Side effects of vaginal cancer radiotherapy
The side effects of radiotherapy for vaginal cancer include loose poo (diarrhoea), tiredness, and skin soreness. There are immediate side effects and long term side effects.
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 if you are a woman having radiotherapy to the pelvis or abdomen.
Louise: The abdomen, the tummy, can be affected by radiotherapy, but it depends on which particular part of that we are treating as to what side effects you may experience. If we are treating the upper part of your abdomen and we are irritating your stomach, sometimes you can experience a little bit of nausea, potentially a little bit of vomiting.
This would normally start quite early on if it is going to be a problem and the doctor would prescribe you some medication to help with that.
Carla: I felt sick constantly. I was having Complan drinks and smoothies and milkshakes with fruit and things in. Jelly sweets, anything that had got sugar in that I could suck on or chew on.
And ice cream. I know it was like October/November when I had my treatment, but I was having ice cream every day.
Louise: If your bowels are being irritated by the radiotherapy, you may find you end up a little bit more gassy. Flatulence might be a bit of an issue and sometimes you can find you can end up with some diarrhoea.
Carla: I started to get really, really bad diarrhoea. And they were giving me Imodium-type tablets to combat that.
With the wind, the wind's horrible. It's not nice at all, as a lady, to have wind. There’s tablets available that I can take for that.
Louise: If you do find that you are having some issues with your bowels, always consult with the team before you take any action. It might be they recommend you make some small dietary changes to help with this, cutting out foods which are very high in fibre or very spicy foods.
If you're having issues with diarrhoea, they may also recommend some particular medication to help with that.
Some radiation treatments to the pelvis may also cause some irritation to your bladder, so you might find you need to pass urine more regularly. It may also be more urgent with you passing smaller volumes. Sometimes you may find that there's a little pain or discomfort when you're urinating, or you can't fully empty your bladder like you would do normally.
Carla: If I need to go, I need to go, and if I can't go, I've got to have pant-liners in.
Louise: We would highly recommend during your radiotherapy that you stay well hydrated. We would recommend you drink up to 2 litres of water or squash a day to ensure that this happens.
Drinks to avoid would include anything containing caffeine, so any kind of tea or coffee or decaffeinated drinks, fizzy drinks and alcohol as they all naturally aggravate your bladder.
Radiotherapy can unfortunately have an impact on a woman's sex life. This is because you can end up with some vaginal drying and also you can find that the tissues in the vagina can become a little bit tight as a result of the treatment. The radiotherapy team will support you during treatment to help with any of these particular symptoms.
Carla: You're given dilators when you first finish your treatment and you have to use it for 10 minutes every day just to keep the scar tissue from sticking together and causing an obstruction.
Louise: These are little tubes that are inserted into the vagina that just gently help stretch the tissue to prevent any scar tissue from building and any shrinkage of the muscles. We can also give you some lubrication to help with any sexual activity as well. This can help you moving forward with both your sex life, but also with future internal examinations.
Infertility is a possible side effect of radiotherapy. If you are concerned about infertility after treatment, before you do start any radiotherapy, it's best to talk to the team and they can talk you through potential fertility treatments, such as storing your eggs prior to starting treatment.
It's always best to be open with partners when you're going through any kind of treatment, especially as this may have an impact on them too. It means that you can work through the problems together.
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.
Immediate side effects
You start to develop side effects during your treatment. When they start depends on the type of radiotherapy you are having and your plan of treatment.
Side effects tend to get worse as treatment progresses and can continue after your treatment ends. But they usually begin to improve after 1 or 2 weeks.
Everyone is different and the side effects vary from person to person. You might not have all of the side effects mentioned.
Diarrhoea
Let your doctor know if you have
Passing wind
Sometimes radiotherapy causes you to pass wind more often than usual. Wind is also called flatus, flatulence, and farting. Talk to your specialist nurse, radiographer, or doctor if this is a problem for you. They can offer advice on how to cope and may be able to prescribe medicines to help.
Discomfort passing urine
Radiotherapy can make the lining of the bladder inflamed. This is called radiation cystitis.
It can make you very uncomfortable. You might have a lot of bladder pain and feel as though you need to pass urine all the time, even though you know you’ve only just been. Try to drink plenty of fluids because this will help.
Speak to your doctor or nurse if you have pain or feel you need to pass urine more often.
Skin soreness
During external radiotherapy, your vagina or skin in the treatment area is likely to become sore. Radiotherapy machines and techniques have improved and side effects are less severe than they used to be. But this is a sensitive part of the body, so some soreness is difficult to avoid.
In mild cases, you might have some soreness and reddening, similar to mild sunburn. With a more severe reaction, the area might actually break down. This can cause the area to weep.
Your nurse or radiographer will check the area and help you look after it. Your doctor might prescribe a steroid cream to put on. You can have painkillers if you need them.
Don't use any lotions, powders or creams on the treatment area without checking with your radiotherapy team first. They will give you advice at the start of your treatment about what creams to use to keep your skin moisturised. This helps to minimise the risk of side effects. This applies to both external radiotherapy and internal radiotherapy.
Ask the radiotherapy staff if there is anything you can use to soothe the area if you need to. You can help to reduce any soreness by:
- not soaking in the bath for long periods of time
- patting skin dry with a towel rather than rubbing it
Your treatment might be stopped for a week or two if your skin reaction is very bad.
Tiredness (fatigue)
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.
Feeling or being sick
You might have some sickness if you have external radiotherapy to the lower part of the tummy. But this is not common.
Tell your radiographer, nurse or doctor if you feel sick. They can arrange for you to have anti sickness tablets.
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
Long term side 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.
Your doctors will try their best to make sure you have as few side effects as possible. But some people are more sensitive than others to radiation.
Changes to your ovaries
Radiotherapy to this area will stop your ovaries from working if you have not already had your
Radiotherapy stops the production of sex hormones by the ovaries. The hormone levels start to fall about 3 months after the start of treatment. It is still important to use effective contraception during this time.
Your periods gradually stop and you get symptoms of the menopause. The symptoms may be more severe than the natural menopause. You might be able to take hormone replacement therapy (HRT) after treatment. There are gels and creams available that can help with vaginal dryness. Speak to your doctor about taking HRT.
If you have already had your menopause, your ovaries will have stopped working before your treatment. So the radiotherapy won't make as much difference to you.
It is sometimes possible to move the ovaries out of the treatment area before radiotherapy begins. This is called ovarian transposition. It is usually done by
Vaginal changes
Radiotherapy can make scar tissue form. This is more fibrous than healthy tissue, so it’s stiffer and less stretchy. Scar tissue might form around the outside of your vagina and this might narrow the entrance. You may then find that penetrative sex can be painful.
Using dilators
To prevent narrowing of the vagina your specialist nurse will teach you to stretch the vaginal opening with dilators. You usually start using them between 2 to 8 weeks after your radiotherapy ends. This depends on the practice of your radiotherapy centre.
The dilators are smooth cone shaped objects that you put into your vagina to stretch it. They come in sets of different sizes. You use them daily or 3 times a week to start with, for 5 to 10 minutes each time. You use them with a water soluble gel.
You start with one of a comfortable size. You then gradually use larger ones until your vagina is stretched enough for you to have sex comfortably.
Your doctor, nurse, or radiographer can give you a set of dilators.
It is normal not to feel like having sex for a while after treatment, so don't worry if you wait for a while. In this situation, it is important to keep your vagina open by using dilators.
Damage to the bones
Radiotherapy to the pelvis can damage the bones in the pelvic area. The bones can become weaker. This can cause pain and also increases the risk of breaks (fractures) of the pelvis or hip.
Tell your doctor if you have any hip or pelvic pain.
Bladder or bowel changes
Treatment can make the bladder less elastic. It won't stretch as far and feels full sooner. So you may find that you have to pass urine more often. This doesn't happen to everyone.
Radiotherapy can irritate the lining of the bowel. As a result, you might have loose bowel motions and they may be more frequent. Tell your doctor if this happens. You can take medicine to firm up your bowel motions and make them less frequent.
Some people could have the opposite effect and find it more difficult to have their bowels open. Talk to your doctor if you become constipated. They might need to check your bowel for a possible blockage.
You can take medicine to relieve constipation if a blockage is not the cause. A diet higher in fibre and drinking plenty of fluids might also help.
Sometimes, radiotherapy to the pelvis can cause bleeding. This will show up in your bowel movements or urine. This can be worrying, but it is not often serious.
Over a period of time, the radiotherapy causes an overgrowth of small blood vessels. As they are delicate and near the skin surface, they are more likely to bleed. Do tell your doctors so that they can check that the bleeding isn't caused by anything else.
Leg and groin swelling
One or both legs can swell (lymphoedema) if the radiotherapy affects the lymph nodes in the groin. It stops fluid from being able to drain out of the legs. In advanced vaginal cancer, this swelling is sometimes caused by the cancer, rather than treatment.
If you think you are developing swelling, tell your specialist or your nurse straight away. They can refer you to a lymphoedema specialist for assessment. The sooner it is diagnosed, the easier lymphoedema is to treat.
Severe side effects
Very rarely, where immediate side effects are particularly severe, your doctor may want to stop treatment to allow you to recover. Speak to your radiographer or specialist nurse if you have short term or long term side effects. They will be able to help you.