A practical guide to understanding cancer Understanding cervical CAnCER
Contents Contents About Understanding cervical cancer 4 What is cancer? 5 The lymphatic system 7 The cervix 9 How cervical cancer develops 10 Symptoms of cervical cancer 13 How cervical cancer is diagnosed 14 Types of cervical cancer 18 Tests after diagnosis 19 Staging 24 Treatment overview 27 Surgery 34 Radiotherapy 43 Chemotherapy 58 Research clinical trials 64 Menopausal symptoms and fertility 66 After treatment 70 Your feelings 75 If you re a relative or friend 80 Talking to children 81 Who can help? 83 1
Understanding cervical cancer Financial help and benefits 85 Work 91 How we can help you 92 Other useful organisations 96 Further resources 102 Questions you might like to ask your doctor or nurse 106 2
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Understanding cervical cancer About Understanding cervical cancer 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 0808 808 00 00, Monday Friday, 9am 8pm. If you re hard of hearing you can use textphone 0808 808 0121, or Text Relay. For non-english speakers, interpreters are available. Alternatively, visit macmillan.org.uk Turn to pages 96 105 for some useful addresses and websites, and page 106 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. 4
What is cancer? What is cancer? The organs and tissues of the body are made up of tiny building blocks called cells. Cancer is a disease of these cells. Cancer isn t a single disease with a single cause and a single type of treatment. There are more than 200 different kinds of cancer, each with its own name and treatment. Although cells in different parts of the body may look different and work in different ways, most repair and reproduce themselves in the same way. Normally, cells divide in an orderly and controlled way. But if for some reason the process gets out of control, the cells carry on dividing, and develop into a lump called a tumour. Tumours can be either benign (non-cancerous) or malignant (cancerous). Doctors can tell whether a tumour is benign or malignant by removing a piece of tissue (biopsy) and examining a small sample of cells under a microscope. Normal cells Cells forming a tumour 5
Understanding cervical cancer In a benign tumour, the cells do not spread to other parts of the body and so are not cancerous. However, they may carry on growing at the original site, and may cause a problem by pressing on surrounding organs. In a malignant tumour, the cancer cells have the ability to spread beyond the original area of the body. If the tumour is left untreated, it may spread into surrounding tissue. Sometimes cells break away from the original (primary) cancer. They may spread to other organs in the body through the bloodstream or lymphatic system (see pages 7 8). When the cancer cells reach a new area they may go on dividing and form a new tumour. This is known as a secondary cancer or a metastasis. 6
The lymphatic system The lymphatic system The lymphatic system is part of the immune system the body s natural defence against infection and disease. It s made up of organs such as bone marrow, the thymus, the spleen, and lymph nodes. The lymph nodes throughout the body are connected by a network of tiny lymphatic tubes (ducts). The lymphatic system has two main roles: it helps to protect the body from infection and it drains fluid from the tissues. Neck (cervical) lymph nodes Thymus Armpit (axillary) lymph nodes Spleen Groin (inguinal) lymph nodes The position of lymph nodes in the body 7
Understanding cervical cancer Pelvic lymph nodes Cervix The pelvic lymph nodes 8
The cervix The cervix The cervix is the lower part of the womb (uterus) and is often called the neck of the womb. The womb is a muscular, pear-shaped organ at the top of the vagina. The lining of the womb is shed each month, which results in bleeding called a period. If a woman becomes pregnant, her periods stop temporarily, then they ll normally continue until she goes through the menopause. Close to the cervix is a collection of lymph nodes. Fallopian tube Ovary Bladder Cervix Vagina Womb (uterus) Cervical canal 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 cancer of the womb (uterus). 9
Understanding cervical cancer How cervical cancer develops Each year, over 2,900 women are diagnosed with cervical cancer in the UK. It usually occurs in women over the age of 20. The highest rates occur between the ages of 30 39, but it can also affect younger and older women. Cancer of the cervix can take many years to develop. Before it does, changes occur in the cells of the cervix. These changes are known as cervical intrapepithelial neoplasia (CIN). The abnormal cells are not cancerous, but some doctors refer to the changes to these cells as pre-cancerous. This means that the cells might develop into cancer in some women if they are not treated. But most women with CIN do not develop cancer, and if treatment is needed for CIN it s nearly always effective. Our booklet Understanding cervical screening has more detailed information about CIN and its treatment. Risk factors for cervical cancer HPV and sex CIN is usually the result of an infection from the human papilloma virus (HPV). HPV is a very common virus that can affect the cells of the cervix. It s mainly passed on during sex. Having sex at an early age and having several sexual partners can increase the risk of catching HPV and developing cervical cancer. But many women who have only had one sexual partner have HPV at some point in their life, and may go on to 10
How cervical cancer develops develop CIN or cervical cancer. So there s no reason for you or others to feel that you re to blame for having cervical cancer. We have more detailed information about HPV and cancer, which we can send you. Smoking Women who smoke are more likely to develop CIN and the most common type of cervical cancer, known as squamous cell cervical cancer (see page 18). A weakened immune system Having a weakened immune system may allow CIN to develop into cancer. The immune system can be weakened by smoking, a poor diet and infections such as HIV/AIDS. Contraceptive pill Long-term use of the contraceptive pill (for more than 10 years) can slightly increase the risk of developing cervical cancer. But for most women the benefits of taking the pill outweigh the risks. Cancer of the cervix is not infectious and can t be passed on to other people. 11
Understanding cervical cancer Preventing cervical cancer Vaccines Two vaccines are now available in the UK to prevent HPV infection Gardasil and Cervarix. There are more than 100 types of HPV, and each type is identified by a number. Both of the vaccines have been shown to protect against HPV 16 and 18, which are high-risk types. 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 18). These vaccines work best if they are given to children before puberty and before they might start having sex. For this reason, all 12 13-year-old girls in the UK are now routinely offered an HPV vaccination. The vaccines can also be obtained privately. Cervical screening This is an important way of detecting early changes in cells of the cervix, so that treatment can be given to prevent a cancer developing. It involves taking a sample of cells from the cervix using a test known as a liquid-based cytology. 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 and Northern Ireland screening takes place between the ages of 25 64, in Scotland it s between the ages of 20 60, and in Wales it s between the ages of 20 64. If abnormal cells are found during your cervical screening test, you will be referred for a colposcopy to have a biopsy taken. We have detailed information about cervical screening in our booklet Understanding cervical screening. We can send you a copy. 12
Symptoms of cervical cancer Symptoms of cervical cancer Very early-stage cervical cancer may have no symptoms. This means it s important to attend regular cervical screening, so that any cell changes can be picked up early. The most common symptom of cervical cancer is abnormal vaginal bleeding, usually between periods or after sex. Women who ve gone through the menopause (who are no longer having periods) may find they have some new bleeding. Symptoms of cervical cancer can also include a smelly vaginal discharge and discomfort during sex. If you re attending regular screening, you should let your GP know if you develop symptoms between your tests. There are many other conditions that can cause these symptoms, but it s important that you see your GP or practice nurse to get them checked out. It can be embarrassing to talk about these symptoms, but the sooner you see someone and a diagnosis is made, the better the chance of treatment being successful. 13
Understanding cervical cancer How cervical cancer is diagnosed Usually you begin by seeing your family doctor (GP), who will examine you and refer you to the hospital for any necessary tests and for specialist gynaecological advice and treatment. If your GP suspects you may have cancer, you should be seen at the hospital within 14 days. Colposcopy A colposcopy can be carried out by a specialist doctor or a nurse colposcopist and is usually done in a hospital outpatient clinic. In a colposcopy, a specially adapted type of microscope with a light, called a colposcope, is used to show the cervix in detail. It acts like a magnifying glass so that the nurse or doctor can make a thorough examination of the abnormal cells of the cervix. The test takes about 15 20 minutes. Before your test you ll be helped to position yourself on a specially designed chair or examination table. In the same way as when you had the screening test (see page 12), the nurse or doctor will use a speculum to hold the vagina open. The doctor or nurse may first repeat the screening test. The cervix is then painted with a liquid to make the abnormal areas show up more clearly. A light is shone onto the cervix and the nurse or doctor looks through the colposcope to examine the area in detail. A small sample of surface cells (a biopsy) will be taken from the cervix and examined under a microscope by a pathologist 14
How cervical cancer is diagnosed in the laboratory. It may be slightly painful when the biopsy is taken, and for a short time afterwards. Taking a mild painkiller can help with this. Having a biopsy may also cause a bit of light bleeding for a few days afterwards. 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. Sometimes the LLETZ may be done during your colposcopy appointment. Abnormal cells are most likely to develop in an area of the cervix known as the transformation zone (see page 16). A LLETZ is a common procedure that removes the abnormal cells. Having a LLETZ normally takes about 5 10 minutes. It s usually done under a local anaesthetic as an outpatient at the hospital. Once you re in a comfortable position, the doctor will put some local anaesthetic onto your cervix to numb it. The doctor uses a colposcope to see a magnified image of your cervix. A thin wire, which is shaped in a loop, is then used to cut away the affected area. The procedure may feel uncomfortable and it s usual to have slight bleeding or discharge, which can last for a few weeks after this treatment. You may be asked not to use tampons or have sex for a month afterwards. 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. The straight wire acts like a knife and enables the doctor to cut away the precise area of affected tissue. 15
Understanding cervical cancer Cone biopsy Sometimes a procedure known as a cone biopsy may be used if the abnormal area in the cervix can t be seen with a colposcope. A cone biopsy is usually done under a general anaesthetic, although a local anaesthetic may sometimes be used. You may need to stay in hospital overnight. Womb (uterus) Cervix Vagina Area of biopsy Transformation zone Area of cone biopsy shown by dotted line 16
How cervical cancer is diagnosed A small, cone-shaped section of the cervix is removed, which is large enough to contain the abnormal cells. If there s only a very small growth of cancer cells (known as a microinvasive cancer), the cone biopsy may remove it all so that no further treatment is needed. Even if the cone biopsy doesn t remove all the cancer cells, it s still useful, as it will help the doctors decide on the right type of treatment for you. After a cone biopsy a gauze pack, which is like a tampon, may be placed in your vagina to prevent bleeding. This is usually removed within 24 hours, before you go home. You may also have a thin tube, called a catheter, put 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. Strenuous physical activity and sex should be avoided for four weeks to allow the cervix to heal. It may take some time for you to get the results of these tests. You could ask your gynaecologist about when and how you ll be told about whether you need more tests or treatment. It s a difficult time for most women and you may need support from family, friends or support organisations (see pages 96 105) while you re waiting for your results. 17
Understanding cervical cancer Types of cervical cancer There are two main types of cervical cancer. The most common is called squamous cell carcinoma. This develops from the flat cells that cover the outer surface of the cervix at the top of the vagina. The other type is called adenocarcinoma. This type develops from the glandular cells that line the cervical canal (the endocervix see page 9). As adenocarcinoma starts in the cervical canal, it can be more difficult to detect with cervical screening tests. There are also other, less common types of cancer of the cervix, known as adenosquamous carcinomas, clear-cell carcinomas and small-cell carcinomas. Our cancer support specialists can give you more information about these types of cervical cancer call us on 0808 808 00 00. The tests listed on pages 14 17 will show which type of cervical cancer you have. They can also give information about the stage of the cancer (see pages 24 26) and whether there are signs of microscopic cancer cells in the lymph or blood vessels. This information, as well as the physical examination and the results of further tests (see pages 19 23), will help your doctors decide which type of treatment is best for you. 18
Tests after diagnosis Tests after diagnosis Your gynaecologist will need to do some further tests to check your general health and see whether the cancer has spread beyond the cervix. The tests may include any of the following: Blood tests A sample of blood is taken to check the number of cells in your blood (your blood count), and to see how well your kidneys and liver are working. Chest x-ray This is to check that your lungs and heart are healthy. Examination under anaesthetic (EUA) This is an examination of the vagina and cervix under a general anaesthetic. It allows the doctor to examine you thoroughly without it being uncomfortable. The doctor may also look into your bladder and the lower end of your large bowel (the colon and rectum) to see if the cancer has spread. To look into your bladder the doctor will use a cystoscope, which is a small, fibre-optic tube with a light. If there are any abnormal areas, the doctor can use the cystoscope to take biopsies. To look into the lower end of the colon and the rectum, the doctor uses a similar tube called a proctosigmoidoscope. The proctosigmoidoscope is also used to take biopsies from any abnormal areas. 19
Understanding cervical cancer You may have some slight bleeding for a couple of days after this examination. Your healthcare professional will be able to give you more information about the examination and what to expect afterwards. 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 10 30 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 3 4 hours before the scan. Someone having a CT scan 20
Tests after diagnosis 21
Understanding cervical cancer 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 re 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. 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, for example 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 ll be able to hear, and speak to, the person operating the scanner. 22
Tests after diagnosis 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 (see page 20), and a positron emission tomography (PET) scan, which 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 a PET/CT scan. You won t be able to eat for six hours before the scan, although you may be able to have a drink. At least an hour before the scan, a mildly radioactive substance is injected into a vein, usually in your arm. The radiation dose used is very small. The scan itself usually takes 30 90 minutes. You should be able to go home after the scan. It will probably take several days for the results of these tests to be ready. The waiting period will obviously be an anxious time for you. You may find it helpful to talk things over with your clinical nurse specialist, or with a relative or close friend. You can also contact one of our cancer support specialists on 0808 808 00 00, or one of the organisations listed on pages 96 102. 23
Understanding cervical cancer Staging The stage of a cancer is a term used to describe 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. 24
Staging 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. 25
Understanding cervical cancer 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 2A. Locally advanced cervical cancer this usually includes stages 2B 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. 26
Treatment overview 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 age and general health, and the type and stage of the cancer. Early-stage cancer Surgery Surgery is often the main treatment for women with early-stage cancer of the cervix. Radiotherapy Radiotherapy is as effective as surgery for early-stage cancer and may be used as an alternative to surgery. Sometimes radiotherapy may also be given after surgery if there s a risk that cancer cells may have been left behind. This helps reduce the risk of the cancer coming back. Radiotherapy rather than surgery is usually used to treat larger tumours in the cervix (tumours over 4cm). This is because it s often not possible to completely remove a larger tumour with surgery alone, whereas radiotherapy treatment can be very effective. Radiotherapy is often given in combination with chemotherapy treatment for larger tumours. This is known as chemoradiation. It s thought that the chemotherapy makes cervical cancer more sensitive to the effects of the radiotherapy, so that the treatment is more effective. 27
Understanding cervical cancer Locally advanced cancer Chemoradiation This is the main treatment for locally advanced cancer. Surgery Very occasionally, an operation known as a pelvic exenteration (see page 71) may be carried out if the cancer has spread to nearby organs in the pelvis (such as the bladder or bowel), but not to distant organs (such as the lungs). This type of surgery involves a major operation and is only suitable for a small number of women. Advanced-stage cancer Chemotherapy This may be used to treat cancer that has spread to more distant parts of the body, such as the liver and lungs. Chemotherapy can help to shrink and control the cancer and relieve symptoms, to prolong a good quality of life. This is known as palliative treatment. Planning your treatment In most hospitals, a team of specialists will work together to decide which treatment is best for you. This multidisciplinary team (MDT) will include: a gynaecological oncologist (a surgeon who specialises in gynaecological cancers) a clinical oncologist (a doctor who specialises in treating cancer with radiotherapy and chemotherapy) 28
Treatment overview a medical oncologist (a doctor who specialises in treating cancer with chemotherapy) a specialist nurse, who will be your main contact and will make sure you get help and support throughout your treatment. The MDT may also include other healthcare professionals, such as a radiographer (a person who operates the machine that gives radiotherapy treatment), dietitian, physiotherapist, occupational therapist, psychologist or counsellor. The MDT will take a number of factors into account when advising you on the best course of action. These factors include your age, general health, the type and size of the tumour, and whether the cancer has begun to spread. If two treatments are equally effective for your type and stage of cancer, your doctors may offer you a choice of treatments. Sometimes people find it hard to make a decision. If you re asked to make a choice, make sure you have enough information about the different options, what s involved and the possible side effects, so that you can decide on the right treatment for you. Remember to ask questions about any aspects that you don t understand or feel worried about. It may help to discuss the benefits and disadvantages of each option with your cancer specialist, your nurse specialist or our cancer support specialists on 0808 808 00 00. If you have any questions about your treatment, don t be afraid to ask your doctor or nurse. It often helps to make a list of questions and to take a relative or close friend with you. You could use the form on page 106 to write down your questions and the answers you receive. 29
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Treatment overview 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 re 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 for people to need explanations repeated. 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. 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. 31
Understanding cervical cancer 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. The benefits and disadvantages of treatment Many people are frightened at the idea of having cancer treatments, particularly because of the possible side effects. However, these can usually be controlled with medicines. Treatment can be given for different reasons, and the potential benefits will vary depending upon the individual situation. In women with early-stage cervical cancer, treatment is given with the aim of curing the cancer. With advanced cancer (cancer that has spread to distant organs), treatment is usually given to control the cancer rather than to cure it. The aim is to improve symptoms and give a better quality of life. However, for some women the treatment will have little effect on the cancer and they will have the side effects without a great deal of benefit. If you ve been offered treatment that aims to cure your 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 32
Treatment overview your doctor whether you wish to have treatment. If you choose not to have it, you can still be given supportive (palliative) care, with medicines to control any symptoms. Second opinion Your multidisciplinary team 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. 33
Understanding cervical cancer Surgery Surgery for cervical cancer should be carried out in a specialist cancer centre by a gynaecological oncologist or a gynaecologist with a special interest in cancer. The type of surgery you have will depend on the size of the cancer and whether it has spread beyond the cervix. Types of surgery Cone biopsy If the cancer cells have spread only slightly beyond the surface of the cervix, it may be possible to treat this by removing a cone-shaped piece of tissue from the cervix. This is called a cone biopsy see pages 16 17. Hysterectomy Often an operation called a hysterectomy is needed to treat cancer of the cervix. Two different types of hysterectomy are used to treat cervical cancer. The type you have will depend on the stage of your cancer: A total hysterectomy involves removing the womb and cervix, and occasionally the fallopian tubes and ovaries. A total hysterectomy is only suitable for women with very early-stage cervical cancer (stage 1A1 see page 24). A radical hysterectomy is the removal of the womb, cervix, tissue around the cervix (parametrium), fallopian tubes, pelvic lymph nodes and upper part of the vagina, and sometimes the ovaries. Most cancers of the cervix are treated with a radical hysterectomy. Sometimes some of the abdominal 34
Surgery lymph nodes may be removed in addition to the pelvic lymph nodes during a radical hysterectomy (see page 8). 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. If you need to have your ovaries removed, your healthcare team will discuss this with you before your surgery. They will also be able to tell you about treatments to help you cope with menopausal symptoms. We have more detailed information on pages 66 67. A hysterectomy can be carried out in different ways. The most common way is through a cut (incision) in the abdomen, known as an abdominal hysterectomy. However, for some women it may be possible to have a laparoscopic hysterectomy or keyhole surgery. During keyhole surgery, your doctor makes small cuts (incisions) in your abdomen. Small surgical instruments and a laparoscope (a telescope with a camera on the end) are inserted through these. The womb, cervix and ovaries (if needed) are then removed through the vagina or through a small cut in the abdomen. If you re having keyhole surgery the doctors will explain in more detail how your operation will be carried out. We have more information about the different types of hysterectomy in our fact sheet Having a hysterectomy. After a hysterectomy you will no longer have a womb, so even if you re of child-bearing age you will 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 to discuss your fertility options. Your options may include embryo 35
Understanding cervical cancer (fertilised egg) storage and surrogacy, which is when another woman carries a child in her womb for you (see pages 67 70). Fertility treatments such as embryo-storage need to be carried out before surgery, so it s important that you ask your hospital team to refer you before your hysterectomy. Radical trachelectomy For some women it may be possible to have an operation known as a radical trachelectomy, where the womb (uterus) is left in place so it s still possible to have a baby. This type of operation is only suitable for women with very early-stage cancer of the cervix. A radical trachelectomy involves removal of the cervix, the tissues next to the cervix and the upper part of the vagina. The lymph nodes in the pelvis are also removed, usually through tiny cuts in the abdomen (called keyhole or laparoscopic surgery). The womb is left in place and a stitch is placed at the bottom of the womb during the surgery. This helps to keep the womb closed during pregnancy. There is a higher chance of miscarriage after this procedure, and if you become pregnant the baby would 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 gynaecologist to refer you to a specialist hospital if you would like to discuss the possibility of having a radical trachelectomy. It s important that your doctor fully explains to you the benefits and possible risks of this type of operation. 36
Surgery After your operation 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 When you get back to the ward, you ll have a drip (an intravenous infusion) going into a vein in your arm until you re able to eat and drink normally. You may also have drainage tubes from the wound to drain off any excess fluid. The drip and drains are taken out within a few days. Usually a small tube (catheter) is put into your bladder to drain your urine into a collecting bag. This is removed when you become more mobile. Some women may have difficulty passing urine once their catheter has been removed and need to have the catheter put back in again. This is usually a temporary problem, and the catheter usually only needs to stay in for 2 3 weeks until normal bladder function returns. Pain It s normal to have some pain or discomfort for a few days, 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. Some women 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 37
Understanding cervical cancer 38
Surgery membranes surrounding your spinal cord. An epidural will give you continuous pain relief. Other women may have painkillers through a special pump known as a patient-controlled analgesia pump (PCA pump). If you have a PCA pump it 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. Going home Your hospital team will give you more information about how long you might need to stay in hospital. You may 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. 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 help can be arranged. Before you go home, you ll be given an appointment to attend an outpatient clinic for your post-operative check-up. If you need to go home with a urinary catheter (see page 37), the hospital team can arrange for a district nurse to visit you at home to check how things are. 39
Understanding cervical cancer 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. Vaginal care If you have a hysterectomy, it s common to have a vaginal discharge for up to six weeks afterwards. This is usually reddish-brown in colour. If the discharge becomes bright red, heavy, or contains clots, contact your doctor straight away. To reduce the risk of an infection, use sanitary pads rather than tampons and have a shower or bath every day. After a trachelectomy it s normal to have a light reddish-brown vaginal discharge. Your healthcare professionals will let you know how long this discharge is likely to last. You ll be advised to shower daily and not to have sex or place anything in your vagina (such as tampons) for about six weeks after your surgery. Swimming should also be avoided. This is so the surgical area can heal properly and the risk of infection is reduced. Sex You ll be able to go back to your usual sex life, but your doctor will probably advise you not to have sex for at least six weeks after your operation, to allow the wound to heal properly. Many women find they need more time before they re ready to resume a sexual relationship. Being able to resume a sexual relationship is likely to take more time if you ve had radiotherapy as well as surgery. However, this is an important part of your recovery, so don t be afraid to discuss it with your doctor, specialist nurse or one of 40
Surgery our cancer support specialists on 0808 808 00 00. You might also find it useful to read our booklet Sexuality and cancer. Physical activity It s important to avoid strenuous physical activity or heavy lifting for about three months if you ve had your surgery through an incision in your abdomen. If you ve had laparoscopic surgery you should avoid heavy lifting and also 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. 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 are always happy to talk to you, and 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. 41
Understanding cervical cancer Enhanced Recovery Programme (ERP) Some hospitals follow an Enhanced Recovery Programme, which can help reduce complications following surgery and speed up your recovery. The programme involves careful planning before your operation, so that you re properly prepared and any arrangements that are needed for you to go home are already in place. You ll also be encouraged to start moving around as soon as possible after surgery sometimes on the day of the operation. Any catheters and drips will be removed soon after surgery, and you ll also be allowed to eat and drink soon after surgery. After you ve gone home you ll be regularly reviewed to make sure that you re recovering well. You can ask your doctor whether you ll be suitable for the ERP not all hospitals use it for surgery. Possible long-term complications of surgery Most women will have no long-term complications after surgery for cancer of the cervix. However, some women in particular those who ve had radiotherapy or chemotherapy as well as surgery are more likely to develop long-term complications of surgery. Rarely, women may have bladder or bowel problems after a hysterectomy, because of damage to the nerves that control them 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 the lymph nodes have been removed, there s a risk of developing swelling (lymphoedema) in one or both legs. This is a build-up of lymph fluid that can t drain away normally 42
Radiotherapy 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. 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. Radiotherapy for cancer of the cervix can be external or internal, and is often given as a combination of the two. Treatment with radiotherapy may last for 5 8 weeks. Your cancer specialist (clinical oncologist), who plans your treatment, will discuss your treatment in detail with you. Radiotherapy may be given to treat early-stage cervical cancer. It s also usually given for larger tumours contained in the cervix, or if the cancer has spread beyond the cervix and is not curable with surgery alone. Radiotherapy may also be used after surgery if there is a high risk that the cancer may come back. It s often given in combination with chemotherapy (called chemoradiation). Radiotherapy treatment for cervical cancer will affect the ovaries. For younger women who are still having their monthly periods, radiotherapy will stop the ovaries producing eggs and the hormones oestrogen and progesterone. This will make you infertile, so that it s no longer possible to have a child. It will 43
Understanding cervical cancer also bring on an early menopause, usually about three months after the treatment starts. Your healthcare team will discuss this with you before your treatment starts. They will also be able to give you information about treatments to help you cope with menopausal symptoms, and options for preserving your fertility if you d like to have a child. We have more detailed information about this on pages 66 70. 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 34 43) 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. External radiotherapy External radiotherapy is normally given as an outpatient, as a series of short daily treatments in the hospital radiotherapy department. High-energy x-rays are directed from a machine (called a linear accelerator) at the area of the cancer. Planning your treatment Planning is a very important part of your treatment and may take a few visits. It makes sure that your treatment is as effective as possible. 44
Radiotherapy On your first visit to the radiotherapy department you ll have a CT scan (see pages 20 22), which will take images of the area to be treated. These images are used to plan the precise area of treatment. Once the treatment area has been decided, some small tattoo markings are made on your skin. These help the radiographer (the person who gives you your treatment) ensure that you re in the correct position for your treatment. The marks are permanent, but they are the size of a pinpoint and you ll only have them if you give your permission. It s a little uncomfortable while the tattoo is being done, but it s a good way of making sure that treatment is directed accurately. Having your treatment The treatments are usually given from Monday Friday, with a rest at the weekend. Occasionally if you ve missed a treatment due to illness or a bank holiday, you may be asked to have two treatments on the same day (6 8 hours apart). The number of treatments will depend on the type and size of the cancer, but the whole course of external radiotherapy will usually last 5 6 weeks. Your doctor or radiographer will discuss the treatment and possible side effects with you. Before each session of radiotherapy, the radiographer will position you carefully on the couch and make sure that you are comfortable. During your treatment you will be left alone in the room, but you ll be able to talk to the radiographer who will be able to see you from the next room. The treatment itself will only last a few minutes. 45
Understanding cervical cancer Positioning the radiotherapy machine External radiotherapy isn t painful, but you do have to lie still for a few minutes during treatment (see the photo opposite). The treatment will not make you radioactive and it s perfectly safe for you to be with other people, including children, afterwards. Internal radiotherapy Internal radiotherapy (also called brachytherapy) gives radiation directly to the cervix and the area close by. It s usually given following external radiotherapy. The treatment may be given as an inpatient or outpatient. 46
Radiotherapy 47
Understanding cervical cancer To give brachytherapy, a piece of radioactive material called a source is put close to the cancer or, if you ve had surgery, the area where the cancer was before it was removed. The source is placed inside specially designed hollow tubes called applicators. A brachytherapy machine is used to place the source into the applicators and to deliver the radiotherapy. Intrauterine brachytherapy If you ve not had a hysterectomy, you will have intrauterine brachytherapy. A doctor inserts the applicators into the vagina and passes them up through the cervix into the womb. Sometimes additional applicators are placed alongside the cervix. The applicators are inserted in an operating room 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 prevent the applicators moving, a pack of cotton/gauze padding is placed inside the vagina. Occasionally a piece of gauze is also placed inside the back passage (rectum), and you may have a catheter put into your bladder to drain off urine. While the applicators remain in place during treatment they can be uncomfortable, so you will usually need painkillers to ease any discomfort. Intravaginal brachytherapy If you have had a hysterectomy, a single larger hollow tube applicator is placed in the vagina. With intravaginal brachytherapy you won t need an anaesthetic or sedation to insert the applicator and padding isn t necessary. 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 then used to place the source into the applicators and deliver the radiotherapy treatment. 48
Radiotherapy Brachytherapy may be given in several short bursts or in one long slow treatment, depending on the systems used. There are several different systems in use, and they re described over the next few pages. High-dose rate treatment This is the most common way of giving brachytherapy to the cervix in the UK. With high-dose rate treatment, a machine containing a radioactive source of iridium or cobalt is used to give a high dose of radioactivity over a few minutes. High-dose rate treatment may be given as an inpatient or outpatient. How high-dose rate treatments are given varies from hospital to hospital. Your radiotherapy team will be able to tell you exactly how your treatment will be given. Usually the treatment takes about 10 15 minutes and is repeated several times, a few days apart. For example, you may have treatment four times over several days while you re an inpatient. The applicators are usually removed between treatments, but in a few hospitals they re left in place between treatments and then removed after the final treatment. Alternatively the treatment may be given 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 are 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 the bladder to drain urine during high-dose rate treatment. 49