Hi, I’m Michelle and this is my MEN 1 journey.
I remember as a young child always having issues with my stomach. I was stick thin, but I had this protruding tummy. I never really liked eating all that much because sometimes it made me feel sick. It wasn’t until adulthood that I began to notice that certain foods, would result in massive tummy aches, bloating and rushes to the nearest toilet!
When I was 26, I was diagnosed with Wolff Parkinson White Syndrome.
In 2010, after years of stomach issues, I made the decision to eliminate all gluten from my diet as I noticed that when I was eating food with gluten, I felt so sick.
I have had no stomach issues since. During routine bloods tests at this time, it was noted that my body wasn’t storing B12 and this was put down to me having been a vegetarian since I was 12. So they started me on a 3 monthly injection of B12, which I still have today.
In December 2012, my doctor decided to do a full round of blood tests, including a calcium check. Tests showed I had very high calcium levels and I was booked in to see an Endocrinologist .
Further tests from the Endocrinologist saw me being referred to a surgeon to discuss surgery on a parathyroid gland that came up showing a small adenoma. It was the first time I had ever heard of Hyperparathyroidism. Around this time I also received a report noting that I had Osteoporosis in my spine and in my left hip. A result of years of undiagnosed Coeliac disease.
In March 2013 my surgeon removed two parathyroid adenomas and post op blood tests still showed a slight elevation of calcium but they have decided to monitor this. After this surgery I had lost so much weight, weighing in at 43 kgs so it took months to get my body back to full strength.
In June that same year it was decided by my G.P. to have an Endoscopy and Colonoscopy .
I was told I had a Pancreatic Cyst on the tail of my pancreas. This was biopsied and the Gastroenterologist initially said it was a Pancreatic Serous Cystadenoma. The morning after the biopsy I received a call from my Gastroenterologist saying he had made an error and the tumour was in fact a neuroendocrine tumour so I was sent off for a Ga -Dotatate PET/SC.
I was found to have a 2cm non-functioning tumour in the tail of my pancreas, a tiny one in the body and another tiny one in the head of the pancreas. This has been monitored every year for the past 10 years.
Going over my medical history again my G.P. noted that my mother also had parathyroids removed some 10 years earlier and had a pituitary adenoma, so I was sent off to the Geneticist for further tests.
In July 2013, I was diagnosed with Multiple Endocrine Neoplasia 1. Never heard of it! I googled everything I could on it and it all sounded so grim. Apart from my food issues I never had any other symptoms.
Up until now no one in my family had even heard of it let alone someone being diagnosed with it.
My mother never told me she had MEN1. I only found this out after her death in 2023, some 10 years after I was diagnosed.
At the time of diagnosis, it took me months and months to find the Unicorn Foundation as it was called then. No Dr or nurse at the time told me about this organisation. I found the NZ and American support network initially and someone there sent me over to the Australian site. Up until then I thought I had no support for MEN1 at all and no one to help educate me on this disease.
Although feeling very disheartened at my future after diagnosis, something changed in the way I approached it as time has gone on.
I decided that I was not going to be defined by this condition. It is a small part of me, I am NOT part of it.
So I look at it like this, everyone has something not quite right going on inside their bodies. We Unicorns are lucky that we just happen to know what ours is. So we can be continuously checked every 6 months or yearly, and be on top of anything that may arise – some people are not so lucky.
What I choose to do is live my life, enjoy the moment I am in and find something to love every day.
MEN1 changed my life in many ways for the better – in that now I look after myself. I am grateful for small things and very grateful to have met a great team of medical specialists who are wonderfully supportive and very grateful to have found NeuroEndocrine Cancer Australia.
