How old are you?
Where from are you from?
Dudley, West Midlands
Profession, if working?
Manager and tutor of Maths and English Study Centre
What type of cancer do you have?
When and how was it diagnosed?
It was diagnosed late March 2020. I’d been suffering with what I thought was a simple ulcer on the side of my tongue, since early January. My ‘ulcer’ kept catching my teeth every time I spoke and started to become quite painful. I started using the usual over-the-counter gels and mouthwashes, but they didn’t make any difference.
After a couple of weeks of suffering, I visited my GP who thought it would clear up soon (no medication prescribed), and advised me to visit my dentist if it didn’t. I wasn’t very happy with this and because I’d already had it for two weeks, I made an appointment with my dentist a week later. He took a photo of my tongue and referred me to a specialist. He also prescribed me a course of antibiotics. I hoped they would clear it up. Unfortunately, another two weeks passed, and I returned again to my dentist who prescribed a stronger course of antibiotics, with the caveat that I should now attend the appointment with the specialist, as there was nothing else he could do for me. Fortunately, by that time, my appointment letter had already come through the post.
The specialist examined me briefly and asked me what I thought it was (trying to break his news to me gently). By that stage, I strongly suspected myself that it was cancer, but it was still a blow when the specialist confirmed his suspicions. A week later, I was booked-in for a biopsy, and subsequently, the test came back as positive. Whilst I was waiting for surgery, eating and sleeping became more difficult due to the pain/location of where my tumour was. I could only eat after first taking painkillers, and when sleeping, I had to use a mouthguard.
What treatment have you undergone?
I underwent a partial glossectomy (removal of part of my tongue) in late April, which I was very anxious about, especially as I was afraid I would not be able to teach anymore. The operation went well, but my mouth and neck were sore and I had little sensation, which meant eating and speaking were initially difficult. A week later, I was much better. Sensation had returned and most of the pain had gone. I could eat soft meals, speak better, and a week later I was back working at my desk (albeit part-time).
At the follow-up appointment with my consultant, he confirmed that my results had come back from Pathology, and that he was happy in that he had been able to extract (what were by then) two tumours on my tongue successfully, with clear margins. However, due to the size of the biggest tumour, he was concerned that cancer may have spread to the lymph nodes in my neck. Although there were no indications from my scans that it had, he wanted to perform a further operation on my neck as a precaution. I was in two minds about this, as I knew that with this surgery there were risks of nerve damage, not to mention it would leave an unsightly scar. In the end, I thought it would be better to be safe than sorry, and I’m glad I did because from the 31 lymph nodes extracted, 4 came back as positive. Fortunately, I had no nerve damage or pain, and was able to eat toast for breakfast the next morning.
However, due to the fact that my cancer had spread, I had to undergo six weeks of radiotherapy. This was the treatment that I had most hoped to avoid, as I knew that the side-effects could be gruelling, as my Father had undergone such treatment several years earlier. Such side-effects meant that eating and drinking would prove difficult and consequently, I was advised to have a PEG fitted. This allowed me to receive nutrition and medication directly through a tube into my stomach. I would strongly recommend this (if need be) as I ate no solid food for over a month, and thus found it invaluable. It’s now been over 5 weeks since I finished radiotherapy. Side-effects are lessening over time, and although I sometimes have a dry mouth (from less saliva production) I am no longer using my PEG, and am eating three soft meals a day.
Did you have any of the obvious risk factors?
None whatsoever. I packed up smoking twenty years ago, drank very little alcohol (far less than any of my friends or relatives) and have had only one sexual partner. The fact that nobody can tell me why I had cancer is very frustrating and “bad luck” is not at all an acceptable answer for me.
What support have you received?
The support has been excellent throughout, and I can’t thank the dentist, nurses, speech therapists, dieticians, consultants, oncologists and the team at the Mouth Cancer Foundation enough! All of my questions have been answered as best they could have been, and the advice has helped me through this ordeal.
Is there anything you would like to say?
Yes! The advice not to ignore bumps and lumps et al is spot on. Don’t be afraid of not wanting to hear bad news. If there are symptoms that are not going away, do visit a health professional as soon as possible. Early diagnosis could be literally lifesaving and also minimise any side-effects from treatment. With regards to suspected Mouth Cancer, I’d say go to your dentist rather than your GP, in the first instance.
Ask questions, do your research (from credible sources), join online support groups, but be guided by your medical team.
I think I’ve been lucky. Even though I still find it hard to accept that I’ve had ‘the big C’, the care I’ve been received has been second to none and I’m very grateful to many people, not least during this time of a pandemic.