Katie Stephenson – Parotid Gland Cancer Patient (Mammary Analogue Secretory Carcinoma)
I live in Chorley, Lancashire and I work in Public Relations for the NHS. I remember the moment I found my first tumour like it was yesterday. It was July 2011 and I was having a lovely lunch in a beer garden in Lancaster (fish and chips if you were wondering!) when I felt a lump on my jaw. Always the hypochondriac, I dramatically said to my friend, "feel this lump, it must be a tumour!"
The lump didn’t go away and after weeks of poking and prodding by various doctors and a few courses of antibiotics in case it was a cyst, I had an ultrasound. I’d done a lot of research by this point and pretty much knew every eventual outcome so when he told me it was a solid mass I was as prepared as I could be to hear that news. After a fine needle aspiration, which basically meant a doctor stuck a tiny needle into the lump and drew some fluid from it to test, the results were inconclusive so I was delivered the news that I’d need a major operation to the side of my face to remove the lump (most likely a tumour) and half of my parotid gland.
The parotid is part of a family of three salivary glands and it sits just below your ear. Again, I’d done my research and found that salivary gland cancer is rare with approximately 550 cases being diagnosed each year, most commonly in people over 50. The exact cause of this cancer is unknown and in most cases, tumours in salivary glands are benign.
With any surgery there were also side effects and with mine these included facial paralysis, numbness and problems with the salivary function. Although these were worrying to me, I was only 26 at the time so my main concern was about the gigantic scar I’d have running down my face.
I had my surgery done in Preston and I cried the first time I looked in a mirror. I’m not an overly vain person (my friends might correct me on this!) but I had 40 stitches down the side of my ear and down my neck, a huge dent in my face where part of the gland had been removed and little to no movement in half of my lip.
|Katie post surgery|
Despite this I waited patiently for the results of the tests…..I waited and I waited….20 weeks later I was delivered the news that it was a malignant tumour however it had been removed with clear margins which meant that they believed they had got it all. The reason for the delay was that it was a newly described tumour and not many labs had seen one before. Eventually I was given its definitive name; Mammary Analogue Secretory Carcinoma.
Almost a year to the day of finding the original lump, I found, and had removed a second tumour. Luckily this one was a lot closer to the surface and the surgery was nowhere near as invasive. At the same time as this surgery I received Botox injections to my face as I’d developed a relatively rare side effect of the surgery known as Frey’s Syndrome. This is basically a mutation of your salivary glands so instead of your mouth watering on the inside, I was getting a moist cheek – not a good look when you’re stood in front of a tasty buffet and your cheek starts watering!
Following the removal of the second tumour I was referred to The Christie to discuss my treatment options. As it was a relatively recently named tumour there was some uncertainty as to what the treatment should be. At the initial consultation we discussed the different options available to me; further surgery to remove the rest of the gland or a course of radiotherapy, both of which carried further risks and complications. In the end we decided that I would be a “watch and wait” patient, meaning I’d have scans and check-ups instead of treatment.
This course of action didn’t initially sit well with me. I’d really struggled emotionally during the wait for my initial results and I didn’t think I had the strength and resilience to do it again, but with the support of my consultant we decided to go ahead. I now have bi-annual MRIs to my head and neck and I visit The Christie four times a year for check-ups. I won’t lie, sometimes it’s really hard to just sit back and wait. I check the area every day and I’m just waiting for the time I feel another lump. I did have a scare last year but thankfully it was just scar tissue from my original surgery on the move.
Throughout my experience I decided to document this by blogging (www.apainintheparotid.wordpress.com). I struggled to find a lot of UK based information about the condition so thought I’d share my experiences with anyone else who was going through this too. I post pictures, tips and updates and I find writing about my day, hospital appointments, scar progress (and the occasional whinge) extremely therapeutic.
I’ve also really valued the emotional support from everyone around me, especially the team at The Christie – shout out to Professor Slevin! Whilst I might not be having visible treatment, people should never underestimate the emotional impact a cancer diagnosis can have and the compassion and care from the team at The Christie has been second to none.
After my surgery I was left scarred, unable to smile on one side of my face and feeling very self-conscious. I became extremely anxious and pretty much ate my feelings, putting on over six stone in weight in the process. Over the last 18 months I have really seen an improvement emotionally, and finally managed to get some focus back in my life. I even went back to university to study for a postgraduate qualification, something I could not have imagined doing three years ago.
If I was to give one piece of advice to anyone reading this who is going through something similar, it would be to never underestimate the power of emotional support. I know all too well how easy it is to retreat and want to deal with it on your own, but please just talk to someone. I’m a very independent person and leaning on others for support didn’t come easily to me but I learnt that this doesn’t make you any less strong or unable to cope and, without that support, I wouldn’t be the person I am today. I have a much brighter outlook on life, my confidence is coming back and I’ve started to shift some of the weight that I’d put on. I’m still a way from eventual discharge (pending no new lumps – fingers crossed!) and visiting The Christie has just become part of my life routine, but without the fantastic support of the team at The Christie, my friends and my family I don’t think I would have come through this so strongly.