We Need To Talk About…the Big ‘c’

We Need To Talk About…the Big ‘c’

13 November 2018

Hi everyone!

It’s far from the happiest subject we’ve talked about on The Briars Blog – but it’s one that needs addressing, particularly for us as a dental practice, as November is Mouth Cancer Action Month.

Sadly, nearly all of us will have some experience of cancer during our lifetimes – whether it’s a personal battle, supporting a family member through their treatment, or raising a smile from a friend in the middle of their journey. While it may seem like cancer is winning the fight, with 2.5 million people currently living with the diagnosis – the UK has leapt into action, with charities like Cancer Research UK, and Macmillan continuing to raise support and awareness with events such as the Race for Life, and the ever-popular Macmillan Coffee Morning. Channel 4 for the past few years has joined forces with Cancer Research, and managed to raise a whopping 24 million pounds to arm us with the tools to beat cancer for good. In fact, the Stand up to Cancer website predicts by 2034, 3 in 4 people will survive their cancer battle.

The Briars have always been avid supporters of cancer charities, raising money where we can, and participating in charity events. This week, we have broken all dental rules and made some very yummy cookies in the shape of the blue Mouth Cancer Awareness ribbon to sell and raise money for Mouth Cancer Action Month – if you are in the Newbury area on Wednesday of this week (the 14th), call in and pick one up for yourself!

The Briars also provide our patients with an oral cancer screening at every check-up, to ensure anything unusual is picked up on, and dealt with as early as possible. This has always been a routine part of our dental examination, but with awareness of mouth cancer at its peak – we like to reassure our patients that we screen every single person, no matter what age you are. The screening is very simple – you might notice that your dentist asks you to stick out your tongue, then move it from left to right, and up and down – not to make you look daft (we promise), but to check every part of the tongue, and to allow clearer access to your soft and hard tissues so they too can be seen adequately. The dentist will feel the lymph nodes in your neck, and under your chin – checking for any abnormalities or increase in size. If your dentist has a concern, even a very minor one, they will usually take a photo of the area, record any necessary measurements and ask you to come back within a short time frame – just to re-check the area of concern, and refer you to oral surgery if necessary.

Mouth Cancer Action Month is all about awareness of signs and symptoms – knowing when you need to visit your dentist for an assessment if something doesn’t look or feel quite right. Some of the early symptoms can include:

– A lump in your mouth or on your lip that doesn’t disappear after two weeks.
– An ulcer in your mouth that doesn’t heal after 3 weeks.
– A lump on your neck for no known reason, that doesn’t go away on its own.
– Red, or red and white patches in your mouth.

It is important with any of the above symptoms that you visit either your dentist or your GP straight away. If it is proving difficult to get an appointment, due to availability of the practitioner – tell the receptionist why you are calling, and explain that it is urgent you are seen.

The earlier the diagnosis, the better the prognosis.

I have put several different links at the bottom of the blog today – one of them will take you to the Mouth Cancer Foundation ‘signs and symptoms’ page, which has a much longer list of symptoms that can be an indication of something needing more investigation. If you have any concerns, or simply want to know what to look for, it is a good guide to use. The website is full of support networks, such as community forums, or even helplines if you wish to speak to someone.

Before I leave you all to your day, I would like to share a story that I can across one evening on Facebook. It is a post from a 21-year-old girl called Millie – and it is all about her battle with Mouth Cancer. The post really affected me, I don’t know whether it was just because of her age, or because it shared the brutal reality of what Mouth Cancer is – but it is a story I feel is worth sharing with you again today. Millie is still undergoing treatment, but has very kindly agreed for us to share her story with you.

‘I would absolutely agree to you sharing my story…it’s stories like ours and professionals like yourself that will raise the awareness of this disease and start the beginnings of early detection. I pray your post reaches many.’

Millie’s Story:

November is the month of #MouthCancerActionMonth. This is something up until 8 months ago I had never even heard about. But November is also the month that I will start what I hope to be the last leg of my journey in beating this horrible disease with chemotherapy and radiotherapy.

Head and Neck cancer is the 13th most common cancer in the world. And 3 out of 4 people in the UK would not know what signs to look for if they had mouth cancer. I certainly didn’t. It is a disease that mostly affects elderly people. However, it can affect anyone!!

I have kept this private apart from close family, friends and work colleagues but here’s my journey.

I’d had a niggling mouth ulcer on the left side of my tongue throughout the new year, starting mid-January time. It was painful and stung like any other mouth ulcer. I thought nothing of it and used pharmacy products to try and help ease the discomfort. It grew and became more sore right into February time. I was struggling to eat, or drink or talk! Everyone kept telling me it wasn’t right but I kept telling myself it was nothing and that I was too busy to sort it out. Looking back now, this was such a mistake.

I went to the doctor in early March. I had developed a constant painful earache on my left side. I wasn’t eating or drinking, I had lost SO much weight. I felt tired. And was in constant agony with this mouth ulcer. It had grown about 3x its original size and had started to turn a brown/green colour by this point and bled a lot. I would catch the ulcer on my tongue numerous times a day and night. I sat up crying at night in such pain and discomfort because I couldn’t rest my tongue in my mouth comfortably enough to sleep. After hearing all this, the doctor looked into my ear and said it was inflamed. She looked at my mouth and sent me away like I was a pest.

Fast forward a week. The day before my 21st Birthday. I had a routine dental appointment. He looked into my mouth and stopped straight away. He said he couldn’t assess me that day. He had to urgently refer me to the hospital to be seen. It looked like I had pre-cancerous lesions in my mouth.

In the next couple of weeks, I had numerous tests, scans, biopsies. And on April 12th at 1:30pm, mine and my family’s lives came to a haltering stop. As my lovely consultant placed his hand on my shoulder and broke the news. I was diagnosed with stage 2 mouth cancer aged 21. I felt numb.

I waited over a month for my consultant to reserve an ‘emergency’ slot in theatre. However, this took so long because my operation would last 16 hours. That’s a lot of other patients that would need rearranging for me to have mine. But it was an emergency as I was so young. And my cancer seemed aggressive. This waiting time was agonising for me and my family. Knowing you are walking around like normal, with this disease tearing through your body, rotting it away was horrible. Yet it never felt real. Like it wasn’t happening to me.

By the time my theatre slot was booked it was late May. I was such a mess the morning of my surgery. Petrified for when I woke up how different my life would be. I was in theatre for the full 16 hours. The months wait had meant that the cancer had taken 3/4 of my tongue. The floor of my mouth. And had travelled into the left side lymph nodes in my neck. All of this had to be removed. My cancer was aggressive after all. More than anyone had thought.

I woke up in the Intensive care unit disorientated but perked up fast. I looked down and had a tracheostomy (a tube in the bottom of my neck to breath for me) my left arm bandaged completely (as my tongue was rebuilt out of muscle, arteries and skin from my left arm), a feeding tube up my nose, and wires coming from every direction!
I couldn’t use my mouth at all. Not even to talk.

I stayed in hospital for 3 and a half weeks. Breathing through a tube, being fed through my nose and communicating through writing on paper. I could not count the amount of times I broke down (at any hour of the day!). Having a tracheostomy was the most horrendous ordeal for me. It leaked and spat out phlegm from my chest constantly. And not being able to talk could get frustrating. But I met so many wonderful nurses and doctors who became my friends along the way and pushed me to learn to talk again.

I left hospital in June and began my long recovery journey, went to speech and language therapy, learnt to eat again from liquid food, to what looked like a Picasso painting, to solid food and (probably too soon) I went back to work and began my life again as best I could. I thought I was clear.

In August I found a lump in the right side of my neck. I went to my GP again, he said I had an infection and sent me away with antibiotics. I took them for a week. My mum wasn’t happy as I felt terribly ill again, she rang my consultant at the hospital who brought me in that day for an appointment. He felt my neck and said I needed a biopsy. I had that the same day.

On the 1st September I was diagnosed with stage 2 cancer in the lymph nodes on the right side of my neck. This time I felt it all. I was numb but very emotional. I couldn’t understand the unfairness of it all. Why had this happened to me the first time? And why was it happening again? I felt weak, mentally and physically. Why was this happening to me? I broke down.

I was operated on 2 weeks later. Again, my cancer was aggressive. The tumour had quadrupled in size from my diagnosis to my surgery date. And in surgery it became clear the cancer had attacked my jugular vein too. The walls of the vein collapsed when I was opened up. I was bleeding out and my surgeon decided to remove the vein too.

I was in hospital for 2 weeks the second time. But because the cancer was in my vein, it’s likely to be travelling around my body right now, finding somewhere to settle. Therefore, I need chemotherapy to target my blood. And radiotherapy to target my neck area and kill any possible cells left from both surgeries.

Having chemotherapy and radiotherapy at a young age is not ideal, there is a lot of unknown. And a lot of research into the effects of chemo and radiotherapy on young people and the effects in later life. One, is the probability of reduced or complete infertility. Therefore, before my treatment later this month, I am currently undergoing IVF treatment (where I inject myself every day with hormones) In order to harvest my eggs and freeze them in case this happens. Although it may not, it is better to be safe. I have learnt that.
I have had a PEG tube inserted into my stomach, ready for my treatment as the radiotherapy to my neck will mean I become too sore to swallow food or drink.

I am not looking forward to the next 12 weeks. In fact, I am petrified to have to have radiotherapy and chemotherapy.
And what upsets me most is that this could have been prevented from happening if there was more awareness of this disease.

I now have the most WELL LOOKED AFTER mouth of anybody I know!! I have my mouth regularly looked and poked at and I pray this won’t happen to anybody I know and love.
I have had THE most amazing support and love from my family and close friends throughout this journey my life has taken. However, my journey needn’t have been so tough if my GP had originally known the CLASSIC signs of head and neck cancer. People who have head and neck cancer and survive their first encounter have a 20 times higher risk of developing a second cancer. Just like me.
I could have been around a month ahead of where I was the first time. My cancer wouldn’t have spread so far through my mouth, or to my neck, either times.

This was extremely difficult for me to share. I have been embarrassed to share my journey with people for fear of being judged, I find head and neck or more closely, mouth cancer to be disgusting and embarrassing. I’ve feared judgement for having this horrible disease. However, I want to raise awareness for people and for GP’s to get the correct training for diagnosis.
Please, I don’t want any pity but rather take a moment to look at the photos I have taken to document my journey so far. And maybe take a look online to find out more or how to prevent head and neck/mouth cancer.

Millie’s story is a sad reminder that cancer can affect anyone at any time – The Briars Team wish her all the best with her treatment, and hope she makes a full recovery. A huge thank you again Millie for being so brave and letting us share your story.

I will catch you all next week, look after yourselves.

Amy x

Mouth Cancer Foundation: http://mouthcancerfoundation.org/patients-guide/symptoms

Macmillan Cancer Support: https://www.macmillan.org.uk/