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Oral Cancer: My Perspective as a Young Patient and Scientist

by Christine Gundry

As a PhD student researching cancer, I have heard many times 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 as a young patient and scientist. I hope 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.

Too busy to visit the doctor or dentist!

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, I was also busy planning a wedding with my fiancÚ. 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, mouth pain and felt dizzy. 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 three weeks of struggle and increasing concern that the area of ulceration was getting bigger, more painful and changing in appearance, I spoke to a medic at work and showed her my mouth. She swore at the sight of it! Concerned that I had not yet been referred, she urged me to seek emergency help. I had an appointment at the dental hospital the following week, 4 months after my first symptoms.

What do you mean I have oral cancer?

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 cancer; it 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.

The doctors were extremely kind, frank and helpful. My best option was to have major surgery to remove the tumour and reconstruct my mouth with muscle, fat and skin from my belly. A row of lymph nodes from my neck would be removed (radial neck dissection). Testing them would determine whether the disease had spread, and whether radiotherapy would be required.

Life on hold

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. Then the reconstruction began. The work of the surgeons and support from the nurses is truly remarkable; I will never be able to thank them enough.

I vividly remember waking up, wondering how the operation went and counting the tubes entering my body. There were nine. I was being fed though my nose, breathing through a tracheotomy tube, unable to speak and aching all over. Even lifting my arm was exhausting.

It was a transforming experience, relying on machines, doctors and nurses to simply stay alive. I was struck by how fragile life is, and how fortunate I am to live in a century where such care is possible and freely provided. With this came a realisation that my life probably couldn't get much worse, and a renewed determination to keep going through whatever was in store for me.

Back on the ward, I met patients who had been through similar things and simply understood me, though the youngest was 40 years my senior! Even though none of us could talk, we frequently went on walks around the hospital together, communicating through gestures.

Being told I would be going home shortly filled me with delight and dread. I would remain nil by mouth, feeding myself through a tube into my stomach, dispensing my drugs without the support of the ward nurses. Just before I left hospital, we got the news that the tumour had been successfully removed with clean margins and had not spread. Many patients have to undergo gruelling radiotherapy a few weeks after major surgery. I was lucky!

From patient to cancer researcher

The diagnosis and operation happened so fast, and I had so much adrenaline pumping through my body, that what had happened really sunk in only when I was recovering at home. I wasn't prepared for how much of a long hard slog it would be for my body to recover. Over a long period of time, and with help from a speech therapist, my speech improved. I slowly transitioned from nil by mouth, to liquid food, to soup and ice-cream, to blended food, to soft food and eventually on to normal food. But it took another operation, in which the surgeons debulked 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 debulk 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 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.

I always wanted to know how long it would take to get my 'normal' life back. With hindsight, this was not a helpful expression. The experience was always going to change my life, so I had to find a new 'normal', rather than trying to get my old life back just as it was. As I write this, it has been almost two years since my diagnosis, and only now am I nearly recovered.

Unsurprisingly, having a serious illness changes your perspective on life. I appreciate my family and friends a lot more. You come to realise what is really important to you in life. My approach to cancer research has changed: I am now keen to carry out and support work that is directly clinically relevant.

How I'm getting over cancer

I am fortunate to have such a loving and supportive husband, family and network of friends. Their support has been crucial to my recovery. I found it helpful to talk to other young people going through similar experiences, sharing our concerns and giving each other advice.

The NHS in Glasgow provides excellent care for oral cancer patients, and we are fortunate to have such good support for all who require it. All my doctors and nurses have been extremely helpful and caring. My advice to patients is always to ask the questions on your mind, no matter how silly or embarrassing they might be. I found it helpful to write a list of questions before my appointments.

Macmillan have diverse services for cancer patients, which helped me a lot. It is easy to access information and support. They offer help with finances, returning to work and many things you don't think about when you are first diagnosed.

Questions that need to be addressed

I hope to see the answers to these questions and improvements in awareness and speed of diagnosis in the coming years.

This is just my personal experience of cancer, some patients are not as fortunate as myself. That is why I am keen to increase oral cancer awareness, improve training for dentists and GPs, improve support for other patients and fund research into oral cancer.

If you want to ask me, or comment on, anything that I have written, contact The Ben Walton Trust and state it is for Christine in the subject.

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