Karen Liesching-Schroder’s mouth cancer journey

Karen, 47, was ‘shocked beyond belief’ to be told that a seemingly harmless mouth ulcer on her tongue was actually mouth cancer

Having appeared during the school holidays of 2016 it was not until early February that Karen finally got a biopsy done and her worst fears were realised; it was cancer of the tongue. When asked if she had any idea that it would be cancer, she replied, “I had no idea, I’m a healthy person, I run, don’t smoke, don’t drink much and I eat healthy food.”

A treatment plan for the mother-of-two from Rochford, Essex, was drawn up. She endured what she describes as ‘unbearable agony’ during her course of treatment for the disease and claims going for runs kept her ‘sane.’ Radiotherapy, a neck dissection and gruelling surgery to have the side of her tongue removed simply weren’t enough to keep her from continuing to run with her local club.

Speaking of her determination to remain mentally and physically healthy in the thick of her battle with cancer, Mrs Liesching-Schroder said: “I just needed to run. Control was being taken away from me by cancer and this was one way of getting control back. When it came to the end of radiotherapy, I had the goal that I wanted to run the Southend half-marathon. I was told by clinicians that I wouldn’t be allowed to do it. But nobody could stop me. It’s what’s keeping me going and I have to do this. Running was my way of being free from it all.”

Despite being told that for immediately after her course of radiotherapy finished the side effects of the treatment would be worse, Karen still completed what she claims to be her ‘best run ever.’

“It was all about celebrating life. Being able to do that was really important to me. My running club were all there at the end with high-fives, a massive line of them. It was brilliant. I had unbelievable support all the way through from so many people. I was very lucky.”

Mrs Liesching-Schroder’s life has never been the same following her treatment. Complications including “an aggressive form of oral thrush,” learning to speak properly again and concerns about cancer returning are just some of the obstacles she has faced over the last few years, but nothing has stopped her from running regularly.

“After you’ve had cancer, you see life a bit differently and you feel a bit more alive afterwards. There’s a lot of things out there to enjoy and now I feel I have a second chance at doing just that.”

Years on from her initial diagnosis, she is determined to use her story to help raise awareness of the disease.

“A lot of people think that mouth cancer only happens to smokers, but my story shows that isn’t always the case. If you have worried about an unusual change in your mouth then get it checked out. Don’t be frightened but it’s important that you don’t suffer in silence and to remember that the sooner it’s checked out, the sooner it can be sorted. Chances are it’ll be fine but in the rare case it is not, it could be a life saver.”

For more information about mouth cancer, including how to spot the disease early, how to reduce your risk and what to do if you notice any of the early warning signs, visit www.mouthcancer.org.

Mouth cancer in young people: Charlotte’s story

As part of November’s Mouth Cancer Action Month, Charlotte Webster, who lives in Peters field, Hampshire, tells us her experience of mouth cancer.  Charlotte hopes her story will raise awareness of the disease and encourage more people to check themselves for signs of mouth cancer

At 26 years old, Charlotte was given the life-changing news that she had mouth cancer. The ex-cabin crew member now training to be a midwife from Hampshire does not fit the typical mouth cancer patient – being a young woman who’s a non-smoker and an active gym-goer.  But Charlotte represents a growing number of younger people who are being diagnosed with mouth cancer and also is just one of thousands of people who have been diagnosed with mouth cancer and had to face their treatments with the added struggle of COVID regulations and isolation.

Ahead of November’s Mouth Cancer Action Month, Charlotte talks about her own journey, opens up about what led her to getting checked out, the disbelief of a diagnosis, and reveals how mouth cancer continues to change her life. 

“I had some ulcers for about three to four years before I had my [mouth cancer] operation, but I wasn’t worried about them at first because I do get run down and I was jet-lagged and flying all the time with my job and often ulcers are sign of celiac disease, which I have, so I put it down to that. They came and went but always in the same area, they never fully went but they used to flare up like if I was run down.

“About a year before I had my operation I went to the dentist and they said ‘well, I don’t really know what it is, might be because your teeth are rubbing so we would advise maybe getting your teeth straightened and have your wisdom teeth taken out’. So, I did that. I paid for braces, got my wisdom tooth taken out and had really great teeth, but still had the ulcers.”

After these initial early signs of mouth cancer were missed by her dentist and other professionals, Charlotte went on to have a biopsy in April 2021 after her ulcers got significantly worse.

“They felt like ulcers do, but just a bigger patch and they started to turn white, and they had like red around them as well, so they looked quite like inflamed. I thought maybe it was a bit of an infection or something. My mum kept telling me to go and get it checked so I went to my doctor in January and he said he wanted to send me for a biopsy which I got around April.

“I went in for the results, and he said, ‘have you got anyone with you today?’ And I was thinking yeah my other half is in the car with the dog. And he said, ‘Do you want to bring him in?’ and I just looked him and I said ‘it’s not good is it?’ and he was like ‘no, it’s not. I’m really sorry, you’ve got cancer’ and I was like, ‘What do you mean? Surely not.’ and I think I almost laughed. It was such a shock because I’m otherwise a healthy person.”

Charlotte also told us about her time in intensive care.

“It was hard, and I remember I couldn’t see mum which was really hard too. I couldn’t wait to get out of hospital, as amazing as the staff were, my goal was ‘right, just get home’. To get discharged you need to show the staff you can drink, swallow, keep stuff down, you know, all the rest of it. So, they listen to your swallow for a while and then they’ll test it.

“My tracheostomy was fitted for seven days so my body hadn’t swallowed or breathed through my mouth in so long that often your muscles take a while to get back to that. And I had to have my tracheostomy taken out, and I remember the first time they tried to take it out. They covered this hole so I could then breathe through here and it wouldn’t, it just couldn’t, I think my body wasn’t ready because it was like being suffocated because I couldn’t breathe through my mouth. it was so like, it’s just like I had a mouth full of like straw or hay. It was just so hard, so husky, so stuck. And I remember the panic, I was like no, I can’t, so they tried again the next day and then every day it just got a bit better and better.”

After getting home from the hospital Charlotte continued to get support from different professionals including counsellors, dieticians, and speech therapists, but also emphasised how important she found the support she got on social media from other mouth cancer sufferers.

“It’s a different kind of like support that you get because you know that they feel the same, like one guy said to me ‘I saw your video of you sipping the water for the first time. I laughed my head off because I felt exactly the same!’ and before my operation there was one lady who said she would chat to me, but I chose to speak to her after my op because I just wanted to, not really know much, I just wanted to get it done and out the way. But afterwards I messaged her about one of the things I was most worried about – I asked her to send me a voice note because I wanted to know that I wasn’t going to sound like you couldn’t understand me that was the only thing I was worried about. Because I know unfortunately it does happen some people, but she reassured me.”

Charlotte also shared some thoughts about mouth cancer in young people.

“There is a stigma against mouth cancer, I was told ‘oh, you’re too young’, ‘God it won’t be that’, ‘no it won’t be that’, and it does happen. It really can happen to anyone not just smokers because that’s such a stigma – it really annoys me. People think you have to be like a really old man that smokes 50 a day, but you don’t. It took this tiny little poster in the clinic for me to, to be like, ‘oh my God, that’s mouth cancer’ and by then it was too late anyway.”

Learn more about mouth cancer by visiting www.mouthcancer.org.

The Oral Health Foundation and Denplan launch Mouth Cancer Action Charter to Parliament

The Oral Health Foundation and Denplan launched their Mouth Cancer Action Charter at a face-to-face event in the Houses of Parliament earlier this week. Members of Parliament, ministers and dental and health professionals were invited along to sign the Charter and demonstrate their support for its policy recommendations.

The Mouth Cancer Charter has been created to coincide with November’s Mouth Cancer Action Month – the UK’s biggest charity campaign for mouth cancer awareness. The campaign calls for more people to be mouthaware by being able to recognise and act on any unusual changes to the mouth.

The Oral Health Foundation and Denplan are concerned that mouth cancer referrals have significantly fallen over the pandemic period, while awareness of the major signs and symptoms of mouth cancer is very low. According to results from a recent MP survey, only 27% of MPs felt they were as well informed of the causes and symptoms of mouth cancer as they are of other leading cancers.[1]

Dr Catherine Rutland, Clinical Director at Denplan, part of Simplyhealth said: “We’ve worked together with the Oral Health Foundation for over 20 years on the Mouth Cancer Action Campaign, but we wanted to go one step further this year by spreading the mouth cancer awareness messages further and wider into the corridors of Westminster.”

“Mouth cancer referrals will have been significantly reduced due to the Covid pandemic restrictions last year and delays have been incurred by the dental backlog and access to NHS dentistry remaining difficult in certain areas. We urge the Government to consider these mouth cancer policy interventions. The longer the delay to implement these changes, the more lives could be lost to mouth cancer as possible cases go undetected. Top of the policy recommendation list is that we are calling on the Government to fund a public health awareness campaign on the signs and symptoms of mouth cancer.”

Recent research conducted by the Oral Health Foundation and Denplan shows that four-in-five UK adults have never been exposed to public health messaging around mouth cancer, leading to poor awareness of the early warning signs and risk factors[2].

Dr Rutland said: “If people can easily recognise the risk factors and what to look out for in terms of changes in their mouth, health professionals will also be able to catch cases earlier. Late diagnosis of mouth cancer is becoming all too common and this will have a severe effect on a person’s quality of life and their chances of survival.”

The Charter proposes that GP’s, pharmacists, care home and nursing staff should all be given enhanced training or further information about how to look out for signs and symptoms of mouth cancer to further improve early detection. Spotting signs early can increase someone’s chances of survival from 50% to 90%.

Sir Paul Beresford and Dr Nigel Carter OBE

Commenting on the policy recommendations proposed in the Charter, Dr Nigel Carter, Chief Executive of the Oral Health Foundation said: “If these mouth cancer policy changes were put into action we could drive down case numbers and save the government a significant amount of money in oral cancer treatment costs.  In England, the cost of head and neck cancer treatment was £309m in 2010-11[3] and since then case numbers of mouth cancer have grown by around 67%.” 

The Mouth Cancer Action Charter highlights the following policy areas for change:

  1. Conduct a government funded public health awareness campaign of the signs and symptoms of mouth cancer.
  2. Improve access to routine dentistry to detect mouth cancers earlier and save lives.
  3. Enable enhanced training of GPs to identify suspected mouth cancers and change the NICE guidelines so that more cases can be referred to secondary care.
  4. Improve training programmes for healthcare staff to look for signs of mouth cancer.
  5. Introduce free dental check-ups and treatment for mouth cancer patients to end the unfair financial burden placed on them.
  6. Support the development of better technology to diagnose mouth cancers.

One of the key points in the mouth cancer charter is about the development of better technology to diagnose mouth cancers. During the pandemic, it has become more evident that innovation, data and technology are helping to make dentistry safer, faster and more accessible.

The use of technology in diagnostics is also becoming more important. Denplan and the Oral Health Foundation are proposing that with the support from NHSX a mobile app could be developed that would enable patients to share photographs of their mouth lesions which would then be reviewed within a short space of time by a consultant.

In addition to politicians and ministers, the Oral Health Foundation and Denplan are also asking dental professionals and other healthcare professionals to show their support and sign the Charter at www.dentalhealth.org/mouth-cancer-action-charter. More information on mouth cancer can be found on the website and by following the campaign on social media via #MouthCancerAction.

References:

[1] YouGov completed online interviews with a representative sample of 103 MPs.   The survey was completed between 6th and 28th September 2021;

[2] The research was carried out online by Research Without Barriers – RWB. All surveys were conducted between 6th October 2021 and 8th October 2021. The sample comprised 2,008 UK adults

[3] https://pubmed.ncbi.nlm.nih.gov/28734109/

Mouth cancer referrals plummet by a third since start of pandemic

The Oral Health Foundation is calling for urgent action around cancer diagnosis, following new data that shows mouth cancer referrals have fallen by a third (33%) since the beginning of the pandemic. 

New figures collected from seven NHS Trust Hospitals across the UK, reveals the number of people being referred for possible mouth cancer fell from 2,257 in the six months prior to March 2020, to 1,506 in the six months after March 2020.

In total, six out of the seven NHS Trusts saw mouth cancer referrals tumble during this time, with two hospitals in Wales recording a 47% drop in referrals – the most in the UK.

In Northern Ireland, mouth cancer referrals have fallen by 36% since the beginning of the pandemic while England and Scotland have seen decreases of 31% and 30%, respectively.

Many mouth cancers are spotted in the early stages by a dentist during a routine check-up.  With Covid-19 limiting dental practice activity to 20% of normal activity, the Oral Health Foundation is deeply concerned that many people with early stages of mouth cancer are going undiagnosed.

In the absence of seeing health professionals face-to-face, Dr Nigel Carter OBE, chief executive of the Oral Health Foundation highlights the importance of self-checks at home and knowing how to spot mouth cancer in the early stages.

Dr Carter says: “Regular dental check-ups and GP appointments are the main routes for identifying the early stages of mouth cancer.  We fear that without access to dental and wider health professionals, that many mouth cancer cases will go undiagnosed.

“A person’s quality of life after being treated for mouth cancer, as well as their chances of beating the disease, is highly dependent on the time of diagnosis.  By allowing so many potential mouth cancers to go untreated, there is a real danger of more people losing their life to the disease.

“While dental and GP visits remain disrupted it is important that everybody knows how to check themselves for mouth cancer. If you notice anything out of the ordinary, contact your dental practice, who will be able to see you as an emergency patient.”

Mouth cancer can appear on the tongue, tonsils, gums and lips.  It can also be found on the roof and floor of the mouth, as well as the head and neck.

Mouth ulcers lasting three weeks, red or white patches in the mouth, or unusual lumps and swellings, are the typically early warning signs.  Persistent hoarseness can also be a symptom.

Covid-19 has had a significant impact on dental access in the UK.  Research by the Oral Health Foundation shows that more than half (56%) of UK adults claim to have had dental check-ups postponed or cancelled.

During this time, one-in-six (16%) have experienced at least one of the potential early warning signs of the disease.

Meanwhile, the British Dental Association estimate a 10 million backlog of appointments due to dental practices being forced to shut down during the pandemic.

Dr Catherine Rutland, Clinical Director at Denplan, part of Simplyhealth, believes it is crucial that dental practices remain open during the remainder of the pandemic.

Dr Rutland says: “Dentists continue to play a vital role in identifying mouth cancer at routine check-ups.  However, during the Covid-19 pandemic, access to dentistry was severely curtailed and opportunities to catch mouth cancer early will have been missed. If mouth cancer is spotted early, the chances of a complete cure are good.

“The Foundation’s recent research has revealed that nearly four in 10 people reported encountering an issue and being unable to see or get advice from their dentist because of the current limited access to dentistry caused by the pandemic.  Keeping practices open from now on is vitally important to help ensure the early detection of mouth cancer. It could save thousands of lives.”

Stuart Caplan was diagnosed with tongue cancer in 2012.  The husband and father-of-one from Marble Arch, lost two-thirds of his tongue to the disease but says acting quickly was key for him beating the disease.

Stuart says: “Mouth cancer is a hidden cancer, unlike a lot of cancers where there are obvious symptoms.  People think ‘oh it’s only a mouth ulcer, it’ll pass’.  It’s easy to just put a mouth ulcer treatment on and ignore it, and without visiting a dentist regularly it’s likely to get missed.

“If it’s not normal for you, get it checked immediately, especially you have had something for a few weeks. Cancer symptoms don’t go away. That’s the litmus test.  Go and see a dentist or hygienist.”

Figures collected by the Oral Health Foundation show that 8,722 people in the UK were diagnosed with the disease last year, increasing by 97% since 2000.

Mouth cancer cases in the UK have soared for the 11th year in a row and have more than doubled within the last generation.

It is also vital that government issues updated advice about fallow periods for dental practices. Some practices are still working to the original one-hour fallow period, while others have reduced their time between patients.  More frequent communication and direction is needed.

References: 

  • Oral Health Foundation (2020) ‘State of Mouth Cancer UK Report 2020/21’ Published November 2020, online at www.mouthcancer.org.
  • Mouth cancer referral data was collected from; NHS Greater Glasgow & Clyde, NHS Ayrshire & Arran, Bwrdd Lechyd Prifysgol Aneurin Bevan, NHS Birmingham Community Healthcare Foundation Trust, Belfast Health and Social Care Trust, NHS Wye Valley NHS Trust, and NHS South Tyneside and Sunderland NHS Foundation Trust.

New data reveals most people do not know the symptoms associated with mouth cancer despite record number of cases

Cases of mouth cancer in the United Kingdom have nearly doubled in the last 20 years, yet an alarming number are unable to identify the early warning signs and symptoms. Last year, more than 8,700 British adults were given the news that they had mouth cancer.  The disease is diagnosed on one person nearly every hour.

New research by the Oral Health Foundation as part of November’s Mouth Cancer Action Month reveals that seven-in-ten (71%) do not know the symptoms of mouth cancer.

Further findings show more than four-in-five (83%) do not feel confident in what they are looking for when it comes to doing a mouth cancer check at home while around two-in-three (62%) confess to never checking themselves for signs of the disease.

Dr Nigel Carter OBE, Chief Executive of the Oral Health Foundation, believes with the number of cases on the rise, it is important for everybody to know how to spot the early signs of mouth cancer and know how to perform a simple self-check.

Dr Carter says: “In the UK, and around the world, the number of people affected by mouth cancer continues to grow at an astonishing rate.  Anybody is at risk of mouth cancer, and with limited  access to dentistry at the moment, it is more important than ever for people to be vigilant. That’s why it is so important to know how and where mouth cancer can strike.

“Look for mouth ulcers that do not heal within three weeks, red or white patches in the mouth and unusual lumps or swellings in the mouth or head and neck.

“Most mouth cancers appear on the tongue – around a third of all cases – but it can also strike on the tonsils, gums and lips.  It can also be found on the roof or floor of the mouth, as well as the throat.”

The new research shows that around one-in-two (52%) are aware that long lasting mouth ulcers could be a sign of mouth cancer while fewer know that red patches (41%) and white patches (48%) could be a symptom. Similarly, less than half (47%) identify lumps or swellings in the mouth, head or neck as a potential sign of mouth cancer, and even less (23%) know that persistent hoarseness might be a link.

The research has been published to coincide 20 years of Mouth Cancer Action Month.

The last two decades have painted a bleak picture for mouth cancer numbers in the UK.  New annual cases have soared by 97% since the year 2000, while those losing their life to the disease have increased by 48% in the last decade.  

For the last 20 years, the Oral Health Foundation has received support for the campaign from Denplan, part of Simplyhealth.  The partnerships between the two mouth cancer campaigners bids to turn the tide against the disease and create a more mouthaware population.

Catherine Rutland, Head Dental Officer of Denplan, part of Simplyhealth, highlights that conducting a potentially life-saving mouth cancer check is easy and can take as little as 45 seconds.

Dr Rutland says: “By spotting mouth cancer early, patients have a much better chance of beating it. With early diagnosis, the chances of surviving mouth cancer are nine out of ten and that’s why knowing what to look out for is so important. 

“A simple self-examination should involve checking your cheeks, gums, lips, tongues and tonsils. Also check the floor and roof of the mouth, as well as your head and neck. You should be looking for mouth ulcers that don’t heal within three weeks, red or white patches in the mouth or unusual lumps or swellings in the mouth, head and neck.

“Mouth Cancer Action Month is the perfect opportunity to become mouthaware by learning the risks and early signs of mouth cancer. It is also important that we not only recognise, but act on unusual changes in the mouth.  If you notice anything out of the ordinary, get checked out by your dentist or doctor.”

For more information about mouth cancer, including how to do a self-check for the disease, visit www.mouthcancer.org.

BAPD seeks new guidance from government to help to screen for oral cancer

The British Association of Private Dentistry (BAPD) has advised the government that it needs to change its guidance in order to help dental practices successfully screen for oral cancer.

The Association recently conducted a straw poll of its members in order to find out whether dental professionals were encountering problems in referring patients who were suspected of having mouth cancer. The results found that 676 out of the 755 respondents had experienced referral problems when seeking secondary care.

The poll comes following research, which has suggested that more than 24,000 cases of cancer have gone undiagnosed due to the Covid-19 pandemic.

Jason Smithson, Co-founder of the BAPD, said: “The comments would suggest a multi-factorial problem; however, there would seem to be some common themes. Clearly, this is a serious problem for the profession. Therefore, we have compiled a survey that we hope to present to PHE and NHSE and may impact fallow and PPE.”

Diagnosis of mouth cancer down during Covid-19 pandemic

The Mouth Cancer Foundation is concerned that, because of the current closure of dental practices, patients are not receiving regular routine examinations for early signs of mouth cancer. It seems likely that even when general dental practices re-open it may be a considerable time before a full service becomes widely available. Sadly, many cases of all head and neck cancers could be going undetected.

Since the beginning of the coronavirus pandemic, diagnoses of all types of cancer have dramatically diminished. There are a number of reasons for this, including the reluctance of the public to visit clinical settings for fear of exposing themselves to the virus. Doctors and hospitals are assuring the public that these risks have now been minimised; however, it may still be a while before people feel completely comfortable in making appointments.

“The number of patients being diagnosed with mouth cancer has dramatically reduced in recent weeks due to coronavirus,” said Dentist and Mouth Cancer Foundation President, Dr Philip Lewis. “Prior to the pandemic the incidents of newly diagnosed mouth cancers was on the rise, so this is an alarming situation. Dental Practices are largely closed so it is more important than ever that people check themselves for mouth caner in the same way they would carry out routine examinations for other types of cancer.”

The Mouth Cancer Foundation has two important messages. Firstly, people should examine themselves regularly at home, just as they do for early signs of other cancers. Conditions to look for include:

  • Swellings in the mouth, face or neck
  • Red or white patches on the skin of the mouth, the tongue or the palate
  • Ulcers that do not heal in a maximum of 3 weeks
  • Changes in texture of the lips or inside the mouth
  • Difficulty swallowing or chewing
  • Numbness of the tongue or lips
  • A feeling of something stuck in the throat
  • Hoarseness of the throat lasting 6 weeks or longer

The Mouth Cancer Foundation publishes a free self-examination leaflet which is available for download at: www.mouthcancerfoundation.org/get-involved/merchandise. This leaflet explains exactly what to look for and how.

The foundation’s second message is: If a patient of yours is concerned that any problems in their mouth may be due to early mouth cancer, they should contact the dental practice immediately, as even during closure we can still arrange referral to a specialist if necessary and still have access to fast-track referrals. If the patient is not registered with a dentist, they should contact their doctor.

Oral Health Foundation: “Decision to finally offer boys a HPV vaccination is one which will save many lives”

The decision to offer boys a vaccination against the Human Papilloma Virus (HPV) by the Joint Committee on Vaccination and Immunisation (JCVI), announced yesterday by Health Secretary, Jeremy Hunt, has been hailed by the Oral Health Foundation as a decision that will save thousands of lives every year.

The charity believes the decision, which has been under consideration since 2013, will lead to many lives being saved due to the vaccination’s ability to prevent HPV related mouth cancer, as well as other life-threatening diseases.

Under the current programme almost 400,000 boys go unvaccinated every year, which has millions at risk of developing HPV related cancers later in life – cancers which are on the increase.

Dr Nigel Carter, CEO of the Oral Health Foundation, discussed this momentous ruling: “This decision has been an incredibly long time coming and one we firmly believe it will be a significant moment in the ongoing battle against many types of cancer in the UK.

“This decision brings to and end what has been a dangerously discriminatory and unfair HPV vaccination programme in Britain, which has left millions of boys and men unprotected from the biggest sexually transmitted infection in the world.

“HPV is one of the leading causes of mouth cancer; but now we hope that with the swift implementation of the vaccination programme we will see a significant reduction in these numbers.

“Since 2008, girls have been offered a HPV vaccination through a school based programme to protect against cervical cancer, but this has been proven to offer little protection for men from life-threatening diseases caused by HPV; including mouth, penile and anal cancers as well as genital warts.”

Every year more than 7,500 Brits are diagnosed with mouth cancer, with the disease claiming in excess of 2,000 lives – more than testicular and cervical cancer combined.

“There has also been overwhelming support for the vaccine from health professionals and public alike,” added Dr Carter.

“A recent poll from campaign group HPV Action discovered that 97 per cent of dentists and 94 per cent of GPs believe that the national HPV vaccination programme should cover both boys and girls, we have also seen roughly 84 per cent of the public support an extended vaccination programme.

“It has become very apparent that the only certain way to protect boys effectively from HPV is through a national vaccination programme and now this has finally come to fruition we will push for it to be implemented swiftly and effectively so we can ensure that it is most effective in saving lives in the future.”