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Mouth Cancer Action Month

Treatment for mouth cancer

Mouth cancer can lead to a challenging and multifaceted treatment journey that involves various medical interventions, including surgery, radiotherapy, and chemotherapy.

Each treatment has its own set of challenges, both in the short term and long term, and understanding these is essential to providing patients with the necessary support during their recovery.

How common is each treatment for mouth cancer?

We asked 95 patients with mouth cancer which treatment they received. This is what they said.

From this, we can see that surgery is the most common treatment, followed by radiotherapy and then chemotherapy.

However, it’s important to note that many patients undergo more than one treatment. In fact, only 36% of respondents said that they had only one treatment option, while 64% had a combination of two or more treatments. Notably, 27% of all respondents had a combination of chemotherapy, radiotherapy, and surgery to manage their mouth cancer.

Chemotherapy


Common side effects

Chemotherapy, or chemo, is a common and vital treatment for mouth cancer. However, it also has a variety of side effects which can significantly impact the quality of life.

Out of 45 chemotherapy patients who answered our survey, this is what they listed as the most common side effects.

These side effects, though temporary for many, are often severe enough to disrupt daily life. Some symptoms, like fatigue, difficulty swallowing, and increased sensitivity in the mouth, persisted even after treatment ended, requiring ongoing care and management.

Patient ambassador Robert shares how his mouth cancer treatment affected his taste.

Robert Powell

And it left me with some issues, the main one for me was lack of taste.

So I used to enjoy my food and enjoy eating different foods, particularly spicy foods... Now to me, eating has just become a function that you do at certain times of day.

I can taste initially. I can tell you what it is. But by the end of the meal, it could be anything, you know. Eating a piece of chocolate, yes, I know it's chocolate, but 15 seconds later it could be butter. 

So it’s taken away a lot of the enjoyment. But you have to think of different things in food. It’s more about socialising now with the other people you’re with, or trying different things and having smaller amounts of something different each time, because it sort of refreshes your taste in some way.

Radiotherapy

Common side effects

Radiotherapy is another cornerstone of treatment for mouth cancer, though it is associated with its own set of side effects.

Just over two-thirds of our survey participants have undergone radiotherapy, and this is what they reported as the most common side effects.

Tiredness or weakness was the most prevalent side effect, affecting around 70% of patients. Skin problems, such as redness, irritation, and peeling in the treatment area, were reported by 60% of patients. A sore mouth and throat - which made eating, speaking, and swallowing difficult - was experienced by 58% of participants.

Patient ambassador Sarah shares one of the ways radiotherapy affected her.

Sarah Davies

Every time I went anywhere I had to have a washing up bowl, because you just get - I mean its horrible to talk about but anyone who has been through it will know - you get almost like this constant mucus

I felt like Ronald Weasley, in Harry Potter, when he has the slugs. That's literally what it feels like!

When I saw my consultant she went 'ooh yeah, the obigatory washing up bowl, you know, that's good to see'

 It was just normal to them and I think that makes you feel so much better because obviously, it's just part of the process.

Late side effects of radiotherapy

As well as the acute side effects people experience when they’re having treatment, there are several late side effects and long-term complications reported by patients who have had radiotherapy as part of their treatment. These include things like tooth decay, difficulty swallowing, stiffness in the jaw, neck or shoulders, lymphoedema in the head and neck, and fatigue.

We also had people report side effects such as trismus, a condition that affects the opening of the mouth, and osteoradionecrosis.

All of these side effects can have a lasting impact on daily life and can require long-term management.

Patient Sarah explains how she developed trismus.

Sarah Davies

When I went in for my final surgery to take the tumour out they did say that one of the risks was trismus. Which then I’d never heard of. 

Unfortunately I did get trismus. I've got a very severe case.

I then had to have, what was it, 35 sessions of radiotherapy, which was all focussed on this side. And that basically tightened up all the muscles to a point that it’s basically like lockjaw.

So, the opening of my mouth is limited to the point that basically how I’m talking now is the most I can open my mouth.

It means I get very bad stiffness and cramps in my jaw. Eating or drinking is really difficult. I’m limited as to what I can eat, I have to drink with a straw.

It does affect my talking at times. It can sort of make my speech sound a bit slurred, and trying to sometimes get words out. It’s not always very clear and people sort of say, “oh can you repeat that.”

It’s something I’ve learned to live with, but I think whether it would have been as severe if it had been caught earlier—I don't know, I’ll never know.

But it’s not something that can be cured once you've got it, because it is literally down to the muscles and the damage that's been done to the jaw bone. It is something that is permanent unfortunately.

Surgery


Common side effects

Surgery plays a critical role in mouth cancer treatment, but it also brings its own set of challenges. Many respondents reported physical and emotional difficulties, particularly in relation to scarring, facial disfigurement, and the impact on self-esteem. 

Functional difficulties related to eating, speaking, and movement were also commonly reported. 23% of people who have had surgery that answered our survey also indicated that surgery negatively impacted their self-esteem, primarily due to visible scarring.

In conclusion

Mouth cancer treatment significantly impacts patients’ physical health, emotional well-being, and quality of life.

The majority of respondents experienced a range of challenging side effects from surgery, radiotherapy, and chemotherapy, such as fatigue, speech and swallowing difficulties, and changes in appearance. These side effects can lead to emotional distress, including anxiety about recovery and concerns about life post-treatment.

Despite the extensive challenges patients face, many do not receive adequate support due to limitations in aftercare and resources. The survey also highlights how long-term effects, like dry mouth, pain, and speech issues, continue to affect daily living, reinforcing the need for sustained care.

To enhance patient recovery and well-being, it is vital for healthcare providers to offer comprehensive support that addresses both the physical and emotional aspects of the cancer journey, ensuring a holistic approach to recovery.

Published:

Updated:

Author: Sophie Turner

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