MEN1 Patient Stories
I was 3 years old when my father died, and back in 1981 his doctors didn’t know that the multiple tumours that kept cropping up around his body were caused by MEN1. It was 23 years later that my brother’s endocrinologist read over my father’s autopsy and suspected there might be a link and therefore sent one of my brother’s DNA to be genetically tested. After my brother was confirmed as having MEN1 the rest of us were tested, and after months of waiting for results my three older brothers and I were all confirmed to have it. Four out of four seemed unlucky and knowing that our father had died at the young age of 44 years, we all wondered what the future held.
Soon after this diagnosis, it was discovered that we all had high calcium levels with one or two parathyroids that were over-active and so the decision for surgery had to be made. After reading a lot of medical journals, overseas forums and especially the AMEND forum I saw a common theme of patients needing multiple surgeries to remove parathyroids. This led me to the decision to have all my parathyroids removed and one re-implanted in the arm right from the beginning to avoid having to repeat the same operation down the track. At this time, this type of surgery wasn’t commonplace in New Zealand (NZ) so I really had to campaign in order to convince my doctors this was the right path to take. At the grand old age of 25 this showed me how proactive I would need to be in order to get the right treatment because not only is MEN rare but as NZ has such a small population, every doctor I had seen told me they had only read about MEN1 in their text books and had no experience in treating patients with it. I was concerned that this was the beginning of a constant array of blood tests and hospital visits, however the operation was a complete success and after around 6 months my implant ‘woke up’ and I began what I call my ‘MEN1 holiday’.
Early on my specialist recommended that if I did want to have children it would be wise to start earlier rather than later as it could become complicated. So once my calcium levels had stabilized enough, I became pregnant with our first child. In the later stages of my pregnancy my doctor prescribed extra calcium to keep up with the demands of carrying this baby, and in hindsight I was prescribed too much as 3 weeks after naturally delivering a healthy but large 9½lb baby boy, I passed a kidney stone (made up mostly of calcium) from my kidney to bladder where it became stuck and I needed surgery to remove it. Not the best start to parenthood but somehow we muddled our way through.
Two and half years later we welcomed our 2nd boy who was (thankfully) a much smaller baby and wondered if our two boys had inherited the MEN1 gene.
During my initial diagnosis, my scans showed a 1cm ‘cyst’ on the body of my pancreas which my specialist assured me was most likely to be just a harmless random cyst that many people have without knowing: however, this diagnosis never sat well with me.
Over a period of 6 years it was watched and even though I knew my specialist was getting sick of me asking, every year I asked if there were any other tests that could be done to ascertain what this ‘cyst’ really was. Eventually ultrasound endoscopy became available to me in order to take a biopsy. The biopsy results showed it wasn’t just a ‘cyst’ but was a neuroendocrine tumour and now it had grown to 2.5cm. As I was being seen through the public health system, appointments and further tests were taking months so I opted to use my medical Insurance and have the surgery straight away. I knew that these tumours could be unpredictable once they reach the 2cm mark. Going into surgery I was told that the plan was to operate laparoscopically and take the body and tail of my pancreas and leave most of the head. However, there was a possibility that they would also have to remove my spleen, and potentially open me right up and remove my entire pancreas so it could be a 3 month recovery. I was so happy when I awoke from surgery to find all went to plan and that I had even got to keep my spleen. They took 12cm of my pancreas which was the body and tail leaving behind about 3 cm of the head. The part they removed was dragged out through an incision just above my belly button, and my scars are very small. I recovered in hospital for 5 days but when I left hospital I had a lot of pain just in one side of my chest. After several visits back and forth to hospital over a 2 week period, I eventually went to my local GP who took one look at me had told me that I had a lung infection. After taking the antibiotic he prescribed I quickly bounced back and I felt great!
During the 2 weeks following surgery I couldn’t really eat, and mostly drank nutritional supplements and quickly lost over 10% of my body weight. A year post op and thanks to my husband’s new hobby of baking every weekend I have definitely put it back on. With only a small amount of pancreas it amazes me that my digestion is almost completely normal.
The histology results from my surgery showed that the tumour was a 2.5cm glucagonoma and it hadn’t spread to my liver or any local lymph nodes – it was such a relief.
My two boys now aged 7 and 4½ years have just been tested and result show that neither of them had inherited my MEN1 gene. I have recently had my annual scans and they all came back clear, so I am now two years post op and completely tumour free.
From early on I have felt passionate about the importance of sharing information about MEN. As our stories are rare, knowing what another patient has been through can help others with their decision-making.
Even though at times having MEN1 has been stressful, I do feel so blessed to know that because it has taught me early on what is truly important in life. I have learnt there is only so much I can control and being proactive about my health and encouraging others to manage their own health is something I hope to pass on.
I hope my story can help in some small way with someone else’s journey.
I knew I’d had a funny turn but had no idea about the scale of what had happened.
My symptoms started back in September 2008 (I was 25 at the time). It was whilst spending a day in London I noticed that I was feeling drunk. I knew I was only drinking lemonade but still asked my dad if he’d mixed in some gin, which of course he hadn’t! We went for a meal shortly after that and I soon felt a lot better.
My symptoms became more and more apparent and by May 2009 I was experiencing the following regularly; dizziness, lack of concentration, exhaustion, tingling mouth and lips (particularly after eating), severe memory loss and the need to eat regularly as I was constantly hungry, which resulted in weight gain. It got to the point where I wasn’t waking up in the morning, my Husband would often attempt to wake me but despite my eyes being open, I didn’t respond. Matt realised that I needed something sweet to eat to bring me round gradually; I began struggling with even basic day to day tasks as I felt so exhausted. Exercise became increasingly difficult as I often experienced blurred vision and would feel very unstable on my feet.
By this point I was regularly visiting my Doctor to provide updates. One reoccurring incident in particular was having strange attacks whereby I would experience erratic involuntary limb movements (both arms and legs) which appeared to look like a seizure. This was starting to happen in public places, on one particular occasion in a coffee shop during peak time but thankfully my Husband was with me and I didn’t injure myself. In May 2009, given the similarity of the symptoms, my Doctor advised me there was a possibility I could have epilepsy and I was referred to a Neurologist as soon as possible to look into this further.
On 2nd June 2009 I experienced something like never before. I was following my boss home after work, as I was going to see his new baby boy. En route I remember following him and then all of a sudden my foot went down on the brake, I was trying to control my driving but I couldn’t control my feet. My boss noticed and therefore slowed down. From here on in, the rest is a complete blur, I don’t have any recollection. The next memory I had I was parked on a grass verge with my boss stood next to my car looking very concerned. I had my head down on the passenger seat and I burst into tears. I knew I’d had a funny turn but had no idea about the scale of what had happened. We then left my car on the grass verge and my boss drove me home. My husband opened the door and knew instantly that something had happened. Thankfully, just that day, I had told my boss about the possibility of having epilepsy so he was aware of what I was going through (to a certain extent). He told my husband in private that I had actually driven into the back of his car and he could see that I was unable to control my vehicle. I was in total shock when he told me; I felt like I was losing control but couldn’t understand why.
I saw the Neurologist a few days later and I was sent for an MRI scan and an EEG. I returned to get the results of the tests but they didn’t show anything abnormal, apparently this can be quite normal for people with epilepsy as they often need to catch a seizure during or shortly after it had taken place. Our wedding was pending so it was decided that I’d start some epilepsy medication and monitor how I coped, increasing the tablets weekly until I reached the correct dose. At this stage I voluntarily surrendered my driving licence. I didn’t notice many changes from the medication although I was becoming increasingly tired; I just put this down to the increased medication I was taking. During the meeting the Neurologist did recommend that I also saw an Endocrinologist just to rule anything out from their point of view, which was sparked following the confession of my constant hunger and the need to eat regularly.
One of the most frightening occasions was in August 2009 when Matt and I arrived at my mum’s house; I knew the code for the alarm so she told us to let ourselves in. It took me a while to even get the key in the door and I felt something was wrong. As soon as we got into the house the alarm was going off and I looked at the key pad to enter the alarm code and it was as if I had never seen it before, I had no idea what the number was. I just stood there in a daze whilst Matt tried to engage me in conversation. He called my mum to get the code and I went to lie down as I was exhausted. In hindsight this was the worst thing I could have done as I needed to eat to bring my blood sugar back up. I went into a deep sleep and two hours later my mum and Matt woke me up for tea. I was apparently very vague and had a blank expression. I then had two hypos which lasted about 20 minutes each. This was the first time my mum had seen this, it was very distressing. When the first hypo lasted longer than usual they called an ambulance, as the ambulance staff arrived I had the second hypo so they were able to see firsthand what had been happening. They said that this wasn’t characteristic of an epileptic attack and they checked my blood sugar level which was 1.9. I was given a sugary cup of tea and some bread coated in jam but as a precaution, given how low my blood sugar was I was taken into hospital and kept overnight for further investigations & released the following day.
I visited my doctor again at the start of September 2009 after my time in hospital and it was during this appointment that the first discussion of insulinoma was raised. My doctor mentioned that whilst she was at medical school she had learnt about insulinomas and the symptoms. The Doctor said that she would notify the Neurologist about her thoughts and take it from there.
Matt & I then got married and we had a wonderful day and a wonderful honeymoon! Upon our return my symptoms got increasingly worse and I was now seeing an Endocrinologist. I had a series of fasting blood tests and the lowest it went was 2.6. I was now adamant that I had an insulinoma and so continued on my quest to get a diagnosis. The Endocrinologist was very helpful and now that he knew that I didn’t have any additional stress I had a prolonged fast which lasted about 6 hours, by which time my blood sugar had dropped to 2.4 and after analysis it showed increased C-peptide and insulin levels, by this point an insulinoma was looking increasingly likely. In early January 2010 I had a CT scan which confirmed a 2.6cm lesion on the tail of my pancreas which was confirmed as an insulinoma. I was shocked but also relieved at the diagnosis and thankful that after the journey I had been on I had reached a point whereby it could be dealt with. I was put on Diazoxide in the short term and I then had an endoscopic ultrasound to confirm the location.
During March 2010 I had open surgery to remove the insulinoma (at this point the original site of the insulinoma was ruled out and an insulinoma at the head/neck area of the pancreas was confirmed). Although this was successful, the original site of the insulinoma, on the tail of my pancreas, was in fact another insulinoma and so my symptoms remained. This was then successfully removed at the end of April 2010 as well as my spleen and although I had had two lots of open surgery in close succession, I was relieved to see that my blood sugar levels were slowly returning to a normal level despite a few peaks in my sugar levels as my body readjusted. I had some complications following both lots of surgery which included infections, a collection of fluid where my spleen used to be and a build up of fluid on my left lung. All of these were treated following a few returns to hospital.
I continued to have regular checkups and made slow but steady progress with my recovery. During one of my visits to the Endocrinologist the genetic condition MEN1; Multiple Endocrine Neoplasia Type 1 was discussed and it was suggested that I should be tested as I had had multiple insulinomas. Thankfully, I had read an article on MEN1 so had some background knowledge. I agreed that this was worth investigating and an appointment was made to see the genetics team. It began with genetic counselling which explained all about the condition and my family tree was reviewed to see if there had been any particular health issues that could be connected to MEN1. I had the genetic blood test and had to wait a number of weeks for the results. The results arrived through the post on the morning of New Year’s Eve 2010. It was confirmed that I had the genetic condition MEN1 and there was a booklet enclosed explaining the condition. To say I was shocked was an understatement and it really did take some time for the news to sink in. No longer was I dealing with two insulinomas that had been removed, I now had a lifelong condition to consider. Since then, both my dad and uncle have been diagnosed (my brother was clear).
During 2011 I was found to have one further small insulinoma on the pancreas which was picked up by a scheduled endoscopy (I also had another suspected one however it was too small to take a biopsy at the time). I was upset to hear of further growths however, the one insulinoma was treated with a new treatment which involved injecting the insulinoma with alcohol to try to break it down. This treatment is still in its research stage, however for me it was a success. I had a course of two injections via an endoscopy. The side effects afterwards were uncomfortable however, the fact that I didn’t need open surgery again was a big relief and it meant recovery time was a matter of days.
I have since had a further Endoscopy in December 2012 whereby another small Insulinoma was found & treated the same way with an injection. At the start of July 2013 I had an MRI scan with contrast which highlighted a potential problem area at the head of the Pancreas by the bile duct which was thought to be another Insulinoma. I then had an endoscopy & a biopsy was taken. I did unfortunately have pancreatitis following this procedure however the results showed nothing to report at this stage. A further scan will be completed in December 2013. I have a shadow on my pituitary gland and have annual checkups on this via a scan. I just keep my eye on things in the meantime.
I have a fantastic team who look after me at the hospital and I know that if I ever have any problems I can get in touch with them without hesitation. I now have an annual check up when my bloods are checked along with an endoscopic ultrasound to view my pancreas as this seems to be my troublesome area. My Consultant wants to ensure that I hold onto my pancreas for as long as possible by trying to deal with any new growths as quickly as possible. There is no guarantee that I will not continue to get insulinomas however, regular checks keep me positive.
Life has its ups and downs living with MEN1, it’s important to try not to worry about what may happen and instead enjoy life to the full, dealing with things as and when they arise. It’s amazing the difference steady blood sugar levels have on you and I’m just thankful to my fantastic Husband, family and friends who continually support me along this journey, thank you to each and every one of you.
MEN2a Patient Stories
“Do you believe you can fly?” asked the community psychiatrist.
If I didn’t have my head over a bucket puking up the nothing I had eaten for weeks, I would have made HER fly – right out the window – for asking such a stupid question. Wearily I shook my head. Couldn’t she see that I was ILL?
For weeks now I had been retching and vomiting, unable to keep even water down. I had been suffering episodes of severe ‘migraine attacks’, palpitations and breathlessness off and on for 3 years since the birth of my first child, but now they were ever present and significantly worse. My family doctor was insistent, despite my protests, that the attacks were due to postnatal depression and had prescribed a cocktail of drugs to no avail. It seemed the antidepressants and sleeping medications were making things worse and I was now desperate.
“Do you want to harm yourself?” the psychiatrist persisted.
A sensible question at last! All I could manage was to nod pathetically into my bucket. Suddenly, urgent phone calls were made: to my husband to check if I had private health insurance; to my family doctor; to a psychiatric hospital.
“They can take you tonight, it’s all arranged” she said. I could not have cared less anymore.
My husband, Alan and my mother, Janet, carried me almost unconscious into the psychiatric hospital. This quiet unassuming place was to be my saviour. After 3 years of pain, it was now a matter of days before they had diagnosed a large adrenal tumour (NOT post-natal depression). The tumour (a phaeochromocytoma) had been causing my blood pressure to reach immeasurable heights and had put me at serious risk of stroke and heart failure. In fact, the surgeon who finally removed it hadn’t seen anything quite like it for size and activity (probably because he doesn’t perform post-mortems).
Once again, things began to move fast. Within the space of 3 years I had been genetically diagnosed with multiple endocrine neoplasia type 2a (MEN2a), along with my mother and my then 2 ½ year old son; I had both tumour-containing adrenal glands removed along with my cancerous thyroid, as did my mother; and my son had a prophylactic removal of his thyroid to avoid developing thyroid cancer.
We do relatively well now, on a different cocktail of drugs, and are regularly monitored for optimum doses and disease recurrence (which resulted in the replacement of one of my shoulders in 2007 due to a thyroid cancer bone metastasis). My son is closely monitored for signs of phaeochromocytomas.
As you might expect, primary healthcare is one area of concern for me for patients with rare diseases like MEN; particularly regarding diagnosis. The specialist UK NHS hospital team were fantastic throughout, confirming the need for rare diseases like MEN to be managed in an expert multidisciplinary setting.
I had so very nearly died and this would have left 2 very young children motherless. The thought of what could have happened still haunts me today.
Do you know why you have a thyroid? Do you know what it does? Do you really need it? Where is it in your body? I did not even know the answers to most of these questions either. I just took my thyroid for granted, until I had to let go.
Where shall I begin this story of mine? From the beginning I suppose. Well, my name is Ashley, born on the hot summer night of August 30th. I was pretty normal kid growing up, despite my mom telling me I was adopted or switched at birth. At one point I was told I was lactose intolerant and had to endure Lactaid pills with every bowl of ice cream with my siblings. But I was overall a compassionate, naive, jovial, and easily distracted, kid (according to my mother).
Fast forward to 2011 when I was still 19. It was beginning of the year, while I was with my grandmother at the temple. It was cold and we were by grandpa’s brand new van. While I was fixing my veil, my hand ran across the protruding lump on the left side of my neck. I remembered seeing it many times while getting dressed in the morning, but never thought much of it. I always thought my grandma was a wise woman, knowledgeable in experience, so I showed it to her and asked if she knew what it was. She ran her aged fingers over it softly and told me, “Show your mom, she’s the nurse.” My grandma knows me all too well and how forgetful I am which is why, not even 5 minutes after I got home from the temple, she called my mom and told her about it. Mom inspected my neck and made an appointment with the doctor. I did not think that day would be as memorable as it is to me now, besides the fact that I got to drive grandpa’s van.
At the appointment, my doctor felt the lump and around it, then concluded that it was in my thyroid and referred me to an endocrinologist. I went home and opened up my computer and textbooks, looking up the thyroid. All I knew was that it released hormones in the body, but that was it. I looked up lumps, goiters, and everything that I could.
When I saw my endocrinologist, Dr. Hetnal, she ordered some blood tests. Between then and now, I believe I’ve given enough blood to save a few lives, but I know I did it to save my own. My hormone levels were fine, but antigens were a little high, so we figured it was an autoimmune disease. She then ordered a biopsy, which came back a little scary and unclear. The entire pathology team could not agree whether it was malignant or benign, or if it was a tumor from the liver. She had me give another vial of blood and said to come back in a week. But instead, 2 days later, on May 26, her assistant called and asked, “How fast can get here today?”
I met my mom in the lobby and we went to the office. Dr. Hetnal was giving up her lunch hour to see me, so that alone scared me. She explained the last test was a calcitonin test. Calcitonin is released from the thyroid to help regulate calcium in the body. The more calcium in the body, the more calcitonin released to even it out, and vice versa. The normal range is 5 or less. I had 3,804. I was officially diagnosed with medullary thyroid cancer.
I went home with a print out from the Physician’s Desk Reference on MTC. It was a tumor in the C-cells that release calcitonin, hence the high numbers and assumption of lactose intolerance. I also went home with a tired and sick body from the giant bottle of barium I had to drink for the quick CT scan the radiologists were kind enough to perform. I woke up the next day with, not an upset stomach, but extremely livid one, and looked up MTC. The results were scary, telling me I was going to die in 3 months, or I will never be happy again, or that it will spread throughout my body. I shut down my computer then and there, and decided I had enough for the day.
A few weeks later, I got a call from Dr. Gosnell, one of the endocrinologists and surgeons at UCSF. I went to the consultation, where I learned she does several thyroidectomies every week. Her nurse, after hearing my internet scare, made me promise I would not check any other websites except ThyCa or AMEND. THYCA, I learned, was an organization for thyroid cancer patients and survivors. To this day, I’m so happy I’m a part of them. AMEND was an organization for patients with hereditary endocrine cancer. I learned I have MEN2A, a mutation which is one of the causes of endocrine cancers. Joining them too reminds me that I’m not alone.
Anyways, Dr. Gosnell scheduled my surgery for 6:30am on Tuesday, July 12th. The weekend before surgery, my sister stayed at grandma’s while my parents and I stayed at a hotel by the hospital and explored San Francisco. Monday night, I went to a Pre-Surgery Preparation class to ease my nerves (it failed), then spent a sleepless night in anticipation. The next morning, at 4am, I took my shower and got ready for surgery. I will never forget after my surgeon came to see me before surgery to discuss what was happening, and as she left, my dad shook her hand, tears in his eyes, and whispered, “take care of my baby please.”
Surgery was successful: a total thyroidectomy with central lymph node dissection. I went home the next day, and it took a few weeks to a month for my mom to finally tell some close family (grandma and her sister) what really happened. It was an emotional ride from there to now, mainly due to my body depending on pills to function. I have my occasional rants and my roller coasters too, but in the end I know I’ve become a stronger person. I won’t let my cancer define me, but it has become a big part of me. So that is why I wear my scar with pride, my THYCA colors in awareness, and my butterfly necklace in signification of my lost friend, my thyroid, the butterfly gland.
[Ashley’s story has also been used by ThyCa.org.]
MEN2b Patient Stories
Well, where do you start with something you’ve had for over two thirds of your life?
I am now 32 and was diagnosed with MEN2b when I was 10. It was Christmas time and we were visiting my grandparents in Adelaide (South Australia). My Grandma who was a nurse by training noticed that there was a lump at the base of my neck and thought that Mum and Dad should get this checked out. When we returned home to Canberra, it all became a bit of a whirlwind. After seeing an endocrine specialist, the diagnoses came incredibly fast and, within two weeks, we were driving up to Sydney to a big hospital there to have my thyroid removed as it was cancerous. I still remember the look on my parents faces as the doctor told them about MEN2b. I wasn’t scared but I knew that it was serious from their expressions. I just remember saying that I didn’t want to be different from the other kids at school and asking whether I would need to tell people about the medication I’d have to take afterwards. It’s funny the things kids worry about but they also take things in their stride and I sometimes think the whole MEN journey has perhaps been rougher on my parents, and now also on my husband, than it has been on me. It’s a day-to-day thing for me, just a case of getting on with life while trying to make sure that my medical condition is managed and gets in the way as little as possible. They imagine the worst and I see the worry that it causes them.
My family were all tested to see whether or not my condition was hereditary. It turned out that it was not and that I had a spontaneous gene mutation while the rest of the family were clear. When my Grandma heard about all of this, she said that, if it had to be that I had this condition then she was relieved at least to hear that my condition was so rare and also that it was unlikely to affect anyone else in the family. She wisely pointed out that, if you have to have an illness, you get far better attention and care from the medical world if you have something rare which they don’t see 10 times a day
After my thyroid was removed there was a 2 year lull. My calcitonin levels were stable and it looked like they had removed all of the cancerous cells. But then the count started to rise very slowly – enough to know there must have been a couple of renegade thyroid cells hanging around somewhere but not big enough to be found. And so life went on much as it had before the operation but just with a yearly bunch of tests and a visit to the local endocrine unit. I’ll always feel eternally grateful to Fred Lomas (endocrinologist) and Janet (endocrine nurse) for their kindness and ability to make my yearly visits to them feel more like a visit to aunts and uncles than one to a medical institution.
Don’t get me wrong, having the condition had its ups and down at this time. I remember my first 24 hr catecholamine urine test. I was so upset at having to do this that I refused to drink any liquids and managed to wee only half a cup over the whole 24 hours to my mother’s despair, and the ensuing tantrum I threw when told that I had to do the test again.
I’ve always had lumps on the inside of my mouth and big lips (the classic MEN2b smile), but then that was just me, the way I looked. I was teased of course for it at school but then kids can be cruel and always find reasons to tease, and I’m sure that I was no kinder to my class mates than they were to me. Now that I am an adult and my face has grown proportionally to my mouth, I don’t mind my lips being how they are and it’s true to say some women pay a lot of money for lips like mine.
I did however by the time I was 18 have surgery to remove many of the larger nodules in my mouth since they had grown so big that I would bite them off accidentally, or they would catch on my teeth braces which got quite painful.
At 19 I had just finished high school and was busy juggling part-time jobs, saving up to go travelling in Europe during my gap year. Before I headed off, I went for the routine tests but there was a hitch: the doctors finally located a bunch of the renegade thyroid cells in the lymph-nodes on the left hand side of my neck and surgery was called for. I remember feeling incredibly inconvenienced but also relieved that, if these were the only cancerous cells left and they were removed, this could be the end of the cancer. I booked my ticket to go overseas and worked up until the day before the surgery. I think I underestimated how incapacitating a ‘T-section’ (removal of lymph glands) could be. For years after the surgery, hailed a success by the surgeon, my neck was wracked with pain as the nerve-ends re-grew, making me feel as if a thousand ants were biting me up and down my neck. However, I felt determined to get away and, six weeks after the operation, I headed overseas. I had to wheel and drag my backpack as my shoulder could not bear any weight.
After 8 months of backpacking and working in the UK and Europe, I returned home to stay with my parents, save up again, and undergo another set of tests. Sadly, although the surgery had brought down my test readings, it hadn’t solved my problem entirely, and we were back on the track of those renegade cells. At this point I headed off from home in Canberra to Sydney to pursue my adult life and my dreams of becoming a costume designer. I transferred my medical care to the Royal North Shore Hospital under the care of Dr Bruce Robinson, Australia’s leading authority in MEN and a truly excellent doctor. I spent the next four years in Sydney working in the film, television and theatre world as a costume maker, with bouts of travel between contracts. Bruce regularly monitored my condition and was always willing to be flexible with appointments to minimise their interference with my work. A couple of years into my time in Sydney, my test readings suddenly started to rise again which was quite alarming as I’ve always felt quite blessed to have what I call the laziest cancer ever. It appeared that, instead of hanging around in my neck area, some of the cancer cells had jumped to my liver and suddenly decided to grow there like crazy. So it was another stint in hospital, this time to remove half my liver. Livers are amazing organs as they are almost the only organ of the body which grows back. Within six months, my liver had restored itself to full size and function, minus any cancer.
After this operation though, something had happened to my digestion. I felt continuously full and bloated, with waves of nausea and constipation. For a long time I hoped that this state of affairs would get better with time and that the symptoms were perhaps part of recovering from liver surgery. I restricted what I ate and ended up eating almost entirely tomato soup, tabouleh and porridge. It’s funny the way humans can become accustomed to things and simply accept new routines as normal. About a year after the operation my Mum talked some sense in to me and finally persuaded me that it wasn’t acceptable to live on a diet of puréed food. When I got back, I spoke with Bruce about my symptoms and that these were not getting any better. After visits to dieticians and various tests, it turned out that I was suffering from acid reflux and I was put on drugs to regulate the acid build-up in my stomach. It was the most amazing thing. Suddenly I could eat again and not feel sick all the time. At the time, I blamed this tummy trouble entirely on the operation. In recent years when my tummy complaint rears it ugly head again as it does from time to time, I learn more about MEN. It seems likely that the nodules in my mouth extend throughout the digestive tract as well and that they are probably the cause of these symptoms. Nowadays, indigestion is no longer too much of an issue so long as I generally stay away from highly processed foods, drink loads of water and take my medication daily.
Over the years different things have popped up. Irritatingly, my back goes out regularly,
I get massive blisters from all new shoes, funny little growths on my eyelids and so on. I thought all of these things were just me but, the more I read up about MEN2b, the more I come to realise that these symptoms are simply other expressions of the condition. In the end, the condition has not stopped me from living life as I want to so much as forced me from time to time to take a different route.
After 4 years of working crazy hours in the costume business, I decided that, amazing as this had been, the time had come to move on. I resolved to move to Melbourne and to enrol there in a BA in Photography. On moving I had to find myself a new endocrinologist. I will not mention the name of the first endocrinologist I found but I say only that, after many years of brilliant medical care and advice, I found myself with a person who managed to misread a scan and inform me that my liver was riddled with a new cancer. As I started to get my head around this news he then informed that he had got it all wrong and that what he had thought was cancer was actually only scar tissue. Oops, silly him!
Needless to say, I moved endocrinologist and ended up with the excellent Warwick Inder. For the next 3 years, life just plodded along with 6 month to yearly check-ups. No signs of movement on the cancer front except for a couple of small lymph nodes on the right hand side of my neck which we decided to leave until they had become bigger before thinking about surgery as my test assays had stayed pretty stable. As Warwick said, why have invasive surgery before it’s necessary. At the end of the three year degree, I married my amazing husband Martin, a Swede and fellow student on the photography course. Martin at this point wanted some time closer to his family in Sweden and, since my Swedish was not yet up to my working there, we compromised on London. This allowed us to move closer to
Sweden and also offered a lot more scope for our work as photographers.
It’s been a really amazing leg of the journey my time in London. I first visited the UK when I was 7 and then again when I was backpacking at 19. This time I’ve ended up staying for over five years. It’s a country I’ve always felt relatively at home in, maybe partly because my father was raised here. There are many aspects of the culture which are so similar to Australia’s but others which are very different: often in the most subtle of ways. As an Australian citizen we have reciprocal arrangements for health care with the UK and I feel very grateful that this is the case as this has given me the opportunity to be able to live here. The work here has been amazing and I have made friends who, I hope, will last for life. With regard to medical care though, it has given me endless frustration, with lost files, doctors not introducing themselves, random letters that inform me of unexplained appointments, missing consultants and inexperienced replacement Registrars. I have had an operation scheduled and then cancelled without anyone informing me and letters in the mail which told me of quite distressing diagnoses without giving any real explanation but with weeks to wait before my next appointment.
Perhaps I have just been very unlucky, but it seems from my perspective that it is a system that has forgotten that we are people and not simply case studies. Please, don’t misunderstand me. I’ve met along the way some brilliant individuals working in the NHS. But on the whole I’ve found the experience distressing. I’m used to working with the medical team on my case and not, as I feel here, finding myself constantly at odds with them. I have to say though that the surgeons I’ve had here have been really excellent. I’ve had two operations in the UK, one to remove lymph nodes from the left hand side of my neck. Within 6 months my left hand shoulder was already working better than my right hand shoulder does ten years later. I’ve also had my adrenal glad on the left hand side removed with key-hole surgery. The recovery was extraordinary fast. Within a week of surgery I was out of the hospital and out of the house looking for a new flat, and within less than a month I was back at work.
During my time in England I also feel very lucky that I have come into contact with AMEND. The advice, support and boundless energy of Jo and Janet has been truly inspiring. Before last year I’d never met anyone else with MEN. It’s an amazing experience to see the MEN2b condition, my condition, in other people’s faces and to hear their, sometimes so similar, experiences. It is a bit like meeting relatives for the first time.
So what of the future? At this point it looks like there’s a pheo in my second adrenal gland. That will need to be removed later in the year. And then in the not so distant future my husband and I will start to ask the question of whether we are comfortable passing this on to another generation.
I feel grateful that I’ve lived in a time and in countries where MEN is part of my life but it has never defined me. It has made me value the things in life that I do have. I have been able to first and foremost live my life.