A practical guide to understanding cancer

Transcription

1 A practical guide to understanding cancer

2 You just don t expect it to happen to someone who s 30 years old. We were really happy and then cancer came in like a sledgehammer and ruined everything. Kate, diagnosed with cervical cancer in 2010

3 Contents 1 Contents About this booklet 3 The cervix and cervical cancer 5 Diagnosing cervical cancer 17 Treating cervical cancer 31 After your treatment 83 Your feelings and relationships 89 Work and financial support 99 Further information 105

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5 About this booklet 3 About this booklet This booklet is about cancer of the cervix. We hope it answers some of your questions and helps you deal with some of the feelings you may have. We ve also listed other sources of support and information, which we hope you ll find useful. We can t advise you about the best treatment for you. This information can only come from your doctor, who knows your full medical history. If you d like to discuss this information, call the Macmillan Support Line free on , Monday Friday, 9am 8pm. If you re hard of hearing you can use textphone , or Text Relay. For non-english speakers, interpreters are available. Alternatively, visit macmillan.org.uk Throughout this booklet we ve included quotes from people who have had cervical cancer. Some are from the website healthtalkonline.org Others are from people who have chosen to share their experiences with us by becoming a Cancer Voice. To find out more, visit macmillan.org.uk/cancervoices Turn to pages for some useful addresses and websites, and page 120 to write down questions for your doctor or nurse. If you find this booklet helpful, you could pass it on to your family and friends. They may also want information to help them support you.

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7 The cervix and cervical cancer What is cancer? 6 The cervix 8 About cervical cancer 10 Types of cervical cancer 11 Symptoms of cervical cancer 15

8 6 Understanding cervical cancer What is cancer? Cancer starts in cells in our body. Cells are tiny building blocks that make up the organs and tissues in our bodies. They divide to make new cells in a controlled way. This is how our bodies grow, heal and repair. Cells receive signals from the body telling them when to divide and grow, and when to stop growing. When a cell is no longer needed or can t be repaired, it gets a signal to stop working and dies. Cancer develops when the normal workings of a cell go wrong and the cell becomes abnormal. The abnormal cell keeps dividing, making more and more abnormal cells. These eventually form a lump (tumour). Not all lumps are cancer. Doctors can tell if a lump is cancer by removing a small sample of tissue or cells from it. This is called a biopsy. The doctors examine the sample under a microscope to look for cancer cells. Normal cells Cells forming a tumour

9 The cervix and cervical cancer 7 A lump that is not cancer (benign) may grow but cannot spread to anywhere else in the body. It usually only causes problems if it puts pressure on nearby organs. A lump that is cancer (malignant) can grow into nearby tissue. Sometimes, cancer cells spread from where the cancer first started (the primary site) to other parts of the body. They can travel through the blood or lymphatic system (see page 9). When the cells reach another part of the body, they may begin to grow and form another tumour. This is called a secondary cancer or a metastasis. We have a video on our website that explains how cancer develops. You can watch it at macmillan.org.uk/aboutcancer Your data and the cancer registry When you are diagnosed with cancer in the UK, some information about you and your health 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. Talk to your doctor or nurse if you have any questions. If you do not want your information included in the registry, you can contact the cancer registry in your country. You can find more information at macmillan.org.uk/cancerregistry

10 8 Understanding cervical cancer The cervix The cervix is the lower part of the womb (uterus). It is joined to the top of the vagina and is sometimes called the neck of the womb. The womb is a muscular, pear-shaped organ. The lining of the womb is shed each month when a woman has her period. Fallopian tube Bladder Cervical canal Vagina Ovary Womb Cervix Urethra The cervix and surrounding structures This booklet is about cancer of the cervix (neck of the womb). Cancer of the womb is different and is discussed in our booklet Understanding womb (endometrial) cancer.

11 The cervix and cervical cancer 9 The lymphatic system 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. There is a collection of lymph nodes close to the cervix. Pelvic lymph nodes Cervix The pelvic lymph nodes

12 10 Understanding cervical cancer About cervical cancer Each year, over 2800 women are diagnosed with cervical cancer in the UK. It usually affects women over the age of 20. The highest rates occur in women aged between How cervical cancer develops Cervical cancer takes many years to develop. Before it develops, changes take place in the cells of the cervix. These changes are called cervical intraepithelial neoplasia (CIN). CIN is not cancer. However, you may hear some doctors or nurses describing it as a pre-cancerous condition. This is because if it is not treated it might develop into cancer. Most women with CIN do not develop cancer, and if treatment is needed for CIN it is nearly always effective. Our booklet Understanding cervical screening has more information about CIN and its treatment.

13 The cervix and cervical cancer 11 Types of cervical cancer There are two main types of cervical cancer. The most common is squamous cell carcinoma. This develops from flat cells that cover the outer surface of the cervix at the top of the vagina. The other type is adenocarcinoma. This develops from glandular cells that line the cervical canal (see page 8). This can be more difficult to detect with cervical screening tests (see pages 13 14). Less common types of cervical cancer are: adenosquamous carcinoma clear-cell carcinoma small-cell and neuroendocrine carcinoma. Our cancer support specialists can give you more information about these types of cervical cancer call us on The tests listed on pages will show which type of cervical cancer you have. They also give information about the stage of your cancer (see pages 27 29) and whether there are signs of microscopic cancer cells in the lymph or blood vessels. This information, along with a physical examination and the results of further tests (see pages 23 26), will help your doctors decide which type of treatment is best for you.

14 12 Understanding cervical cancer Risk factors and causes HPV and sex The main cause of CIN and cervical cancer is infection from the human papilloma virus (HPV). HPV is a common group of viruses that can affect the cells of the cervix. There are over 100 types of this virus and each is known by a number. Most are called low-risk HPV types and don t cause cervical cancer. HPV 16 and 18 are called high-risk HPV types. They can increase your risk of developing CIN and cervical cancer. HPV is mainly passed on during sex. But it is thought there may be other ways of spreading the virus that have not yet been identified. Having sex at an early age and having several sexual partners can increase your risk of catching HPV. However HPV is so common that most sexually active women will be exposed to it at some point in their life. We have more information about HPV and cancer, which we can send you. Smoking If you smoke you are more likely to develop CIN and squamous cell cervical cancer (see page 11).

15 The cervix and cervical cancer 13 A weakened immune system If you have a weakened immune system, CIN is more likely to develop into cancer. Your immune system may be weakened by smoking, a poor diet and infections such as HIV/AIDS. Contraceptive pill If you take the contraceptive pill for more than 10 years this may slightly increase your risk of developing cervical cancer. But for most women the benefits of taking the pill outweigh the risks. Like other cancers, cervical cancer is not infectious and can t be passed on to other people. Reducing the risk of cervical cancer Vaccines There are two vaccines which prevent HPV infection Gardasil and Cervarix. Both vaccines have been shown to protect against high-risk HPV 16 and 18. It is hoped that the vaccines will prevent at least 7 out of 10 cases (70%) of the most common type of cervical cancer (squamous cell cervical cancer see page 11). These vaccines work best if they are given to children before puberty and before they start having sex. All year-old girls in the UK are now routinely offered the HPV vaccine Gardasil. The vaccines can also be obtained privately. Cervical screening This is an important way of detecting early changes in the cells of your cervix. A nurse will take a sample of cells from your cervix. This is sent to a laboratory and examined for any changes. If changes are found you may be referred for further tests.

16 14 Understanding cervical cancer Depending on the results of these, you may be offered treatment to get rid of the CIN and help prevent you developing cancer. In the UK, the NHS provides cervical screening tests for all women within a specific age range who are registered with a GP. The age range for screening varies across the UK: In England, Wales and Northern Ireland screening takes place between the ages of In Scotland screening takes place between the ages of We have more information in our booklet Understanding cervical screening. We can send you a copy.

17 The cervix and cervical cancer 15 Symptoms of cervical cancer Very early-stage cervical cancer may have no symptoms. This is why it s important to go for your regular cervical screening, so that any early cell changes can be picked up. Common symptoms of cervical cancer can include: 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 discomfort during sex pain in the pelvic area. If you re attending regular screening, you should let your GP know if you develop any of these symptoms between your tests. There are many other conditions that can cause these symptoms, but it s important to see your GP or practice nurse to get them checked out. You may feel embarrassed talking about these symptoms. But remember, your GP or practice nurse will see many women with similar symptoms and will do their best to put you at ease.

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19 Diagnosing cervical cancer How cervical cancer is diagnosed 18 Staging 27

20 18 Understanding cervical cancer How cervical cancer is diagnosed Usually you begin by seeing your family doctor (GP), who will examine you and may refer you to the hospital for a specialist assessment and tests. If your GP suspects you may have cancer, you will be referred urgently to the hospital and seen within two weeks. If you have had an abnormal smear test following your cervical screening test you may be referred directly for a colposcopy. Colposcopy A colposcopy allows your doctor or colposcopy nurse to look closely at your cervix. They use a colposcope (a special magnifying glass) to help them examine your cervix in detail. You ll have your colposcopy at your local colposcopy unit. This is usually at a hospital outpatient clinic. Before your colposcopy your doctor or nurse will ask you about your symptoms. They ll ask you to undress from the waist down and help you position yourself on a specially designed chair or examination table. When you re lying comfortably, the colposcopist will put a speculum into your vagina, in the same way as in a cervical screening test. This allows them to see your cervix. They will paint your cervix with different liquids to help any abnormal areas show up more clearly. They ll also shine a light on the cervix when they look through the colposcope to examine its surface.

21 Diagnosing cervical cancer 19 The colposcope doesn t touch you or go inside your body. If the colposcopist sees any abnormal areas, they ll take a small sample of cells (biopsy). These are examined under a microscope in the laboratory. A colposcopy takes minutes. It s not usually painful, but you may feel some stinging if a biopsy is taken. The biopsy may also cause some slight bleeding for a couple of days afterwards. You shouldn t have sex for five days to allow the biopsy site to heal. Large loop excision of the transformation zone (LLETZ) If the abnormal area can t be seen properly with a colposcope, you may have a LLETZ procedure. LLETZ is the most common way of removing abnormal cells from an area of the cervix called the transformation zone (see page 21). It is sometimes called LEEP (loop electrosurgical excision procedure). It may be done during your colposcopy appointment or at a separate outpatient appointment. It normally takes 5 10 minutes. Once you re in a comfortable position, your doctor will put a speculum into your vagina and inject some local anaesthetic into your cervix to numb it. They will use the colposcope to look at your cervix. They then use a thin wire, which is shaped in a loop, to cut away the abnormal area. The procedure is not normally painful, but you may feel uncomfortable and have some period-like pains for a couple of days. You can take simple painkillers if you need to.

22 20 Understanding cervical cancer It s usual to have some slight bleeding or discharge afterwards, which can last for a few weeks. You should avoid sex, swimming, using tampons and baths until the bleeding has stopped. This is to reduce the risk of developing an infection. Your doctor or nurse will tell you more about the procedure and what to expect. Needle excision of the transformation zone (NETZ) This is similar to a LLETZ, except that the thin wire used to cut away the affected area is straight, rather than in a loop. Cone biopsy Some women have a cone biopsy to remove the abnormal area in the cervix. This takes about 15 minutes and it is usually done under a general anaesthetic. You may need to stay in hospital overnight. Your doctor will remove a small, cone-shaped section of the cervix, which is large enough to contain the abnormal cells.

23 Diagnosing cervical cancer 21 Womb (Uterus) Cervix Vagina Area of biopsy Transformation zone Area of cone biopsy shown by dotted line After a cone biopsy, your doctor or nurse will place a gauze pack, which is like a tampon, in your vagina to help stop any bleeding. This is usually removed within 24 hours, and before you go home. They may also put a thin tube, called a catheter, into your bladder so that you can pass urine while the gauze pack is in place. It s normal to have some light bleeding for a few weeks after a cone biopsy. You should avoid sex, swimming, using tampons, baths and strenuous physical activity for 4 6 weeks while the cervix is healing.

24 22 Understanding cervical cancer Your doctor will tell you when and how you ll be told the results of your tests and whether you need more tests or treatment. Waiting for test results can be difficult and you may need support from family, friends or support organisations (see pages ) while you re waiting for your results.

25 Diagnosing cervical cancer 23 Further tests If your initial tests show you have cervical cancer, you will need to have further tests to see whether the cancer has spread beyond the cervix and to check your general health. The tests may include any of the following: MRI (magnetic resonance imaging) scan This test uses magnetism to build up a detailed picture of areas of your body. The scanner is a powerful magnet so you may be asked to complete and sign a checklist to make sure it s safe for you. The checklist asks about any metal implants you may have, such as a pacemaker, surgical clips or bone pins. You should also tell your doctor if you ve ever worked with metal or in the metal industry as very tiny fragments of metal can sometimes lodge in the body. If you do have any metal in your body, it s likely that you won t be able to have an MRI scan. In this situation, another type of scan can be used. Before the scan, you ll be asked to remove any metal belongings including jewellery. Some people are given an injection of dye into a vein in the arm, which doesn t usually cause discomfort. This is called a contrast medium and can help the images from the scan to show up more clearly. During the test, you ll lie very still on a couch inside a long cylinder (tube) for about 30 minutes. It s painless but can be slightly uncomfortable, and some people feel a bit claustrophobic. It s also noisy, but you ll be given earplugs or headphones. You can hear, and speak to, the person operating the scanner.

26 24 Understanding cervical cancer CT (computerised tomography) scan A CT scan takes a series of x-rays, which build up a three-dimensional picture of the inside of the body (see the photo opposite). The scan takes minutes and is painless. It uses a small amount of radiation, which is very unlikely to harm you and will not harm anyone you come into contact with. You will be asked not to eat or drink for at least four hours before the scan. You may be given a drink or injection of a dye, which allows particular areas to be seen more clearly. This may make you feel hot all over for a few minutes. It s important to let your doctor know if you are allergic to iodine or have asthma, because you could have a more serious reaction to the injection. You ll probably be able to go home as soon as the scan is over. PET/CT scan This is a combination of a CT scan, which takes a series of x-rays to build up a three-dimensional picture, and a positron emission tomography (PET) scan. A PET scan uses low-dose radiation to measure the activity of cells in different parts of the body. PET/CT scans give more detailed information about the part of the body being scanned. You may have to travel to a specialist centre to have one. You can t eat for six hours before the scan, although you may be able to drink. A mildly radioactive substance is injected into a vein, usually in your arm. The radiation dose used is very small. The scan is done after at least an hour s wait. It usually takes minutes. You should be able to go home after the scan. Examination under anaesthetic (EUA) This is an examination of the vagina and cervix under a general anaesthetic. It allows your doctor to examine you thoroughly without it being uncomfortable. They may also remove a small sample of tissue (biopsy). Your doctor may also look into your

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28 26 Understanding cervical cancer bladder and the lower end of your large bowel (the colon and rectum) to see if the cancer has spread. Your doctor will use a cystoscope to look into your bladder. This is a small, fibre-optic tube with a light. If there are any abnormal areas, they can use the cystoscope to take biopsies. Your doctor will use a similar tube called a proctosigmoidoscope to look into the lower end of your colon and rectum. This is also used to take biopsies from any abnormal areas. You may have some slight bleeding for a couple of days after an EUA. Your doctor or nurse will be able to tell you more about the examination and what to expect afterwards. Blood tests Samples of your blood may be taken to check your general health, the number of blood cells in your blood (blood count) and how well your kidneys are working. Chest x-ray This uses x-rays to take a picture of your chest, to check your lungs and heart. 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 one of the organisations listed on pages can also provide support. You can also talk things over with one of our cancer support specialists on

29 Diagnosing cervical cancer 27 Staging 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: Stage 1 The cancer cells are only within the cervix. Stage 1 can be further divided into: Stage 1A The cancer can only be seen with a microscope or colposcope. Stage 1A1 The cancer is 3mm or less deep and 7mm or less wide. Stage 1A2 The cancer is between 3 5mm deep and 7mm or less wide. Stage 1B The cancer growth is larger but still confined to the cervix. Stage 1B1 The cancer is not larger than 4cm. Stage 1B2 The cancer is larger than 4cm.

30 28 Understanding cervical cancer Stage 2 The cancer has spread into surrounding structures such as the upper part of the vagina or the tissues next to the cervix. Stage 2 can be further divided into: Stage 2A The cancer has spread into the upper part of the vagina. Stage 2A1 The tumour size is not larger than 4cm. Stage 2A2 The tumour size is larger than 4cm. Stage 2B The cancer has spread into the tissues next to the cervix. Stage 3 The cancer has spread to areas such as the lower part of the vagina, or the tissues at the sides of the pelvic area. Stage 3 can be further divided into: Stage 3A The cancer has spread into the lower part of the vagina. Stage 3B The cancer has spread through to the tissues at the sides of the pelvic area and may be pressing on one of the ureters (the tubes urine passes through from the kidneys to the bladder). If the tumour is causing pressure on a ureter, there may be a build-up of urine in the kidney.

31 Diagnosing cervical cancer 29 Stage 4 The cancer has spread to the bladder or bowel or beyond the pelvic area. Stage 4 can be further divided into: Stage 4A The cancer has spread to nearby organs such as the bladder and bowel. Stage 4B The cancer has spread to distant organs such as the lungs, liver or bone. Your doctors may use the following terms to describe your 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 cervical cancer this usually means stage 4B. If the cancer comes back after initial treatment, this is known as recurrent cancer.

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33 Treating cervical cancer Treatment overview 32 Surgery 38 Radiotherapy 47 Chemotherapy 62 Chemoradiation 69 Targeted treatments 70 Menopausal symptoms, sex and fertility 71 Research clinical trials 80

34 32 Understanding cervical cancer Treatment overview Cancer of the cervix can be treated with surgery, radiotherapy, chemotherapy, or a combination of these treatments. Your doctor will advise you on the best plan of treatment for you, taking into account a number of factors. These include your general health, and the type and stage of the cancer. The following summarises the treatments that may be used. Early-stage cancer Surgery Surgery (see pages 38 46) is the main treatment for women with early-stage cancer of the cervix. Radiotherapy You may be offered radiotherapy (see pages 47 61): as an alternative to surgery after your surgery to reduce the risk of the cancer coming back. Chemoradiation Radiotherapy in combination with chemotherapy is called chemoradiation (see page 69). Some doctors offer chemoradiation instead of surgery or to reduce the risk of your cancer coming back.

35 Treating cervical cancer 33 Locally advanced cancer Chemoradiation This is the most effective treatment for locally advanced cancer. Surgery If your cancer has come back in the pelvis (the area of the body between the hips) but not to other parts of the body (such as the lungs) you may be offered an operation known as a pelvic exenteration. This is a major operation and is only suitable for a small number of women. We have more detailed information on pelvic exenteration we can send you. Advanced-stage cancer Chemotherapy Chemotherapy (see pages 62 68) may be used if your cancer has spread to other parts of your body such as the liver or lungs. Chemotherapy can help to shrink and control your cancer and relieve symptoms. This is called palliative treatment. Targeted treatment Bevacizumab (Avastin ) (see page 70) is a drug known as a monoclonal antibody. It may be offered to you alongside chemotherapy.

36 34 Understanding cervical cancer How treatment is planned Multidisciplinary team If you have been diagnosed with cervical cancer you should be treated 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 own wishes too. The multidisciplinary team (MDT) will include: a surgeon who specialises in gynaecological cancers a clinical oncologist (radiotherapy and chemotherapy specialist doctor who specialises in gynaecological cancers) a medical oncologist (chemotherapy specialist doctor who specialises in gynaecological cancers) a gynae-oncology specialist nurse a radiologist (a doctor who analyses x-rays and scans) a pathologist who examines cancer cells under a microscope and advises on the type and extent of the cancer. It may also include other healthcare professionals, such as a dietitian, physiotherapist, occupational therapist, radiographer, psychologist or counsellor. After the team has met, your specialist will discuss your treatment options with you. You can ask questions about anything you don t understand or are worried about. You should also be given a telephone number for your specialist nurse or key worker who you can contact if you have questions when you get home.

37 Treating cervical cancer 35 You can also talk to our cancer support specialists on The benefits and disadvantages of treatment Many people are frightened at the idea of having cancer treatments, particularly because of the side effects that can occur. However, these can usually be controlled with medicines. Treatment can be given for different reasons and the potential benefits will vary depending upon your individual situation. If you have early or locally advanced cervical cancer, treatment is given with the aim of curing the cancer. If the cancer is advanced and has spread to other parts of the body, treatment may only be able to control it, improving symptoms and quality of life. However, 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 ve been offered treatment that aims to cure the cancer, deciding whether to accept it may not be difficult. However, 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.

38 36 Understanding cervical cancer 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. 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 don t understand what you ve been told, let the staff know straight away, so they can explain again. Some cancer treatments are complex, so it s not unusual to need repeated explanations. It s 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.

39 Treating cervical cancer 37 People sometimes feel that hospital staff are too busy to answer their questions, but it s 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 don t have it. It s essential to tell a doctor or the nurse in charge, so they can record your decision in your medical notes. You don t 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.

40 38 Understanding cervical cancer Surgery Types of surgery There are three different types of surgery used to treat early stage cervical cancer: cone biopsy hysterectomy radical trachelectomy. The type of surgery you have will depend on the size of your cancer and whether it has spread beyond the cervix. Cone biopsy If the cancer cells have spread only slightly beyond the surface of the cervix, it may be possible to treat it by removing a cone-shaped piece of tissue from the cervix (see pages 20 22). Hysterectomy A hysterectomy is an operation to remove the womb (uterus). There are two types that may be carried out to treat cervical cancer. The type you have will depend on the stage of your cancer: Total hysterectomy. A surgeon will take out your womb and cervix. They sometimes remove your pelvic lymph nodes (see page 9) as well. If you have had your menopause your fallopian tubes and ovaries will also be removed. Occasionally you will have these removed even if you haven t had your menopause. This operation is only suitable if you have very early-stage cervical cancer (stage 1A1 or 1A2 see page 27).

41 Treating cervical cancer 39 Radical hysterectomy. The surgeon will take out your womb, cervix, tissue around the cervix (parametrium), fallopian tubes, pelvic lymph nodes and upper part of the vagina. Sometimes they ll take out the ovaries and abdominal lymph nodes as well. Where possible, the ovaries are not taken out in young women with cancer of the cervix. This is because removal of the ovaries brings on an early menopause. We have more information about early menopause and ways to help you manage menopausal symptoms on pages A hysterectomy can be carried out in different ways: Abdominal hysterectomy. You will normally have this operation under a general anaesthetic. Your surgeon will cut across your tummy (abdomen), just above the pubic hair. Sometimes, they may cut downwards from the belly button to the pubic hair. Laparoscopic hysterectomy (also called keyhole surgery). You will usually have this operation under a general anaesthetic. Your surgeon will make several small cuts in your tummy. They ll put small surgical instruments and a laparoscope (a telescope with a camera on the end) through the cuts. The womb, cervix and ovaries (if needed) are then removed through your vagina or a small cut in your tummy. We have more information about the different types of hysterectomy in our fact sheet Having a hysterectomy.

42 40 Understanding cervical cancer After a hysterectomy you will no longer have a womb, so if you re of child-bearing age you ll be unable to become pregnant. Being told that your cancer treatment will mean you can no longer have children can be very difficult. If you re told you need to have a hysterectomy, you can ask your hospital doctor to refer you to a fertility specialist before your surgery to discuss possible options. You can read more about this on pages Radical trachelectomy This operation is only suitable if you have very early-stage cancer of the cervix. If you would still like to be able to have children, you may be able to have an operation called a radical trachelectomy. In this operation, the womb (uterus) is left in place so you can still have a baby. Your surgeon will remove the cervix, the tissues next to the cervix and the upper part of the vagina. They will also remove the lymph nodes in the pelvis, usually through tiny cuts in your tummy (called keyhole or laparoscopic surgery). They will leave the womb in place and put a stitch at the bottom of it during the surgery. This helps keep your womb closed during pregnancy. There is a higher chance of miscarriage after this procedure, and if you become pregnant the baby will need to be delivered by caesarean section. This type of surgery is only done in a few hospitals in the UK. You may need to ask your surgeon to refer you to a specialist hospital if you would like to discuss the possibility of having a radical trachelectomy. It s important your surgeon fully explains to you the benefits and possible risks of this type of operation.

43 Treating cervical cancer 41 Before your operation Before your operation, you ll have some tests to prepare you for surgery. These tests are usually done a few days or weeks beforehand at a pre-assessment clinic. A member of the surgical team and a specialist nurse will discuss your operation with you. You ll also see the doctor who will give you your anaesthetic (the anaesthetist). You ll usually be admitted to hospital on the morning of your operation. You ll be given special elastic stockings (TED stockings) to wear during and after the operation to prevent blood clots forming in your legs. Make sure you discuss any questions or concerns that you have about the operation with your nurse or surgeon. If you smoke, try to give up or cut down before your operation. This will help reduce your risk of chest problems, such as a chest infection, and will help your wound to heal after the operation. Your GP can give you advice and you may find it helpful to read our information on giving up smoking. Enhanced Recovery Programmes (ERP) Some hospitals follow an enhanced recovery programme. This can help reduce complications following surgery and speed up your recovery. The programme involves careful planning before your operation. This is to make sure that you re properly prepared and that any arrangements that you may need at home are in place. Your hospital team will encourage you to have high-protein and high-calorie supplements before and after your surgery. They will also encourage you to start moving around as soon as possible, sometimes on the day of the operation. Your surgeon will try not to use any tubes or drains unless absolutely needed. If you have a catheter and a drip (fluids through a vein), these will be removed soon after surgery.

44 42 Understanding cervical cancer You ll be allowed to eat and drink soon after surgery as well. And after you ve gone home you ll be regularly reviewed to make sure that you re recovering well. You can ask your surgeon whether you will be suitable for this programme. Not all hospitals use the ERP for surgery and it s not suitable for everyone. After your operation In the ward After your hysterectomy or trachelectomy you ll be encouraged to start moving about as soon as possible. This is an essential part of your recovery. Even if you have to stay in bed, the nurses will encourage you to do regular leg movements and deep breathing exercises. You may be seen by a physiotherapist who can help you do the exercises. You ll also be given injections of a drug to help prevent blood clots. Drips and drains After your operation you ll be given fluids into a vein in your hand or arm, called a drip or an intravenous infusion. Once you re eating and drinking normally again it s taken out. You ll usually have a tube (catheter), which is put in during the operation, to drain urine from your bladder. This can be taken out a few hours after your surgery but in some people it may need to stay in for longer. If you have a wound drain (a fine tube in the wound draining fluid that s collecting into a small bottle) it s usually taken out in a few days. Pain It s normal to have some pain or discomfort for a few days after surgery, but this can be controlled effectively with painkillers. It s important to let your doctor know as soon as possible if the pain isn t controlled, so that your painkillers can be changed.

45 Treating cervical cancer 43 You may be given painkillers through an epidural for the first day after surgery. This is a small, thin tube that s inserted in your back into the space just outside the membranes surrounding your spinal cord. An epidural will give you continuous pain relief. Or you may have painkillers through a pump known as a patient-controlled analgesia pump (PCA pump). A PCA pump will be attached to a fine tube (cannula), which is placed in a vein in your arm. You can control the pump yourself using a handset that you press when you need more of the painkiller. It s fine to press the handset whenever you have pain, as the pump is designed so that you can t give yourself too much painkiller. You will be shown how to use this type of pump. Some painkillers can cause constipation. Let your nurse know if you have difficulty opening your bowels. Your wound You ll have a dressing covering your wound, which may be left undisturbed for the first few days. After this, you ll usually have the dressings changed if there s any leakage from the wound. If necessary, you can have any stitches or staples removed after you ve gone home. This will be done by a district nurse or at your GP surgery. Always let your doctor know if your wound becomes hot, painful or starts to leak fluid as these are possible signs of infection. Going home Your hospital team will give you an idea about how long you might need to stay in hospital. You ll probably be ready to go home about 3 8 days after an abdominal hysterectomy. If you ve had laparoscopic (keyhole) surgery or a trachelectomy, you may be able to go home 2 4 days after your operation.

46 44 Understanding cervical cancer If you think you might have problems when you go home, for example if you live alone or have several flights of stairs to climb, let your nurse know when you are admitted to the hospital, so that they can arrange help. Before you go home, you ll be given an appointment to attend an outpatient clinic for your post-operative check-up. This may be posted to you after you have left hospital. If you need to go home with a urinary catheter (see page 42), the hospital team can arrange for a district nurse to visit you at home to check how things are. You ll be given instructions on how to look after yourself to make sure your wound heals and you recover well. It s important that you follow the advice you re given. When I got home from my operation, I found just going up the stairs could be uncomfortable and tiring. But my family was there for support, so I got lots of rest. Paulina Vaginal care If you ve had a hysterectomy, it s common to have a vaginal discharge for up to six weeks afterwards. This is usually reddishbrown in colour. If the discharge becomes bright red, heavy, or contains clots, you should contact your doctor straight away.

47 Treating cervical cancer 45 To reduce the risk of getting an infection, you should use sanitary pads rather than tampons and have a shower or bath every day. If you have a trachelectomy it s normal to have a light reddishbrown vaginal discharge. Your doctor or nurse will tell you how long this discharge is likely to last. They ll advise you to shower daily and not to have sex or place anything in your vagina (such as tampons) for about six weeks after your surgery. You should also avoid swimming. This is so the surgical area can heal properly and the risk of infection is reduced. Sex Your surgeon will usually advise you not to have sex for at least six weeks after your operation. This is to give your wound time to heal properly. After that you ll be able to get back to your usual sex life. But it s not unusual to need more time before you feel ready, especially if you re having other treatments as well. There s more information about this on page 76. Physical activity It s important to avoid strenuous physical activity or heavy lifting for about three months if you ve had your surgery through a cut in your tummy. If you ve had laparoscopic surgery you should avoid heavy lifting and activities that involve excessive pushing, pulling or stretching for about six weeks. Your physiotherapist or nurse will be able to give you advice about physical activity. Some women find it uncomfortable to drive for a few weeks after their surgery. It s probably a good idea to wait a few weeks before you start driving again. Some insurance companies have guidelines about this, and it may be helpful to contact your own insurer.

48 46 Understanding cervical cancer Getting support Some women take longer than others to recover from their operation. If you find you re having problems, it may be helpful to talk to someone who is not directly associated with your illness. Your clinical nurse specialist or our cancer support specialists (see page 108) are always happy to talk to you. 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 other women who are in a similar situation. Possible long-term complications of surgery Most women will not have long-term complications after surgery for cancer of the cervix. However, if you have had radiotherapy or chemotherapy as well as surgery, you re more likely to develop long-term complications. Rarely, women may have bladder or bowel problems after a hysterectomy. This is because the nerves that control them may get damaged during the operation. To avoid these problems, surgeons try to not damage the nerves during surgery. This is known as nerve-sparing or nerve-preserving surgery. If your lymph nodes have been removed, there s a risk you will develop swelling (lymphoedema) in one or both legs. This is a build-up of lymph fluid that can t drain away normally because the lymph nodes have been removed. It s more likely to happen if you ve had radiotherapy to the pelvic area as well as surgery. We can send you information about lymphoedema. If you develop any problems after your surgery, let your surgeon or nurse know, so that you can get the right kind of help.

49 Treating cervical cancer 47 Radiotherapy Radiotherapy treats cancer by using high-energy x-rays, which destroy the cancer cells while doing as little harm as possible to normal cells. When you have radiotherapy You may have radiotherapy: if you have early or locally advanced cervical cancer (see page 29) after surgery if there is a high risk of your cancer coming back to help relieve symptoms such as bleeding. Radiotherapy is often given in combination with chemotherapy. This is called chemoradiation (see page 69). Radiotherapy for cancer of the cervix can be given in two ways: external radiotherapy internal radiotherapy (brachytherapy). You may have a combination of external and internal radiotherapy. Your treatment will usually last for 5 8 weeks. The doctor who plans your treatment will discuss your treatment with you. Radiotherapy for cervical cancer will affect your ovaries. If you re still having periods, radiotherapy will stop your ovaries producing eggs and the hormones oestrogen and progesterone.

50 48 Understanding cervical cancer This will bring on an early menopause, usually two to three months after your treatment starts. This means you will no longer be able to have children. You should continue to use contraception during this time as it is important not to become pregnant. Your doctor, radiographer or nurse will discuss this with you before your treatment starts. They will also be able to tell you about treatments to help you cope with menopausal symptoms, and what options might be available if you d like to have a child in the future. We have more detailed information about this on pages External radiotherapy You will normally have external radiotherapy as a series of short daily outpatient treatments in the radiotherapy department. High-energy x-rays are directed from a machine (called a linear accelerator) at your cancer. External radiotherapy doesn t make you radioactive. It s perfectly safe for you to be with other people, including children, throughout your treatment. Planning your radiotherapy Before you start your treatment it needs to be planned. Planning makes sure that the radiotherapy is aimed precisely at the cancer so that it causes the least possible damage to the surrounding healthy tissue. All radiotherapy treatments are planned on an individual basis by your doctor, a physicist and a senior or specialist radiographer.

51 Treating cervical cancer 49 First planning visit Your first planning visit will take minutes. The staff in the radiotherapy department will explain what to expect. They will tell you beforehand if you need to prepare in any special way. For example, you may be asked to drink plenty of water. It s important for you to feel that you re involved in your treatment, so feel free to ask as many questions as you need to. You ll usually have a CT (computerised tomography) scan taken of the area to be treated. This helps your doctor and physicist plan the precise area for your radiotherapy. Before your scan, you may be asked to remove some of your clothes and to wear a gown. The CT scan takes lots of images from different angles to build up a three-dimensional picture. You may have an injection of dye into a vein when you have your CT scan. This allows particular areas of the body to be seen more clearly. You may also be asked to have a full bladder for the scan. Instead of a CT scan, some people have an MRI (magnetic resonance imaging) scan or occasionally a PET (positron emission tomography) scan to help with planning their treatment. An MRI scan uses powerful magnetic fields to give a very detailed picture of the area that needs treating. A PET scan uses low dose radioactive glucose (a type of sugar) to measure the activity of cells in different parts of the body. Your hospital team will tell you more about these scans. During your scan, you ll 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 re comfortable, the details of your position will be recorded. You ll need to lie in the same position on a similar couch for your treatment.

52 50 Understanding cervical cancer The information from the scan is fed into a planning computer, which will be used by your radiotherapy team to work out the precise dose and area of your treatment. It can take up to two 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 marks must stay visible throughout your treatment, and permanent marks (like tiny tattoos) are usually used. These are extremely small, and will only be done with your permission. It may be a little uncomfortable while they are done. Treatment sessions At the beginning of each of your radiotherapy sessions, your radiographer will explain to you what you ll see and hear. You may be asked to have a full bladder for each treatment. You may also be asked to take off some of your clothes and wear a gown. This is so the radiographers can see the marks on your skin that show the treatment area. They will position you carefully on the couch and make sure you re comfortable. Once you re in the correct position, you will be asked to keep as still as possible. The radiographers will leave the room and you will be given your treatment, which takes a few minutes. You can talk to your radiographer, who will watch you from the next room via closed-circuit TV. The radiotherapy machine doesn t touch you and the treatment is painless. You may hear a slight buzzing noise from the radiotherapy machine while your treatment is being given. Once your treatment session has finished, the radiographers will come back into the room and will help you off the treatment couch. You will then be able to go home or, if you are staying in hospital, back to the ward.

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54 52 Understanding cervical cancer Image guided radiotherapy (IGRT) Before, and sometimes during, a course of radiotherapy, images are taken to make sure the treatment accurately targets the treatment area. With IGRT, images are taken just before each treatment. This may involve taking x-ray images or moving the machine around you to get an image similar to a CT scan. The images can be compared to those taken during the planning scan. They are used to make adjustments to the treatment area, making it very precise. You can read more about radiotherapy in our Understanding radiotherapy booklet. Internal radiotherapy Internal radiotherapy is called brachytherapy. It gives radiation directly to the cervix and the area close by. It s usually given following external radiotherapy. How you have your treatment will depend on whether or not you ve had your womb removed. Having brachytherapy involves having a tube or tubes put into your womb or vagina. The treatment is then given through the tubes.

55 Treating cervical cancer 53 Womb (uterus) Cervix Vagina Applicators Position of tubes (applicators) Intrauterine brachytherapy If you ve not had a hysterectomy, you will have intrauterine brachytherapy. Your doctor will insert hollow tubes (called applicators) into your vagina and pass them up through your cervix into your womb. Sometimes additional applicators are placed alongside the cervix. The applicators are inserted in an operating theatre while you re sedated or under a general anaesthetic. Occasionally a spinal anaesthetic may be used your doctor will be able to tell you more about this. To help protect your back passage (rectum) and prevent the applicators moving, a pack of cotton/gauze padding may be placed inside your vagina. You will also have a catheter put into your bladder to drain off urine.

56 54 Understanding cervical cancer The applicators can be uncomfortable, so you may need to take painkillers. Intravaginal brachytherapy If you have had a hysterectomy, a single, larger, hollow tube applicator will be placed in your vagina. You won t need an anaesthetic or sedation to insert the applicator and padding isn t necessary. How you have your treatment You ll have an MRI scan, CT scan or x-rays to check the position of the applicators. Once it s confirmed that the applicators are in the correct position, they are connected to the brachytherapy machine. The machine is operated by the radiographer and delivers a radioactive capsule, called a source, into the hollow tubes. The machine is programmed so the source gives off the correct dose of radiation. You may have your treatment as an inpatient or outpatient depending on how it s given. High-dose rate treatment gives a high dose of radioactivity over a few minutes. Low-dose rate treatment gives a low dose of radioactivity over a few days. Pulsed-dose rate treatment gives treatment in short bursts over a few days.

57 Treating cervical cancer 55 High-dose rate treatment This is the most common way of giving brachytherapy to the cervix. You have treatment as a high dose of radioactivity over a few minutes. You will have several treatments. How highdose rate treatments are given varies from hospital to hospital. Usually your treatment takes about minutes. You may stay in hospital and have your treatment on a number of occasions over several days. The applicators are usually removed between treatments, but sometimes they re left in place and removed after your final treatment. Alternatively, you may have your treatment as an outpatient or day case on three or four occasions over several days or a week. If you have your treatment as an outpatient, the applicators will be removed before you go home. A plastic tube may be left in your cervix to help your radiotherapy team position the applicators for your next treatment. You may have a tube (catheter) put into your bladder to drain urine during high-dose rate treatment. This will be removed before you go home. Image guided brachytherapy (IGBT) If you have high-dose rate treatment you may have image guided brachytherapy (IGBT). IGBT makes the radiotherapy very accurate. It uses CT or MRI imaging to pinpoint exactly where your cancer is before each treatment. This makes it possible to shape the radiation dose to match the shape of your tumour and to avoid organs such as the bowel and bladder. Sometimes additional applicators may be used to boost the dose of radiotherapy to a particular area.

58 56 Understanding cervical cancer IGBT that uses MRI images is particularly accurate but it isn t available everywhere in the UK. The Royal College of Radiologists and the Department of Health recommend that women with cancer of the cervix should be offered MRI-based IGBT from Your doctor can tell you whether IGBT is a suitable treatment for you. They can arrange for you to have IGBT at another treatment centre if it s not possible for you to have it at your local one. Low-dose rate treatment Low-dose rate treatment is used less often. You will normally be in hospital for hours, but sometimes you may need to stay for a few days. Your doctor, nurse or radiographer will tell you more if you are going to have low-dose rate treatment. Pulsed-dose rate brachytherapy If you have this treatment the applicators stay in place for 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 if you are going to have pulsed-dose rate treatment.

59 Treating cervical cancer 57 Side effects of radiotherapy You may develop side effects over the course of your treatment. These usually improve gradually 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. Let them know about any side effects you have during or after treatment, as there are often things that can be done to help. The side effects of radiotherapy are made worse by smoking, so if you can cut down or stop smoking during and after your treatment this will help. If you want help or advice on how to quit, you can talk to your clinical oncologist, GP or a specialist nurse. Organisations such as QUIT (see page 115) can also offer advice and support. We have a leaflet called Giving up smoking, which we can send you. Skin changes Your skin in the area being treated may get dry and irritated. Avoid using perfumed soaps or bodywashes during your treatment as they could irritate your skin. You ll be given advice on looking after your skin. Your doctor or sometimes your radiographer or nurse can prescribe cream to soothe it if it becomes sore. You may lose some of your pubic hair. After treatment, it will usually grow back, but may be thinner than it was before.

60 58 Understanding cervical cancer Tiredness Tiredness is a common side effect and may continue for some months after treatment is over. During treatment, you may need to rest more than usual, especially if you have to travel a long way for treatment each day. But it s good to do some gentle exercise, such as walking, when you feel able to. Once your treatment is over, gradually increase your activity and try to balance rest periods with exercise such as walking. This will help build up your energy levels. We can send you information about tiredness (fatigue) and physical activity. It s incredible that you re just lying there during radiotherapy and almost feel like nothing s happening, but it really drains your energy. It took me a little while to recover, but I slowly started to feel better. Nisha

61 Treating cervical cancer 59 Bowel changes Radiotherapy to the pelvis may irritate your bowel and cause your bowels to open more often. You may have diarrhoea and also soreness around your back passage. Make sure you drink plenty of fluids if you have diarrhoea. Eating a low-fibre diet may help reduce diarrhoea. This means avoiding wholemeal bread and pasta, raw fruit, cereals and vegetables during and for a couple of weeks after treatment. Your doctor, nurse or radiographer can provide you with information on diet. They may refer you to a dietitian. Your doctor may also prescribe medication to help manage diarrhoea. Stomach cramps Radiotherapy to the pelvis can cause stomach cramps. If you experience these, it s important to mention them to your doctor, nurse or radiographer. They can advise you on medication to help. Changes in your blood Sometimes external radiotherapy can temporarily reduce the number of red and white blood cells produced by your bone marrow. This is more likely to happen if you are having chemoradiation (see page 69). If your white blood cell count is low you re more prone to infection and may need antibiotics. If your red blood cell count is low you may get tired more easily and you may need a blood transfusion. Your hospital team will arrange for you to have regular blood tests if needed. Bladder changes Radiotherapy can irritate your bladder, which will make you want to pass urine more often. It may also cause a burning feeling when you pass urine. Your doctor can prescribe medicines to reduce these symptoms. It will also help to drink at least 2 litres (3 pints) of fluid a day. Your doctor may prescribe medicines to help reduce these symptoms.

62 60 Understanding cervical cancer Vaginal discharge You may have a slight vaginal discharge for a few weeks after treatment has finished. If it continues or becomes heavy, let your doctor, specialist nurse or radiographer know. We can send you a fact sheet with more information about the possible side effects of pelvic radiotherapy. Possible late effects Radiotherapy to the pelvic area can sometimes cause long-term side effects (late effects). However, improvements in how radiotherapy is given have reduced the risk of some late effects. If you do have any late effects there are lots of ways in which they can be managed or treated. Changes to the vagina Radiotherapy to the pelvic area can cause vaginal dryness and narrow the vagina, which can make having sex or an internal examination uncomfortable. Your specialist nurse or radiographer will usually talk to you about ways of trying to prevent narrowing (such as using vaginal dilators) and creams to treat dryness. See pages for further information. Changes to the bowel or bladder Some women may develop permanent changes to the bowel or bladder. Symptoms generally develop from six months to two years after radiotherapy treatment, although in some people it may be years later. If your bowel is affected, you may have to go the toilet more often than usual, or you may have diarrhoea.

63 Treating cervical cancer 61 Sometimes, the bladder shrinks after radiotherapy and can t hold as much, so you ll need to pass urine more often. The blood vessels in the bowel and bladder can become more fragile, and if this happens you may get blood in your urine or bowel movements. Always let your doctor, radiographer or specialist nurse know if you have any changes to your bladder and bowel so they can be checked out. Lymphoedema Radiotherapy and surgery to remove the pelvic lymph nodes may increase the risk of swelling (lymphoedema) in one, or occasionally both, legs. This isn t common, but we can send you information about reducing your risk of lymphoedema. Your doctor, radiographer or specialist nurse can also give you information and support. We can send you more detailed information on managing the late effects of pelvic radiotherapy in women.

64 62 Understanding cervical cancer 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. You can read more about this on page 69. after surgery and with radiotherapy (chemoradiation) if there is a high risk of your cancer coming back if your cancer comes back after treatment if your 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 will usually have chemotherapy through a small tube (cannula) in your hand or arm. Sometimes they are given through a soft plastic tube called a central line or PICC line. These lines go in 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. We can send you information about central lines and ports.

65 Treating cervical cancer 63 Chemotherapy is given into your vein during one or more sessions of treatment. The length of each session will vary depending on the drug combination you are having. After each session you will have a rest period. The chemotherapy session and the rest period is called a cycle of treatment. The length of a cycle depends on the chemotherapy drugs you re having, but most cycles are 1 3 weeks long. Your doctor or nurse will talk to you about your chemotherapy. The drugs used A number of different drugs may be used to treat cervical cancer. Your doctor will explain to you which drugs are best for you. Chemotherapy drugs may be used on their own or in combination. Drugs which may be used include: cisplatin mitomycin C ifosfamide methotrexate 5-fluorouracil (5-FU). We have information about different chemotherapy drugs that we can send you.

66 64 Understanding cervical cancer Side effects Chemotherapy drugs may cause side effects. Many of these can be well controlled with medicines and will usually go away when your treatment ends. Not all drugs cause the same side effects and some people may have very few. Your doctor or nurse will tell you more about what to expect. Always tell them about any side effects you have. Risk of infection Chemotherapy can reduce the number of white blood cells, which help fight infection. If the number of your white blood cells is low, you ll be more prone to infections. A low white blood cell count is called neutropenia. Always contact the hospital immediately on the 24-hour contact number you ve been given and speak to a nurse or doctor if: you develop a high temperature, which may be over 37.5 C (99.5 F) or over 38 C (100.4 F) depending on the hospital s policy follow the advice that you have been given by your chemotherapy team you suddenly feel unwell, even with a normal temperature you feel shivery and shaky you have any symptoms of an infection such as a cold, sore throat, cough, passing urine frequently (urine infection), diarrhoea. If necessary, you ll be given antibiotics to treat any infection. You ll have a blood test before each cycle of chemotherapy to make sure your white blood cells have recovered. Occasionally, your treatment may need to be delayed if the number of your white blood cells is still low.

67 Treating cervical cancer 65 Anaemia (reduced number of red blood cells) If chemotherapy reduces the number of red blood cells in your blood, you may become very tired and feel you have no energy. You may also become breathless and feel dizzy and light-headed. These symptoms happen because the red blood cells contain haemoglobin, which carries oxygen around the body. If your haemoglobin is low you may be offered a blood transfusion. You ll feel more energetic and any breathlessness will be eased. Bruising and bleeding Chemotherapy can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot. If you develop any unexplained bruising or bleeding, such as nosebleeds, bleeding gums, blood spots or rashes on the skin, contact your doctor or the hospital straight away. Feeling sick Some chemotherapy drugs can make you feel sick (nauseated) or possibly be sick (vomit). Your cancer specialist will prescribe anti-sickness (anti-emetic) drugs to prevent this. Let your doctor or nurse know if your anti-sickness drugs are not helping, as there are several different types you can take. We have a fact sheet about nausea and vomiting. Tiredness (fatigue) You re likely to become tired and have to take things slowly. Try to pace yourself and save your energy for things that you want to do or that need doing. Balance rest with some physical activity even going for short walks will help increase your energy levels. Our booklet Coping with fatigue has more helpful tips.

68 66 Understanding cervical cancer Effects on the kidneys Some chemotherapy drugs used to treat cancer of the cervix may affect your kidneys. Usually this doesn t cause symptoms, but the effect can be severe and your kidneys can be permanently damaged unless treatment is stopped. For this reason your kidney function will be checked by a blood test before each treatment. You may be asked to drink plenty of fluids, and to measure how much liquid you drink and the amount of urine you pass. Sore mouth Your mouth may become sore (or dry), or you may notice small ulcers during treatment. Some people find that sucking on ice may be soothing. Drinking plenty of fluids, and cleaning your teeth regularly and gently with a soft toothbrush, can help to reduce the risk of this happening. Tell your nurse or doctor if you have any of these problems, as they can prescribe mouthwashes and medicine to prevent or clear mouth infections. Loss of appetite You may lose your appetite while you re having chemotherapy. This can be mild and may only last a few days. We can send you information on eating problems. If your appetite doesn t improve you can ask to see a dietitian. Numbness or tingling in hands or feet You may notice that you have difficulty doing up buttons or similar fiddly tasks. This is due to the effect of certain chemotherapy drugs on nerves and is known as peripheral neuropathy. Not all chemotherapy drugs cause this problem. Tell your doctor if you notice any numbness or tingling in your hands or feet. It is important to report your symptoms to your doctor as they may be controlled by slightly lowering the dose of the drug. This side effect usually improves slowly, a few months after the treatment has finished. Sometimes symptoms can persist. Talk to your doctor if this happens.

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70 68 Understanding cervical cancer 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 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. Fertility Chemotherapy can affect your ability to become pregnant after treatment. It s important to discuss any concerns you have about this with your hospital team before your treatment starts. See pages for more information. Contraception It s not advisable to become pregnant while having chemotherapy, as the drugs may harm the unborn baby. It s important to use effective contraception during your treatment and for a few months afterwards. Condoms should be used 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 present in vaginal fluid.

71 Treating cervical cancer 69 Chemoradiation You may be offered chemotherapy together with radiotherapy (chemoradiation). The chemotherapy drugs can make the cancer cells more sensitive to radiotherapy. The combination of treatments may be more effective than having either chemotherapy or radiotherapy alone. The chemotherapy drug most commonly used is cisplatin. It is usually given once a week throughout your radiotherapy. Giving chemotherapy and radiotherapy together can make the side effects of the treatment worse. Your doctor, radiographer or specialist nurse can give you more information about chemoradiation and the possible side effects of this treatment.

72 70 Understanding cervical cancer Targeted treatments Targeted therapies interfere with the messages cancer cells need to grow and divide. Bevacizumab (Avastin ) is a targeted treatment which has been used to treat other types of cancer. Research has shown that it might be a useful treatment alongside chemotherapy for women with advanced cervical cancer. It may not be widely available. In England, if your specialist thinks bevacizumab is suitable for you, they can apply for you to have it through the Cancer Drugs Fund. If you live in Scotland, Wales or Northern Ireland you can find out from your specialist if bevacizumab is available. We can send you information about bevacizumab. We can also send you information about what you can do if a treatment isn t available.

73 Treating cervical cancer 71 Menopausal symptoms, sex and fertility If you ve not been through the menopause, treatments for cervical cancer may bring the menopause on. They may also affect your sex life and fertility. Menopausal symptoms A hysterectomy that includes removing your ovaries will bring on your menopause straight away. If you have radiotherapy without surgery you will also have your menopause. This is because radiotherapy stops your ovaries from working. Some women may be offered an operation before radiotherapy to reposition their ovaries higher in the abdomen, out of the radiotherapy site. The aim of this surgery is to prevent an early menopause, as the ovaries won t be affected by the radiotherapy treatment. It s known as ovarian transposition and is usually carried out at the same time as initial surgery (see pages 38 46) if it s thought that radiotherapy will be needed afterwards. It may also be possible to have an ovarian transposition using laparoscopic (keyhole) surgery. For some women, ovarian transposition isn t successful and an early menopause still happens. Chemotherapy may also stop your ovaries from working. If your treatment causes an early menopause your doctor may suggest you take hormone replacement therapy (HRT). This means taking medication to replace the hormones that your body no longer produces. You can discuss this in more detail with your doctor.

74 72 Understanding cervical cancer Some common symptoms of the menopause include: Hot flushes and sweats This is the most common menopausal symptom. Although the exact cause is unknown, body temperature control seems to be affected by falling oestrogen levels. Hot flushes can vary from a mild feeling of warmth in the face to more severe symptoms such as drenching night sweats that affect the whole body. Hot flushes generally last for about 4 5 minutes. During a hot flush you may feel sudden warmth in your face, neck and chest, and you may become flushed and perspire. Some women feel their heart beating faster (palpitations) during a flush. If you have flushes at night, these may affect your sleep. Night sweats can disrupt your sleep pattern, especially if you need to change your night clothes and bedding. It s difficult to completely stop hot flushes and sweats, but their frequency or intensity can often be reduced. Using a combination of some of the approaches below is often most successful at controlling or reducing flushes. Be aware of triggers Certain situations may bring on or trigger a hot flush. For example, getting too warm, drinking tea, coffee or alcohol, or eating spicy foods. Keeping a record of when you have flushes can help you find out what triggers them, so you can try to avoid these triggers. Even if you don t have obvious triggers, keeping a record can help to measure how much a treatment for hot flushes is helping.

75 Treating cervical cancer 73 Practical tips There s lots of practical advice available to help you cope with hot flushes. Here are a few tips: Wear natural fabrics, such as cotton, and dress in layers, so you can remove clothes as needed. Use cotton sheets and have layers of bedding. Keep the room temperature cool or use a fan. Have cold drinks rather than hot ones. Try some complementary therapies, such as controlled breathing or yoga. Medicines There are different medicines that your doctor can prescribe to help reduce the severity and frequency of your hot flushes and sweats. Complementary therapies There are a variety of complementary therapies that may help you control hot flushes. Some of these have been researched, but for others the evidence is only anecdotal (based on personal accounts rather than facts). Some of these therapies may be available on the NHS your GP can give you further details. If you would like to find a complementary therapist, make sure that they are properly qualified and registered. The British Complementary Medical Association has lists of registered therapists throughout the UK (see page 114). It s a good idea to discuss the use of any complementary therapy with your doctor, as some therapies may interfere with your treatment.

76 74 Understanding cervical cancer Low sex drive You may notice you have a lower sex drive after your menopause (see page 76). This may be caused by a lower level of hormones after the menopause, although not all women will notice a change. Emotional symptoms You may notice you have mood swings, feel anxious, or have problems with concentration and memory while going through the menopause. Talking about your feelings with your family, friends, doctor or nurse can help. Some women find it helps to talk things through with a counsellor. Bone thinning An early menopause can increase your risk of bone thinning (osteoporosis). We can send you information on bone health that includes more detail about what you can do to help your bones. Many of the menopausal symptoms described here can be eased by hormone creams, skin patches or tablets, which can all be prescribed by your doctor. These replace the hormones that are normally produced by the ovaries. However, these hormone replacement therapies may not be suitable for all women. Your doctor will let you know if they are suitable for you. An organisation called the Daisy Network supports women who have an early menopause (see page 111). You may find it helpful to contact them if you feel you need more support.

77 Treating cervical cancer 75 Vaginal changes As well as the menopause, radiotherapy and surgery to the pelvis can make the vagina narrower and less stretchy. It also reduces the natural lubrication in your vagina, making it drier. This can make having sex or an internal medical examination uncomfortable, so it s important to try to keep the vagina from narrowing. Your specialist nurse or radiographer will explain more about this and answer any questions you may have. They are used to discussing these issues, so you needn t feel embarrassed. Vaginal dilators Your hospital team may recommend you use vaginal dilators to help. Dilators are tampon-shaped plastic tubes of different sizes that you use with a lubricant. Although they re commonly used, there isn t strong evidence to say how effective they are. Rarely, they may cause damage to the vagina, especially if they aren t used correctly. Your specialist nurse, radiographer or doctor will explain how best to use them in your situation. Having regular penetrative sex, using a dildo or vibrator, or using lubricated fingers may also help prevent the vagina from narrowing. Even if you are having sex regularly, you may still be advised to use a dilator. Vaginal dryness Different creams, gels, lubricants or pessaries (small pellets that are put inside the vagina) can help with this. Your doctor may recommend using vaginal oestrogen creams or pessaries, which can be prescribed. Your cancer doctor will tell you if it s advisable for you to take these. There are lots of products to improve vaginal dryness that you can buy from most chemists and some supermarkets.

78 76 Understanding cervical cancer For example, Replens MD cream or water-based lubricants such as Senselle, Astroglide, Sylk, Vielle or Durex lube. Vaginal dryness can make you more likely to get infections, such as thrush, so let your doctor know if you have symptoms such as itching or soreness. Sex after treatment Cervical cancer, its treatments and their side effects may affect your sex life and how you feel about yourself as a woman. This often gradually improves after treatment, although for some women it may take longer. Cuddles, kisses and massages are affectionate and sensual ways of showing how much you care for someone, even if you don t feel like having sex. You can wait until you and your partner feel ready there s no right or wrong time. It s common to feel nervous about sex after cancer treatment, but it s perfectly 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. Let your doctor or nurse know if you re having problems with your sex life. They may be able to reassure you and offer help and support. If you feel uncomfortable talking to your doctor or nurse, you can call our cancer support specialists on Some people may find it helpful to talk to a sex therapist. You can contact a therapist through the College of Sexual and Relationship Therapists (see pages ). We can send you our information on sexuality and cancer.

79 Treating cervical cancer 77 Fertility Pelvic radiotherapy or surgical removal of your womb or ovaries will mean you are no longer able to have children. Some chemotherapy drugs may also affect your fertility. This can feel devastating. Infertility is very hard to come to terms with, especially if you were planning to start a family in the future, or to have more children to complete your family. The sense of loss can be very painful and distressing for people of all ages. Sometimes it can feel as though you have actually lost a part of yourself. You may also feel less feminine because you can t have children. It s important to discuss any concerns you have about your fertility with your healthcare team before treatment starts. They can discuss what options might be available if you d like to have a child in the future. For example, you may be able to store embryos (fertilised eggs), or have your eggs frozen and stored for future use. This would have to happen before treatment starts. Ovarian tissue that contains eggs can also be removed for future use, but this is still an experimental technique. If you would like to have fertility treatment before your cancer treatment, your hospital team will refer you to a fertility specialist. Embryo storage may be available on the NHS, but you often have to pay privately for other treatments. Our booklet Cancer treatment and fertility information for women discusses the options for having a baby (such as adoption, surrogacy or egg storage) if treatment has affected your fertility. We also have information for young people on relationships, sex and fertility.

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81 Treating cervical cancer 79 People react differently to the risk of infertility. Some women may come to terms with it more quickly and feel that dealing with the cancer is more important. Others may accept the news calmly when they start treatment, and find that they don t feel the full impact until the treatment is over and they are sorting out their lives again. There is no right or wrong way to react. If you have a partner, it s important for them to be involved in any discussions about fertility and future plans. You may both need to speak to a professional counsellor or therapist specialising in fertility problems. They can help you come to terms with your situation. Your doctor may be able to refer you to a specialist, or you can be put in touch with one directly by contacting the organisations on pages Our cancer support specialists on can discuss any problems you may have and they can also help you find a counsellor who can offer you help and advice.

82 80 Understanding cervical cancer Research clinical trials Cancer research trials are carried out to try to find new and better treatments for cancer. Trials that are carried out on patients are known as clinical trials. These may be carried out to: test new treatments, such as new chemotherapy drugs or targeted therapies look at new combinations of existing treatments, or change the way they are given to make them more effective or reduce side effects compare the effectiveness of drugs used to control symptoms find out how cancer treatments work find out which treatments are the most cost-effective. Trials are the only reliable way to find out if a different type of surgery, chemotherapy, hormone therapy, radiotherapy, or other treatment is better than what is already available. Taking part in a trial You may be asked to take part in a treatment research trial. There can be many benefits in doing this. Trials help to improve knowledge about cancer and develop new treatments. You will be carefully monitored during and after the study. Usually, several hospitals around the country take part in these trials. It s important to bear in mind that some treatments that look promising at first are often later found not to be as good as existing treatments or to have side effects that outweigh the benefits.

83 Treating cervical cancer 81 If you decide not to take part in a trial, your decision will be respected and you don t have to give a reason. However, it can help to let the staff know your concerns so that they can give you the best advice. There will be no change in the way that you re treated by the hospital staff, and you ll be offered the standard treatment for your situation. Clinical trials are described in more detail in our booklet Understanding cancer research trials (clinical trials). We can send you a free copy. Blood and tumour samples Blood and tumour samples may be taken to help make the right diagnosis. You may be asked for your permission to use some of your samples for research into cancer. If you take part in a trial you may also give other samples, which may be frozen and stored for future use when new research techniques become available. Your name will be removed from the samples so you can t be identified. The research may be carried out at the hospital where you are treated, or at another one. This type of research takes a long time, and results may not be available for many years. The samples will be used to increase knowledge about the causes of cancer and its treatment, which will hopefully improve the outlook for future patients.

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85 After your treatment After treatment 84 What you can do 85 Well-being and recovery 86

86 84 Understanding cervical cancer After treatment Follow-up After your treatment has finished you will need to have regular check-ups. These will often go on for several years and may include a physical examination, blood tests, x-rays or scans. If you have any problems or ongoing side effects from the treatment, or notice any new symptoms between your check-ups, let your doctor, radiographer or specialist nurse know as soon as possible. Many women who are treated for early and locally advanced cervical cancer will be completely cured of their cancer and it won t come back.

87 After your treatment 85 What you can do One of the hardest things to cope with can be the feeling that the cancer and its treatment have taken over your life. This is a common feeling, but there are lots of things you can do. There may be days when you feel too tired to even think about what could help. You ll have good and bad days, but if you re overwhelmed by these feelings, let your doctor or nurse know. It may be that you have depression, and this is treatable so they should be able to help. Finding ways to cope You may find it helps to try to carry on with life as normally as possible, by staying in contact with friends and keeping up your usual activities. Or you may want to decide on new priorities in your life. This could mean spending more time with family, going on the holiday you ve dreamed about or taking up a new hobby. Just thinking about these things and making plans can help you realise that you still have choices. Some people want to improve their general health by eating a more healthy diet, by getting fitter or by finding a relaxing complementary therapy. Understanding about the cancer and its treatment helps many people cope. It means they can discuss plans for treatment, tests and check-ups with their doctors and nurses. Being involved in these choices can help give you back control of your life.

88 86 Understanding cervical cancer Well-being and recovery After treatment you ll probably be keen to get back to a sense of ordinary life. But you may still be coping with the side effects of treatment and with some difficult emotions (see pages 90 94). Recovery takes time, so try not to be hard on yourself. Our booklet Life after cancer treatment discusses how to cope after treatment. Some women choose to make some positive lifestyle changes. It s not to say you didn t follow a healthy lifestyle before cancer, but you may be more focused on making the most of your health. We ve included information here that may help you focus on what you can do. Eat healthily Eating healthily will give you more energy and help you to recover. Try to eat plenty of fresh fruit and vegetables (at least five portions a day). And, if you eat meat, cut down on processed and red meats and eat more chicken and fish. There s more information in our booklet Healthy eating and cancer.

89 After your treatment 87 Be physically active Being physically active helps to build up your energy levels and keep your weight healthy, as well as reducing stress and the risk of other health conditions. It also reduces the risk of bone thinning in women who had an early menopause. Your GP or cancer team may be able to refer you to special exercise groups run by exercise trainers. We have a booklet called Physical activity and cancer treatment, which has more information. Stop smoking and stick to sensible drinking If you re a smoker, giving up smoking is one of the healthiest decisions you can make. Continuing to smoke increases the risks of developing smoking-related cancers and heart disease. NHS guidelines suggest that both men and women should: not regularly drink more than 14 units of alcohol in a week spread the alcohol units they drink in a week over three or more days try to have several alcohol-free days every week. A unit of alcohol is half a pint of ordinary strength beer, lager or cider, one small glass (125ml) of wine, or a single measure (25ml) of spirits. There is more information about alcohol and drinking guidelines at drinkaware.co.uk Our booklet Giving up smoking has more information and tips to help you quit.

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91 Your feelings and relationships Your feelings 90 If you are a relative or friend 95 Talking to children 96 Who can help? 97

92 90 Understanding cervical cancer Your feelings It s common to feel overwhelmed by different feelings when you re told that you have cancer. We talk about some of these here. Partners, family and friends may also have some of the same feelings. You might have different reactions to the ones we describe here. There is no right or wrong way to feel. You ll cope with things in your own way. Talking to people close to you or other people affected by cancer can often help. Shock and disbelief You may find it hard to believe when your doctor tells you that you have cancer. It s common to feel shocked and numb. You may not be able to take in much information and find that you keep asking the same questions again and again. At first, you might find it hard to talk to family and friends about the cancer. This usually gets easier as the shock wears off and it becomes more real to you. You may find you can t think or talk about anything but the cancer. This is because your mind is trying to process what you re going through. Fear and anxiety People can be very anxious or frightened about whether treatment will work and what will happen in the future. This uncertainty can be one of the hardest things to cope with. It can help to try to focus on what you can control. You may want to find out more about the cancer, its treatment and how to manage side effects. It can also help to talk about your feelings and to take time to do things that are important to you and that you enjoy.

93 Your feelings and relationships 91 Doctors often know roughly how many people can benefit from a type of treatment. But they can t be sure what will happen to an individual person. Although they may not be able to answer your questions fully, they can usually talk through any problems with you and give you some guidance. Avoidance Some people cope by not wanting to know very much about the cancer and by not talking about it. If you feel like this, let your family and friends know that you don t want to talk about it right now. You can also tell your doctor if there are things you don t want to know or talk about yet. Occasionally, this avoidance can be extreme. Some people may not believe that they have cancer. This is sometimes called being in denial. It may stop them making decisions about treatment. If this happens, it s very important for them to get help from their doctor. Sometimes, avoidance is the other way around. Family and friends may seem to avoid you and the fact that you have cancer. They may not want to talk about it or they might change the subject. This is usually because they are also finding the cancer difficult to cope with, and they may need support too. Try to let them know how this makes you feel and that talking openly with them about your illness will help you.

94 92 Understanding cervical cancer Anger You may feel angry about your illness and sometimes resent other people for being well. These are normal reactions, especially when you feel frightened, stressed, out of control or unwell. You may get angry with the people close to you. Let them know that you are angry at your illness and not at them. Finding ways to help you relax and reduce stress can help with anger. This can include talking about or writing down how you feel, gentle exercise, breathing or relaxation therapy, yoga or meditation. Guilt and blame Some people feel guilty or blame themselves or others for the cancer. You may try to find reasons for why it has happened to you. Most of the time, it s impossible to know exactly what has caused a person s cancer. Over time, several different factors may act together to cause a cancer. Doctors don t fully understand all of these factors yet. Instead, try to focus on looking after yourself and getting the help and support you need. Feeling alone Some people feel alone because they don t have enough support. Family and friends may live far away, have other commitments or feel uncomfortable because of their own fears about cancer. Try to let your family and friends know how you feel and how they could support you more. If you need more support, you can call the Macmillan Support Line free on and talk to one of our cancer support specialists. Our website can help you find out about local support groups visit macmillan.org.uk/supportgroups You can also talk to other people going through the same thing on our online community at macmillan.org.uk/community

95 For me, to talk to somebody, I really needed that support. I don t think you should try to cope with things alone. Robyn

96 94 Understanding cervical cancer It s normal to have times when you want to be left alone to sort out your feelings. But if you find you re avoiding people a lot of the time, then try to talk to your doctor or nurse. If you need more help These feelings can be very difficult to cope with and sometimes people need more help. This happens to lots of people and doesn t mean you re not coping. If you feel anxious, panicky or sad a lot of the time, or think you may be depressed, talk to your doctor or nurse. They can refer you to a doctor or counsellor who can help. They may also prescribe medicine to help with anxiety or an antidepressant drug. Our booklet How are you feeling? The emotional effects of cancer discusses the feelings you may have in more detail, and has suggestions for coping with them.

97 Your feelings and relationships 95 If you are a relative or friend Some people find it hard to talk about cancer or share their feelings. You might think it s best to pretend everything is fine, and carry on as normal. You might not want to worry the person with cancer, or you might feel you re letting them down if you admit to being afraid. Unfortunately, denying strong emotions can make it even harder to talk, and may lead to the person with cancer feeling very isolated. Partners, relatives and friends can help by listening carefully to what the person with cancer wants to say. It may be best not to rush into talking about the illness. Often it s 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, and to help friends and family support their loved ones affected by cancer. Visit macmillan.org.uk/learnzone to find out more. We have more information about supporting someone with cancer at macmillan.org.uk/carers Our booklet Lost for words how to talk to someone with cancer has more suggestions if you have a friend or relative with cancer. If you re looking after a family member or friend with cancer, you may find our booklet Looking after someone with cancer helpful. It s based on carers experiences and has lots of practical tips and information.

98 96 Understanding cervical cancer Talking to children Deciding what to tell your children or grandchildren about your cancer is difficult. An open, honest approach is usually best. Even very young children can sense when something is wrong, and their fears can sometimes be worse than the reality. How much you tell your children will depend on their age and how mature they are. It may be best to start by giving only small amounts of information, and gradually tell them more to build up a picture of your illness. Teenagers Teenagers can have an especially hard time. At a stage when they want more freedom, they may be asked to take on new responsibilities and they may feel over-burdened. It s important that they can go on with their normal lives as much as possible and still get the support they need. If they find it hard to talk to you, you could encourage them to talk to someone close who can support and listen to them, such as a grandparent, family friend, teacher or counsellor. They may also find it useful to look at the website riprap.org.uk which has been developed especially for teenagers who have a parent with cancer. Our booklet Talking to children and teenagers when an adult has cancer has more information that may be useful.

99 Your feelings and relationships 97 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, such as meals on wheels, a home helper or hospital 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 re 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 s 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 can tell you more about counselling and can let you know about services in your area.

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101 Work and financial support Financial help and benefits 100 Work 103

102 100 Understanding cervical cancer Financial help and benefits If you are struggling to cope with the financial effects of cancer, help is available. If you cannot work because you are ill, you may be able to get Statutory Sick Pay. Your employer will pay this for up to 28 weeks of sickness. If you qualify for it, they cannot pay you less. Before your Statutory Sick Pay ends, or if you do not qualify for it, check whether you can get Employment and Support Allowance (ESA). This benefit is for people who cannot work because they are ill or disabled. There are two different types of ESA: contributory you can get this if you have made enough national insurance contributions income-related you can get this if your income and savings are below a certain level. Since October 2013, a new benefit called Universal Credit has started replacing income-related ESA in England, Scotland and Wales. This benefit is for people who are looking for work or on a low income. Personal Independence Payment (PIP) is a new benefit for people under 65 who find it difficult to walk or look after themselves (or both). You must have had these difficulties for at least three months, and they should be expected to last for the next nine months. Since April 2013, PIP has started to replace a similar older benefit called Disability Living Allowance (DLA) in England, Scotland and Wales.

103 Work and financial support 101 Attendance Allowance (AA) is for people aged 65 or over who find it difficult to look after themselves. You may qualify if you need help with things like getting out of bed, having a bath or dressing yourself. You don t need to have a carer, but you must have needed care for at least six months. If you are terminally ill, you can apply for PIP, DLA or AA under the special rules. This means your claim will be dealt with quickly and you will get the benefit you applied for at the highest rate. Help for carers Carers Allowance is a weekly benefit that helps people who look after someone with a lot of care needs. If you don t qualify for it, you can apply for Carer s Credit. This helps you to build up qualifying years for a State Pension. More information The benefits system can be hard to understand, so it s a good idea to talk to an experienced welfare rights adviser. You can speak to one by calling the Macmillan Support Line on We ve just listed some benefits here, but there may be others you can get. You can find out about state benefits and apply for them online at gov.uk (England, Wales and Scotland) and nidirect.gov.uk (Northern Ireland). These websites have information about financial support, your rights, employment and independent living. You can also get information about these issues from the relevant Department for Work and Pensions helplines (see page 117) or Citizens Advice (see page 116). In Northern Ireland, you can call the Benefit Enquiry Line Northern Ireland on

104 102 Understanding cervical cancer Our booklet Help with the cost of cancer has more detailed information. You might also find our video at macmillan.org.uk/gettingfinancialhelp useful. I tried to work throughout my treatment, but then realised that wasn t a good idea at all. I needed a break and took six months off. Rachel Insurance People who have, or have had, cancer may find it hard to get certain types of insurance, including life and travel insurance. A financial adviser can help you look at your needs and find the best deal for you. You can get help finding a financial adviser by contacting one of the organisations on page 118. Our booklets Insurance and Getting travel insurance may also be helpful.

105 Work and financial support 103 Work You may need to take time off work during your treatment and for a while afterwards. It can be hard to judge the best time to go back to work, and this will depend mainly on the type of work you do and how much your income is affected. It s important to do what s right for you. Getting back into your normal routine can be very helpful, and you may want to go back to work as soon as possible. It can be helpful to talk to your employer about the situation it may be possible for you to work part-time or job share. On the other hand, it can take a long time to recover fully from cancer treatment, and it may be many months before you feel ready to return to work. It s important not to take on too much, too soon. Your consultant, GP or specialist nurse can help you decide when and if you should go back to work. Employment rights The Equality Act 2010 protects anyone who has, or has had, cancer. Even if a person who had cancer in the past has been successfully treated and is now cured, they are still covered by the act. This means their employer must not discriminate against them for any reason, including their past cancer. The Disability Discrimination Act protects people in Northern Ireland. 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

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107 Further information About our information 106 Other ways we can help you 108 Other useful organisations 111 Your notes and questions 120

108 106 Understanding cervical cancer 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 leaflets or booklets like this one. Visit be.macmillan.org.uk or call us on 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. All of our information is also available online at macmillan. org.uk/cancerinformation 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, us at cancerinformationteam@ macmillan.org.uk or call us on

109 Further information 107 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. If you d like to hear more about becoming a reviewer, 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. We give you the chance to comment on a variety of information including booklets, leaflets and fact sheets.