A courageous young woman's journey with a rare Salivary Gland Cancer.
In early January 2015, Mackenzie Petie from Brisbane was drinking a cup of tea and felt something strange on the roof of her mouth. It looked like an ulcer and while it didn’t really really hurt it was big enough to cause some worry. She was only 16.
She went to her GP who was not sure what they were dealing with, so they brought in a colleague to examine Mackenzie as well. The colleague was also unsure. They thought it was most likely a bacterial infection of some sort and gave her some mouthwash and she was sent on her way. Mackenzie was just starting year twelve, so was not too worried about it. She had other things to concentrate on, it being her last year of school.
In March she went to her dentist for her wisdom teeth. While being examined she mentioned the weird lump on the roof of her mouth and her dentist suggested she get it checked out further. She made an appointment with an Oral Pathologist in Brisbane who gave her a CT scan and took a fluid sample, but the results were inconclusive.
By now it was towards the end of May, Mackenzie was working hard at her final year of school and planning to go overseas at the end of it. She had lined up a job in England and everything was booked. But the lump was still there.
“It just felt weird, something was off. I just felt like it needed to go”.
She went back to the Oral Pathologist in September and this time she was referred to Oral Surgeon, Dr Alistair Reid. The earliest appointment was four weeks away but by now it was 10 months since she had first noticed the lump. Within 10 mins of seeing Mackenzie, Dr Reid knew it was a tumour.
The initial CT scan aided his diagnosis, and once the biopsy result came back, it was confirmed. Mackenzie had a Low Grade Mucoepidermoid Carcinoma of the Hard Palate - a rare salivary gland cancer.
Mackenzie was then referred to Dr Martin Batstone, an Oral and Maxillofacial Surgeon at the Royal Hospital in Brisbane and her cancer journey began. She underwent an MRI to gain a better idea of the size and severity of the tumour, which, although slow growing, had been there for some time. She sat down with the head and neck cancer multidisciplinary team to form the best plan of action.
“I was told there would be a five year impact on my life, which is a hard thing for a 17 year old to hear. Honestly I was more worried about school, and missing my overseas trip!“
She jumped on the internet to find out what to expect, and found an international Facebook group for people also faced with a similar procedure, a maxillectomy. Being relatively rare, Mackenzie found it hard to connect with others, especially people her age.
“Friends did not realise how much it was affecting me."
With all this going on Mackenzie still finished her school year, and on 21 November, the day after graduation, she was booked in for surgery. Mackenzie underwent a partial maxillectomy. The right side of her upper palate was removed as well as four molars to ensure the best possible margins around the cancer. She even chose to get her wisdom teeth removed at the same time.
“I kind of regret that now, but I remember saying to my parents if I’m going to be in pain, I may as well take it all out!” said Mackenzie.
It looked like the cancer had spread to the bone, but at the beginning of the operation her surgeons said they would take a biopsy to make sure it had not broken through.
“The result would reveal whether they would need to go back in, and if I would lose feeling to one side of my face. It was a hard conversation to have and I was so relieved afterwards to be told the cancer hadn’t spread”.
With the operation done, Mackenzie was now faced with recovery and getting used to having a hole where the roof of her mouth was.
“I could use my tongue to tickle my nostrils, that was not a good feeling.”
She had to wear an obturator plate to fill the large gap left in her mouth to avoid infection or any further complications. Eventually she had a second operation to temporarily wire the plate in place to stop it falling out. Her Prosthodontist was Dr Stephen Robinson who rebuilt her missing teeth, and even colour matched her gums. It was hard to pronounce some words, and she had difficulty eating so was on a soft food diet.
“Eating was really frustrating and it was hard to motivate myself. It took 45 minutes to eat a small tub of mashed potatoes and gravy.”
She often had too much saliva in her mouth, and sometimes even blood. It was a difficult time, but she found the online group helped answer any questions she had. Amazingly, seven weeks after her operation, she ended up taking that gap year in England, and she was put in touch with a medical team in the UK to help continue her recovery.
“The plate was fantastic for a temporary fix, but long term I did not want to be stuck with it. The plan was always to come back to Australia and have a reconstruction.”
Ten days after getting home, Mackenzie had an eight hour surgery, performed again by Dr. Batstone. She opted to have bone from her hip, and muscle and veins taken from her internal oblique muscle to reconstruct her palate, aware that she might have complications in her hip in the future. She has been lucky so far. In April 2017, Mackenzie had implants put in her mouth and by September she underwent a final skin graft to cover her gum which was then colour matched. Finally in 2018, she had some new teeth attached to the implants. She now has a small scar under her chin, and a 22cm one on her hip.
“It feels like nothing has changed now, like there is not much difference from what I used to feel like before I had cancer. I feel very lucky as I have heard of others who have had a very similar operation and are now in chronic pain.”
Mackenzie had her five year MRI last March, and still sees her prosthodontist and surgeon annually.
It took a big toll on Mackenzie and her family at the beginning, but the support received by her parents and older sister has definitely made them stronger together. After the first operation she would not leave the house without a hat on, and could not bring herself to look in a mirror.
The entire experience has without a doubt changed her, but also set her on a new course for the future.
As a young person left to deal with not being able to open their jaw at first or form words correctly, it was tough. She did not receive any psychological support during that time, and while in England she became interested in Psychology, and later Psycho-oncology.
“There was shock and a lot of tears. Never having any psychological support was something I was missing, and now it is something I am studying. I always knew I wanted to help people, I originally wanted to be a nurse but in the last few years I’ve become interested in Psycho-oncology. It’s a field where there is not enough research or even people concentrating on it. On reflection I do wish I had more psychological support during my experience, but this has motivated me.”
Mackenzie is now four years into a Bachelor of Science and Arts studying Psychology and Criminology at the University of Queensland with plans to do a Masters and PhD. Without a doubt she will go on to helping others going through a similar experience. Although she wishes she had been diagnosed earlier, she still realises how lucky she is and how much she owes to her medical team.
“I decided to share my story to help raise awareness of these types of cancers and to encourage people to be aware of the signs and symptoms of head and neck cancer and get checked if they’re concerned about something.”
“I would not be the person I am today without this happening, it is hard to imagine how life would have been different or how I would have developed differently without this happening.”
Thanks for sharing your story Mackenzie, we can’t wait to see what you do next.
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