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MOUTH CANCER, HEAD AND NECK CANCERS > LISTEN TO THE PODCAST
Red Door Communications podcast recorded and produced by Podlab
Sponsored by Merck Serono


Interviewer:
Rachel Bannister (Red Door Communications)
Joined by:
Christine Piff (Let’s Face It)
Dr Vinod Joshi (Mouth Cancer Foundation)
Suzanne Rogers (Patient Case Study)

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TRANSCRIPT BEGIN

Rachel:
Today we're going to be talking about head and neck cancer. Head and neck cancer is often described as being a Cinderella disease. What this means is that, over the last 40 years there have been very few treatment developments in this area. And yet, prevalence is set to rise over the next 20 years.

I'm joined by Christine Piff from Let’s Face It, Dr. Joshi will be joining us over the phone from the Mouth Cancer Foundation, and Suzanne Rogers will be telling us about her experiences.

So Christine, maybe you could tell us a little bit about your experiences, and Let’s Face It.

Christine: Well it's-it's hard to believe, but it was 30 years ago that I was first told that I had facial cancer. And it was 7 years after all the surgery, um, and the reconstruction, that I was asked to make a television programme where I launched a charity because during that 7 years, I had no one, to talk to. And I felt the desolation of facial disfigurement, which, really slowly eats away at your identity, and your face is changed dramatically, that you become a different person, and yet you feel the same person inside. Um, and so it was 7 years later in 1984 that I launched, um, the charity Let’s Face It. And... the charity has helped me accept who I am and find myself again. And that's exactly what it does because facial disfigurement is... so... shocking, psychologically. It's bad enough to go through the radiotherapy, chemo and surgery. But it's the after affects; going back into your home and in society where you lived before, feeling, and looking different.

Rachel: Suzanne, maybe you could tell us a little bit about your experiences.

Suzanne: I was diagnosed with tongue cancer in July 2006. I had a mouth ulcer; what I thought to be an ulcer on my tongue, which didn't heal. And, I went to my GP after about 3 weeks as it started to get a bit more enlarged and a bit more painful. And... at first he thought it was an infection, and prescribed me antibiotics. Erm, but it didn't get any better. So I went to my dentist, and she was worried enough to refer me to a ma-maxillofacial consultant. And um, about 3 weeks later I was diagnosed with tongue cancer.

Rachel: Dr. Joshi, maybe you could clarify for us exactly what head and neck cancer encompasses.

Dr. Joshi: Cancer can occur in any part of the head and neck. Mouth cancer refers to cancers of the mouth, tongue, lips, throat, salivary glands, pharynx, larynx, sinus and other sites located in the head and neck area.

Rachel: Christine, we've said this is a growing problem, but how many people is this really affecting?

Christine: Well, surprisingly, um, there are 7,800 people diagnosed with facial cancer every year, and this has gone up by 25%. 25%, in the past 10 years.

Rachel: Dr. Joshi, what are the risk factors for head and neck cancer, and what should people be looking for?

Dr. Joshi: The risks are increased by smoking or chewing tobacco and consuming alcohol. One should really avoid these risk factors. The risk can also be reduced by having a low-meat, low-fat diet, rich in vegetables and fruit with servings of bread or beans everyday.

Rachel: Maybe you could tell us what the symptoms of head and neck cancer are, and what people should be looking out for.

Dr. Joshi: In its very early stages, mouth cancers can be easy to ignore. It's important to know what to look out for, and to do a self-check. Mouth cancer can present as a sore or ulcer in the mouth that has not healed within 3 weeks; a lump appearing anywhere in the mouth or neck; a white or red patch on the gums, tongue or lining of the mouth. Sometimes it can present as a difficulty in swallowing or chewing; or difficulty in moving the jaw and tongue. Sometimes it can present as a numbness of the tongue or other area of the mouth. Sometimes the cancer presents as a swelling of the jaw that causes a well-fitting denture to fit poorly or become uncomfortable suddenly. It can also present as a unexplained looseness of a tooth.

Rachel: Christine, why is it important for people to be so aware of the symptoms of head and neck cancer?

Christine: I think the difficulty with this one is... to actually notice. It can be there without you actu... be-before it presents itself, um, but there are signs like um... a blister on the tongue that doesn't get better, um, and if you notice it and it lasts for a while, then go to your GP, go to your dentist, er, and say that there's something here that, you know, it-it might be sinister, but it may not be, it might be quite innocent. But just go and check it out.

Rachel: Are there specific groups who might be at greater risk of getting head and neck cancer?

Christine: Er, again, difficult question to answer. Um, but I think what I-I've seen over the years of running the charity, that it is really quite widespread. Younger people now seem to be getting more and more cancers, and I think it could well be the environment that we live in. Um, people in the city. And yet there are farmers who, who have facial cancer, so that can be directly being out of doors in the sun all the time. Um, and of course, there's the same old scenario; smoking and alcohol. And I'm sure, um, that there are people who do smoke who've said 'Oh, not again. You know, we get blamed for everything'. But obviously, it is a significant factor, and should be taken into consideration.

Rachel: So, Suzanne, does this mean if I'm young and female, I'm unlikely to be affected?

Suzanne: Well, I'm twentys.., well I'm 27 now, I was 26 when I was diagnosed... and, obviously female. And... yeah, unfortunately, there's a growing trend of more younger people er, being affected, and also people that don't necessarily have the risk factors concerned. So, the vast majority of people who get, er, mouth cancer are smokers and drinkers, or one or the other. Um, and.. and I wasn't.

Rachel: Dr. Joshi, we've talked a lot about the people who might be affected by head and neck cancer, but what are the survival rates for this disease?

Dr. Joshi: Well, the survival rates differ according to the site, and earliness of detection. Overall, about 55 out of 100 diagnosed will live for at least 5 years. And about 41 out of 100 will live for at least 10 years. Unfortunately for throat cancers it is much less. Only about 35 out of every 100 will live at least 5 years. Whereas for lip cancer, it is much better. Nearly 90% of patients will be alive 5 years later. For tongue cancers, it's somewhere in-between. With just over 40% being alive 5 years later. For the rest of the oral cavity, only 47% will be alive 5 years later. Early detection can, however, improve survival.

Rachel: So, how is head and neck cancer identified? And, how is it diagnosed?

Dr. Joshi: Once the mouth cancer is suspected, it needs to be confirmed. The specialist will need to do a biopsy. A biopsy is a surgical procedure that involves removing a piece of the suspicious tissue, and sending it for examination. This is usually done under local anaesthesia. The specimen is sent to a pathology laboratory for examination. Upon completing the tissue examination, the pathologist will inform the surgeon. The biopsy not only helps in establishing the diagnosis, but it also helps develop an appropriate treatment plan. The examination often also includes having chest x-rays and a CAT scan to see the cancer spread.

Rachel: So, how is head and neck cancer treated?

Dr. Joshi: The treatment options for these head and neck cancers are surgery, radiotherapy, or chemotherapy or combinations of them. But they all have side effects. Surgery and radiotherapy causes morbidity which affect the quality of life, causing difficulties with speech, swallowing, dry mouth and facial disfigurement. Chemotherapy too, causes nausea, vomiting and painful mucositis. We really need new effective treatments that reduce the morbidity and side effects.

Rachel: So, could you both tell me how it felt when you were diagnosed. Christine?

Christine: How did I feel? It's as if... I had been kicked off the world, and the world is going on without me. And I stand there as a stranger just watching, and looking on. It was a very strange feeling. Um, but then the positive side kicked in – which it does for me, always – um, with that attitude yeah, well, okay, I have cancer, but I'm going to have it treated, and I'm going to get better.

Suzanne: Er, I was... I was very shocked. Er, I... I wasn't particularly prepared for the diagnosis, because when-when I first got the symptoms I went on the internet and I read about mouth cancer, but it always... it always said that the people most affected were... men, sort of men over 50 usually, er, people who had smoked, people who drank a lot. And erm, I've never smoked, and I-I rarely drank, so I was... I just kept thinking, surely... this is wrong, erm, you know, how can it be... er, cancer? Yeah, it took, it took a while to come to terms with... not on-not only the word cancer which is so... imbued with such... you know, everyone is scared of the word cancer. But also the fact... of coming to terms with what long- lasting effects the treatment would have.

Rachel: So, Suzanne, Christine. How easy has it been for you to get back on with things and resume your life in the way that you want to?

Suzanne: Erm, it has been hard... but I'm now almost a year down the line, and erm, I've had months and months of speech therapy and I feel like my speech has come on really well. And, erm, eating was also very difficult. I had weeks when I couldn't eat properly. Well, months, to be honest. And... and that's still a bit of an issue. There's still some foods that I avoid, and I think will probably, that will probably always be the case. But... yeah, I'm just... really grateful I'm... still... still here and I've gone back to work and I'm-I'm doing everything I used to do before, so I don't feel like it's... I've had to stop being me.

Christine: It's an ongoing um, scenario for me. It just – and for many cancer patients who's... – it's the reconstruction. Um, initially the tumour was in my sinus, and I lost half my palate and my upper teeth. I was unable to speak without an artificial palate called an obturator. Later that year I... the tumour came back, and I lost my eye, um, and it was 2 years later before I had a facial prosthesis with an eye. So... for me to accept those things and to get back to being a normal mum, and wife, was the hardest thing I have ever, ever, done.

Rachel: Suzanne, how do you view your future now?

Suzanne: I think er, one of the positive things to come out of getting ill was the fact that it was a real chance to re-focus on what I want out of life and um, my dreams and aspirations. So... I remember sitting in hospital writing a list, a sort of to-do list... erm... this will sound quite morbid but, er, writing a list of erm, what I would want people to remember me for. The sort of characteristics I would want people to think... I was like. And then that got me thinking about just the sort of things I want to do, and erm, what I want to do with my life. Erm, so there's all sorts of things on there, and one thing is um... I've always dreamt of going on safari in Africa, and erm, I'm going to be doing that this summer.

Rachel: So, Christine, if people listening to this are concerned, who should they be turning to? Who should they go and talk to?

Christine: I think professionally, you need to go to see your GP depending on your symptoms. Um, either your GP or your dentist. Um, that's vitally important. And don't leave it. We all tend to leave things. And, I know I did, um, I had been kissed by the children at playgroup where I worked, and I thought when I put my make-up on my chee – the pain was under my left eye on my cheek – um, and it was there for quite a while before I realised that when I put my head down, the pain and discomfort – there was something wrong. Um... but I was wrapped up in looking after my three children and my husband and going to work that I ignored it. It wasn't too late for me. I was one of the lucky ones. But it's the same old story with any cancer; early diagnosis is the safest.

Rachel: And, if people are looking for more information, where should they look?

Christine: Get in touch with me. Quite simple. We have the resources for recovery, and we at Let’s Face It will supply the patients with whatever they need. And we're there to talk to them one-to-one, to have regional groups, to put them in touch with other people who have similar problems, um, and to support them until they want to leave us.

Rachel: And, after your diagnosis, who did you turn to for, for advice?

Suzanne: Well, I was treated at the Queen Victoria hospital in East Grinstead. And, right from the beginning I felt very well supported by the team there. They just gave me all the information and support that I needed, and were very encouraging about... erm, the treatment and what I could expect afterwards. Realistic, yet, encouraging about erm, the fact that my, you know, my life would continue and I would get my life back, erm, once I was recovered. Erm, and the internet was also a big resource for me. Er, I turned to the Mouth Cancer Foundation website quite a lot. It has a message board where you can... talk to other patients. So, I found that useful to ask questions of other patients to... er, find out what their experiences were as well.

TRANSCRIPT END

Red Door Communications podcast recorded and produced by Podlab
Sponsored by Merck Serono


Interviewer:
Rachel Bannister (Red Door Communications)
Joined by:
Christine Piff (Let’s Face It)
Dr Vinod Joshi (Mouth Cancer Foundation)
Suzanne Rogers (Patient Case Study)

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