As a PhD student researching cancer, I have heard time and time again the latest cancer statistics and the latest idea of how to ‘beat’ cancer. However, it never crossed my mind that I, a healthy and happy 25 year old, would be diagnosed with oral cancer.
Cancer is never far from the headlines and every patient has their own story to tell, but I hope in writing this to share my personal experience from the rare position of a young patient and a scientist. That in the future, the causes of oral cancer in young people will be thoroughly researched to improve diagnosis and treatment, and that society will become more aware of the disease.
As a normal student in my twenties, I was busy living life to the full, juggling my time between family, friends, work and other interests. About the time I first felt pain in my mouth, my fiancé and I were busy planning our wedding. I found some ulcers under my tongue and tried various off-the-shelf products, which had little effect. It did not even cross my mind that it could be anything serious. I went to see a GP about it a couple of months later, and was prescribed another anti-inflammatory drug.
In the week leading up to our wedding we had a family tragedy, so I returned to see my GP only after our honeymoon. I felt exhausted, run down and had persistent ulcers and mouth pain. I was convinced that my stressful life was causing the symptoms. My GP looked at my mouth over this period, thought the ulcers were clearing up and agreed they were likely to be a sign of stress. Gradually my mouth became more painful, my speech slurred, eating difficult and sleep sparse. I struggled with normal life. My husband and friends were increasingly concerned and encouraged me to keep going back to the GP, who a few weeks later referred me to the dental hospital, but informed me that I would not be seen quickly as I was young, healthy and had never smoked.
After a short hospital stay, biopsies and scans revealed a tumour in the base of my mouth and tongue. It’s hard to imagine how you will cope with the diagnosis of the big ‘C’. ‘Cancer’ has become a familiar word to us all, but its meaning is highly personal. In the past, the word reminded me of my work as a scientist, seeking to help patients and improve treatments by having a better understanding of the disease. But that was the past. Facing diagnosis was different: I felt a mixture of terror at what the future might hold, and a strange sense of relief that I knew what was wrong with me.
I had a month to wait for the surgery. It was the first time I had ever been told to eat lots and rest as much as possible, but I didn’t want to do either. I had no appetite and wanted to keep myself distracted. Living in Glasgow, my husband and I were a long way from our families in the South of England, which was difficult for all of us. Cancer affects close family and friends, not just the patient. But they were incredibly supportive and helpful. We had to ask people to stop making soup for us, as our fridge and freezer were overflowing!
I had to trust that my doctors knew what they were doing, as my life was literally in their hands. The operation was almost 12 hours long. The tumour was removed along with most of the floor of my mouth, half my tongue, some teeth and a small shaving of jawbone. But it took another operation, in which the surgeons de-bulked my new tongue and floor of my mouth (reducing their size), before I felt any big improvement in speech or eating. This was followed by another minor operation to further de-bulk my tongue and implant new teeth.
The main thing that struck me was how weak and exhausted I was. I thought I’d feel better a lot quicker than I did, which was incredibly frustrating. Whenever I felt improvement, I would return to the hospital for another operation, and would feel worse again. Surprisingly, I spotted a work colleague at the hospital, and discovered that she also had oral cancer. I could not believe it: the first patient I’d met who was roughly my age, I knew!
When I felt ready for work, I spoke to a kind woman from Macmillan, who advised me on returning to my studies. I still felt exhausted, with the added difficulty of hearing, reading and thinking about cancer research. Despite great support from my colleagues, I found this really tough and ended up having a false start.
It has been almost two years since my diagnosis, and only now am I nearly recovered. This is just my personal experience of cancer. Many will have different stories to tell, and some are not as fortunate as I have been. This is why I am keen to increase oral cancer awareness, improve training for dentists and GPs, improve support for other patients and raise money to fund research into oral cancer.
I want people to know that oral cancer can occur with no predisposing risk factors. Currently I am volunteering for The Ben Walton Trust, a charity that focuses on promoting awareness and funds research into oral cancer in younger patients (www.benwaltontrust.org). I am organising a fund raising event during Mouth Cancer Action Month to support the work of the Ben Walton Trust. If you would like to support this work, you can donate £5 by texting ‘EMCH99 £5′ to 70070.