What is mitomycin and fluorouracil (5FU) with radiotherapy?

This information is about a chemotherapy treatment called mitomycin and fluorouracil (5FU), when it is given with radiotherapy. When chemotherapy and radiotherapy are given together, it is called chemoradiation.

In this information, we call fluorouracil by its more common name 5FU.

Mitomycin and fluorouracil (5FU) with radiotherapy is used to treat anal cancer and muscle-invasive bladder cancer. It may sometimes be used to treat other cancers such as vulva cancer

It is best to read this information with our general information about chemotherapypelvic radiotherapy and the type of cancer you have.

Your doctor will talk to you about this treatment and its possible side effects before you agree (consent) to have treatment.

DPD testing before treatment

Before starting this treatment, you should have a blood test to check whether you have low levels of an enzyme called DPD. This is called DPD deficiency. People who have low DPD levels can develop serious or life-threatening side effects if they have 5FU. If you have DPD deficiency, this can affect the treatments that are available for you.

You will not know without a test if you have DPD deficiency, as there are no symptoms. Testing can detect most cases of DPD deficiency, but not all cases. You can talk to your cancer doctor about your risk of having DPD deficiency before you start treatment.

How chemotherapy is given

You will be given mitomycin and 5FU in the chemotherapy day unit or during a stay in hospital. A chemotherapy nurse will give it to you.

During treatment you usually see a cancer doctor, a chemotherapy nurse or a specialist nurse, and a specialist pharmacist. This is who we mean when we mention doctor, nurse or pharmacist in this information.

Before or on the day of treatment, a nurse or person trained to take blood (phlebotomist) will take a blood sample from you. This is to check that your blood cells are at a safe level to have chemotherapy.

You will see a doctor or nurse before you have chemotherapy. They will ask you how you have been feeling. If your blood results are okay, the pharmacist will prepare your chemotherapy. Your nurse will tell you when your treatment is likely to be ready.

How mitomycin and 5FU are given with radiotherapy

You start the chemotherapy and radiotherapy on the same day. Radiotherapy is then given once a day, Monday to Friday, for 4 to 7 weeks. The number of weeks depends on the type of cancer you have. You will have chemotherapy during the first week of your treatment, and again in week 4 or 5.

On the first day of treatment

Your nurse usually gives you anti-sickness (anti-emetic) drugs before the chemotherapy. The chemotherapy drugs can be given through:

  • a short thin tube the nurse puts into a vein in your arm or hand (cannula)
  • a fine tube that goes under the skin of your chest and into a vein close by (central line)
  • a fine tube that is put into a vein in your arm and goes up into a vein in your chest (PICC line).

Side effects while mitomycin is being given

Your nurse gives you mitomycin as an injection directly into your cannula or line, with a drip (infusion) to flush it through. Some people might have side effects while they are being given mitomycin or shortly after they have it.

Allergic reaction

Rarely, some people have an allergic reaction while having this treatment. Signs of a reaction can include:

  • feeling hot or flushed
  • a skin rash
  • itching
  • shivering
  • feeling dizzy
  • a headache
  • feeling breathless
  • swelling of your face or mouth
  • pain in your back, tummy or chest.

Your nurse will check you for signs of a reaction during your treatment. If you feel unwell or have any of these signs, tell them straight away. If you do have a reaction, it can be treated quickly.

Sometimes a reaction can happen a few hours after treatment. If you get any signs or feel unwell after you get home, contact the hospital straight away.

The drug leaks outside the vein

If this happens it can damage the tissue around the vein. This is called extravasation. Extravasation is not common but if it happens it is important that it is dealt with quickly. Tell your nurse straight away if you have any stinging, pain, redness or swelling around the vein or if it feels uncomfortable around where the drip goes in.

If you get any of these symptoms after you get home, contact the doctor or nurse straight away on the number they gave you.

Having 5FU

After the mitomycin, you have 5FU. This is usually given through a small pump, which the nurse connects to your central or PICC line. You wear the pump on your belt or carry it in a bag. It gives the drug slowly over 4 to 5 days.

Your chemotherapy nurse will explain how to look after the pump. They will also explain what to do if there is a problem.

Some people may stay in hospital and have 5FU through a drip over 4 to 5 days.  

Having radiotherapy

After the 5FU is started, you have your first radiotherapy treatment. Often, you can have radiotherapy in the same hospital and on the same day as you have chemotherapy. But you may need to have chemotherapy at one hospital, then go to a different hospital the next day to have radiotherapy.

Going home

Most people have 5FU through a pump and can go home after the first radiotherapy treatment. But if you have a cannula, you will stay in hospital until the 5FU is finished. You will still have radiotherapy each day while you are in hospital.

Before you go home, the nurse or pharmacist will give you anti-sickness (anti-emetic) drugs to take. They may also give you anti-diarrhoea or other tablets to help with other side effects. Take all your tablets exactly as they have explained to you.

The next days and weeks

You come back to the hospital for radiotherapy each weekday, for 4 to 7 weeks. The number of weeks depends on the type of cancer you have. When the 5FU pump is empty, you go to the chemotherapy day unit and the nurse will disconnect it, or a district nurse will disconnect the pump for you at home.

Week 4 or 5 of treatment

In week 4 or 5 of radiotherapy, the nurse will connect a 5FU pump to your line again for 4 to 5 days. You have this done at the chemotherapy day unit. Again, when the 5FU pump is empty, you go to the chemotherapy day unit and the nurse will disconnect it, or a district nurse will disconnect the pump for you at home.

About side effects

We explain the most common side effects of this treatment here. We also include some less common side effects. You may get some of the side effects we mention, but you are unlikely to get all of them. 

Radiotherapy also causes side effects. We have more information about the possible side effects of radiotherapy and how to manage them.

You may also have some side effects that we haven’t listed here. Always tell your doctor, nurse or pharmacist about any side effects you have.

Your doctor can give you drugs to help control some side effects. It is important to take them exactly as your nurse or pharmacist explains. This means they will be more likely to work for you. Your nurse will give you advice about managing your side effects. After your treatment is over, most side effects start to improve.

Serious and life-threatening side effects

Some cancer treatments can cause severe side effects. Rarely, these may be life-threatening. Your cancer doctor, nurse or pharmacist can explain the risk of these side effects to you.

If you have low levels of an enzyme called DPD (DPD deficiency), you may have a higher risk of severe or life-threatening side effects.

Contact the hospital

Your nurse will give you telephone numbers for the hospital. If you feel unwell or need advice, you can call them at any time of the day or night. Save these numbers in your phone or keep them somewhere safe.

More information

We cannot list every side effect for this treatment. There are some rare side effects that are not listed. You can visit the electronic Medicines Compendium (eMC) for more detailed information.

Common side effects

Risk of infection

This treatment can reduce the number of white blood cells in your blood. These cells fight infection. If the number of white blood cells is low, you are more likely to get an infection. A low white blood cell count is sometimes called neutropenia.

An infection can be very serious when the number of white blood cells is low. It is important to get any infection treated as soon as possible. Contact the hospital straight away on the 24-hour contact number you have been given if:

  • your temperature goes over 37.5°C (99.5°F)
  • you suddenly feel unwell, even with a normal temperature
  • you have symptoms of an infection
  • your temperature goes below 36°C (96.8°F).

Symptoms of an infection include:

  • feeling shivery and shaking
  • a sore throat
  • a cough
  • breathlessness
  • diarrhoea
  • needing to pass urine (pee) a lot, or discomfort when you pass urine.

It is important to follow any specific advice your cancer treatment team gives you.

The number of white blood cells will usually return to normal before your next treatment. You will have a blood test before having more treatment. If your white blood cell count is low, your doctor may delay your treatment for a short time, until your cell count increases.

Bruising and bleeding

This treatment can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot.

If the number of platelets is low, you may bruise or bleed easily. You may have:

  • nosebleeds
  • bleeding gums
  • heavy periods
  • blood in your urine (pee) or stools (poo)
  • tiny red or purple spots on the skin that may look like a rash.

Tell your doctor if you have any unexplained bruising or bleeding. You may need a drip to give you extra platelets. This is called a platelet transfusion.

Anaemia (low number of red blood cells)

This treatment can reduce the number of red blood cells in your blood. Red blood cells carry oxygen around the body. If the number of red blood cells is low, this is called anaemia. You may have symptoms such as:

  • pale skin
  • lack of energy
  • feeling breathless
  • feeling dizzy and light-headed.

Tell your doctor or nurse if you have these symptoms.

If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.

Diarrhoea

This treatment may cause severe diarrhoea. Diarrhoea means passing more stools (poo) than is usual for you, or having watery or loose stools. If you have a stoma, it will be more active than usual.

Your hospital team may give you anti-diarrhoea drugs to take at home.

If you have diarrhoea or a mild increase in stoma activity:

  • follow any advice from your cancer team about taking anti-diarrhoea drugs
  • drink at least 2 litres (3½ pints) of fluids each day
  • avoid alcohol, caffeine, milk products, high-fat foods and high-fibre foods.

Contact the hospital straight away if:

  • you have diarrhoea at night
  • you have diarrhoea more than 4 times in a day
  • you have a moderate or severe increase in stoma activity
  • the anti-diarrhoea drugs do not work within 24 hours.

You may need to go to hospital to have fluids through a drip.

Feeling sick

You may feel sick in the first few days after treatment. Your doctor will give you anti-sickness drugs to help prevent or control sickness. Take the drugs exactly as your nurse or pharmacist tells you. It is easier to prevent sickness than to treat it after it has started.

If you feel sick, take small sips of fluids and eat small amounts often. If you continue to feel sick, or if you vomit more than once in 24 hours, contact the hospital as soon as possible. They will give you advice and may change the anti-sickness drug to one that works better for you.

Tell your doctor straightaway if you notice any blood in your vomit or it looks like coffee grounds. Or if there is blood in your stool (bowel motion) or your stool is black.

Sore mouth and throat

This treatment may cause a sore mouth and throat. You may also get mouth ulcers. This can make you more likely to get a mouth or throat infection. Use a soft toothbrush to clean your teeth or dentures in the morning, at night and after meals.

If your mouth or throat is sore:

  • tell your nurse or doctor – they can give you a mouthwash or medicines to help
  • try to drink plenty of fluids
  • avoid alcohol, tobacco, and foods that irritate your mouth and throat.

Sucking ice chips may sometimes help relieve mouth or throat pain. But if you are having radiotherapy to the head or neck, do not suck on ice. It can cause damage.

Hair loss

Your hair may get thinner but you are unlikely to lose all the hair from your head. Hair loss usually starts about 3 to 4 weeks after starting chemotherapy. It is almost always temporary and your hair will usually grow back after treatment ends. Your nurse can talk to you about ways to cope with hair loss.

Skin changes

Chemotherapy may affect your skin and nails. Your doctor or nurse can tell you what to expect.

If your skin feels dry, try using an unperfumed moisturising cream every day. You may get a rash, which may be itchy. During treatment and for several months afterwards, you will be more sensitive to the sun and your skin may burn more easily than usual. You can still go out in the sun but use a suncream with a sun protection factor (SPF) of at least 30, and cover up with clothing and a hat. Your skin may darken. It will return to its normal colour after you finish treatment.

Radiotherapy can cause a skin reaction in the area being treated. This may be worse when you are having chemoradiation.

Always tell your doctor or nurse about any skin changes. They can give you advice and may prescribe creams or medicines to help. Any changes to your skin are usually temporary and improve when treatment finishes.

Sore and red palms of hands and soles of feet

You may get sore and red palms of hands and soles of feet. The skin may also begin to peel. This is called palmar-plantar or hand-foot syndrome. It usually gets better after treatment ends.

Tell your doctor or nurse about any changes to your hands or feet. They can give you advice and prescribe creams to improve any symptoms you have. It can help to:

  • keep your hands and feet cool
  • moisturise your hands and feet regularly
  • avoid tight-fitting socks, shoes and gloves.

Effects on the lungs

This treatment can cause changes to the lungs. Tell your doctor if you develop:

  • a cough
  • wheezing
  • breathlessness.

You should also tell them if any existing breathing problems get worse. You may have tests to check your lungs.

Difficulty breathing

5FU can cause a sudden tightness in your chest, making it difficult to breath. This can happen if the muscles in your airway contract for a short time (spasm). This can also cause a cough or wheeze. Contact your doctor straight away if you have difficulty breathing.

Eye problems

This treatment may make your eyes feel sore, red and itchy (conjunctivitis). Your doctor will prescribe eye drops to help prevent this. It is important to use these as you are told to.

This treatment may also make your eyes more sensitive to light and cause blurry vision. If you have pain or notice any change in your vision, always tell your doctor or nurse.

Changes in the way the heart works

5FU can affect how the heart works. You may have tests to see how well your heart is working. These may be done before, during and after treatment.

It is still possible for the heart to be affected even if these test results are normal. Very rarely, this can cause heart failure or a heart attack. The risk of this happening is very low (less than 1 in 100 or 1%). But it is important that you know about it.

Call your doctor straight away on the 24-hour number the hospital has given you if you have any of these symptoms at any time during treatment:

  • pain or tightness in your chest
  • breathlessness
  • changes to your heartbeat.

If you cannot get through to your doctor, call the NHS urgent advice number which is 111.

Less common side effects

Effects on nervous system

Rarely 5FU can affect the nervous system. Contact the hospital straight away for advice if you develop any of the following:

  • confusion
  • mood changes (such as feeling excitable or agitated)
  • drowsiness
  • difficulty with speech, balance, movement or coordination.

Your doctor or nurse will assess you and give you treatment if needed.

Effects on the kidneys

This treatment can affect how your kidneys work. This is usually mild and goes back to normal after treatment.

Sometimes mitomycin can cause a kidney problem called haemolytic-uraemic syndrome (HUS). This is very rare but it can be serious. Tell your doctor if you feel tired and breathless, or if you have any bruising or bleeding you cannot explain.

You will have blood tests during treatment to check how well your kidneys are working. If your doctor thinks you have HUS, they will start you on treatment straight away.

It is important to drink at least 2 litres (3½ pints) of fluids a day to help protect your kidneys.

Other information

Blood clot risk

Cancer and some cancer treatments can increase the risk of a blood clot. Symptoms of a blood clot include:

  • throbbing pain, redness or swelling in a leg or arm
  • suddenly feeling breathless or coughing
  • sharp chest pain, which may be worse when you cough or take a deep breath.

If you have any of these symptoms, contact the hospital straight away on the 24-hour contact number you have been given. If you cannot get through to your doctor, call the NHS urgent advice number on 111.

A blood clot is serious, but it can be treated with drugs that thin the blood (anticoagulants). Your doctor or nurse can give you more information.

You can help reduce the risk of developing a blood clot by:
  • staying active during treatment
  • drinking plenty of fluids, especially water.

You may be given anticoagulants to help prevent a clot.

Other medicines

Some medicines can affect how this treatment works or be harmful when you are having it. Always tell your cancer doctor about any drugs you are taking or planning to take, such as:

  • medicines you have been prescribed
  • medicines you buy in a shop or chemist
  • vitamins, herbal drugs and complementary therapies.

Tell other doctors, pharmacists or dentists who prescribe or give you medicines that you are having this cancer treatment.

You can visit the electronic Medicines Compendium (eMC) for more detailed information about your treatment.

Vaccinations

Vaccinations can reduce your risk of getting certain infections. Your doctor or nurse may talk to you about having vaccinations.

Doctors usually recommend that people with cancer have a flu vaccination and a coronavirus vaccination. These are both inactivated vaccinations that can help reduce the risk of infection. People with weak immune systems can have these, as they are not live vaccinations.

If your immune system is weak, you need to avoid live vaccinations. This is because they can make you unwell. Live vaccines, such as shingles, contain a very weak version of the illness they are vaccinating you against. Your cancer doctor or GP can tell you more about live and inactivated vaccinations.

Fertility

Some cancer drugs can affect whether you can get pregnant or make someone pregnant. If you are worried about this, it is important to talk with your doctor before you start treatment.

Contraception

Your doctor will advise you not to get pregnant or make someone pregnant while having this treatment. The drugs may harm a developing baby. It is important to use contraception during your treatment and for a while after treatment finishes. Your doctor, nurse or pharmacist can tell you more about this.

Sex

If you have sex during this course of chemotherapy, you need to use a condom. This is to protect your partner in case there is any chemotherapy in semen or vaginal fluids.

You may be advised to wait a few weeks until after pelvic radiotherapy before having sex. This is to allow any inflammation and side effects to settle. Ask your doctor or nurse for advice on this, as it can vary. 

Breastfeeding

You are advised not to breastfeed while having this treatment, or for some time after treatment finishes. This is because the drugs could be passed to the baby through breast milk.

Your doctor or nurse can give you more information.

Medical and dental treatment

If you need medical treatment for any reason other than cancer, always tell the doctors and nurses you are having cancer treatment. Give them the contact details for your cancer doctor so they can ask for advice.

If you think you need dental treatment, talk to your cancer doctor or nurse. Always tell your dentist you are having cancer treatment.