Side effects of radiotherapy
Radiotherapy can cause general side effects as well as more specific ones. Specific side effects depend on where your soft tissue sarcoma is in your body.
For many people, the side effects of radiotherapy wear off within a few weeks of the treatment ending. But for some, radiotherapy can cause long term side effects.
Everyone is different and the side effects vary from person to person. You may not have all the effects mentioned below.
General side effects
Hair loss happens in the treatment area. You will only have hair loss from your head if you are having radiotherapy to your head. You may lose body hair in the treatment area – for example, leg hair if your leg is being treated.
The hair may grow back but sometimes doesn't. If it does grow back, it can take up to a year and it may be patchy. Whether the hair grows back and how long it takes depends on the amount of treatment you have had.
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 ended. But it usually improves gradually.
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.
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. This may start after your radiotherapy treatment is completed. Your radiographers may give you 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.
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
Specific side effects
Radiotherapy may cause specific side effects depending on which part of the body is treated.
You may feel sick or have diarrhoea. Or you may have some abdominal pain or bladder irritation.
Radiotherapy to the head and neck can cause:
- a sore dry mouth
- thickened saliva
- difficulty in swallowing
- changes in taste
- feeling sick
Possible long term effects
Most side effects gradually go away in the weeks or months after treatment. But some side effects can continue or might start some months or years later.
Radiotherapy treatment to a joint, such as a knee or elbow, can make it stiff. Radiotherapy causes the tissue to harden (fibrosis) in the treatment area.
It is important to keep using the joint as normally as you can. Regular exercise will help you to be able to keep moving the joint and stop it from stiffening up.
Months or years after radiotherapy, some people develop lymphoedema. Lymphoedema is swelling in the area close to the radiotherapy treatment area. The radiotherapy damages the small tubes that circulate tissue fluid around the body. These are the lymphatic vessels. Fluid builds up behind the blockage and causes swelling in the tissues.
Doctors plan radiotherapy carefully to minimise the risk of lymphoedema developing. They now try to prevent it by leaving a column of untreated tissue along your arm or leg. So, they don't treat your arm or leg all the way round. If you do get swelling in your hand or foot after radiotherapy to that limb, tell your specialist.
Lymphoedema can't be cured. But there is treatment to control lymphoedema. The earlier it is diagnosed, the easier it is to control.
Fertility
People who have treatment to the pelvic area or top of the thighs may become unable to have children (infertile). This is due to the effects of radiation on the testes, or ovaries and womb. This can be very upsetting.
Women can sometimes have ovarian transposition. This is a surgery that moves your ovaries out of the field of radiation. This will lower the amount of radiation exposed to your ovaries during the treatment. It helps the ovaries to keep working properly after treatment.
Another option is egg harvesting, but this might delay treatment.
Men may be able to store sperm in a sperm bank before they have treatment.
Bowel and bladder changes
Pelvic radiotherapy can also cause:
- changes in the bowel, such as diarrhoea and wanting to poo more urgently and frequently
- irritation of the bladder or leakage of urine
Pelvic radiotherapy for woman can have side effects such as vaginal dryness and tightening. The vaginal wall tissue can become tighter and thicken.
Women are normally referred to a gynaecology oncology clinical nurse specialist. They can teach you how to use vaginal dilators. Dilators stretch the vaginal tissue. The vagina can become less stretchy and narrower due to scar tissue that forms. This can have an effect on your sex life.
Side effects usually settle down a few weeks after treatment has finished in most people. Talk to your doctor if you continue to have problems, or if they appear some time after treatment.
