By Alyce Collins
THIS WOMAN was horrified when she found out the reason her chin and nose WOULDN’T STOP GROWING was down to a BRAIN TUMOUR.
Rebecca Churan (29) from Sudbury, Ontario, Canada, who works with children in deprived areas, had noticed that her self-esteem was at its lowest earlier this year and she spent most of her birthday celebrations in tears to her friends as she tried to explain to them that she believed her face was changing and becoming ugly, but she didn’t know why.
Over the years, Rebecca saw more than 10 doctors to address the signs she was noticing, including weight gain despite hardly eating, fatigue, rapid growth in her feet and she was adamant that her face was changing shape and growing too. Various doctors misdiagnosed Rebecca with borderline diabetes, depression and polycystic ovary syndrome (PCOS).
By the end of March 2019, one of the doctors she saw finally issued Rebecca with an IGF-1 blood test which measures the quantity of insulin-like growth factor in the body. The typical measurement of the growth hormone should be between 97-297, depending on age, however Rebecca’s measurement was an astonishing 1015. The blood test confirmed that Rebecca had a pituitary tumour which was releasing the growth hormone.
There was very little information for Rebecca surrounding pituitary tumours, so she researched it and was horrified to find photos of giants and disfigured people online. Needing to have the tumour removed through her nose was terrifying for Rebecca, but less so than avoiding surgery and continually growing and becoming disfigured.
Rebecca had questioned her unexplained growth for a few years, particularly after her feet grew by a size and a half to a size 10, and she was sure her chin and nose were growing, especially after looking back at old photos of herself and seeing that her face looked smaller.
The tumour was removed on April 6, but before going into surgery Rebecca traced the outline of her hands to see if they changed size. Since the surgery, Rebecca’s hands have shrunk by an inch, her feet have gone down a size and a half, she has lost 2st 5lb in weight and her nose and chin are smaller.
“I went out for my birthday with a group of friends but during the evening I was unable to stay awake and needed multiple naps before going out with the girls. They all tried to cheer me up, but I was crying uncontrollably, and I knew something was wrong,” said Rebecca.
“My best friend, Anisa, held my hand while we went from pub to pub and I remember her asking me where my confidence had gone since we met at university. Thankfully she was there for me because I would have never made it through that night without her cheering me on.
“The next few days were awful, I slept most of the day and still required more than ten hours of sleep at night. I went to see a doctor for an opinion in the hopes of any sort of answer.
“I have seen more than ten doctors over the years who would just address my symptoms. I have been misdiagnosed with borderline diabetes, generalised anxiety disorder, depression and PCOS. I told this doctor that my face was changing, and I was getting uglier, and that I didn’t understand why I was gaining weight since I was barely eating.
“She issued me a blood test and then called me back in and told me I had a pituitary tumour based on the results of that test. Normal range for the growth hormone is between 97 and 297, and I was at a whopping 1015 level – which is high even for a teenager with gigantism.
“There really is no information other than extreme cases online. There’s barely any awareness or tools to help people recognise the signs, so many cases are diagnosed as hormonal disorders. I saw the scariest photos of Andre the giant and others who had not been treated early on during the process. I was mortified, scared, and hopeless.
“The tumour caused the extreme tiredness, my anxiety, weight gain, the growth of my hands, feet, nose and chin. I had this tumour for over 15 years based on the photos I’ve looked back over, but I just thought it was the way I was ageing at the time.
“I questioned my growth a few years ago when my feet shot up half a size, but I had gained weight too and I thought it must have been caused by water retention or my borderline diabetes diagnosis.
“I went to Alberta and an endocrinologist, Doctor Nisha Haroon, got me in a for a CT scan that same day and that was when we saw my tumour.
“I was petrified because I had a tumour in my brain which they needed to remove, but if I didn’t have surgery then I would continue to become disfigured! Surgery was April 6 by Doctor Cusimano and the tumour was taken out through my nasal cavity.”
Since the surgery, Rebecca has noticed that many of her features have downsized, much to her relief as she had become so upset by her changing appearance which she feared made her ugly.
Rebecca hopes to encourage others with an unexplainable problem to stay positive and push for answers. She was misdiagnosed for many years and was even led to believe she was developing diabetes, but a simple blood test was all it took to uncover the truth.
“Recovery from surgery was way better than I could have asked for. The team I had in the hospital understood me, they didn’t think my shrinking was odd at all and they took very good care of me,” she said.
“After having the tumour removed, my nose and chin have shrunk, while my feet are down a size and a half. I’ve also lost two stone and five pounds effortlessly. I lost almost an inch off the tops of my fingers and the width of each finger has gone down by about half a centimetre.
“People aren’t aware of pituitary tumours, which is crazy to me because the pituitary gland is the master controller of all your glands and endocrine system.
“Being rare is a very difficult thing, especially when many doctors don’t know how to treat you. You must stay positive and find hope in any way you can while fighting. I want people to understand that a simple blood test can often diagnose a pituitary tumour.
“Don’t just accept any diagnosis without digging deeper and asking if something else could be causing it. Never judge a book by its cover because those covers can be redrawn, just like more pages can be added to a story.”
To see more, visit www.instagram.com/beccachuran