About this ebook

This eBook is about cancer of the cervix(cervical cancer). It is for anyone who has been diagnosed with cervical cancer. There is also information for carers, family members and friends.

The eBook explains the signs and symptoms of cervical cancer, and how it is diagnosed and treated. It also has information about emotional, practical and financial issues.

We hope it helps you deal with some of the questions or feelings you may have. We cannot give advice about the best treatment for you. You should talk to your doctor, who knows your medical history.

How to use this eBook

This eBook is split into sections to help you find what you need. You do not have to read it from start to finish. You can use the contents list to help you.

It is fine to skip parts of the eBook. You can always come back to them when you feel ready.

At the end of the eBook, there are details of other organisations that can help.

Quotes

In this eBook, we have included quotes from people who have had cervical cancer, which you may find helpful. This includes Alison, who is on the cover of this eBook. These are from people who have chosen to share their story with us. To share your experience, visit macmillan.org.uk/shareyourstory

For more information

If you have more questions or would like to talk to someone, call the Macmillan Support Line free on 0808 808 00 00, 7 days a week, 8am to 8pm, or visit macmillan.org.uk

If you would prefer to speak to us in another language, interpreters are available. Please tell us, in English, the language you want to use.

If you are deaf or hard of hearing, call us using NGT (Text Relay) on 18001 0808 808 00 00, or use the NGT Lite app.

We have some information in different languages and formats, including audio, eBooks, easy read, Braille, large print and translations. To order these, visit macmillan.org.uk/otherformats or call 0808 808 00 00.

The cervix and cervical cancer

What is cancer?

Cells are tiny building blocks that make up the body’s organs and tissues. Cells receive signals from the body, telling them when to grow and when to divide to make new cells. This is how our bodies grow and heal. These cells can become old, damaged or no longer needed. When this happens, the cell gets a signal from the body to stop working and die.

Sometimes these signals can go wrong, and the cell becomes abnormal. The abnormal cell may keep dividing to make more and more abnormal cells. These can form a lump, called a tumour.

Not all tumours are cancer. Doctors can tell if a tumour is cancer by taking a small sample of cells from it. This is called a biopsy. The doctors examine the sample under a microscope to look for cancer cells.

A tumour that is not cancer (a benign tumour) may grow, but it cannot spread to anywhere else in the body. It usually only causes problems if it grows and presses on nearby organs.

A tumour that is cancer (a malignant tumour) can grow into nearby tissue.

Sometimes cancer cells spread from where the cancer started (the primary site) to other parts of the body. They can travel around the body in the blood or through lymph fluid which is part of the lymphatic system. When these cancer cells reach another part of the body, they may grow and form another tumour. This is called a secondary cancer or a metastasis.

Some types of cancer start from blood cells. Abnormal cells can build up in the blood, and sometimes the bone marrow. This is where blood cells are made. These types of cancer are sometimes called blood cancers.

The cervix

The cervix is the lower part of the womb (uterus) that joins to the top of the vagina. It is sometimes called the neck of the womb. It is the part of the womb that opens (dilates) during childbirth to allow a baby to be born. People who have a cervix include women, transgender (trans) men and people assigned female at birth.

The womb is a muscular, pear-shaped organ. The lining of the womb is shed each month when you have your period.

Cervix and surrounding structures

Cervical cancer and lymph nodes

The lymphatic system helps to protect us from infection and disease. It also drains lymph fluid from the tissues of the body before returning it to the blood. The lymphatic system is made up of fine tubes called lymphatic vessels that connect to groups of lymph nodes throughout the body.

Lymph nodes (sometimes called lymph glands) are small and bean shaped. They filter bacteria (germs) and disease from the lymph fluid. When you have an infection, lymph nodes often swell as they fight the infection.

Sometimes, cancer can spread through the lymphatic system. If cervical cancer spreads in this way, it is most likely to affect the lymph nodes in or above the pelvis.

Pelvic lymph nodes

About cervical cancer

Each year, more than 3,200 people are diagnosed with cervical cancer in the UK. This type of cancer can affect all ages.

Cervical cancer develops very slowly from abnormal cell changes in the cervix. These changes do not cause any symptoms, but they may be found with cervical screening tests. If the tests show abnormal cell changes, treatment can prevent cancer developing.

We have more information about cervical screening and treating abnormal cell changes in our booklet Understanding cervical screening.

Types of cervical cancer

There are two main types of cervical cancer. The most common is squamous cell carcinoma. This develops from a type of cell that covers the outside of the cervix, at the top of the vagina.

The other type is adenocarcinoma. This develops from a different type of cell found in the cervical canal (the endocervix).

Rarer types of cervical cancer

Other types of cervical cancer include:

- adenosquamous carcinoma

- clear cell carcinoma

- neuroendocrine carcinoma or small cell carcinoma

- of the cervix

- lymphoma

- sarcoma.

These types are much less common and may be treated differently. If you need more information, our cancer support specialists may be able to help.

Risk factors for cervical cancer

Certain things called risk factors may increase the risk of developing cervical cancer. Having a risk factor does not mean you will get cancer. And not having a risk factor does not mean that you will not get it.

HPV

The main risk factor for cervical cancer is an infection called the human papilloma virus (HPV). There are more than 100 types of this virus. Some types of HPV can affect the cervix. The types that cause abnormal cell changes in the cervix are called high-risk HPV.

Usually, the body’s immune system gets rid of the infection naturally. There are no symptoms and often the virus does not cause damage. Most people will never know they had it.

In some people, the immune system does not get rid of the infection and the virus stays in the body for longer. We do not know exactly why this is. If the cervix is affected by HPV for a long time, the virus can cause damage that may eventually cause cancer.

HPV is very common, and most people are infected with it at some point. It can affect all sexual orientations and anyone who has ever been sexually active. This includes people in a long-term relationship with one partner. HPV may still affect you even if you have not been sexually active for some years.

The virus can live on the skin around the whole genital area. It passes easily from person to person during any type of sexual contact, including skin-to-skin genital contact, or sharing sex toys. Using a condom or other barrier contraception may reduce your risk of HPV infection, but it does not offer complete protection.

Cervical cancer itself is not infectious. You cannot catch cancer or pass it on to other people.

The NHS offers a vaccine to children between the ages of 11 and 13 to prevent HPV. You can find out more at nhs.uk/conditions/vaccinations/hpv-human-papillomavirus-vaccine

A weak immune system

Your immune system helps protect your body from infection and illness. A weak immune system is less likely to get rid of infections like HPV. Your immune system can be weakened by:

- smoking

- not eating a healthy, balanced diet

- some conditions, such as HIV.

Smoking

Your risk of developing cervical cancer is higher if you smoke. This may be because:

- smoking makes your immune system less effective at getting rid of HPV

- the chemicals in tobacco can damage your cells.

If you want to stop smoking:

- in England, contact NHS Smokefree

- in Scotland, contact Quit Your Way Scotland

- in Wales, contact Help Me Quit

- in Northern Ireland, contact Stop Smoking.

See the end of the eBook for contact details of these services.

Contraceptive pill

If you take the contraceptive pill for more than five years, this may increase your risk of developing cervical cancer. Usually, the benefits of taking the pill outweigh the risks.

Regular cervical screening tests can reduce your risk by finding and treating abnormal changes before cancer develops.

Symptoms of cervical cancer

Common symptoms of cervical cancer can include:

- heavier periods than you normally have

- vaginal bleeding between periods

- vaginal bleeding after sex

- vaginal bleeding after the menopause (after you have stopped having periods).

Other symptoms include:

- a smelly vaginal discharge

- urine infections that keep coming back

- pain in the lower tummy or back.

Very early-stage cervical cancer may not cause any symptoms. It is usually found and treated because of cervical screening tests. We have more information in our booklet Understanding cervical screening.

If you get symptoms between your regular cervical screening appointments, do not wait for your next appointment. Talk to your GP or practice nurse and get the symptoms checked. These symptoms can be embarrassing, but your GP or practice nurse will understand.

Diagnosing cervical cancer

How cervical cancer is diagnosed

If you have symptoms, you usually start by seeing your GP (local doctor). They will examine you and may refer you to the hospital for a specialist assessment and tests. If your GP thinks you may have cancer, they will refer you urgently to the hospital.

Cervical cancer may also be diagnosed during cervical screening. This is not common but sometimes happens. To diagnose cervical cancer, you usually have the following tests:

- A test called a colposcopy, to look at the cervix.

- Samples of cells (biopsies) taken from the cervix. You may have these taken during the colposcopy, or during another test such as LLETZ, NETZ or cone biopsy. After the test, the samples are checked at a laboratory for cancer cells.

It is normal to have some bleeding or discharge after a biopsy. Your doctor or nurse will explain what to expect. They may advise you not to have penetrative sex, use tampons or go swimming for a time. This is to reduce the risk of infection and to give the cervix time to heal.

Biopsy results may take 2 or 3 weeks. Ask your doctor or nurse when you will get the results.

Sometimes a LLETZ or cone biopsy removes all the cancer cells from the cervix. For very early stage cervical cancer, this may be the only treatment needed.

‘Once the consultant had shared my diagnosis, I didn’t hear much else for what seemed an eternity. Jane, my Macmillan nurse, recognised this and halted the conversation saying to me, “You really weren’t expecting that were you?”’ Alison, diagnosed with cervical cancer

Colposcopy

This test uses a microscope called a colposcope to look closely at the cervix. You usually have it done at a hospital outpatient clinic. It shows any abnormal areas of the cervix and how abnormal these are.

A specialist doctor or nurse will do the colposcopy. The test takes 15 to 20 minutes.

When you are ready, you undress from the waist down. You then lie on your back on an examination couch. Some clinics have couches with foot or leg supports that you can rest your legs up on. You will be asked to lie with your knees bent and apart.

Getting ready for a colposcopy

The doctor or nurse gently puts an instrument called a speculum into the vagina. This holds the vagina open so that they can see the cervix. It should not hurt but sometimes it can feel uncomfortable.

The doctor or nurse puts a liquid on the cervix to show any abnormal areas. They then shine a light onto the cervix and look at it through the colposcope. The colposcope is on a stand outside your body, between your legs or feet.

During the colposcopy, you may be able to see the cervix on a monitor in the room. You can ask to have the monitor turned away from you if you prefer.

How a colposcopy is done

Large loop excision of the transformation zone (LLETZ)

Large loop excision of the transformation zone (LLETZ) is a common way to remove abnormal cells from the cervix. It is sometimes called LEEP (loop electrosurgical excision procedure). It takes about 5 to 10 minutes and is usually done under a local anaesthetic as an outpatient.

If a larger area of the cervix is removed, you may need a general anaesthetic and may stay in hospital for the day or overnight.

Some local anaesthetic is used to numb the cervix. Then the doctor or nurse removes the abnormal area using a thin, loop-shaped tool. The loop is heated with an electric current. It cuts and seals the tissue at the same time. This should not be painful, but you may feel some pressure inside the cervix.

Needle excision of the transformation zone (NETZ)

Needle excision of the transformation zone (NETZ) is similar to a LLETZ. The main difference is that the thin wire used to cut away the affected area is straight, instead of in a loop.

Cone biopsy

A cone biopsy is a small operation to cut a small, cone-shaped piece of tissue from the cervix. This is usually done under a general anaesthetic and you may need to stay overnight in hospital.

Afterwards, you may have a small pack of gauze (like a tampon) in the vagina to prevent bleeding. You may also have a tube to drain urine from the bladder while the gauze pack is in place. The gauze pack and tube are usually removed within 24 hours. Then you can go home.

Further tests

If the colposcopy or biopsies show you have cervical cancer, you will have further tests to check:

- whether the cancer has spread beyond the cervix (called staging)

- your general health.

These tests help your doctors plan your treatment. You may have some of the following tests.

Blood tests

Blood tests can check your general health and the number of blood cells in your blood (blood count). They can also check how well your kidneys and liver are working.

Chest x-ray

This uses x-rays to take a picture of your chest. It may be done to:

- check your general health

- look at your lungs and heart

- look for changes to the lungs that may be caused by cancer.

Having a chest x-ray is not painful. It only takes a few minutes. It uses a small amount of radiation, which is very unlikely to harm you.

MRI scan

An MRI scan uses magnetism to build up a detailed picture of areas of your body.

The scanner is a powerful magnet. You will be asked to complete and sign a checklist to make sure it is safe for you. The checklist asks about any metal implants you may have, such as a pacemaker or surgical clips. You should also tell your doctor if you have ever worked with metal or in the metal industry. Tiny fragments of metal can sometimes lodge in the body.

You have the scan in the x-ray department at the hospital. A person called a radiographer works the scanner. They may give you an injection of a dye, called a contrast. It helps show certain areas of the body more clearly.

During the test, you need to lie very still on a bed inside a long cylinder (tube). If you are worried about feeling claustrophobic, you may be able to have a sedative to help you relax. Talk to your GP or doctor about this before the scan.

The scan takes 15 to 90 minutes. It is painless but you may find it uncomfortable to lie still for that long. After the scan is finished you can usually go home.

CT scan

A CT scan makes a three-dimensional (3D) picture of the inside of the body using x-rays taken by the CT scanner. It uses a small amount of radiation. This is very unlikely to harm you. It will not harm anyone you come into contact with.

You will get an appointment letter telling you if you need to do anything before the scan. You may be asked not to eat or drink for a few hours before the scan. If this is a problem for you, call the number on your appointment letter.

You have the scan at the hospital. The person who works the scanner is called a radiographer. They help you prepare for the scan. You may have a drink or injection of a dye. This is called a contrast. It helps show certain areas of the body more clearly. The contrast may make you feel hot all over for a few minutes. It is important to let your doctor know if you are allergic to iodine or have asthma. This is because you could have a more serious reaction.

The scan takes 5 to 10 minutes, but you may be in the department for longer. You will lie very still on a narrow bed. The bed moves slowly back and forward through the donut-shaped scanner.

PET or PET-CT scan

A PET scan uses low-dose radiation to check the activity of cells in different parts of the body. It is sometimes given together with a CT scan. This is called a PET-CT scan. It can give more detailed information about cancer or abnormal areas seen on x-rays, CT scans or MRI scans. PET scans are not suitable for everyone. Your doctor or specialist nurse can tell you whether they might be helpful for you.

PET scans are not available at all hospitals, so you may have to travel to a specialist centre to have one. If you are pregnant or breastfeeding, you should phone the scanning department before the test for advice.

About an hour before the scan, the radiographer will inject a radioactive substance into a vein, usually in the arm. This is called a tracer. While you wait to have the scan, you will be encouraged to drink. Drinking water helps move the tracer around your body. Very rarely, some people are allergic to the tracer. This can make them feel breathless, sweaty or weak. Tell the radiographer straight away if you feel unwell.

The person who works the scanner is called a radiographer. The scan takes about 30 to 60 minutes. You will lie on a narrow bed. The bed moves slowly back and forward through the donut-shaped scanner. You can usually go home after the scan. The amount of radioactive substance used is very small. But you will be advised not to have close contact with pregnant women, babies and young children for up to 24 hours after the scan.

Examination under anaesthetic (EUA)

Sometimes a test called an EUA is needed, but this is not used very often. This is an examination of the vagina and cervix that is done under a general anaesthetic. It allows your doctor to examine you thoroughly and check the extent of the cancer without causing you discomfort. They may also remove small samples of tissue (biopsy).

During the EUA, your doctor may look into your bladder (cystoscopy) and the lower end of your large bowel (proctoscopy) to see if the cancer has spread.

You may have some slight bleeding for a few days after an EUA. Your doctor or nurse can tell you more about the examination and what to expect afterwards.

Waiting for test results

Waiting for test results can be a difficult time. It may take from a few days to a couple of weeks for the results of your tests to be ready. You may find it helpful to talk with your partner, your family or a close friend. Your specialist nurse or a support organisation can also provide support. You may find it helpful to talk to one of our cancer support specialists on 0808 808 00 00 (7 days a week, 8am to 8pm).

Stages of cervical cancer

The stage of a cancer refers to its size and whether it has spread beyond the area of the body where it first started. Knowing the extent of the cancer helps the doctors decide on the most appropriate treatment for you.

Cervical cancer is divided into four main stages. Each stage then has further sub-divisions. Your doctors may also use the following names to describe the stage of the cancer:

- Early-stage cervical cancer – this usually includes stages 1A to 1B1.

- Locally advanced cervical cancer – this usually includes stages 1B2 to 4A.

- Advanced-stage or metastatic cervical cancer – this usually means stage 4B.

If the cancer comes back after treatment, this is called recurrent cancer.

Cervical cancer stage 1

The cancer cells are only within the cervix.

Stage 1 can be divided into the following.

Stage 1A

The cancer can only be seen with a microscope or colposcope.

Stage 1A1

The cancer is less than 3mm deep.

Stage 1A2

The cancer is between 3 and 5mm deep.

Stage 1B

The cancer is 5mm or more deep, but still confined to the cervix.

Stage 1B1

The cancer is no larger than 2cm wide.

Stage 1B2

The cancer is between 2 and 4cm wide.

Stage 1B3

The cancer is 4cm or more wide.

Cervical cancer stage 2

The cancer has spread into the upper part of the vagina or the tissues next to the cervix.

Stage 2 can be divided into the following.

Stage 2A

The cancer has spread into the upper part of the vagina.

Stage 2A1

The cancer is no larger than 4cm.

Stage 2A2

The cancer is larger than 4cm.

Stage 2B

The cancer has spread into the tissues next to the cervix.

Cervical cancer stage 3

The cancer has spread to the lower part of the vagina, or to the tissues at the sides of the pelvic area (called the pelvic wall), or to nearby lymph nodes.

Stage 3 can be divided into the following.

Stage 3A

The cancer has spread into the lower part of the vagina.

Stage 3B

The cancer has spread to the pelvic wall, or is pressing on the tubes that carry urine (pee) from the kidneys to the bladder (ureters). If the tumour is pressing on a ureter, urine may build up in the kidney.

Stage 3C

The cancer has spread to nearby lymph nodes.

Stage 3C1

The cancer has spread to lymph nodes in the pelvis.

Stage 3C2

The cancer has spread to lymph nodes above the pelvis, called the para-aortic lymph nodes.

Cervical cancer stage 4

The cancer has spread to the bladder or bowel or beyond the pelvic area.

Stage 4 can be divided into the following.

Stage 4A

The cancer has spread to nearby organs, such as the bladder and bowel.

Stage 4B

The cancer has spread to organs further from the cervix, such as the lungs, liver or bone.

Your data and the cancer registry

When you are diagnosed with cancer in the UK, some information about you, your cancer diagnosis and your treatment is collected in a cancer registry. This is used to plan and improve health and care services. Your hospital will usually give this information to the registry automatically. There are strict rules to make sure the information is kept safely and securely. It will only be used for your direct care or for health and social care planning and research.

Treating cervical cancer

Treatment overview

Treatments for cervical cancer include surgery, radiotherapy and chemotherapy. You may have more than one of these treatments.

The treatment you have depends on:

- the stage of the cancer

- the size of the cancer

- your general health

- whether you have been through the menopause

- whether you want to get pregnant in the future.

You and your specialist doctor will decide on the right treatment plan for you. Your doctor is an expert in the most effective treatments. But you know most about your own situation and preferences.

Menopause

If you have not been through the menopause, your doctors may try to protect the ovaries so that you do not have an early menopause. An early menopause means having the menopause before the age of 45.

Fertility

If you want to get pregnant in the future, it is important to talk to your doctors about this. You may be able to have treatment that can protect your fertility. If this is not possible, your doctor can refer you to a fertility specialist. You can talk with the specialist about options such as having egg or embryo storage before treatment.

Early-stage cancer

Most cancers of the cervix are diagnosed at an early stage. Surgery is the main treatment. Radiotherapy or chemoradiation (radiotherapy given with chemotherapy) is sometimes used:

- instead of surgery, if you are not fit for a big operation or general anaesthetic

- after surgery, to reduce the risk of the cancer coming back.

Locally advanced cancer

Chemoradiation is the main treatment for locally advanced cancer.

Advanced-stage cancer

Chemotherapy, and sometimes a targeted therapy called bevacizumab, may be used if the cancer has spread to distant parts of your body such as the liver or lungs. It may help to shrink and control the cancer and relieve symptoms. This is called palliative treatment.

How treatment is planned

If you have cervical cancer, your treatment will be planned by a specialist gynaecological cancer team. These teams are based in larger cancer centres, so you may have to travel for your treatment. They will meet to discuss and decide the best treatment for you. They will consider your wishes too.

This multidisciplinary team (MDT) will include:

- a gynaecological oncologist – a surgeon who specialises in gynaecological cancers

- a gynaecologist – a doctor who treats problems with the female reproductive system

- clinical oncologists – doctors who uses radiotherapy, chemotherapy and other anti-cancer drugs to treat people with cancer

- a gynae-oncology nurse specialist – a nurse who specialises in gynaecological cancers

- a radiologist – a doctor who looks at scans and x-rays to diagnose problems

- a pathologist – a doctor who looks at cells or body tissue under a microscope to diagnose cancer.

It may also include other healthcare professionals such as a:

- dietitian

- physiotherapist

- occupational therapist

- radiographer

- psychologist

- counsellor.

After the team has met, your specialist will discuss your treatment options with you. You can ask questions about anything you do not understand or are worried about. You should also be given a telephone number for your specialist nurse or key worker. You can contact them if you have any questions when you get home.

You can also talk to our cancer support specialists on 0808 808 00 00.

Giving your consent

Before you have any treatment, your doctor will explain its aims. They will usually ask you to sign a form saying that you give permission (consent) for the hospital staff to give you the treatment. No medical treatment can be given without your consent, and before you are asked to sign the form you should be given full information about:

- the type and extent of the treatment

- its advantages and disadvantages

- any significant risks or side effects

- any other treatments that may be available.

If you do not understand what you have been told, let the staff know straight away, so they can explain again. Some cancer treatments are complex, so it is not unusual to need repeated explanations. It is a good idea to have a relative or friend with you when the treatment is explained, to help you remember the discussion. You may also find it useful to write a list of questions before your appointment.

People sometimes feel that hospital staff are too busy to answer their questions, but it is important for you to know how the treatment is likely to affect you. The staff should be willing to make time for your questions.

You can always ask for more time if you feel that you can’t make a decision when your treatment is first explained to you.

You are also free to choose not to have the treatment. The staff can explain what may happen if you do not have it. It is essential to tell a doctor or the nurse in charge, so they can record your decision in your medical notes. You do not have to give a reason for not wanting treatment, but it can help to let the staff know your concerns so they can give you the best advice.

The benefits and disadvantages of treatment

Treatment can be given for different reasons and the potential benefits will vary depending on your individual situation.

You may be offered a choice of treatments. For example, some people are offered the choice between surgery or chemoradiation. Before you make a decision, it is important to know the possible benefits and disadvantages of each treatment and the side effects each may cause.

If the cancer is advanced and has spread to distant parts of the body, treatment may only be able to control it, improving symptoms and quality of life. For some people in this situation, the treatment will have no effect on the cancer and they will get the side effects without any of the benefit.

If you have been offered treatment that aims to cure the cancer, deciding whether to accept it may not be difficult. If a cure is not possible, and the purpose of treatment is to control the cancer for a period of time, it may be more difficult to decide whether to go ahead.

Making decisions about treatment in these circumstances is always difficult, and you may need to discuss in detail with your doctor whether you wish to have treatment. If you choose not to have it, you can still be given supportive (palliative) care, with medicines to control any symptoms.

Second opinion

Your multidisciplinary team (MDT) uses national treatment guidelines to decide the most suitable treatment for you. Even so, you may want another medical opinion. If you feel it will be helpful, you can ask either your specialist or GP to refer you to another specialist for a second opinion.

Getting a second opinion may delay the start of your treatment, so you and your doctor need to be confident that it will give you useful information. If you do go for a second opinion, it may be a good idea to take a relative or friend with you, and have a list of questions ready, so that you can make sure your concerns are covered during the discussion.

Surgery

Types of surgery

Surgery is the main treatment for stage 1 cervical cancer. It is also sometimes used to treat small stage 2A cancers.

There are different types of surgery to remove cervical cancer. These are:

- large loop excision of transformation zone (LLETZ)

- cone biopsy

- hysterectomy

- trachelectomy.

The type of operation you have will depend on several things, including:

- the stage of the cancer

- the size of the cancer

- whether you have been through the menopause

- whether you want to get pregnant in the future.

Whatever type of operation you have, the aim is to remove all of the cancer. The surgeon will remove the cancer and a margin of healthy tissue around it. Depending on the type of operation you have, they may also remove other tissue. After the operation, the surgeon will send all the tissue to a laboratory to be looked at under a microscope.

You may need further treatment to reduce the risk of the cancer coming back if cancer cells are found in:

- tiny blood vessels or lymph vessels inside the tumour

- lymph nodes

- tissue around the cervix.

Your surgeon will usually discuss these results with you at your first follow-up appointment after the operation.

Large loop excision of the transformation zone (LLETZ)

Large loop excision of transformation zone (LLETZ) is a common way to remove abnormal cells from the cervix. You may have it as part of your diagnosis of cervical cancer. It is sometimes called loop electrosurgical excision procedure (LEEP). This operation is often used to treat the earliest stage of cervical cancer (stage 1A1). It may be the only treatment you need.

LLETZ usually takes about 5 to 10 minutes and is usually done under a local anaesthetic as an outpatient.

Some local anaesthetic is used to numb the cervix. Then, the doctor or nurse removes the abnormal area using a thin, loop-shaped tool. The loop is heated with an electric current. It cuts and seals the tissue at the same time. This should not be painful, but you may feel some pressure inside the cervix.

If a larger area of the cervix is removed, you may need a general anaesthetic and may stay in hospital for the day or overnight.

Cone biopsy

A cone biospy is a small operation to remove a cone-shaped piece of tissue from the cervix. This operation may be used to treat stage 1 cervical cancer.

Hysterectomy

A hysterectomy is an operation to remove the womb. It is the standard treatment for early-stage cervical cancer. If you have been through the menopause, the surgeon will usually also remove the fallopian tubes and ovaries. Sometimes the surgeon needs to remove the ovaries if you have not had the menopause. This means your periods will stop straight away and you will have the menopause. We have more information on managing menopausal symptoms on our website.

After a hysterectomy, you will not be able to get pregnant. Being told that your cancer treatment means you cannot get pregnant can be very difficult. If you are told you need to have a hysterectomy, you can ask your hospital doctor to refer you to a fertility specialist before your surgery. They can explain fertility options to you. If you are interested in surrogacy (a woman carrying a child in her womb for you), you may want to store eggs or embryos (fertilised eggs).

Types of hysterectomy

There are two types of hysterectomy. The type you have depends on the stage of the cancer.

Simple hysterectomy (also called total hysterectomy)

The surgeon removes the womb and cervix. They may also remove your pelvic lymph nodes. This operation may be done for very early-stage cancers that cannot be seen without a microscope (stage 1A).

Radical hysterectomy

The surgeon removes the upper part of the vagina, the cervix, the womb, the pelvic lymph nodes and the tissue surrounding the womb and cervix (parametrium).

‘I know it sounds like a no brainer: have the hysterectomy and ensure that you are cancer free. But it really was not an easy decision for me. The cancer I could deal with, but the loss of a child I hadn’t even had was harder to deal with.’ Alison, diagnosed with cervical cancer

Trachelectomy

This operation is a type of fertility-sparing surgery. It may be an option if you want to get pregnant in the future and have early-stage cervical cancer.

The surgeon removes the cervix and the upper part of the vagina. They usually also remove the supporting tissues around the cervix. This is called a radical trachelectomy.

Lymph nodes in your pelvis are also removed. The surgeon usually does this through small cuts in your abdomen. This is called laparoscopic surgery. It may be done a few days before, or at the same time as, the trachelectomy.

The womb is left in place so that it is possible for you to get pregnant in the future. The surgeon usually puts a stitch at the bottom of the womb after removing the cervix. This helps to keep the womb closed during pregnancy. After a trachelectomy, there is a higher chance of miscarrying during pregnancy. If you become pregnant, you will be referred to a local specialist maternity service for closer monitoring. The baby will need to be delivered by caesarean section. Your surgeon can explain more about this.

A trachelectomy is very specialised surgery and is not done in all cancer hospitals. If it is an option for you, you may need to be referred to another hospital. There, you can discuss the benefits and possible risks with a surgeon who specialises in this operation.

How the operation is done

A hysterectomy or trachelectomy can be done in different ways.

Abdominal surgery

The surgeon makes one large cut (incision) in the tummy (abdomen). Afterwards, you have a wound that goes across your tummy just above your hips, or that goes up your tummy from just above your hips.

Vaginal surgery

The surgeon operates through a cut at the top of the vagina. The surgeon may combine this with laparoscopic or robotic surgery.

Laparoscopic surgery

The surgeon operates through small cuts in the tummy. They use small surgical instruments and a thin telescope with a video camera on the end (laparoscope). The laparoscope lets the surgeon see inside the body.

Robotic surgery

This is like laparoscopic surgery, but the laparoscope and instruments are attached to robotic arms. The surgeon controls the robotic arms, which can move very delicately, steadily and precisely.

Your surgeon will talk with you about the type of surgery you will have.

Before your operation

If you smoke, try to give up or cut down before your operation. This will help reduce your risk of chest problems and will help your wound to heal after the operation. Your GP can help you if you want to give up smoking. There is also information and support available from the NHS.

If you are having a hysterectomy or trachelectomy, you will go to a pre-assessment clinic a few days or weeks before the operation. You will have tests to check you are fit for surgery, such as blood tests and an echocardiogram (ECG) to check your heart.

A member of the surgical team and a specialist nurse will explain the operation to you. Make sure you discuss any questions or concerns you have about the operation with them. You will also see the doctor who will give you your anaesthetic (the anaesthetist). They will talk to you about the anaesthetic and explain how your pain will be controlled after the operation.

You are usually admitted to hospital on the morning of your operation. You will be given elastic stockings (TED stockings) to wear during and after the operation. These prevent blood clots forming in your legs.

After your operation

Recovery

How quickly you recover will depend on:

- the type of operation you have

- whether you had abdominal or laparoscopic surgery.

You will be encouraged to start moving around as soon as possible. While you are in bed, it is important to move your legs regularly and do deep breathing exercises. This is to help prevent chest infections and blood clots. You will also have daily injections of a blood-thinning drug to reduce the risk of blood clots. If you have had lymph nodes removed, you will be encouraged to put your feet up when you are sitting. This helps to reduce leg swelling.

Drips and drains

You will be given fluids into a vein in your hand or arm. This is called a drip or an intravenous (IV) infusion. It is taken out as soon as you are drinking normally.

You may have a drainage tube in your wound or tummy (abdomen) to drain excess fluid into a small bottle. The drain is usually removed after a few days.

Urinary catheter

You will have a tube (catheter) to drain urine from the bladder. It may be taken out a few hours after your surgery, or the next day. This depends on what type of surgery you have had. You may go home with the catheter still in place. It can be removed at a follow up appointment or by a community nurse.

After a radical hysterectomy or trachelectomy, you may have difficulty passing urine (peeing) when the catheter has been removed. This is temporary. If it happens, a catheter is put into the bladder for 2 to 3 weeks until the bladder recovers. You can be at home while the catheter is place.

Pain

It is normal to have some pain or discomfort for a few days after surgery. But this can be controlled with painkillers. If the painkillers are not working, it is important to tell your doctor or nurse as soon as possible. They may change the dose or give you different painkillers.

Immediately after your operation, you may have strong painkillers. You may be given painkillers through one of the following:

- By injection into a muscle. This is done by a nurse.

- An epidural. This is a small, thin tube in your back that goes into the space around your spinal cord. An epidural gives you continuous pain relief via a pump. You will not be able to walk around if you have an epidural in place.

- A patient-controlled analgesia pump (PCA) pump. The pump is attached to a fine tube (cannula), in a vein in your arm. You control the pump using a handset that you press when you need more of the painkiller. It is fine to press the handset whenever you have pain. The pump is safe as it is set so that you cannot give yourself too much painkiller.

As pain starts to improve, you will be given milder painkillers as tablets. You may be given a supply to take home. Tell your nurse or doctor if you are still in pain. They can change the dose or give you a different painkiller.

Your wound

The surgeon will close your wound using clips, stitches or sometimes skin glue. Clips or stitches are usually removed after you go home. A nurse at your GP practice can do this. Some stitches, called dissolving stitches, are absorbed by the body and do not need to be removed.

Wound infections can be a complication of the surgery.

Signs of wound infection include:

- heat

- redness

- swelling

- fluid or pus coming from the wound

- feeling unwell

- a fever or high temperature.

Tell your nurse or doctor if you have any of these symptoms, even after you go home. If you are unable talk to your hospital team, tell your GP or out-of-hours service.

Constipation

If you are having problems being able to poo after surgery, tell your doctor or nurse. They can give you a laxative to help your bowels move. See your GP if you have problems after being discharged from hospital. It can help to drink at least 2 litres (3½ pints) of fluids each day. It can also help to eat high-fibre foods, such as fruit, vegetables and wholemeal bread.

Low mood

You may feel low in mood about 3 days after surgery. This may last for 24 to 48 hours. It is a normal reaction to a stressful event such as surgery after being diagnosed with cancer. Your nurse specialist will be able to support you.

We have details of other organisations that may be able to support you.

Going home

Before you go home, you will be given an appointment to attend an outpatient clinic. This so you can get the results of the operation and have your post-operative check-up.

A member of your healthcare team will give you instructions on how to look after yourself as you recover.

If you need to go home with a urinary catheter, the hospital team can arrange for a district nurse to visit you at home to check how things are.

If you have any concerns, talk to the nurse about these. It is important that you follow the advice you are given.

Blood-thinning injections

It is important to continue with daily blood-thinning injections for 4 weeks after the operation. You will be given a supply of injections to take home. A nurse will show you how to inject yourself. If you are not able to inject yourself, they will show a family member or friend how to do this. They may be able to arrange for a district nurse to do it for you.

Vaginal care

After a hysterectomy or trachelectomy, you may have a vaginal discharge for up to 6 weeks. This is usually reddish-brown in colour. Contact your doctor or specialist nurse straight away if the discharge:

- becomes bright red

- is heavy

- smells unpleasant

- contains clots.

For the first 6 weeks after surgery, your doctor or nurse will advise you:

- to shower daily

- not to have sex

- not to place anything in the vagina (such as tampons)

- avoid swimming or bathing.

This is so the surgical area can heal properly and to reduce the risk of infection.

Sex

Not having sex for at least 6 weeks after your operation gives your wound time to heal properly. After that, you can have sex. But it is normal to need more time before you feel ready, especially if you are having other treatments.

Physical activity

It is important to balance some gentle activity with rest after an operation. Gentle activity such as short walks or sitting exercises can help reduce the risk of blood clots, chest infections and build energy levels. Your physiotherapist or nurse can give you advice about physical activity that are safe for your situation.

You should avoid strenuous physical activity for several weeks after your operation. This is usually for about 6 weeks after laparoscopic surgery and for about 12 weeks after abdominal surgery. You will need to avoid:

- activities that make you breathless, such as running or going to the gym

- anything that involves heavy lifting, pushing, pulling or stretching.

Driving

You may find it uncomfortable to drive for a few weeks after surgery. Ask your nurse or doctor for advice on when it will be safe for you to start driving again. Some insurance companies have guidelines about this. You may want to contact your insurer to check you are covered to drive.

Getting support

Some people take longer than others to recover from their operation. If you are having problems, it may be helpful to talk to someone. Your clinical nurse specialist or our cancer support specialists are always happy to talk to you. Call us on 0808 808 00 00. They may be able to put you in touch with a counsellor or a support group in your area, so you can discuss your experiences with others who are in a similar situation. You can also go to our Online Community to share experiences and information with others going through the same thing.

Possible long-term complications of surgery

After a radical hysterectomy or radical trachelectomy, you may have problems with your:

- bladder

- bowel

- sex life.

This can happen if nerves in the tissue around the cervix need to be cut to remove the cancer. This can affect your bladder, bowel or sexual response. Your surgeon may use nerve-sparing or nerve-preserving surgery to reduce the risk of these complications.

If your lymph nodes have been removed, there is a risk you will develop swelling in one or both legs. This is called lymphoedema. It is caused by a build-up of lymph fluid that cannot drain away because the lymph nodes have been removed. It is more likely to happen if you have radiotherapy or chemoradiation to the pelvic area after surgery.

If you develop any problems after your surgery, tell your surgeon or nurse so that you can get the right help.

Most people do not have long-term complications after surgery for cervical cancer. But, if you have radiotherapy or chemoradiation as well as surgery, you are more likely to develop long-term complications.

Radiotherapy for cervical cancer

Radiotherapy treats cancer by using high-energy x-rays. These destroy the cancer cells while doing as little harm as possible to normal cells.

When radiotherapy is used

You may have radiotherapy:

- if you have early or locally advanced cervical cancer

- after surgery, if there is a high risk of the cancer coming back

- if cancer comes back in the pelvis after surgery

- to help relieve symptoms such as bleeding.

Chemoradiation

Radiotherapy for cervical cancer is often given with chemotherapy. Doctors call this chemoradiation. The chemotherapy drugs make the cancer cells more sensitive to radiotherapy. The combination of treatments can be more effective than having radiotherapy alone.

Early menopause

Radiotherapy for cervical cancer affects the ovaries. If you are still having periods, radiotherapy will cause an early menopause. You may have a period during the course of radiotherapy, but your periods will stop after treatment finishes. Your healthcare team will discuss this with you before your treatment starts. They can also give you information about treatments to manage menopausal symptoms.

It is possible to have an operation to move the ovaries. The ovaries are lifted out of the radiation field and attached to the abdomen (tummy) wall. Doctors call this ovarian transposition. You have it before radiotherapy starts. The aim is to prevent an early menopause.

Having ovarian transposition depends on the stage of the cancer and the risk that it has spread to the ovaries. Your cancer doctor can talk to you about this.

Ovarian transposition is usually done using laparoscopic (keyhole) surgery. Sometimes the ovaries are moved at the same time as a hysterectomy for cervical cancer. The surgeon may do this if they think you might need radiotherapy after surgery. Ovarian transposition does not always work, and cervical cancer treatment still causes early menopause.

Fertility

Radiotherapy for cervical cancer also affects the womb. After treatment with radiotherapy, the womb is not able to carry a baby. If you would like to get pregnant in the future, your cancer doctor can refer you to a fertility specialist. They can see you before you begin treatment to talk through your fertility options. We have more information in our booklet Cancer and fertility – information for women.

How radiotherapy is given

Radiotherapy for cervical cancer may be given:

- externally, from a machine outside the body

- internally, from radioactive material that is temporarily put into the part of the body being treated – doctors call this brachytherapy.

You may have both external and internal radiotherapy. The doctor who plans your treatment will discuss this with you.

External radiotherapy

External radiotherapy uses a machine, called a linear accelerator. It is like a large x-ray machine. A radiographer gives you the treatment in the radiotherapy department at the hospital. You have it as an outpatient, once a day from Monday to Friday with a rest at the weekend. Each session of treatment takes a few minutes. It usually takes about 5 to 5½ weeks to have the full course of treatment.

External radiotherapy does not hurt. It does not make you radioactive and it is safe for you to be around other people. This includes children and pregnant women.

Planning your treatment

Your radiotherapy is planned by your clinical oncologist, with the support of a technical team. The planning is done to make sure that:

- the radiotherapy targets the cancer accurately

- it causes as little damage as possible to nearby tissue.

Cervical cancer is often treated with image-guided radiotherapy (IGRT). This means that, as well as a first planning visit, you have further assessments done at each treatment session. Images are taken before each treatment to check the size and position of the cancer. If there are any changes, adjustments can be made to the treatment.

First planning visit

Your first planning visit will take 30 to 60 minutes. The staff in the radiotherapy department will explain what to expect. It is important you feel involved in your treatment, so ask as many questions as you need to. The staff will tell you beforehand if you need to prepare in any way. For example, they may ask you to drink plenty of water or give you an enema to empty your bowel.

You usually have a CT scan of the area to be treated. This helps your doctor and radiotherapy team plan the precise area for your radiotherapy. Before your scan, they may ask you to remove some of your clothes and to wear a gown.

You may have an injection of dye into a vein when you have the CT scan. This allows certain areas of the body to be seen more clearly. You may also be asked to have a full bladder for the scan. This helps to push the bowel away from the cancer, so it can be seen more easily. You also have an enema to empty the bowel.

As well as a CT scan, some people have an MRI scan or a PET/CT scan to help with planning their treatment.

During your scan, you need to lie still on a hard couch. If you feel uncomfortable when the radiographers position you on the couch, let them know so they can make you more comfortable. This is important because, once you are comfortable, the details of your position are recorded. You will need to lie in the same position on a similar couch for all of your treatments.

The information from the scan is sent to a planning computer. Your radiotherapy team will use this to work out the precise dose and area of your treatment. It can take up to 2 weeks to plan your treatment.

The radiographer may need to make some small marks on your skin. This is to help them position you accurately and to show where the rays will be directed. These are tiny permanent markings made in the same way as a tattoo. It may be a little uncomfortable having them done. The marks are the size of a pinpoint and are only made with your permission. The marks must stay visible throughout your treatment.

Treatment sessions

At the beginning of each session, your radiographer explains what you will see and hear. They may ask you to have a full bladder for each treatment. They may also ask you to take off some of your clothes and wear a gown. This lets the radiographers see the tiny marks made on your skin, so that they can position you correctly. If you are having IGRT, the radiographer takes images just before each treatment. These images are used to make sure the radiotherapy is targeted precisely at the treatment area.

When you are comfortable and in the correct position, the radiographers will ask you to keep as still as possible. They then leave the room for a few minutes while you have your treatment. You can talk to your radiographer, who watches you from the next room through closed-circuit TV (CCTV). The radiotherapy machine does not touch you, and the treatment is painless. You may hear a slight buzzing noise from it while you are having your treatment.

When your treatment session has finished, the radiographers will come back and help you off the treatment couch. You can then go home or, if you are staying in hospital, back to the ward.

Internal radiotherapy

Internal radiotherapy (also called brachytherapy) gives radiation directly to the cervix and the area close by. It is usually given after external radiotherapy. You may have the treatment as an inpatient or outpatient.

Brachytherapy involves putting a piece of radioactive material, called a source, inside the body, close to the cancer. If you have had surgery, it is put in the area where the cancer was before it was removed. The source is placed inside specially designed hollow tubes, called applicators. A brachytherapy machine is used to place the source into the applicators and to give the radiotherapy. An individual plan is made for you based on scans and other tests, so that the internal radiotherapy is given in the most effective way.

Brachytherapy if you have not had a hysterectomy

If you have not had a hysterectomy, you will have intrauterine brachytherapy (radiotherapy given into the womb). You have a general anaesthetic or a spinal anaesthetic first. Your doctor will explain this to you.

Your doctor inserts applicators into your vagina. They pass them up through the cervix into the womb. They may also place applicators alongside the cervix.

The doctor may place padding inside the vagina. This is to help protect your back passage (rectum) and prevent the applicators moving. You also have a catheter put into your bladder to drain urine.

The applicators can be uncomfortable, so you may need to take painkillers while they are in.

Cervical brachytherapy

Brachytherapy if you have had a hysterectomy

If you have had a hysterectomy, a doctor may place one or two applicators into the vagina. This is called vaginal brachytherapy.

Vaginal brachytherapy is a simpler treatment than brachytherapy given into the womb. You do not need any preparation for the treatment. It is unlikely to cause any immediate side effects.

Having brachytherapy

You have a scan to check the position of the applicators. When it is confirmed that the applicators are in the right position, they are connected to the brachytherapy machine. The machine is operated by a radiographer. It places a radioactive capsule, called a source, into the applicators. The machine then gives the planned dose of radiation.

Internal radiotherapy can be given as high-dose-rate, low-dose-rate or pulsed-dose-rate treatment. Most centres in the UK use high-dose-rate equipment. These different ways of giving internal radiotherapy all work well. The type you have will depend on the system your hospital uses. Your cancer specialist and specialist nurse will explain more so that you know what to expect.

High-dose-rate treatment

This is the most common way of giving brachytherapy to the cervix. You have several treatments. Each treatment is given over about 10 to 15 minutes. How high-dose-rate treatments are given varies from hospital to hospital.

If you stay in hospital, you have your treatments over several days. The applicators may be removed between treatments. Or they may be left in place and removed after your final treatment.

If you have your treatment as an outpatient, you go to the hospital 3 or 4 times over several days or a week. A nurse will remove the applicators before you go home.

You may have a tube (catheter) put into your bladder to drain urine during high-dose rate treatment. A nurse will take this out before you go home.

Low-dose treatment

If you have this treatment, you usually stay in hospital for 12 to 24 hours. But sometimes it is given over a few days. Your doctor, nurse or radiographer will tell you more about low-dose-rate treatment.

Pulsed-dose-rate brachytherapy

This treatment is given over the same length of time as low-dose-rate treatment. But the radiation dose is given in pulses, rather than as a continuous dose. Your doctor, nurse or radiographer will give you more information.

Side effects of radiotherapy

You may develop side effects during your treatment. These usually improve over a few weeks or months after treatment finishes. Your doctor, nurse or radiographer will discuss this with you, so you know what to expect. Tell them about any side affects you have during or after treatment. There are often things that can help.

Smoking makes the side effects of radiotherapy worse. If you smoke, stopping smoking will help. If you want help or advice on how to give up, talk to your clinical oncologist, GP or a specialist nurse. The NHS has information and support to help you give up smoking.

‘With the radiotherapy every day, I was lucky with side effects. The only thing was that my energy levels dropped significantly. I was just so tired pretty much all of the time.’ Danielle, diagnosed with cervical cancer

Skin changes

Your skin in the area being treated may get dry and irritated. Avoid perfumed soaps or body washes during your treatment. They could irritate your skin. You will be given advice on looking after your skin. Your doctor, radiographer or nurse can give you cream to soothe it if it becomes sore.

You may lose some of your pubic hair. It usually grows back after treatment, but it may be thinner than before.

Tiredness

Tiredness is a common side effect. It may continue for some months after treatment finishes. During treatment, you may need to rest more than usual. But it is good to do gentle exercise, such as walking, when you feel able. After your treatment finishes, slowly increase your activity. Try to balance rest periods with exercise such as walking. This will help build up your energy levels.

Bowel changes

Radiotherapy to the pelvis may irritate your bowel and cause tummy (abdominal) cramps. If you have cramps, tell your doctor, nurse or radiographer. They can give you medication to help.

You may need to empty your bowels (poo) more often and you may have diarrhoea. Drink plenty of fluids if you have diarrhoea. Your doctor may also prescribe medication to help manage it. Your doctor, nurse or radiographer may suggest you follow a low-fibre diet. This means avoid eating certain foods during treatment and for a few weeks after, including:

- wholemeal bread and pasta

- raw fruit

- cereals

- vegetables.

Changes in your blood

External radiotherapy can reduce the number of blood cells made by your bone marrow. This is more likely to happen if you are having chemoradiation. If the number of white blood cells is low, you are more likely to get infections and may need antibiotics. If the number of red blood cells is low, you may feel tired and you might need a blood transfusion. Your hospital team will arrange for you to have regular blood tests if needed.

Bladder changes

Radiotherapy can irritate the bladder. You may feel like you need to pass urine (pee) more often. You may also have a burning feeling when you pass urine. Your doctor can prescribe medicines to make passing urine more comfortable. Try drinking at least 2 litres (3½ pints) of water or other fluids each day to help with the symptoms.

Vaginal discharge

You may have a light vaginal discharge after treatment has finished. If it continues or becomes heavy, tell your clinical oncologist or specialist nurse.

Possible late effects

Radiotherapy to the pelvic area can sometimes cause effects months or years after treatment. These are called late effects. They may be permanent. If you have late effects, there are ways they can be managed or treated.

It is always important to tell your GP or cancer doctor if you get any new symptoms a long time after treatment. They need to be checked, as they may not be caused by radiotherapy.

Late effects on the vagina

Radiotherapy can make the vagina narrower and less stretchy. The vaginal walls may be dry and thin, and can stick together. This can make penetrative sex and internal examinations uncomfortable.

Your hospital team may recommend you use vaginal dilators to help prevent narrowing. Dilators are tampon-shaped plastic tubes of different sizes, which you use with a lubricant.

Although dilators are commonly used, there is no strong evidence about how effective they are. Rarely, they may cause damage to the vagina, especially if they are not used correctly. Your specialist nurse or doctor will explain the best way to use them.

Vaginal dryness

Radiotherapy can also cause vaginal dryness. This can feel uncomfortable, particularly during sex. Creams, gels, lubricants or pessaries (small pellets that are put inside the vagina) can help.

There are lots of products you can try. You can buy them at a pharmacy or online, or your doctor can prescribe them.

Moisturisers work by drawing moisture into the vaginal tissue. You apply them regularly.

You can also use lubricants when you have sex to make it feel more comfortable and pleasurable. Lubricants can be water-based or oil-based. You can buy them from a pharmacy, some supermarkets or online.

Vaginal dryness can make you more likely to get infections, such as thrush. Tell your doctor if you have symptoms such as itching or soreness.

Vaginal bleeding

After pelvic radiotherapy, the blood vessels in the lining of the vagina can become fragile. This means they can bleed more easily. Bleeding may be caused by:

- sex

- vaginal tissue sticking together

- scar tissue causing the vagina to narrow.

If you have any bleeding, always tell your cancer doctor or nurse. They will examine you and explain whether it is likely to be caused by the radiotherapy. If the bleeding is minor, you may find that it does not trouble you much when you know the cause.

Bowel or bladder changes

After radiotherapy, you may develop changes to the bowel or bladder. It is common to have some mild changes, but much less common to have severe side effects that affect your quality of life. If this happens, symptoms may develop months, or sometimes years, after radiotherapy treatment.

If your bowel is affected, you may have to go to the toilet more often or more urgently than usual, or you may have diarrhoea.

If the bladder is affected, you may need to pass urine (pee) often or more urgently.

The blood vessels in the bowel and bladder can become more fragile. This can cause blood in your urine (pee) or bowel movements (poo). If you have bleeding, always tell your cancer doctor or GP so that it can be checked.

Lymphoedema

Pelvic radiotherapy may increase the risk of swelling in one or both legs. This is called lymphoedema. It is not common, but the risk is higher if you have surgery to remove the lymph nodes as well as radiotherapy. You can reduce the risk of lymphoedema by:

- taking care of the skin on your feet and legs

- avoiding cuts and insect bites on your feet and legs

- treating any cuts, bites or grazes straight away

- seeing your GP straight away if you have any signs of infection in your feet or legs

- doing regular, gentle exercise such as walking

- keeping to a healthy weight.

We have more information in our booklet Understanding lymphoedema.

Changes to the pelvic bones

Radiotherapy can cause thinning of the bone in the pelvis. Often this does not have any symptoms, but is seen on scans. In some people, it causes fractures in the pelvis called insufficiency fractures. These can cause pain in the lower back or pelvis. If this happens, it can be treated with painkillers and physiotherapy. We have more information in our booklet Bone health.

Chemoradiation

Radiotherapy is often given with chemotherapy. This is called chemoradiation. The chemotherapy drugs make the cancer cells more sensitive to radiotherapy. The combination of treatments can be more effective than having radiotherapy on its own.

The chemotherapy drug most commonly used is cisplatin. It is usually given once a week throughout your radiotherapy.

The side effects of chemoradiation are similar to radiotherapy side effects. But they can be more severe. Your doctor, radiographer or specialist nurse can give you more information about chemoradiation and the possible side effects of treatment.

Chemotherapy

Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy cancer cells. These drugs disrupt the way cancer cells grow and divide, but they also affect normal cells.

You may have chemotherapy:

- with radiotherapy as your main treatment – this is called chemoradiation

- after surgery and with radiotherapy (chemoradiation),

- if there is a high risk of the cancer coming back

- if the cancer comes back after treatment

- if the cancer spreads to other parts of your body.

How you have chemotherapy

You may have chemotherapy in the chemotherapy day unit or on the ward. The drugs are usually given into a vein (intravenously).

You usually have chemotherapy through a small tube (cannula) in your hand or arm.

Sometimes it is given through a soft, plastic tube called a central line or PICC line. These lines go into a large vein in your chest. Chemotherapy can also be given into a thin, plastic tube with a rubber disc (port) under the skin on your upper chest.

Chemotherapy is given into your vein during one or more sessions of treatment. The length of each session depends on the combination of chemotherapy drugs you have. After each session, you have a rest period. The chemotherapy session and the rest period are called a cycle of treatment.

The length of a cycle depends on the chemotherapy drugs you have, but most cycles are 1 to 3 weeks long. Your doctor or nurse will tell you how many cycles of treatment you will have.

Chemotherapy drugs for cervical cancer

A number of different drugs may be used to treat cervical cancer. Your doctor will explain to you which drugs are best for you. You may be given one chemotherapy drug, or two or more in combination. Drugs that may be used include:

- cisplatin

- 5-fluorouracil (5-FU)

- doxorubicin or liposomal doxorubicin

- paclitaxel

- topotecan

- carboplatin

- gemcitabine.

Side effects

Chemotherapy may cause side effects. Many of these can be controlled with medicines, and usually go away when treatment finishes. Your doctor or nurse will tell you more about what to expect. Always tell them about any side affects you have, as there are usually ways they can help.

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 called neutropenia.

If you have an infection, it is important to treat it as soon as possible. Contact the hospital straight away on the 24-hour contact number you have 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.

Symptoms of an infection include:

- feeling shivery

- a sore throat

- a cough

- diarrhoea

- needing to pass urine often.

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.

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 your 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.

Feeling sick

The nurses will give you anti-sickness drugs regularly to help prevent or control sickness during your treatment. If you feel sick or are sick (vomit), tell your nurse or doctor. They may change the anti-sickness drug to one that works better for you.

Feeling tired

Feeling tired is a common side effect of this treatment. It is often worse towards the end of treatment and for some weeks after it has finished. Try to pace yourself and plan your day so you have time to rest. Gentle exercise, like short walks, can give you more energy.

If you feel sleepy, do not drive or use machinery.

Effects on the kidneys

Some chemotherapy drugs can affect how your kidneys work. This is usually mild and goes back to normal after treatment finishes. You will have blood tests to check how well your kidneys are working. Tell your doctor or nurse if you have blood in your urine (pee) or you are passing urine less than usual.

It is important to drink at least 2 litres (3½ pints) of non-alcoholic fluid each day to help protect your kidneys.

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.

Loss of appetite

This treatment can affect your appetite. Do not worry if you don’t eat much for a day or two. But if your appetite does not come back after a few days, or if you are losing weight, tell your nurse or dietitian. They can give you advice. They may give you food or drink supplements. Or they may suggest changes to your diet or eating habits to help.

Numb or tingling hands or feet (peripheral neuropathy)

Some chemotherapy drugs may affect the nerves, which can cause numb, tingling or painful hands or feet. You may find it hard to fasten buttons or do other fiddly tasks.

Tell your doctor if you have these symptoms. They sometimes need to lower the dose of the drug. The symptoms usually improve slowly after treatment finishes, but for some people they may never go away. Talk to your doctor if you are worried about this.

Hair loss

Some chemotherapy drugs may cause hair loss. Some people may have complete hair loss including eyelashes and eyebrows. Others may only experience partial hair loss or thinning. It depends on what chemotherapy drugs you are having (your doctor or nurse can tell you more about what to expect). If you do experience hair loss your hair should start to grow back within about 3 to 6 months of the end of treatment. It may grow back straighter, curlier, finer, or a slightly different colour than it was before. Your nurse can give you advice about coping with hair loss and how to look after your scalp. We have more information about hair loss on our website.

Contraception

It is important to use effective contraception during your treatment and for some time afterwards. This is to make sure you do not become pregnant. Chemotherapy drugs may harm the unborn baby. Your doctors can advise you about this.

Sex

Use condoms if you have sex within the first 48 hours after chemotherapy. This is to protect your partner from any of the drug that may be in vaginal fluid.

Targeted therapy

Bevacizumab (Avastin®) is a targeted therapy treatment sometimes used to treat cervical cancer. It may be used if cervical cancer:

- is advanced

- has come back after treatment.

It cannot cure the cancer, but it may help to control it for a time.

Bevacizumab works by stopping the cancer from making blood vessels. This means that the cancer does not get the oxygen and nutrients it needs and may shrink or stop growing. The treatment is usually given in combination with chemotherapy drugs.

Bevacizumab is given into a vein as an infusion.

Side effects are usually mild to moderate. They can include:

- high blood pressure

- headaches

- feeling sick

- a sore mouth

- tiredness (fatigue)

- diarrhoea.

An uncommon but more serious side effect is an area of tissue breaking down in the vagina, bladder or bowel. This can cause a hole, which makes a new opening or fistula between two parts of the body, such as the vagina and bladder. If you have had radiotherapy to the pelvis, there is a higher risk of this happening with bevacizumab.

Your doctor or nurse can tell you more about possible side effects and how they can be managed.

Immunotherapy for cervical cancer

The immune system protects the body against illness and infection. Immunotherapies are treatments that use the immune system to find and attack cancer cells. Nivolumab (Opdivo®) and ipilimumab (YERVOY®) are immunotherapy drugs that are starting to be used in cervical cancer treatment. At the moment, they can only be used as part of a clinical trial. Your doctor or nurse can give you more information about the right treatment for your situation.

Fertility, menopause and sex

Treatments for cervical cancer may affect your fertility and cause an early menopause. They may also affect your sex life.

Fertility

If you have pelvic radiotherapy or a hysterectomy, your fertility will be affected. This can be difficult to cope with, even if you have had a family or did not plan to have children. If you have a partner, it is important to discuss your feelings about this together so that you can support each other. Some people find it helpful to talk to someone other than their family and friends. There are support organisations you can contact to share experiences with other people in a similar situation. You may consider counselling. Your doctor or specialist nurse may be able to arrange this for you. Or there are counselling organisations you can contact.

It is important to discuss any concerns you have about your fertility with your healthcare team before treatment starts. They can tell you what options might be available if you would like to get pregnant in the future. For example, you may be able to have your eggs or embryos (fertilised eggs) frozen and stored for future use. This would need to happen before treatment starts.

After a hysterectomy or pelvic radiotherapy, you will not be able to carry a baby in the womb. But surrogacy may be possible. Surrogacy means that another woman carries the baby for you.

If you would like to talk about your fertility options before your cancer treatment, ask your hospital team. They can refer you to a fertility specialist. We have more information in our booklet Cancer and fertility – information for women.

‘One of the toughest moments was when my sister told me she was pregnant. I was of course overjoyed, but felt a great surge of jealousy.’ Peri

Menopause

If you have not been through the menopause, and the ovaries are removed or affected by radiotherapy, you will have an early menopause.

This can cause menopausal symptoms such as:

- hot flushes

- night sweats

- joint and muscle pain

- effects on mood (for example, low mood)

- lower energy levels

- poor sleep

- lack of concentration

- vaginal dryness

- reduced sexual desire.

These symptoms are caused by a low oestrogen level. An early menopause can also increase your risk of bone thinning and heart disease. Your doctor or specialist nurse can talk with you about what can help with menopausal symptoms. They can also explain what you can do to help protect your bone health and heart health. We have more information in our booklets Bone health and Heart health and cancer treatment.

If you have had a hysterectomy and removal of the ovaries that has caused an early menopause, most specialists recommend you have oestrogen-only replacement. This is to protect your bones and heart, and to treat menopausal symptoms.

If you still have a womb but go through the menopause because of removal of the ovaries or radiotherapy, oestrogen replacement is given combined with progestogens. It is given as hormone replacement therapy (HRT) or as a combined oral contraceptive pill. You usually take this treatment until you reach the average age for women to have the menopause, which is 50 to 52 years old.

You may worry about taking HRT because of the risk of breast cancer. When taken to treat an early menopause, HRT does not increase this risk. But if you have had breast cancer, HRT may not be suitable for you. Your cancer doctor can talk with you about this.

Cervical cancer is not affected by hormones, so taking hormone replacement therapy does not increase the risk of it coming back.

When you are deciding whether to have HRT, it is important to discuss the potential benefits and risks with your doctor. This will help you to decide if HRT is right for you.

An organisation called the Daisy Network can support you if you have an early menopause. You may find it helpful to contact them if you need more support. Visit daisynetwork.org

Sex after treatment

Cervical cancer, its treatments and their side effects may affect your sex life and how you feel about yourself. This often slowly improves after treatment, although for some people it may take longer.

Cuddles, kisses and massages are affectionate and sensual ways of showing how much you care for someone, even if you do not feel like having sex. You can wait until you and your partner feel ready.

It is common to feel nervous about sex after cancer treatment, but it is completely safe for both you and your partner. At first, it may be easier to take more time to help you relax and for your partner to be very gentle.

After radiotherapy or a radical hysterectomy, some people find it harder to get aroused or take longer to orgasm. This might be because of effects on the nerves in the pelvic area. But it may be because of a change in the way you feel about yourself sexually. A sex therapist or counsellor may be able to help you with these issues. Your doctor can refer you to a sex therapist, or you can contact a therapist through the College of Sexual and Relationship Therapists.

Tell your doctor or nurse if you are having problems with your sex life. They may be able to offer help and support. Many people find it difficult to talk about sexual difficulties because they feel embarrassed or self-conscious. Your doctor or nurse will be used to talking about these issues. But if you feel uncomfortable talking to your doctor or nurse, you can call our cancer support specialists on 0808 808 00 00.

Clinical trials

Clinical trials are medical research studies involving people. Doctors may use cancer clinical trials to:

- test new treatments to see if they work better than current treatments

- find which treatments have fewer side effects

- find new ways to combine treatments to see if they work better

- test new cancer drugs to find out more about them and their side effects

- improve the way treatments are given to try to reduce side effects.

Results from clinical trials can improve cancer treatments and help people live longer. Trials can also look at improving things like diagnosis and symptom management.

Taking part in a clinical trial

Your cancer doctor or specialist nurse may talk to you about taking part in a clinical trial. Or you could ask them if there are any trials suitable for you.

Usually, cancer clinical trials happen in several hospitals around the country. You may have to travel to take part in a trial.

A research nurse or doctor will give you information about the trial. It is important to understand what is involved before you agree (consent) to take part. You can ask the research nurse or doctor any questions you have.

They will also explain the possible benefits and any possible risks of the trial. Clinical trials are designed to be as safe as possible. The researchers will monitor you closely during and after the trial.

If you decide not to take part in a trial, your cancer doctor and specialist nurse will respect your decision. You do not have to give a reason for not taking part. Your decision will not change your care. Your cancer doctor will give you the standard treatment for the type and stage of cancer you have.

Giving blood and tissue samples

During your diagnosis and treatment doctors often take blood samples. They may also take a small piece of tissue or a sample of cells. These tissue samples are called biopsies. The samples can be looked at under a microscope. Your cancer doctor may ask your permission to store and use these blood or tissue samples for cancer research. This will only happen after they have done all the tests you need.

Your samples can only be stored for research if you give your consent. Your cancer doctor can answer any questions you have.

Your name is removed from the samples before they are stored. This means you cannot be identified.

The samples may be used to:

- find out more about the causes of certain cancers

- develop new cancer drugs or treatments.

This type of research takes a long time. The results may not be available for many years.

After your treatment

Follow-up appointments

After your treatment has finished, you will have regular check-ups with your cancer doctor or nurse. These may include:

- a phone appointment

- a physical examination

- blood tests

- x-rays

- scans.

You can talk to your doctor or nurse about any problems or worries at these check-ups. If you notice new symptoms or have problems between appointments, contact your doctor or nurse for advice.

You may get anxious before your appointments. You may worry about the cancer coming back. This is natural. It can help to get support from family, friends or your specialist nurse. Or you can speak to our cancer support specialists on 0808 808 00 00. Other organisations such as Jo’s Cervical Cancer Trust also offer support to people affected by cancer of the cervix.

‘The strangest feeling happened after the all-clear. For the last 5 months, I had been living and breathing cancer 24/7. What was normality? I decided to get some counselling. This really helped me transition back into everyday life.’ Alison, diagnosed with cervical cancer

Well-being and recovery

Living a healthy lifestyle can help your body recover after treatment. It can also help to reduce the risk of other illnesses, such as heart disease, diabetes and strokes.

After cancer treatment, you may choose to make some positive lifestyle changes. You may have already followed a healthy lifestyle before cancer. But you may be more focused on making the most of your health.

Some hospitals have cancer information centres where staff can talk to you about well-being and groups in your local area to help with this.

Eat healthily

A healthy, balanced diet gives you more energy and will help you to recover. Talk to your GP, specialist nurse or a dietitian if you have any special dietary or medical needs. We have information about healthy eating that you may find helpful in our booklet Healthy eating and cancer.

Be physically active

Being physically active after cancer treatment can:

- increase your energy levels

- help you keep to a healthy weight

- reduce stress and fatigue.

It can also reduce your risk of:

- bone thinning, if you have had an early menopause

- health problems such as diabetes, heart disease and some cancers.

Your GP or cancer doctor may be able to refer you to an exercise group for people with cancer. Ask them for advice about what is available in your local area. We have more information about keeping active in our booklet Physical activity and cancer.

Stop smoking and stick to sensible drinking

If you smoke, giving up is the healthiest decision you can make. Stopping smoking reduces your risk of heart and lung disease, bone thinning (osteoporosis), and smoking-related cancers. If you want to stop, your GP can give you advice. We have more information about giving up smoking on our website.

Alcohol has also been linked to a higher risk of some types of cancer and to weight gain. If you drink alcohol:

- do not regularly drink more than 14 units in a week

- spread the amount you drink in a week over 3 or more days

- try to have several alcohol-free days every week.

There is more information about drinking alcohol at drinkaware.co.uk

Complementary therapies

Some people use complementary therapies to help them relax or cope with treatment side effects. Some hospitals or support groups offer therapies such as relaxation or aromatherapy. Ask your cancer doctor or nurse what is available in your area. We have more information about complementary therapies in our booklet Cancer and complementary therapies.

Your feelings and relationships

Your feelings

It is common to have many different emotions when you are told you have cancer. These can be difficult to cope with. We talk about some common feelings here. Partners, family and friends may also have some of the same feelings.

There are lots of different reactions to cancer. You might not have any of the emotions we talk about here. There is no right or wrong way to feel. You will cope with things in your own way.

Talking to family, friends or other people affected by cancer, may help. Or you may get support from your healthcare team.

Shock and denial

You may find it hard to believe that you have cancer when you are first diagnosed. It is common to feel shocked and numb. You may not be able to understand all the information you are given. You may find that you keep asking the same questions. At first, it can be hard to talk about the cancer. Or you might find it hard to think or talk about anything else. Both reactions are normal. Your mind is trying to process what is happening. These feelings usually get easier over time.

Fear and anxiety

You may be anxious or frightened about whether treatments will work and what will happen in the future. This can be one of the hardest things to cope with. It can help to try to focus on things you can control. You may want to find out more about the cancer, your treatment options, and how to manage any side effects. It can also help to talk about your feelings. Try to keep doing the things that are important to you and that you enjoy.

Sadness and depression

You may feel sad if you have to change your plans because of the cancer, or if your future feels uncertain. Feeling sad is a natural reaction to changes or loss. This feeling may come and go during and after your treatment. For most people, these periods of sadness get better. But for some people, the sadness may continue or get worse. If you think the sadness may be turning into depression, there are things you can do to help. See the end of the eBook for details of support organisations.

Avoidance

You may cope by trying not to find out much about the cancer. Or by not talking about it. If you feel like this, tell people that you do not want to talk about it right now. You can also tell your cancer doctor if there are things you do not want to know or talk about yet.

Sometimes, it may be hard to accept that you have cancer. This can stop you making decisions about treatment. If this happens, it is very important to get help from your healthcare team.

You may feel that your family or friends are avoiding you or avoiding talking about the cancer. This is usually because they are also finding it difficult to cope. They may need support too. Try to tell them how this makes you feel. It may help you, and your family and friends, to talk openly about how you are feeling.

Anger

You may feel angry about your diagnosis. You may also resent other people for being well. These are normal reactions. They are more likely when you feel frightened, stressed or unwell. You may get angry with your family, friends or partner. Tell them you are angry at your illness and not at them. Finding ways to relax can help with anger. This can include talking about or writing down how you feel, doing gentle exercise, having relaxation therapy or meditating.

Guilt and blame

You may feel guilty or blame yourself for the cancer. You may want to find reasons for why it has happened to you. Most of the time, it is impossible to know exactly what causes a cancer. Over time, a combination of different risk factors may cause a cancer. Doctors do not fully understand all these factors yet. Try to focus on looking after yourself and getting the help and support you need.

Feeling alone

You may feel alone or isolated. This could be because you do not think you have support. Family and friends may live far away, be busy, or feel uncomfortable talking about the cancer. Try to tell your family and friends how you feel. This can help them find ways to support you.

You may have times when you want to be alone for a while. But if you find you are avoiding people a lot of the time, try to talk to your doctor or nurse.

If you need more support, you can call the Macmillan Support Line on 0808 808 00 00 and talk to one of our cancer support specialists. Our website can help you find local support groups. Visit macmillan.org.uk/supportgroups You can also talk to other people affected by cancer on our Online Community. Visit macmillan.org.uk/community

If you need more help

You may find it very difficult to cope with your emotions and may need more help. This does not mean you are failing in any way.

Talk to your doctor or nurse if:

- you feel anxious or worried a lot of the time

- you think you may be depressed.

They can refer you to a specialist doctor, psychologist or counsellor who can help. They may also prescribe medicines to help.

We have more information about coping with the emotional effects of cancer in our booklet How are you feeling? The emotional effects of cancer.

If you are a family member or friend

If you know someone with cancer, you might find it hard to talk about the cancer or your feelings. You might think it is best to pretend everything is fine. You might not want to worry them. Or you might feel you are letting them down if you admit you are worried or scared.

But not talking to the person with cancer about how you feel may make them feel alone.

You can support the person with cancer by listening and talking with them. Do not feel you have to talk about the cancer. Often it is enough just to listen and let the person with cancer talk when they are ready.

You may find some of the courses on our Learn Zone website helpful. There are courses to help with listening and talking. Visit macmillan.org.uk/learnzone to find out more.

We have more information in our booklet Talking with someone who has cancer.

If you are looking after a family member or friend with cancer, you may be a carer. We have more information and practical tips for carers in our booklets Looking after someone with cancer and A guide for young people looking after someone with cancer.

Talking to children about cancer

Deciding what to tell children about cancer is difficult. It can be hard to know what to tell them, and you may be worried about upsetting them. Children do not always show their feelings, but their behaviour may change at home or at school.

Talking to children about the cancer can:

- help them understand what is going on

- help them feel supported

- prepare them for any changes.

It may also help with some of your own anxiety too. For example, not telling them about hospital appointments may cause extra stress.

How much you tell children will depend on their age and how mature they are. It may be best to start by giving them small amounts of information, and then tell them more when they are ready. Teenagers usually understand what cancer is. Some will want to know more.

Whether they are teenagers or young children, talking about the cancer helps them cope.

Teenagers

It can help to encourage teenagers to ask questions, ask them their opinion and try to give them time to think about what is happening. They may have to, or want to, take on more responsibilities to help – perhaps cooking meals or looking after younger children. This can be hard at a time when they may want more freedom and independence.

Sometimes teenagers may find it hard to talk about a cancer diagnosis. You can encourage them to talk to someone they trust, who can support and listen to them. This might be a grandparent, family friend, teacher or counsellor. They may also find support online. The website riprap.org.uk offers information and support for teenagers who have a parent with cancer.

We have more information about talking to children and teenagers when an adult has cancer in our booklet Talking to children and teenagers when an adult has cancer.

Who can help?

Many people are available to help you and your family.

District nurses work closely with GPs and make regular visits to patients and their families at home if needed.

The hospital social worker can give you information about social services and benefits you may be able to claim. These may include meals on wheels, a home helper or money to help with hospital transport fares. The social worker may also be able to arrange childcare for you during and after treatment.

In many areas of the country, there are also specialist nurses called palliative care nurses. They are experienced in assessing and treating symptoms of advanced cancer. Palliative care nurses are sometimes known as Macmillan nurses. However, many Macmillan professionals are nurses who have specialist knowledge in a particular type of cancer. You may meet them when you are at a clinic or in hospital.

Marie Curie nurses help care for people approaching the end of their lives in their own homes. Your GP or hospital specialist nurse can usually arrange a visit by a palliative care or Marie Curie nurse.

There is also specialist help available to help you cope with the emotional impact of cancer and its treatment. You can ask your hospital doctor or GP to refer you to a doctor or counsellor who specialises in supporting people with cancer and their families. Our cancer support specialists on 0808 808 00 00 can tell you more about counselling and can let you know about services in your area.

Work and financial support

Financial help and benefits

When you are affected by cancer, you might need help with extra costs. Or you might need financial support if you have to stop working.

Statutory Sick Pay

If you work for an employer and take time off sick, you may be able to get Statutory Sick Pay. Your employer will pay this for up to 28 weeks.

Benefits

Benefits are payments from the government to people who need financial help. You can find out more about benefits and apply for them online. Go to gov.uk if you live in England, Wales or Scotland, or nidirect.gov.uk if you live in Northern Ireland.

Here are some benefits that you might be able to get if you are affected by cancer.

Employment and Support Allowance (ESA)

This benefit is for people under State Pension age who have an illness or disability that affects how much they can work. There are different types of ESA, so it is a good idea to speak to a welfare rights adviser to see if you can make a claim.

Universal Credit

Universal Credit (UC) is a benefit for people under State Pension age who are either:

- out of work – for example, because of an illness or because they are caring for someone

- on a low income.

UC can include money for basic living costs, looking after children and housing.

Personal Independence Payment

This benefit is for people aged 16 to State Pension age who have problems moving around or looking after themselves. You must have had these problems for 3 months and expect them to last for at least 9 months, unless you are terminally ill.

Attendance Allowance

This benefit is for people at or over State Pension age who have problems looking after themselves because of an illness or disability. This could mean problems getting out of bed, having a bath or getting dressed. You must have had these problems for at least 6 months, unless you are terminally ill.

Special rules

If you are terminally ill, you can apply for some benefits using a fast-track process called special rules. You can apply if your doctor thinks you may be reasonably expected to live for less than 6 months. Your claim will be dealt with quickly and you will get the benefit you applied for at the highest rate. It does not matter if you live longer than 6 months. Your doctor or specialist nurse will need to fill out a form for you.

Help for carers

Carer’s Allowance is a weekly benefit to help people who look after someone with a lot of care needs. If you do not qualify for it, you may still be able to apply for Carer’s Credit.

Carer’s Credit helps prevent gaps in your National Insurance record if you have to stop working while you are caring for someone else. You do not get money, but it protects your right to a State Pension later in life.

Macmillan Grants

Macmillan Grants are small, mostly one-off payments to help people with the extra costs cancer can cause. They are for people who have a low level of income and savings.

If you need things like extra clothing, help paying heating bills or even a relaxing holiday, you may be able to get a Macmillan Grant.

How much you get will depend on your situation and needs. A grant from Macmillan does not normally affect the benefits you are entitled to. It is an extra bit of help, not a replacement for other support.

Insurance

If you have, or have had, cancer, you may find it hard to get certain types of insurance. This includes life and travel insurance. A cancer diagnosis might also mean that you can get a payout from an insurance scheme that you already have.

If you are thinking about buying insurance or making a claim, one of our financial guides can help. You can call them on 0808 808 00 00.

We have more information in our booklet Travel and cancer. Our Online Community forum on Travel insurance may also be helpful. Visit macmillan.org.uk/travelinsurancegroup

More information

The benefits system and other types of financial support can be hard to understand. Macmillan has experienced welfare rights advisers and financial guides. You can speak to one by calling the Macmillan Support Line on 0808 808 00 00.

You can also get information about benefits and other types of financial help from Citizens Advice. Visit citizensadvice.org.uk

Our booklet Help with the cost of cancer has lots more information.

Work

You may not know how cancer will affect your work, now or in the future.

It is a good idea to talk to your manager soon after you are diagnosed. If your workplace has a human resources (HR) or personnel department, contact them as soon as you can. If they know how the cancer or treatment may affect your ability to work, they can support you better.

Some people stop working during cancer treatment and for a while after, until they feel ready to go back. Others keep working, perhaps with reduced hours or other changes to their job.

Some people may decide not to go back to work. Or they may choose to do something different. Others may not be able to go back to work because of the effects of cancer on their health. Going back to work may depend on the type of work you do or how much your income is affected.

It is important not to do too much, too soon. Your cancer doctor, GP or specialist nurse can help you decide when and if you should go back to work.

Our booklets Work and cancer, Working while caring for someone with cancer and Self-employment and cancer have more information that may be helpful. There is also lots more information at macmillan.org.uk/work

Employment rights

If you have, or have ever had, cancer, the law considers this as a disability. This means you cannot be treated less favourably than people who do not have cancer because you have cancer, or for reasons connected to the cancer. That would be discrimination.

The law also says your employer must make reasonable adjustments (changes) to your workplace and their work practices to help you stay at work or return to work.

If you live in England, Scotland or Wales, you are protected by the Equality Act 2010. If you live in Northern Ireland, you are protected by the Disability Discrimination Act 1995.

Our booklet Your rights at work when you are affected by cancer has more information.

Further information

About our information

We provide expert, up-to-date information about cancer. And all our information is free for everyone.

Order what you need

You may want to order more booklets or leaflets, or download more eBooks like this one. Visit be.macmillan.org.uk or call us on 0808 808 00 00.

We have booklets on different cancer types, treatments and side effects. We also have information about work, financial issues, diet, life after cancer and information for carers, family and friends.

Online information

All of our information is also available online at macmillan.org.uk/information-and-support There you’ll also find videos featuring real-life stories from people affected by cancer, and information from health and social care professionals.

Other formats

We also provide information in different languages and formats, including:

- audiobooks

- Braille

- British Sign Language

- Easy Read booklets

- large print

- translations.

Find out more at macmillan.org.uk/otherformats If you’d like us to produce information in a different format for you, email us at cancerinformationteam@macmillan.org.uk or call us on 0808 808 00 00.

Help us improve our information

We know that the people who use our information are the real experts. That’s why we always involve them in our work. If you’ve been affected by cancer, you can help us improve our information.

We give you the chance to comment on a variety of information including booklets, leaflets and fact sheets.

If you’d like to hear more about becoming a reviewer, email reviewing@macmillan.org.uk You can get involved from home whenever you like, and we don’t ask for any special skills – just an interest in our cancer information.

Other ways we can help you

At Macmillan, we know how a cancer diagnosis can affect everything, and we are here to support you.

Talk to us

If you or someone you know is affected by cancer, talking about how you feel and sharing your concerns can really help.

Macmillan Support Line

Our free, confidential phone line is open 7 days a week, 8am–8pm. Our cancer support specialists can:

- help with any medical questions you have about your cancer or treatment

- help you access benefits and give you financial advice

- be there to listen if you need someone to talk to

- tell you about services that can help you in your area.

Call us on 0808 808 00 00 or email us via our website, macmillan.org.uk/talktous

Information centres

Our information and support centres are based in hospitals, libraries and mobile centres. There, you can speak with someone face to face.

Visit one to get the information you need, or if you’d like a private chat, most centres have a room where you can speak with someone alone and in confidence.

Find your nearest centre at macmillan.org.uk/informationcentres or call us on 0808 808 00 00.

Talk to others

No one knows more about the impact cancer can have on your life than those who have been through it themselves. That’s why we help to bring people together in their communities and online.

Support groups

Whether you are someone living with cancer or a carer, we can help you find support in your local area, so you can speak face to face with people who understand. Find out about support groups in your area by calling us or by visiting macmillan.org.uk/selfhelpandsupport

Online community

Thousands of people use our online community to make friends, blog about their experiences and join groups to meet other people going through the same things. You can access it any time of day or night. Share your experiences, ask questions, or just read through people’s posts at community.macmillan.org.uk

The Macmillan healthcare team

Our nurses, doctors and other health and social care professionals give expert care and support to individuals and their families. Call us or ask your GP, consultant, district nurse or hospital ward sister if there are any Macmillan professionals near you.

Help with money worries

Having cancer can bring extra costs such as hospital parking, travel fares and higher heating bills. If you’ve been affected in this way, we can help.

Financial guidance

Our financial guidance team can give you advice on mortgages, pensions, insurance, borrowing and savings.

Help accessing benefits

Our benefits advisers can offer advice and information on benefits, tax credits, grants and loans. They can help you work out what financial help you could be entitled to. They can also help you complete your forms and apply for benefits.

Macmillan Grants

Macmillan offers one-off payments to people with cancer. A grant can be for anything from heating bills or extra clothing to a much-needed break.

Call us on 0808 808 00 00 to speak to a financial guide or benefits adviser, or to find out more about Macmillan Grants. We can also tell you about benefits advisers in your area.

Visit macmillan.org.uk/financialsupport to find out more about how we can help you with your finances.

Help with work and cancer

Whether you’re an employee, a carer, an employer or are self-employed, we can provide support and information to help you manage cancer at work. Visit macmillan.org.uk/work

Other useful organisations

There are lots of other organisations that can give you information or support.

Cervical cancer support organisations

Daisy Network

Email info@daisynetwork.org.uk

www.daisynetwork.org.uk

A support group for women who have early ovarian failure. The website gives information about premature menopause and related issues. It also has a mailing list for subscribers and details of other helpful groups.

Eve Appeal

Helpline 0808 802 0019

Email nurse@eveappeal.org.uk

www.eveappeal.org.uk

Information and support for anyone affected by gynaecological cancers. Also provide information about cervical screening and for trans, non-binary and intersex people.

Jo’s Cervical Cancer Trust

Helpline 0808 802 8000

www.jostrust.org.uk

Information and support for anyone affected by cervical cancer or abnormal cervical cell changes. You can use their Ask a Nurse service at www.jostrust.org.uk/get-support/ask-expert

Women’s Health Concern

www.womens-health-concern.org

Information and advice about women’s gynaecological and sexual health, well-being and lifestyle concerns.

General cancer support organisations

Cancer Black Care

Tel 020 8961 4151

www.cancerblackcare.org.uk

Offers UK-wide information and support for people from Black and ethnic minority communities who have cancer. Also supports their friends, carers and families.

Cancer Focus Northern Ireland

Helpline 0800 783 3339 (Mon to Fri, 9am to 1pm)

Email nurseline@cancerfocusni.org

www.cancerfocusni.org

Offers a variety of services to people affected by cancer in Northern Ireland.

Cancer Research UK

Helpline 0808 800 4040 (Mon to Fri, 9am to 5pm)

www.cancerresearchuk.org

A UK-wide organisation that has patient information on all types of cancer. Also has a clinical trials database.

Cancer Support Scotland

Tel 0800 652 4531 (Mon to Fri, 9am to 5pm)

Email info@cancersupportscotland.org

www.cancersupportscotland.org

Runs cancer support groups throughout Scotland. Also offers free complementary therapies and counselling to anyone affected by cancer.

Maggie’s

Tel 0300 123 1801

Email enquiries@maggies.org

www.maggies.org

Has a network of centres in many locations throughout the UK. Provides free information about cancer and financial benefits. Also offers emotional and social support to people with cancer, their family, and friends.

Penny Brohn UK

Helpline 0303 3000 118 (Mon to Fri, 10am to 2pm)

Email info@pennybrohn.org.uk

www.pennybrohn.org.uk

Offers physical, emotional and spiritual support across the UK, using complementary therapies and self-help techniques.

Riprap

www.riprap.org.uk

Developed especially for teenagers in the UK who have a parent with cancer. Has an online forum where teenagers going through similar experiences can talk to each other for support.

Tenovus

Helpline 0808 808 1010 (Mon to Fri, 9am to 5pm, and Sat to Sun, 10am to 1pm)

www.tenovuscancercare.org.uk

Aims to help everyone in the UK get equal access to cancer treatment and support. Funds research and provides support such as mobile cancer support units, a free helpline, benefits advice and an online ‘Ask the nurse’ service.

General health information

Health and Social Care in Northern Ireland

online.hscni.net

Provides information about health and social care services in Northern Ireland.

NHS.UK

www.nhs.uk

The UK’s biggest health information website. Has service information for England.

NHS Direct Wales

www.nhsdirect.wales.nhs.uk

NHS health information site for Wales.

NHS Inform

Helpline 0800 22 44 88 (7 days a week, 8am to 8pm)

www.nhsinform.scot

NHS health information site for Scotland.

Patient UK

www.patient.info

Provides people in the UK with information about health and disease. Includes evidence-based information leaflets on a wide variety of medical and health topics. Also reviews and links to many health- and illness-related websites.

Stopping smoking

NHS England

Helpline 0300 123 1044 (Mon to Fri, 9am to 8pm, and Sat to Sun, 11am to 4pm)

www.nhs.uk/better-health/quit-smoking/

Free support, expert advice and tools to help you stop smoking.

NHS Scotland

Helpline 0800 84 84 84 (Mon to Fri, 9am to 5pm)

www.nhsinform.scot/healthy-living/stopping-smoking

Free advice and support service for anyone trying to stop smoking.

NHS Wales

Tel 0808 278 6119

Text ‘HMQ’ to 80818

www.helpmequit.wales

A free NHS service to help people quit smoking.

PHA Northern Ireland

Text ‘QUIT’ to 70004

www.stopsmokingni.info

Free information and support to quit smoking.

Counselling

British Association for Counselling and Psychotherapy (BACP)

Tel 0145 588 3300 (Mon to Fri, 10am to 4pm)

Email bacp@bacp.co.uk

www.bacp.co.uk

Promotes awareness of counselling and signposts people to appropriate services across the UK. You can also search for a qualified counsellor on their ‘How to find a therapist’ page.

College of Sexual and Relationship Therapists

Tel 020 8106 9635

Email info@cosrt.org.uk

www.cosrt.org.uk

Promotes high standards of professional practice among sexual and relationship therapists. Has a list of therapists throughout the UK.

UK Council for Psychotherapy (UKCP)

Tel 020 7014 9955 (Mon to Fri, 9am to 5pm)

Email info@ukcp.org.uk

www.psychotherapy.org.uk

Holds the national register of psychotherapists and psychotherapeutic counsellors, listing practitioners who meet exacting standards and training requirements.

Emotional and mental health support

Mind

Helpline 0300 123 3393 (Mon to Fri, 9am to 6pm)

Email info@mind.org.uk

www.mind.org.uk

Provides information, advice and support to anyone with a mental health problem through its helpline and website.

Samaritans

Helpline 116 123

Email jo@samaritans.org

www.samaritans.org

Provides confidential and non-judgemental emotional support, 24 hours a day, 365 days a year, for people experiencing feelings of distress or despair.

Financial support or legal advice and information

Advice NI

Helpline 0800 915 4604

Email advice@adviceni.net

Provides advice on a variety of issues including financial, legal, housing and employment issues.

Benefit Enquiry Line Northern Ireland

Helpline 0800 232 1271 (Mon, Tue, Wed and Fri, 9am to 5pm, and Thu, 10am to 5pm)

Textphone 028 9031 1092

www.nidirect.gov.uk/money-tax-and-benefits

Provides information and advice about disability benefits and carers’ benefits in Northern Ireland. You can also call the Make the Call helpline on 0800 232 1271 to check you are getting all the benefits you are eligible for.

Carer’s Allowance Unit

Tel 0800 731 0297

Textphone 0800 731 0317 (Mon to Fri, 8am to 6pm)

www.gov.uk/carers-allowance-unit

Manages state benefits in England, Scotland and Wales. You can apply for benefits and find information online or through its helplines.

Citizens Advice

Provides advice on a variety of issues including financial, legal, housing and employment issues. Use their online webchat or find details for your local office by contacting:

England

Helpline 0800 144 8848

www.citizensadvice.org.uk

Scotland

Helpline 0800 028 1456

www.cas.org.uk

Wales

Helpline 0800 702 2020

www.citizensadvice.org.uk/wales

Disability and Carers Service

Tel 0800 587 0912 (Mon to Fri, 10am to 4pm)

Textphone 028 9031 1092

nidirect.gov.uk/contacts/disability-and-carers-service

Manages Disability Living Allowance, Attendance Allowance, Carer’s Allowance and Carer’s Credit in Northern Ireland. You can apply for these benefits and find information online or through its helplines.

GOV.UK

www.gov.uk

Has information about social security benefits and public services in England, Scotland and Wales.

Jobs and Benefits Office Enquiry Line Northern Ireland

Helpline 0800 022 4250 (Mon, Tue, Wed and Fri, 9am to 5pm, and Thu, 10am to 5pm)

Textphone 028 9031 1092

www.nidirect.gov.uk/money-tax-and-benefits

Provides information and advice about disability benefits and carers’ benefits in Northern Ireland.

Law Centres Network

www.lawcentres.org.uk

Local Law Centres provide advice and legal assistance. They specialise in social welfare issues including disability and discrimination.

Local councils (England, Scotland and Wales)

Your local council may have a welfare rights unit that can help you with benefits. You can also contact your local council to claim Housing Benefit and Council Tax Reduction, education benefits, and for help from social services (the Social Work department in Scotland). You should be able to find your local council’s contact details in your phone book or visit:

England

www.gov.uk/find-local-council

Scotland

www.cosla.gov.uk/councils

Wales

www.wlga.wales/welsh-local-authority-links

Money Advice Scotland

Tel 0141 572 0237

Email info@moneyadvicescotland.org.uk

www.moneyadvicescotland.org.uk

Use the website to find qualified financial advisers in Scotland.

NiDirect

www.nidirect.gov.uk

Has information about benefits and public services in Northern Ireland.

Northern Ireland Housing Executive

Tel 03448 920 902 (Daily, 8.30am to 5pm)

Textphone 18001 03448 920 900

www.nihe.gov.uk

Offers help to people living in socially rented, privately rented and owner-occupied accommodation.

StepChange Debt Charity

Tel 080 0138 1111

www.stepchange.org

Provides free debt advice through phone, email, the website and online through live chats with advisers.

Unbiased.co.uk

Helpline 0800 023 6868

Email contact@unbiased.co.uk

www.unbiased.co.uk

You can search the website for qualified advisers in the UK who can give expert advice about finances, mortgages, accounting or legal issues.

LGBT-specific support

LGBT Foundation

Tel 0345 330 3030 (Mon to Fri, 9am to 9pm)

Email helpline@lgbt.foundation

www.lgbt.foundation

Provides a range of services to the LGBT community, including a helpline, email advice and counselling. The website has information on various topics including sexual health, relationships, mental health, community groups and events.

Support for carers

Carers Trust

Tel 0300 772 9600 (Mon to Fri, 9am to 5pm)

Email info@carers.org

www.carers.org

Provides support, information, advice and services for people caring at home for a family member or friend. You can find details for UK offices and search for local support on the website.

Carers UK

Helpline (England, Scotland, Wales) 0808 808 7777

(Mon to Fri, 9am to 6pm)

Helpline (Northern Ireland) 028 9043 9843

Email advice@carersuk.org

www.carersuk.org

Offers information and support to carers across the UK. Has an online forum and can put people in contact with local support groups for carers.

Cancer registries

The cancer registry

A national database that collects information on cancer diagnoses and treatment. This information helps the NHS and other organisations plan and improve health and care services.

There is one in each country in the UK:

National Cancer Registration and Analysis Service

Tel 020 7654 8000

Email enquiries@phe.gov.uk

www.ndrs.nhs.uk

Tel (Ireland) 021 4318 014

www.ncri.ie (Ireland)

Scottish Cancer Registry

www.ndrs.nhs.uk/cancer-registration-your-rights-and-privacy

Welsh Cancer Intelligence and Surveillance Unit (WCISU)

Tel 02920 104278

phw.nhs.wales/services-and-teams/welsh-cancer-intelligence-and-surveillance-unit-wcisu/

Northern Ireland Cancer Registry

Tel 0289 097 6028

Email nicr@qub.ac.uk

www.qub.ac.uk/nicr

Disclaimer, thanks and sources

Disclaimer

We make every effort to ensure that the information we provide is accurate and up to date, but it should not be relied upon as a substitute for specialist professional advice tailored to your situation. So far as is permitted by law, Macmillan does not accept liability in relation to the use of any information contained in this publication, or third-party information or websites included or referred to in it. Some photos are of models.

Thanks

This eBook has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been approved by our Senior Medical Editor, Professor Nick Reed, Consultant Clinical Oncologist.

With thanks to: Dr Rosie Harrand, Consultant Clinical Oncologist; Miss Eva Myriokefalitaki, Consultant Gynaecological Oncology Surgeon; Mr Raj Naik, Consultant Gynaecological Oncologist; Claire Parkinson, Macmillan Gynaecology Nurse Specialist; and Dr Alexandra Taylor, Consultant Clinical Oncologist.

Thanks also to the people affected by cancer who reviewed this edition, and those who shared their stories.

We welcome feedback on our information. If you have any, please contact cancerinformationteam@macmillan.org.uk

Sources

Below is a sample of the sources used in our cervical cancer information. If you would like more information about the sources we use, please contact us at cancerinformationteam@macmillan.org.uk

Reed N, Balega J, Barwick T, et al. British Gynaecological Cancer Society (BGCS) cervical cancer guidelines: recommendations for practice. 2020. Available from https://www.bgcs.org.uk/wp-content/uploads/2020/05/FINAL-Cx-Ca-Version-for-submission.pdf [accessed October 2020].

Can you do something to help?

We hope this eBook has been useful to you. It’s just one of our many publications that are available free to anyone affected by cancer. They’re produced by our cancer information specialists who, along with our nurses, benefits advisers, campaigners and volunteers, are part of the Macmillan team. When people are facing the toughest fight of their lives, we’re there to support them every step of the way.

We want to make sure no one has to go through cancer alone, so we need more people to help us. When the time is right for you, here are some ways in which you can become a part of our team.

5 ways you can help someone with cancer

Share your cancer experience

Support people living with cancer by telling your story, online, in the media or face to face.

Campaign for change

We need your help to make sure everyone gets the right support. Take an action, big or small, for better cancer care.

Help someone in your community

A lift to an appointment. Help with the shopping. Or just a cup of tea and a chat. Could you lend a hand?

Raise money

Whatever you like doing you can raise money to help. Take part in one of our events or create your own.

Give money

Big or small, every penny helps.

Call us to find out more 0300 1000 200

macmillan.org.uk/getinvolved