very active lifestyle.  I can only speak from my own experience here but there are girls who have posted answers on this so do read through all the comments to make up your own mind AND OBVIOUSLY check with your doctor too! When my rupture took place I was in a meeting at a client’s office.  I am now living (post rupture – embolisation), 3 years have passed and the last time I had a scan my HA was about 8cm x 8cm.  In terms of physical activity, I didn’t do much for the first 8 months after rupture, but after that I got back into doing exercise such as swimming, hiking, mountain and road biking, gardening and yoga.  One poster suggested to stay away from horse riding, boxing and other types of heavy exercise where you might get a blow to the abdomen.  As for cardio, i.e. the increase of blood flow, I have no idea if this could be a cause for increase in rupture.  In my case, I have decided that I will continue to do exercise, but I am just mindful of not overdoing it too much.    
Another thing I think matters, and I know this might sound strange, but I am a firm believer in not wearing tight push up bras and other tight tops/clothing that restrict blood flow.  The day I had the rupture, I was wearing a tight push up bra which I rarely wore due to it being so uncomfortable. 
I also believe that you should try and avoid stress.
MONITORING – CT SCAN, ULTRASOUND, MRI?
My next scan is supposed to be on 30 August (end of this month).  I realized that over the past 3 years I have had so many CT scans and have therefore been exposed to a heck of a lot of radiation.  I have heard different stories about how much is safe and how much not, but I think it is up to us to keep a record of when and how many scans we have and inform our doctors about this.  I am going to ask my surgeon if I can have an ultrasound instead of CT scan this time.  I’ve read up and as far as I can tell, the ultrasound will also be able to pick up all the info I need (i.e. change in size, positioning, etc).  Since I have been getting my scans done at public hospitals in a third world country, the possibility is also there that the scan technicians are not using the equipment correctly and unnecessarily overexposing me to radiation (there are real case scenarios of this having happened in the USA, which is a first world country). 
I believe that CT scans play a very important role in saving lives, as it did in my case, however, for the purpose of continued monitoring, in my case where I have been told the tumour is inoperable, I believe I should limit how many CT scans I have over the years and rather save them for a possible emergency (MRI is of course another option for some people, but a more expensive one. My most recent experience with having an MRI was very unpleasant so don’t plan to have one again soon).
SCANS – WATCH YOUR RADIATION EXPOSURE: http://www.oprah.com/health/Are-X-Rays-and-CT-Scans-Safe-Radiation-Risks-Dr-Oz
ULTRA SOUND – WHAT CAN IT DETECT?:  http://www.webmd.com/digestive-disorders/abdominal-ultrasound
I will let you guys know how things go at the next doc visit.  Last scan was over a year ago so excited to see what’s going on inside me!
ADVICE FROM POSTERS – Please remember that people leaving comments and suggestions on this blog (including myself) are not doctors familiar with your specific situation. I have noticed some people posting comments advising people to take supplements/pills. Please do not do any such thing without consulting first with your liver specialist.  (one also has to be careful about vitamins and supplements as too much or the wrong type can impact negatively on the liver and can also impact hormone levels which may have the knock on effect of encouraging tumours to grow)
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Saturday, February 9, 2013

Update from Ninette 2/2/13

Wow, something important is happening here with this blog. So many women from around the world going through the same thing. I wish I was a millionaire so that I can quit my job and start a support group full time. I know that this is just a blog and not a proper site and the whole lay out is not perfect for this type of interaction, but hope one day I will be able to offer something better.

I would like to apologise for the long silence since my last post and would like to thank all of you for your contributions. I did not want to post while I was in a bad space. I will respond to each of your comments individually, but there are a few very important things I need to share with you regarding my experience over the last six months. Please read the whole post as some of it might not seem related at first.

Since about July 2012, I have been going through a rough patch physically and mentally, however things seem to be improving lately. Just to recap, I still have the tumour, now about 8cm. In a tricky spot (right in the middle of left and right lobes), so resection not an option at this stage, just monitoring annually.

This particular post might be more interesting for those of you who have already experienced an Hepatic Adenoma rupture. When I had the rupture (Feb 2010), thankfully the bleed was into the tumour itself causing the tumour to blow up like a balloon to almost 16cm+ (not sure what the size was before the rupture because I didn't know I had it until the rupture!). As you can imagine, the last 3 years all that old blood inside the tumour has been working its way out of my system and the tumour has accordingly started shrinking (from 16cm+ to 8cm). Initially the shrinking was happening fairly fast and it seems it has now slowed down. No doctor ever spoke about or could answer any questions about what I could expect in terms of symptoms after surviving such a large internal bleed.

My physical symptoms after the rupture were actually quite manageable, however, starting July 2012 something changed starting with a day where I suffered from severe chest pain for about 12 mins, it then died down and started again for fewer mins and then went away. It was so severe that I went to the emergency room and by the time the staff saw to me, I was over it and they didnt seem to take it seriously. About a month later, in August 2012, the same chest pain reoccured. This time I didn't go to the emergency room and my husband just tried to help me through it. The pain is a 'crushing' type pain, so severe that it takes your breath away, even difficult to speak and had me crawling on the floor in excruciating pain. Thankfully since then, it has not reoccured.

Besides that, I was experiencing bad days more often and it seemed to be somehow cyclacle (in cycles) and possibly associated with my menses and ovulation as it seems to occur mid cycle and about a week before the period (although this is not set in stone as I have had it outside this time too). On these days I feel super exhausted, nausea in the mornings mainly, fading as the day progresses, excessive thirst, a feeling of air stuck inside me, indigestion, achy limbs and torso (a "deep" type of ache) (more in evenings), change in bowel movements (sloppy foul smelling poo sometimes 3 or more times a day where I used to be more prone to constipation), throbbing pain mainly in my right armpit (once or twice in the left too) coming and going.

I was so concerned by all of this (especially the chest pain) that I had many tests done afterwards (ruled out Hytias hernia). The doc did an ultra sound of all my organs (except heart). He found a grape-sized gallstone in my gallbladder. This is when I started to piece things together myself. I learned that there are two types of gallstones (bilirubin and cholestoral). (I don't have a family history of gallbladder problems.) Bilirubin is a chemical that's produced when your body breaks down red blood cells and bilirubin gallstones are caused by there being too much bilirubin in your bile. My logic tells me that with all those old blood cells (from the internal bleed/rupture) that had to be processed, this would have been the cause of the gallstone forming.

There is something else I realised that might not sound important, but trust me, it is VERY IMPORTANT. When all this started in July, I became a mental wreck again (similar to the first year after the rupture). I thought I was dying and simply could hardly function on those bad days. It was a long hard process but I had to realise that I needed to take responsibility and change my mental state in order to get through it. Doctors could not help with answers so I had to start finding them myself. I started a daily diary which I update religiously every night with my symptoms and my diet. I realised that I was generally very out of touch with my body and that I needed to pay attention more and also learn more about anatomy and how everything works inside the human body. When I figured out the bit about the link with the internal bleed from the rupture and my symptoms, it was such a comfort and I had an explanation which I chose to believe in. This has helped so much, mentally.

The only unexplained thing remaining was the severe chest pain (couldn't write it off to gallbladder attack because it was different to that of other people I have spoken to who've had gallbladder attacks). So, I recalled that I had an MRI four days prior to the first chest pain episode (my period started the day after the MRI and ended on the day of the chest pain episode four days after the scan and the second episode occurred 25 days after the MRI and 20 days after the first episode). Now, some of you may roll your eyes about what I am about to say, but I had to find an explanation that would set my mind at ease. I consider myself to be fairly spiritual and am very sensitive to energies around me. I try to avoid people with bad energy because I tend to absorb that. I also am fascinated by the electromagnetic forces that occur around the Earth and our bodies and generally how this impacts life on Earth. I have chosen to believe that the MRI (in how it works) had an impact on my magnetic field. [I had a full upper chest MRI and I am of small build (5foot4 56kgs), it was done at a public hospital and I am not sure about the competence of the staff, i.e. I was in the machine for a long time.]. Now before you think I have gone nuts, check out this video explaining how an mri works.

Another important revelation I had is just what an impact the long term use of the pill had on me as a whole. If you can imagine, the human body is a perfectly designed machine so complex in millions of ways....everything interlinked. For a young girl to start ingesting pills that impact the very way hormones function in her body (before she has even finished puberty) and continuing to religiously ingest the pills daily into adulthood for decades, can you imagine the impact? When I stopped taking the pill when I was 30 years old, it took two years for my cycle to return. My body didn't know what hit it and I actually felt like I went through a type of withdrawal (in considering the symptoms I had). Finally, my menses came back and, this time, I suffered more with cramps, pms and the bleeding was heavier. I was finally experiencing a real period, not a 'fake' one like I used to have when I was on the pill. This brings me back to the symptoms I have been having lately that seem to somehow be linked to my cycle. I found a forum on the internet and discovered many women who are not on the pill and experiencing the same symptoms. This has also been reassuring in that I now feel that what I am going through is not really something to worry about, but more something to manage.

Now, when I have a bad day, because my viewpoint on it has changed and I have explanations that I am satisfied with, I cope so much better with the symptoms and they actually don't feel so severe. I am so anti-medication, but I have cut myself a break and allow myself a mild pain tablet (paracetomol) maybe once a month if I get a really bad day (I avoid aspirin due to its blood thinning qualities as I imagine this is probably not recommended if you want to avoid a rupture). I also found that gripe water (yes, what they use for babies!) helps with the indigestion type symptoms and I also eat low fat plain yoghurt with probiotic cultures (and also take probiotic tablets from time to time, maybe two a month) and try to drink more water (new rule in the mornings is that I am not allowed my cup of coffee until I first drink a glass of water). I also find that exercise helps... but not just any exercise, it has to be something fun, like cycling outside (not in a gym) or swimming or hiking or going for walks,or if the weather is bad, yoga, dancing in front of a mirror to my favourite songs or skipping rope. Even a few minutes 3 times a week helps. So, to recap, it has helped me to: keep a food/symptom diary, stop feeling sorry for myself and becoming proactive (this is a process and if you are not there yet, be patient, you will get there), eating better, light fun exercise, being more in touch with my body and respecting it / myself (trying to avoid stress), enjoying nature/animals (the best healing therapy ever!), still letting my hair down now and again and MOST IMPORTANTLY, knowing that I am not in control of everything... what will be will be. [When you are down and out, try to change your thought patterns,... it is the one thing we are in control of..(our thoughts). Go sit outside in the sun looking at a tree, then repeat inside your head over and over "I am full of life, I am fearless" or other positive affirmations. When you force yourself to move away from old negative thinking patterns, you will be amazed at how you can reprogram yourself. (Also stay away from watching negative tv programmes/reading negative material and when you are researching on the internet, know when to stop and watch yourself in that you try to learn more about how the body works rather than focusing on trying to diagnose yourself with some dreaded disease!)

)

WHAT'S NEXT FOR ME? I am supposed to have annual scans to monitor the tumour but I am not being religious about the timing of this anymore... if it goes a bit over a year, then so be it. The reason I feel this way is because the liver surgeon told me that mine is inoperable, why focus so much on it?

Note: Since I have changed my outlook as described above, my symptoms no longer feel so severe (I guess my focus is not so much on them anymore as they no longer worry me so much, as before when I was being overly anxious and thinking I was dying). I find that the light fun exercise I do and gardening (I'm into growing veggies) and praying/meditation/positive affirmations really help a lot in making me feel good. Keeping my diet balanced and healthy also helps. I realise just how lucky I am, there are people suffering with terrible diseases and all I have is an HA!

Sending all of you strength! Love, Ninette (contact me direct on ninette at mwebbiz dot co dot za

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