Side effects of radiotherapy for mouth and oropharyngeal cancer
Side effects tend to start a few days after the radiotherapy begins. They gradually get worse during treatment. They can continue to get worse after your treatment ends. But they usually begin to improve 1 or 2 weeks after your treatment ends.
Everyone is different and the side effects vary from person to person. You may not have all of the effects mentioned.
In the video below, people affected by cancer who had radiotherapy discuss the general side effects of radiotherapy. It is 7 minutes and 51 seconds long.
Radiotherapy can cause many different side effects, such as tiredness. The side effects you get will depend on the area you're having treatment to, but there are some general side effects you might experience regardless of where your cancer is. This video is about the general side effects you might have.
On screen text: Tiredness and weakness
Martin (Radiographer): As the normal cells repair themselves from the treatment this can use a lot of the body's resources, causing tiredness.
David: After about four weeks, I started to get tired. The body was starting to weaken.
Laurel: I was tired, day and night. Getting up in the morning was like a chore. I couldn't talk for 5 minutes. I would just sleep and just sleep and just wake up and sleep again.
Martin (Radiographer): Listen to your body. Take rests if you need to. Try not to overdo things.
Laurel: Don't fight with yourself too much. Just like go at a pace and just work with your body. If you can't make it today, you can't make it today.
David: You've got to rest. You have to take the time to rest.
Mary: Just going for them small walks. They really do help you. And even if it is just walking around your house or just walking around the block.
Martin (Radiographer): Doing exercise can help with tiredness by helping you maintain energy levels.
Mary: Being outside, that's a big, massive thing as well because you're feeling the fatigue and I think getting outside, just getting a bit of fresh air that really, really did help me.
Martin (Radiographer): The tiredness you can expect to begin within the first few weeks of treatment. Once it reaches its peak, about two weeks after treatment it recovers quite quickly after that.
Mary: It's not forever. You're not going to be like this forever and I did have to tell myself that.
Laurel: Two months after treatment, I start to feel less tired and that was a way forward because things start to really improve.
On screen text:
- Rest and have short naps when you need to
- Drink plenty of water
- Eat a balanced diet
- Do some gentle exercise
- Get some fresh air
On screen text: Sore skin
Martin (Radiographer): The radiotherapy can cause soreness of the skin. This only affects the area that you are having treated. This usually starts to appear about two weeks after you start treatment. You may notice this becoming more red and may become more itchy and sore as treatment continues.
David: After about ten days I started to get red on the area that they were targeting and it just progressively got redder and redder.
Laurel: My skin was dry and at the back was just like this triangle shape thing where it was like, okay, I'm a woman of colour, but it was really, really black.
David: Wasn't too painful, it was sort of annoying, rather than painful.
Martin (Radiographer): After treatment’s finished, the skin will remain sore for up to two weeks, but then recovers quite quickly.
Laurel: I haven’t got no scarring now at all.
David: It was maybe three or four weeks and then all the blemishes disappeared front and back.
Martin (Radiographer): When you start treatment we would advise you to carry on with your normal skincare routine but as the side effects develop, then your team will advise you on which products you can use on the skin safely.
Laurel: When I'm washing myself I use a sponge and you're just literally as it were just squirt it down, you don't rub the skin at all because it's already damaged. Pat dry, don't rub.
David: I spoke to the hospital about it and it was them that recommended this cream to put on, just to alleviate the symptoms.
Martin (Radiographer): We'd recommend wearing loose clothing and keeping the treatment area covered up against the sun and wind.
Laurel: I had to change most of my wardrobe. I only wore cotton.
David: Wearing T-shirts, soft clothing, nothing that would rub.
Mary: It's important when you go outside to make sure that you do wear that headscarf, or you do wear a hat or whatever it is.
Laurel: I wouldn't go in the sun at all, at all because my skin was - I know it was too delicate.
On screen text:
- Don’t rub the area, press if it is itchy and dab your skin dry
- Don’t use perfume, perfumed soaps or lotions on the area
- Don’t shave the area
- Only use creams or dressings advised by your specialist or radiographer
- Wear loose fitting clothing
- Avoid strong sun or cold winds
- Make sure you wear sunscreen
On screen text: Hair loss
Martin (Radiographer): Radiotherapy can cause hair loss in the area that's being treated, whereas chemotherapy can cause hair loss all over the body.
Mary: 2 to 3 weeks after the radiotherapy, I was brushing my hair and loads came out on the brush. I knew it was going to happen, but it was just hard when it happened.
Martin (Radiographer): In most cases the hair will grow back. This can take a couple of months and the hair may have a slightly different colour or texture.
Mary: Mine did grow back and there's a lot of grey in it so I have to dye it. This is not my original colour. It's very slow growing back.
Martin (Radiographer): Use a simple soap to clean the area. Be gentle with the skin in that area and after washing pat the area dry with a soft towel.
On screen text:
- Radiotherapy can make hair fall out in the treatment area
- It won’t cause hair to fall out in other parts of your body
- Your hair might grow back a few weeks after treatment ends
- If your hair won’t grow back, then your doctor should tell you
- Don’t use perfume, perfumed soaps, or lotions on the area
On screen text: Your mental health
Laurel: I felt frustrated. Some days were really, really challenging where there were just tears without words.
Mary: It's a mixture of emotions. You feel angry and you feel frustrated. You lose your confidence.
Martin (Radiographer): Radiotherapy can cause a lot of emotions at various times during the treatment. You may feel sad or anxious or depressed, which is quite normal. It's good to talk to people about your experiences, whether that's your team at the hospital or friends and family.
David: I couldn't praise the team highly enough. Everybody that was involved were unbelievable and if it hadn't been for them, I just don't think I would have gotten through with it.
Mary: I did have a nurse as well and she had the experience of dealing with people that went through brain surgery, went through radiotherapy so it was just great that I could reach out.
Martin (Radiographer): Your team will be able to give you information about local patient support services that are available, that includes things like counselling and complementary therapies.
Laurel: A referral from the hospital counselling, which I attended for about a year.
Martin (Radiographer): There's also lots of support available online and in your local area.
Mary: I went on loads of different forums and I spoke to loads of different people and it really, really helped me. If I didn't do that, I don't think I would have got through most days.
Laurel: If you get a bit cranky or feel a bit low, go for it. But there's so much help out there and that's why I'm pushing forward like don't sit down in silence. It's the same thing, just get the help you need.
On screen text:
- There is help available – ask the hospital for support
- Talk to your friends and family about how you are feeling
- Ask about local support groups
- Your GP or hospital can provide counselling
- You can get help and support online through forums
If you're experiencing a side effect that hasn't been covered in this video, you can find more information on the Cancer Research UK website.
On screen text: For more information go to: cruk.org/radiotherapy/side-effects
Short term side effects
In the video below, people affected by cancer who had head and neck radiotherapy discuss the side effects of radiotherapy. It is 8 minutes and 26 seconds long.
Voice over: Radiotherapy can cause many different side effects, such as tiredness. The side effects you get will depend on the area you're having treatment to.
This video is about the side effects you might have when having radiotherapy to the head and neck.
Sore mouth
Louise: Mouth soreness and throat soreness with head and neck radiotherapy is very common unfortunately. If the soreness is on the outside on your skin, they might recommend particular creams that you can use to help with that.
If the pain is internal, you may be referred to the doctor and the doctor will suggest some medication to help control the pain.
Charlie: Probably I think it was from week 2 to week 3 when the radiotherapy side effects started really impacting me. At that point, really, I was unable to eat. The ability to take food down your food tract with that level of inflammation and ulcers was just too difficult.
Louise: Mouth soreness can continue for up to 3 months. The team will support you during that time, whether that be with some medication or some skin care advice. They'll also check your mouth quite regularly to make sure you don't have an infection which might be slowing down the recovery time.
Charlie: They always checked the condition of my mouth and made sure that it was in good health, recovering, and if there was any issues they just supported and advised me on the best way to deal with it.
Dry mouth
Charlie: My saliva glands were very close to some of the areas affected by cancer, so they did warn me that there was a high likelihood that my saliva glands would have some problems.
Louise: Radiotherapy can cause damage to the salivary glands. There are lots of things you can do to help with that. Small sips of water can ensure that your mouth stays moist. Little spritzer sprays or nebulisers, steam treatments can also help.
Charlie: Even now my saliva glands still don't work as well as they did beforehand. You'll find me sipping on water on a regular basis to offset the impact of the saliva gland limitation.
Changes in taste
Louise: You may find that your taste alters. If this is the case, you might find that food and drinks that you previously loved do taste very different. Sometimes people report they taste a bit metallic. If this is the case, please consult your dietitian and they will be able to support you with that.
Tasha: It's like a battery taste. I don't know how I know that, but that's how I'd best describe it. It’s very unpleasant. So anything you're eating, you can't taste that food. It's just metallic taste.
At the end of my treatment, it still carried on, but it was slowly dying down and then when it went, I was very happy because I ate as much as I wanted.
Weight loss
Louise: Unfortunately, weight loss with head and neck radiotherapy is very common. Obviously we don't want you to lose too much weight, so we would work very closely with the dietitian to support you.
Charlie: The clinical team in advance warned me I would lose weight. They told me to prepare for it. They told me to eat lot of calories in advance and I thought they were kidding, but the reality is, the weight did drop very, very quickly.
Louise: Initially, if you start to notice any problems eating, we would recommend you start to move to a slightly softer diet. Foods that are soft, easy to swallow, but highly nutritious.
Charlie: Soups and gravies and maybe move on to scrambled eggs and rice puddings.
Louise: If you then find that that starts to become problematic, we do have some special little drinks that you can use as a meal replacement.
Tasha: I had a smoothie drink that was given to me by the doctors. It's like a smoothie with calories in and it's a small bottle so you're just topping up what you’re missing not eating and drinking fully.
Charlie: My swallow mechanism just stopped working, so everything I had to take was being taken through the stomach tube.
Louise: Occasionally the radiotherapy can have a real impact on how easily you can swallow and if it starts to become very problematic, they may suggest they use feeding tubes to help ensure you are getting the right nutrients.
Looking after your teeth
Louise: Radiotherapy can cause some bone weakening, so as a result of that, we would recommend you are referred to a dentist before you start a course of radiotherapy.
They will look at all of your teeth and any teeth that already appear weak and damaged may be removed before you start treatment.
Tasha: The dentist and even the doctors and consultants said that after you've had radiotherapy and if it's been near the mouth area or teeth that it can make dental treatments more painful, and I did find that.
Charlie: Post treatment you have to really, really look after your teeth, so I go to the dentist every 3 months. Any problems with your teeth have to be nipped in the bud.
Changes to your voice
Charlie: They found cancer in my voice box so that was part of the treatment area. As the weeks progressed in treatment, I started losing it.
Louise: If you're having radiotherapy to your larynx, your voice box, you may well find that you end up with an altered voice. This can happen during treatment and we can't always guarantee your voice will be the same as it was after treatment.
Charlie: I lost it in total probably for maybe 2 weeks, so my wife had a peaceful couple of weeks for that period of time and it just came back. But it was quite fragile. So I learned to take it easy, and even now, 18-20 months after treatment, I can feel it if I talk too much.
Louise: We would recommend you rest your voice as much as possible and if needed, carry a pen and paper around with you, so you can continue to communicate.
Hair loss
Tasha: My hair loss from radiotherapy, you could see it weeks and months later, it slowly and gradually started to sort of go bald at the top.
Louise: Hair loss is common, but only in the area exposed to the radiation beam.
Charlie: Every hair in the treatment area, whether it was on the back of my neck or the front of my throat/neck area, had just fallen out.
Louise: The majority of hair does grow back, but we can't always guarantee that it definitely will. And it doesn't always grow back in quite the same way that it used to.
Tasha: I try to embrace it because it's part of my cancer story, but I like having my fringe and I just think I'll probably keep it.
Voice over: If you're experiencing a side effect that hasn't been covered in this video, you can find more information on the Cancer Research UK website.
Tiredness and feeling weak
You might feel tired during your treatment. It tends to get worse as the treatment goes on. You might also feel weak and lack energy. Rest when you need to.
Tiredness can carry on for some weeks after the treatment has finished but it usually improves gradually. Some people can feel very tired and exhausted.
Various things can help you to reduce tiredness and cope with it, such as exercise. Some research has shown that taking gentle exercise can give you more energy. It's important to balance exercise with resting.
Feeling or being sick
You might feel sick at times. You can have anti sickness medicines. Let your treatment team know if you feel sick.
Skin problems in the treatment area
Your skin might go red or darker in the treatment area. You might also get slight redness or darkening on the other side of your body. This is where the radiotherapy beams leave the body.
The red or darker areas can feel sore. Your radiographers will give you advice on washing the area and creams to soothe your skin. The soreness usually goes away within 2 to 4 weeks of ending the treatment. But your skin might always be slightly darker in that area.
During your radiotherapy treatment, the skin might break down around the treatment area. Your nurse will use special dressings to cover and protect the area. The area usually heals up over a couple of weeks.
Tell the radiotherapy staff if you notice any skin changes
Loss of appetite
You may lose your appetite because of radiotherapy. Having a sore, dry mouth can make eating difficult. You may also feel sick because of radiotherapy. This will make you feel less like eating.
Hair loss in the treatment area
Radiotherapy causes hair loss in the area of treatment. It may also cause hair loss where the radiation beam leaves the body (the exit site).
It usually starts to grow back a few weeks after treatment. Ask your radiotherapy team to show you where you will lose your hair.
Mouth problems
Mouth problems caused by radiotherapy may include:
Your mouth and throat might get sore. It may be painful to swallow drinks or food. You will have mouth washes to keep your mouth healthy.
You can have painkillers to reduce the soreness. Take them half an hour before meals to make eating easier.
Tell your doctor or nurse if your throat is sore.
Your mouth might get very dry, which can be uncomfortable. Radiotherapy can damage the glands that produce saliva. Saliva is important for taste, swallowing, and speech.
Regular mouth care can prevent a dry mouth in some people. But sometimes problems can still happen. You can do several things to help with a dry mouth. Some of the following tips might help.
- Sip drinks often to keep your mouth moist.
- Suck on ice cubes, ice lollies or sugar free sweets.
- Moisten your food with sauces, gravy, cream, custard or ice cream.
- Chewing sugarless gum can make your salivary glands produce more saliva.
- Use lip balm to keep your lips moisturised.
- Use a soft toothbrush to clean your teeth and tongue, use moistened cotton wool if you can’t use a toothbrush for some reason.
- Ask your doctor about gels or lozenges that stimulate saliva and artificial sprays.
Having a dry mouth can become a longterm side effect of radiotherapy. Speak to your doctor if this is a problem for you.
This can develop during treatment. Doing regular mouth care and using mouthwashes can help. Speak to your doctor or specialist nurse if you have bad breath.
Pain in the mouth and face
It is common to have pain in the mouth or face during and after radiotherapy. Speak to your doctor or specialist nurse if you have pain. They can prescribe painkillers.
Difficulty swallowing
During and after treatment, you might have difficulty swallowing.
You may see a speech and language therapist (SLT) before you start treatment if this is likely to affect your swallowing. An SLT can assess your swallowing during and after treatment. They can teach exercises to support you with swallowing difficulties. And they work with a dietitian if you are finding it difficult to eat.
You can have feeds through a nasogastric tube that goes up your nose and down into your stomach. Or you can have a PEG tube (percutaneous endoscopic gastrostomy tube) that goes through the skin into your stomach. Your nurse or dietician will tell you more about this if you need to have one. They will also show you and your relatives how to give the feeds.
Difficulty opening your mouth
Radiotherapy can damage the nerve that controls the muscles that move our mouth. This problem is called trismus. Your doctor or nurse will give you exercises to help strengthen your muscles and to prevent this from becoming a long term problem.
Taste changes
Your food may taste different. Some people often describe having a metallic taste, but others may lose their taste completely. This usually gets better a few weeks after your treatment has finished.
Tips:
Long term side effects
Swelling (lymphoedema)
After radiotherapy to treat a head and neck cancer, you are at risk of getting swelling called lymphoedema in your neck or face. Lymphoedema is pronounced lim-fo-dee-ma.
Lymph fluid is in all body tissues. It comes from the tiny blood vessels into the body tissues. Usually, it drains back into the bloodstream through channels called lymph vessels. These are part of the lymphatic system.
A build up of lymph fluid in an area of the body can happen if lymph drainage channels or lymph nodes are blocked, removed, or damaged.
Lymphoedema in the head or neck can also cause symptoms inside your mouth and throat. For example, swelling of your tongue and other parts of your mouth.
Tell your doctor or nurse straight away if you:
- have any swelling in the head or neck area or a feeling of fullness or pressure
- find it difficult to swallow
- have changes in your voice
Lymphoedema is easier to control if treated early. It's important that you are referred to a lymphoedema specialist if you have signs of swelling. This is usually a nurse or physiotherapist.
Unfortunately, it is not possible to cure lymphoedema. But things can be done to reduce the swelling and help you feel better. For example, positioning and lymphoedema exercises can help.
Hardening of underlying tissue
Radiotherapy can cause the underlying tissue to become firmer. This is also called fibrosis. Speak to your radiographer about what you can do to help prevent this from happening.
An increased chance of dental decay
Your saliva normally forms a protective film over your teeth. Having a permanently dry mouth increases the chance of tooth decay. So, you need to take special care and do regular mouth care throughout the day.
Damage to the jawbone
Radiotherapy can sometimes damage the jawbone and break down the bone. This is because radiotherapy can reduce the blood supply to the bone. This is called osteoradionecrosis. This is rare but it can happen months or years after your treatment has finished. Symptoms include pain and swelling in your gums.
Before your radiotherapy, you usually see a specialist dentist. They can remove damaged or broken teeth and make sure your dentures fit properly.
They will also show you how to keep your mouth and teeth clean. You will need to do this during your radiotherapy and for a few months afterward, or sometimes longer.
Side effects if you have chemotherapy with radiotherapy
Chemotherapy combined with radiotherapy can make some side effects worse. Combining these treatments is called chemoradiotherapy.
