Understanding Cervical Cancer. A guide for women with cancer, their families and friends.

Transcription

1 Understanding Cervical Cancer A guide for women with cancer, their families and friends.

2 Understanding Cervical Cancer A guide for women with cancer, their families and friends. First published January 2003 Revised June 2005, March 2008, June 2009 The Cancer Council New South Wales 2009 ISBN Understanding Cervical Cancer is reviewed approximately every two years. Check the publication date above to ensure this copy of the booklet is up to date. To obtain a more recent copy, phone the Cancer Council Helpline on Acknowledgements We thank the reviewers of this booklet: Professor Neville Hacker, Director, Gynaecological Cancer Centre, Royal Hospital for Women; Jayne Maidens, Clinical Nurse Consultant, Gynaecological Oncology Department, Royal North Shore Hospital; Anne Mellon, Clinical Nurse Consultant, Hunter Centre for Gynaecological Cancer; and Kaye Malcolm, Cancer Council volunteer. We would also like to thank the health professionals and consumers who have worked on previous editions of this title. Editor: Jenny Mothoneos and Laura Wuellner Cartoonist: Greg Smith Note to reader Always consult your doctor before beginning any health treatment. This booklet is intended as a general introduction to the topic and should not be seen as a substitute for your doctor s or health professional s advice. However, you may wish to discuss issues raised in this booklet with them. All care is taken to ensure that the information in this booklet is accurate at the time of publication. Cancer Council New South Wales Cancer Council is the leading cancer charity in NSW. It plays a unique and important role in the fight against cancer through undertaking high-quality research, advocating on cancer issues, providing information and services to the public and people with cancer, and raising funds for cancer programs. This booklet is funded through the generosity of the people of NSW. To make a donation to help defeat cancer, visit Cancer Council s website at or phone Cancer Council New South Wales 153 Dowling Street Woolloomooloo NSW 2011 Cancer Council Helpline: Telephone: (02) Facsimile: (02) feedback@nswcc.org.au Website:

3 Introduction This booklet has been prepared to help you understand more about cervical cancer. Many people feel understandably shocked and upset when told they have cervical cancer. We hope this booklet will help you understand how cervical cancer is diagnosed and treated. We also include information about support services. We cannot advise you about the best treatment for you. You need to discuss this with your doctors. However, we hope this information will answer some of your questions and help you think about questions you want to ask your doctors or other health carers. You may like to pass this booklet to your family and friends for their information. This booklet does not need to be read from cover to cover just read the parts that are useful to you. Some medical terms that may be unfamiliar are explained in the glossary. If you re reading this booklet for someone who doesn t understand English, contact the Cancer Council Helpline on for services available in different languages. How this book was developed The information in this book was developed with help from medical experts and women who have had cervical cancer. Introduction 1

4 Contents What is cancer?... 4 The cervix... 6 Pap test... 8 Cervical cell changes... 9 Cervical cancer explained What is cervical cancer? Causes of cervical cancer How common is it? What are the symptoms? Diagnosis Colposcopy Cone biopsy Large loop excision of the transformation zone Further tests Stages of cervical cancer Prognosis Which health professionals will I see? Treatment Surgery Radiotherapy Chemoradiation Chemotherapy Palliative treatment Cancer Council NSW

5 Managing side effects Tiredness Menopause Sex, intimacy and cancer Bladder problems Bowel problems Making treatment decisions Talking with doctors A second opinion Taking part in a clinical trial Looking after yourself Healthy eating Being active Complementary therapies Life after treatment Seeking support Practical and financial help Understanding Cancer program Talk to someone who s been there Cancer Council Helpline Caring for someone with cancer Information on the Internet Cancer information library Question checklist Glossary How you can help Regional offices Contents 3

6 What is cancer? Cancer is a disease of the cells, which are the body s basic building blocks. Our bodies constantly make new cells: to help us grow, to replace worn-out cells, or to heal damaged cells after an injury. Normally, cells grow and multiply in an orderly way, but sometimes something goes wrong with this process and cells grow in an uncontrolled way. This uncontrolled growth may result in abnormal blood cells or may develop into a lump called a tumour. A tumour can be benign (not cancer) or malignant (cancer). A benign tumour does not spread outside its normal boundary to other parts of the body. However, if a benign tumour continues to grow at the original site, it can cause a problem by pressing on nearby organs. The beginnings of cancer Normal cells Abnormal cells Abnormal cells multiply Malignant or invasive cancer Boundary Lymph vessel Blood vessel Some benign tumours are precancerous and may progress to cancer if left untreated. Other benign tumours do not develop into cancer. Cancer Council Victoria 4 Cancer Council NSW

7 How cancer spreads Primary cancer Local invasion Angiogenesis tumours grow their own blood vessels Lymph vessel Boundary Cancer Council Victoria Metastasis cells move away from the primary tumour and invade other parts of the body via blood vessels and lymph vessels Blood vessel A malignant tumour is made up of cancer cells, which grow out of control and are able to spread. When it first develops, a malignant tumour may not have invaded nearby tissue. This is known as a cancer in-situ (carcinoma in-situ) or localised cancer. As the tumour grows, it may invade surrounding tissue, becoming invasive cancer. Sometimes cells move away from the original (primary) cancer and spread to other organs and bones. When these cells reach a new site, they may continue to grow and form another tumour at that site. This is called a secondary cancer or metastasis. A metastasis keeps the name of the original cancer. For example, cervical cancer that has spread to the lung is still called cervical cancer, even though the person may be experiencing symptoms caused by problems in the chest area. What is cancer? 5

8 The cervix The cervix is part of the female reproductive system, which also includes the uterus, ovaries, Fallopian tubes, vagina and vulva. The cervix is the lower part of the uterus (womb), which connects to the vagina. It is also called the neck of the uterus. The functions of the cervix include: producing some of the moistness that lubricates the vagina producing the mucus that helps sperm travel up to the Fallopian tube to fertilise an egg from the ovary holding a developing baby in the uterus during pregnancy. During childbirth, the cervix widens to allow the baby to pass down inato the birth canal (vagina). The cervix is covered by two kinds of cells: squamous and glandular. The squamous cells are flat, thin cells found in the outer layer of the cervix (ectocervix). The glandular cells are found in the cervical canal (endocervix). The point where these two cells meet is called the squamocolumnar junction. 6 Cancer Council NSW

9 The female reproductive system Fallopian tube Uterus Endometrium Egg Ovary Cervix Vagina Labia Position of the female reproductive system in the body The cervix 7

10 Pap test Cervical cancer develops in stages. Doctors perform screening tests such as the Papanicolaou test (Pap test or Pap smear) to look for abnormal cell changes that may develop into cancer if left untreated. During a Pap test, a doctor uses an instrument such as a brush or spatula to scrape some cells from the surface of the cervix. This may feel slightly uncomfortable, but usually only takes a minute or two. The instrument may be put into a special fluid (liquid-based cytology) or the cells are smeared onto a glass slide. The cells will then be examined under a microscope for abnormalities. A woman should have a Pap test every two years, but women who have abnormal changes should be tested more often. Most abnormal Pap test results are caused by HPV. See page 11 for more information about this virus. To learn more about Pap tests, talk to your doctor or gynaecologist. You can also call the Cancer Council Helpline on for a copy of Pap smear results: a guide for women with an abnormal Pap smear test. My doctor said that because I had regular Pap smears, my cancer was picked up while it was small. The treatment was straightforward and my body is intact. 8 Cancer Council NSW

11 Cervical cell changes There are several types of early cell changes, including: Atypia the cervical cells have changed slightly. The cells may return to normal or the changes may worsen. If a cell shows signs of atypia, it does not mean you have cancer. Atypia can be caused by infection or irritation. However, it may indicate a precancer. Dysplasia abnormal changes in the cervical cells. It is also called cervical intraepithelial neoplasia (CIN). Like atypia, dysplasia is not cancer. It does not cause health problems itself, but it is considered to be precancer. If dysplasia is not treated, it will sometimes progress to an early form of cervical cancer. These abnormalities on the surface of the cervix are referred to as epithelial abnormalities. Epithelial abnormalities are graded depending on the thickness of the layer of abnormal cells. Early changes are called low-grade epithelial abnormality (CIN 1). In most cases, the abnormal, precancerous cells will disappear without treatment. If the abnormal cells continue to change, they are called high-grade epithelial abnormality (CIN 2 or CIN 3). These cells need treatment. The cervix 9

12 Cervical cancer explained What is cervical cancer? Cervical cancer is a malignant tumour in the tissues of the cervix. The two main types of cervical cancer are named after the type of cells from which they originate: Squamous cell carcinoma: This is the most common type of cervical cancer, accounting for about 80% of all cases. It starts in the skin-like squamous cells of the cervix. Adenocarcinoma: This is a less common type of cervical cancer, which develops from the glandular cells. Adenocarcinoma is more difficult to diagnose because it starts higher in the cervix and is harder to reach with the brush or spatula used in a Pap test. Cervical cancer can spread (metastasise) to other parts of the body through the lymphatic system, which is a network of tissues, capillaries, ducts and nodes that pump lymph fluid through the body. Lymph fluid removes excess fluid, protein and bacteria from the body. Cervical cancer can be microinvasive or invasive: Microinvasive cancer: This occurs when cancer cells have broken through the boundary between the epithelium and the stroma. At this stage, the cells have not spread more than five millimetres into the tissues of the cervix. Invasive cervical cancer: The cancer cells have spread into the underlying stroma to a depth of more than five millimetres. The cancer may have also spread to the vagina, the lymph nodes, other tissues around the cervix, or into other organs such as the bladder or rectum. 10 Cancer Council NSW

13 Causes of cervical cancer The exact cause of cervical cancer is unknown, but some factors increase a woman s risk: Human papillomavirus (HPV) infection: This is the name for a group of wart viruses. It is a common infection affecting the surface of any part of the body, including the skin, vagina and cervix. More than 100 types of HPV have been identified, but about a dozen types are considered high risk because they can lead to cancer. Around eight out of 10 women will become infected with genital HPV at some time in their lives and, for about 98% of women, the virus is cleared quickly by the immune system. However, HPV does not often cause any symptoms, so most people are unaware they have the virus. HPV can cause precancer cell changes that can be detected by Pap tests. You should have regular Pap tests so your doctor can look for signs of HPV and precancer cells. Smoking: Chemicals in tobacco may damage the cells of the cervix and make cancer more likely to develop. How common is it? In NSW about 222 women are diagnosed with cervical cancer each year, according to the latest figures. Cervical cancer accounts for 1.5% of all cancers in women. Between 1997 and 2006, the incidence rates of cervical cancer fell by 40%. The is probably because more regular Pap tests are conducted as part of the National Cervical Screening Program. Cervical cancer explained 11

14 What are the symptoms? If early cell changes develop into cervical cancer, the most common symptoms include: vaginal bleeding between periods bleeding after intercourse pain during intercourse unusual vaginal discharge vaginal bleeding after menopause excessive tiredness leg pain or swelling lower back pain. These symptoms are also due to other more common conditions. However, see your general practitioner (GP) if you are concerned. If necessary, your GP will refer you for tests to see if you have cancer. See the Diagnosis section on the next page. I d been through the change of life a couple of years before but I started bleeding on and off. 12 Cancer Council NSW

15 Diagnosis More tests will be needed to confirm the diagnosis. You may have some or all of the following tests. Colposcopy A colposcopy can help identify where abnormal or changed cells are located and what they look like. In this procedure, an instrument called a colposcope is used. It looks like a pair of binoculars sitting on a large stand. The colposcope does not enter the body the doctor puts an instrument called a speculum into your vagina to hold the walls slightly apart and then has a magnified picture of the cervix, vagina and vulva through the colposcope. The doctor will probably take a tissue sample (biopsy) during the colposcopy. Before the test, the doctor may coat your vagina and cervix with a special solution that will help highlight any abnormal areas. You may experience some mild discomfort for minutes while the colposcopy is performed. Some colposcopes are fitted with a camera, which is connected to a TV screen, so you can watch what the doctor is doing, if you like. Diagnosis 13

16 Biopsy A biopsy is when your doctor removes some tissue from the cervix and sends it to the laboratory for examination under a microscope. You may feel uncomfortable for a short time when the tissue is removed. Biopsies are usually performed in a clinic. The results should be back from the laboratory within about a week. Side effects After a biopsy, you may experience some pain, similar to menstrual cramping. You can ask for medication to relieve the pain. You may also have some bleeding or other vaginal discharge, but these side effects will gradually disappear. To allow the cervix to heal after a biopsy and to reduce the chance of infection, you should not have sexual intercourse or use tampons for at least a few days. 14 Cancer Council NSW

17 Cone biopsy A cone biopsy is used to determine how deeply cancer cells have spread to tissue beneath the surface of the cervix. A cone biopsy is also used to treat very early and very small tumours. Further treatment is needed for cancers that are larger. This procedure removes a coneshaped piece of tissue containing the abnormal cells from the cervix. It is usually performed under a general anaesthetic and involves a day or overnight stay in hospital. Cone biopsy results are usually available within a week. Uterus Cervix Area of cone biopsy Vagina Side effects After the cone biopsy, some light bleeding or cramping for a few days is common. You may have a small gauze pack put into your vagina to help stop the bleeding. After the gauze is removed, you should avoid doing anything physically strenuous for a few weeks, as this could restart your bleeding or make you bleed more heavily. If the bleeding lasts longer than two weeks or has an offensive odour, see your doctor. To allow your cervix to heal and to prevent infection, sexual activity and tampons should be avoided for four to six weeks. A cone biopsy make weaken the cervix. You can still become pregnant, but may be at higher risk of miscarriage. If you would like to become pregnant, talk to your doctor before the cone biopsy. Supportive stitches may be inserted into the cervix to strengthen it, and are usually removed before you give birth. Diagnosis 15

18 Large loop excision of the transformation zone Another method that removes a large sample of the cervix for examination is called a large loop excision of the transformation zone (LLETZ). Your transformation zone is partly located in your endocervical canal, but its position varies, depending on your age and whether or not you have been pregnant. In a LLETZ, a loop of wire carrying an electric current is used to cut out abnormal tissue from the cervix. Sometimes the doctor is able to remove all visible abnormal cells. This procedure takes about 10 minutes and may be performed under a local anaesthetic in the doctor s office or in hospital under general anaesthesia. In some cases, the doctor may perform the LLETZ at the same time as a colposcopy. Side effects After a LLETZ, you may have some vaginal bleeding and cramping. This will usually ease in about two weeks. To give your cervix time to heal and to prevent infection, you should not have sexual intercourse or use tampons for four to six weeks. During this time, avoid using a hot spa or sauna, as this can slow the healing process. 16 Cancer Council NSW

19 Further tests If the biopsy shows you have cervical cancer, other tests may be needed. These will help determine if the cancer has spread to other parts of the body. This is called staging. You may have one or more of the following tests. Blood tests Blood tests may be taken to check your general health. Chest x-ray An x-ray of your chest may be taken to check your lungs for signs of cancer. CT scan A CT (computerised tomography) scan is a type of x-ray procedure that takes pictures of the inside of your body. It can help assess if the cancer has spread to the lymph nodes or to other organs. To make the scan pictures clearer and easier to read you may be asked to drink a special liquid (called contrast fluid) or have a tampon inserted into your vagina before the scan. Sometimes a special liquid is also put into your rectum before the scan. This may make you feel hot all over for a few minutes. This painless test takes about 30 to 40 minutes. You will lie flat on a table while the CT scanner, which is large and round like a doughnut, takes pictures. After the scan, you can usually go home. People who are allergic to iodine may also be allergic to the dye used in a CT or MRI scan. If you think you may have such an allergy, tell your doctor before the scan. Diagnosis 17

20 MRI scan An MRI (magnetic resonance imaging) scan uses a powerful magnet linked to a computer to take detailed pictures of areas inside the body. The pictures are taken while you lie on a table that slides into a metal cylinder. An MRI scan is painless but some women find that lying in the cylinder is noisy and claustrophobic. Let your doctor or nurse know if you feel uncomfortable. They can give you medication to ease this feeling. The scan takes less than an hour, and most people are able to go home as soon as it is over. PET scan Before a PET (positron emission tomography) scan you will be injected with a glucose solution containing a small amount of radioactive material, which takes 30 to 50 minutes to spread throughout your body. Cancerous cells will have an increased uptake of the glucose solution, which the PET scan will identify. The scan takes about one hour. Examination under an anaesthetic You will be given a general anaesthetic so your vagina, cervix, bladder and rectum can be examined. The doctor will insert a narrow instrument called a cystoscope into your urethra to examine your bladder. During this examination, a biopsy will be taken if necessary. You may also have some of the cells in your uterus removed for examination. This is called a dilation and curettage (D&C). After a D&C, bleeding is common for a few days. 18 Cancer Council NSW

21 Stages of cervical cancer One of the following stages will be used to describe the cancer: Stage 1: The cancer is found only in the tissues of the cervix. Stage 2: The tumour has spread beyond the cervix to the vagina and tissues next to the cervix. Stage 3: The cancer has spread to the pelvic side wall. Stage 4: The cancer has spread to the bladder or rectum, or beyond the pelvis to the lung, liver or bones. Prognosis Prognosis means the expected outcome of a disease. The sooner cervical cancer is diagnosed, the better the prognosis. Most women with early cervical cancer will be cured. You will need to discuss your prognosis with your doctor, but it is not possible for any doctor to give you a 100% accurate prediction on the course of the illness. Test results, the rate and depth of tumour growth, how well you respond to treatment, and other factors such as age, fitness and your medical history are all important factors in assessing your prognosis. Diagnosis 19

22 Which health professionals will I see? Your GP will arrange the first tests to assess your symptoms. If these tests do not rule out cancer, you will usually be referred to a gynaecological oncologist. This specialist will arrange further tests and advise you about treatment options. You will be cared for by a range of health professionals who specialise in different aspects of your treatment. These will probably include: gynaecological oncologist a doctor who has completed specialist training in cancer of the female reproductive system and its treatment medical oncologist responsible for chemotherapy radiation oncologist responsible for radiotherapy nurses support and help you throughout your treatment cancer nurse coordinator coordinates your care, supports you throughout treatment and answers your questions dietitian recommends the best diet to follow while you are in treatment and recovery psychologist helps you and your family address the emotional impact of cancer and its treatment social worker, physiotherapist and occupational therapist provide advise on support services and help you to resume normal activities. 20 Cancer Council NSW

23 Treatment Your doctor will advise you on the best treatment for the cancer. This will depend on the results of your tests, where the cancer is and if it has spread, your age, your general health, and what you want. Surgery or a combination of chemotherapy and radiotherapy are the most common treatments for cervical cancer. Surgery Surgery is common for women who have small tumours found only within the cervix. The type of surgery will depend on the extent of the cancer in the cervix. If the tumour is very small, a cone biopsy may be the only treatment you need (see page 15). Trachelectomy One type of surgery you may have is a radical trachelectomy, which removes the cervix. For small cancers in young women, a trachelectomy may preserve fertility. The side effects of a radical trachelectomy are similar to those of a hysterectomy, but you will still have periods (menstruate) after the surgery. Treatment 21

24 Hysterectomy A hysterectomy is the surgical removal of the uterus and cervix. There are two main types of hysterectomies, which are performed under a general anaesthetic: Total hysterectomy: The uterus and cervix are removed. You will spend about four to five days in hospital. Radical hysterectomy: The uterus and about two centimetres of the upper vagina and the soft tissue around the cervix are removed. This surgery may affect your bowel or bladder function. You may have to spend about a week in hospital. You may also have a bilateral salpingo oophorectomy. This means both the ovaries and the Fallopian tubes are removed. The need for a bilateral salpingo oophorectomy will depend on your age and how far the cancer has spread (metastasised). Removing lymph nodes Your doctor may decide to surgically remove some lymph nodes in your pelvic region to see if cancer has spread beyond the cervix. This is called a lymph node dissection or a lymphadenectomy. If you have cancer in your lymph nodes, your doctor may advise you to have additional treatment. A lymph node dissection may cause one or both of your legs to swell (lymphoedema). For ways to manage this condition, see page Cancer Council NSW

25 After the operation When you wake up from a hysterectomy, you will have several tubes in place. An intravenous drip will give you fluid and medication. There may also be one or two tubes in your abdomen to drain fluid from the operation site and a small plastic tube (catheter) in your bladder to drain urine. These tubes will be removed three to five days after the operation. As with all major operations, you will have some pain or discomfort. You will be given pain relief medication through an intravenous drip or an epidural (an injection of drugs into the spine). Let your doctor or nurse know when you feel uncomfortable don t wait until the pain becomes severe. While you are in bed, your doctors, nurses and physiotherapist will show you how to move your legs to prevent blood clots and help lymph fluid drain. As soon as you are able, you should get out of bed and walk around. You can go home after any stitches or clips are taken out. Most women feel better within six weeks but recovery may take longer for women who have had a radical hysterectomy. The following tips may help: Rest: Take things easy and only do what is comfortable. Lifting: Avoid heavy lifting for at least three months. Ask others for help around the house. Services are also available to help. See Seeking support on page 42. Driving: Avoid driving for a few weeks after the operation. Sex: Avoid penetrative sexual intercourse for about six weeks after the operation to give the wound time to heal. Treatment 23

26 Side effects After a hysterectomy and oophorectomy, some women experience the following side effects: Adhesions, or internal scar tissue that glues together tissues in the body, may form. Sometimes this can be painful. Adhesions to the bowel or bladder may need to be treated with further surgery. If you had a bilateral salpingo oophorectomy and were not menopausal before the surgery, the removal of your ovaries will cause menopause. For more information, see page 31. If you have had lymph nodes removed (lymphadenectomy), your legs may swell because your lymphatic system is not working properly. This is called lymphoedema. Symptoms may not appear for over two years after surgery. Swelling in your legs may be reduced with gentle massage toward your heart, special compression garments and gentle exercise. Ask your health care team for more ways to reduce lymphoedema or contact the National Breast and Ovarian Cancer Centre on for a copy of the booklet Lymphoedema what you need to know. The physical and emotional changes you experience may also affect how you feel about sex and how you respond sexually. Some of these issues are discussed on pages 32 to Cancer Council NSW

27 Radiotherapy Radiotherapy uses x-rays to kill cancer cells or injure them so they cannot multiply. The radiation can be targeted at cancer sites in your body. Treatment is carefully planned to do as little harm as possible to your healthy body tissues. Radiotherapy is usually given if you are not well enough for a major operation or if the cancer has spread into the tissues surrounding the cervix. Radiotherapy may be used after surgery or combined with chemotherapy (see page 28). It can also treat the lymph nodes in the area of the cancer, in case the cancer has already spread. Usually both external and internal radiotherapy are used to treat cervical cancer. External radiotherapy In external radiotherapy, x-rays from a large machine are directed at the cervix and any other parts of your body that need treatment. You will probably have radiotherapy treatment from Monday to Friday for four to six weeks as an outpatient. The actual treatment only takes a few minutes each time, but the preparation time can take several hours. Blood tests are performed to make sure you are not becoming anaemic. During the treatment, you will lie on a metal table under the radiotherapy machine. Once the machine is turned on, you will be alone in the room, but you will still be able to talk to the radiation therapist through an intercom. The treatment is painless when it is given. Treatment 25

28 Internal radiotherapy In internal radiotherapy, also called brachytherapy, the radiation source is placed inside the body close to the cancer. This allows radiation to be given with minimal effect on nearby organs. You will be given a general anaesthetic so the implant can be inserted into the vagina and cervix. You may have gauze packing and a stitch put in your vaginal lips to keep the implant in place. A small tube (catheter) will be passed into your bladder to drain urine, and your rectum may be blocked. Depending on the type of brachytherapy you are having (low-dose or high-dose), the implant may be left in for between two to 72 hours. The implant may feel uncomfortable when it is inserted, and you should be offered medication for pain relief. While the implant is in place, you won t be able to sit up in bed. You will be alone in a treatment room when you receive brachytherapy. This safety measure may make you feel isolated and frightened at a time when you would like people around you. Talking on the phone, reading or sharing your feelings with nurses may help pass the time. When the brachytherapy is complete and the implant is removed, you will be given pain relief medication. After the implant is removed you are no longer radioactive and you will be able to go home. Your doctors will monitor you for bleeding following treatment. 26 Cancer Council NSW

29 Side effects The side effects of radiotherapy vary depending on the strength of the radiotherapy dose and the length of your treatment. Most side effects occur during or soon after treatment, however some women experience long-term side effects. Lethargy and loss of appetite: The radiotherapy will make you feel tired and you may lose your appetite. If you don t feel like eating you can replace meals with nutritious highcalorie drinks available from the chemist. Hair loss: If radiotherapy is directed at your cervix, you may lose your pubic hair. This hair may grow back after the treatment ends, but it will usually be thinner. Diarrhoea and cystitis: Radiation passes through the bladder and bowel to reach the cervix. This may cause diarrhoea and a burning feeling when passing urine (cystitis). For suggestions on how to manage diarrhoea, see page 35. Menopause: Radiotherapy will cause your ovaries to stop working permanently (if you haven t had them removed by surgery). If you haven t already been through menopause, you will experience menopausal symptoms. Shortening and narrowing of the vagina: Radiotherapy may cause internal scar tissue to form, which sometimes shortens and narrows the vagina. This is called vaginal stenosis. For some ways to keep your vagina open and supple, see the Sex, intimacy and cancer section on page 32. Treatment 27

30 Chemoradiation A combination of radiotherapy and chemotherapy (chemoradiation) is usually used to treat advanced cervical cancer. Research in the US has found that women with invasive cervical cancer have better survival rates when they are given both treatments. Chemoradiation causes more intense side effects than either treatment alone. The side effects include nausea, vomiting and a lowered number of white blood cells (which fight infection). Women with a low white blood cell count may need to stop chemotherapy until their blood counts rise and then restart the combined treatment. Most side effects are temporary and can usually be managed by your health care team. Chemotherapy Chemotherapy uses drugs to kill or slow the growth of cancer cells. The aim is to destroy fast-growing cancer cells while causing the least possible damage to healthy cells. However, some healthy fast-growing cells in your body, such as hair and bone marrow cells, may be affected. Chemotherapy is usually given through a needle inserted into a vein (intravenously). You may need to stay overnight in hospital or you may be treated as a day patient. You will have a number of chemotherapy treatments, sometimes up to six, every three to four weeks over several months. The length of treatment will depend on the disease and what other treatment is being used. 28 Cancer Council NSW

31 Side effects The side effects vary according to the drugs used. They may include feeling sick, vomiting, feeling tired, and some thinning and loss of your body and head hair. Chemotherapy may cause periods to stop temporarily, or cause premature menopause. Chemotherapy may also reduce the number of blood cells in your body. Depending on the type of blood cells affected, you may feel especially tired and will be more prone to infection such as colds and flu. Most side effects are temporary and there are ways to prevent or reduce them. Tell your doctor or nurse about side effects you experience. For more information see the Managing side effects section on page 30. Palliative treatment Palliative treatment helps improve people s quality of life by alleviating symptoms of cancer, without trying to cure the disease. Often treatment is concerned with pain relief and stopping the spread of cancer, but it can also involve the management of other physical and emotional problems. Treatment may include radiotherapy, chemotherapy or other medication. Palliative treatment can help with pain management it is not just for people who are about to die. For more information on palliative treatment or advanced cancer, call the Helpline for free copies of Understanding Palliative Care and Living with Advanced Cancer, or view them online at Treatment 29

32 Managing side effects It will take some time to recover from treatment. As well as physical changes, there are emotional effects to cope with. Side effects vary from person to person. Some women will not experience side effects; others may experience a few. Side effects may last from a few weeks to two years. Fortunately, there are many ways to reduce or manage the discomfort that side effects cause, and most subside or go away in time. This chapter provides information on side effects that are common to more than one type of treatment. For specific information on radiotherapy and chemotherapy side effects, see the Understanding Radiotherapy and Understanding Chemotherapy books. Tiredness Many women find that tiredness is a major issue, particularly after radiotherapy and chemotherapy. The tiredness may continue for some time even after treatment has finished. Some women find it takes them up to two years to feel really well again. Feeling tired is not only a side effect of the treatments. Travelling to hospitals and clinics for treatment can be exhausting. If you work during your treatment or if you have a home and a family to care for, you will probably feel very tired. Try to plan your activities during the day so you can rest regularly. It may also help to talk with your family and friends about how you feel and discuss ways they can help you. 30 Cancer Council NSW

33 Menopause The ovaries produce the hormones oestrogen and progesterone. If you ve had surgery or radiotherapy, your ovaries will no longer produce these hormones. If you are not already menopausal, this will cause sudden menopause. The symptoms are usually more severe than a natural menopause because the body hasn t had time to get used to the gradual decrease in hormone levels. You may experience hot flushes, mood swings, trouble sleeping and tiredness. The vagina can also lose elasticity and become dry, because it needs oestrogen to stay moist. Ways to manage menopausal symptoms include: Hormone replacement therapy (HRT) can help reduce symptoms, however, using HRT for more than five years causes a small increase in the risk of some diseases including breast cancer. If you were already on HRT when your cancer was diagnosed, you will need to weigh up the risks of continuing it. Talk to your gynaecological oncologist about the benefits and risks of HRT. Locally applied oestrogen, contained in creams or pessaries, can be inserted into the vagina to relieve dryness. Vaginal moisturisers without oestrogen can also be used. Herbal remedies and changes to your diet may help. Talk to your doctor or health care team for more information. Let your health care team know how you are managing your menopausal symptoms. Managing side effects 31

34 Osteoporosis and heart disease Menopause may cause bones to weaken and break more easily (osteoporosis). It can also change your cholesterol levels, causing your arteries to harden and become blocked. You may be able to prevent osteoporosis by getting the daily recommended amounts of calcium and vitamin D, doing regular weight-bearing exercise, not smoking and limiting alcohol intake. To find out more contact Osteoporosis Australia at or (02) To prevent heart disease you can also make lifestyle changes such as quitting smoking, maintaining a healthy weight, eating a balanced diet and exercising. If necessary, your doctor may prescribe cholesterol-lowering medications to reduce your risk. Sex, intimacy and cancer Having cancer can affect your sexuality in both physical and emotional ways. The impact of these changes depends on many factors, such as your treatment and its side effects, the way you and your partner communicate, and your self-confidence. Knowing the potential challenges and addressing them will help you adjust to these changes. A lack of interest or loss of desire for sex (low libido) is common because of the physical and emotional effects of treatment. If you do not feel like having sex, or if you find penetration uncomfortable, let your partner know. It is natural to take some time for sex to be comfortable again. 32 Cancer Council NSW

35 The main effect of treatment will be on your vagina. If the ovaries have been affected by surgery or radiotherapy the production of oestrogen will drop or stop. The loss of this hormone may make your vagina dry and it may not expand as easily during sexual intercourse. While this can make sex uncomfortable, it should not affect your ability to reach orgasm. You can do several things to keep your vagina open and supple: Use a dilator, which is a tube-shaped device made of plastic or rubber, to keep the vagina open. Your health care team can show you how to use a dilator. Apply a water-based vaginal lubricant to relieve painful irritation. Avoid Vaseline or oil-based lubricants as they may cause irritation. Have regular gentle sex to help widen the vagina, if you are ready and able. Ask your doctor about hormone replacement therapy (HRT), which may help you manage treatment-related side effects. Managing side effects 33

36 Infertility After a radical hysterectomy or radiotherapy for cervical cancer, it will no longer be possible to have children. If fertility is an important issue for you, talk to your doctor before treatment about ways to preserve it. One option may be to store eggs or embryos before treatment for use in the future. If you were treated with a radical trachelectomy, it will be possible to become pregnant. However, premature delivery and mid-trimester miscarriage are more common. Discuss these risks with your doctor. Many women experience a sense of loss when they learn that their reproductive organs will be removed or will no longer function. You may feel devastated if you are no longer able to have children and may worry about the impact of this on your relationship. Even if your family is complete, you may have mixed emotions. These reactions are natural. As well as talking to your partner, speaking to a counsellor or a gynaecological oncology nurse about your feelings and individual situation may help. For more information on any of these issues, call the Helpline on for a free copy of the Sexuality, Intimacy and Cancer booklet. 34 Cancer Council NSW

37 Bladder problems Bladder sensations or control may change after surgery or radiotherapy. Some women find they need to pass urine more often, or feel that they need to go in a hurry. Others may lose a few drops when they cough, sneeze, strain or lift. For ways to manage involuntary or accidental loss of urine (urinary incontinence), speak to the continence nurse or physiotherapist at your hospital. You can also contact the Continence Foundation of Australia on or The blood vessels in the bowel and bladder can become more fragile after radiotherapy. This can cause blood to appear in your urine or bowel movements, even months or years after treatment. Let your doctor know so the appropriate treatment can be given. Bowel problems After surgery and radiotherapy, some women find their bowel habits change. A woman may experience abdominal pain, constipation or diarrhoea. You may be able to make some lifestyle changes to reduce bowel problems. For example, sucking strong peppermints or drinking peppermint tea can reduce abdominal pain. Drink plenty of liquids to replace lost fluids. Avoid alcohol and limit caffeine and spicy foods as these can make diarrhoea worse. Avoid fried or greasy foods. Talk to your doctor about making changes to your diet or taking medication. Managing side effects 35

38 Making treatment decisions Sometimes it is difficult to decide on the right treatment. You may feel that everything is happening so fast that you don t have time to think things through, but there is usually time to consider what sort of treatment you want. Waiting for test results and for treatment to begin can be difficult. While some people feel overwhelmed with information, others want as much information as they can find. Understanding enough about your illness, the treatment and side effects will help you to make your own decisions. If you are offered a choice of treatments, you will need to: Weigh the advantages and disadvantages of each treatment. Consider how important each side effect is to you, particularly those that affect your lifestyle. If you have a partner, you may want to discuss the treatment options with them. You can also talk to friends and family. If only one type of treatment is recommended, ask your doctor to explain why other treatment choices have not been offered. You have the right to accept or refuse any treatment. Some people with more advanced cancer will choose treatment, even if it only offers a small chance of cure. Others want to make sure the benefits of treatment outweigh any side effects so they have the best quality of life. Some people may choose options that don t try to treat the cancer but make them feel as well as possible. 36 Cancer Council NSW

39 Talking with doctors When your doctor first tells you that you have cancer, it is very stressful and you may not remember much. You may want to see the doctor a few times before deciding on treatment. If your doctor uses medical terms you don t understand, it s okay to ask for a simpler explanation. You can also check a word s meaning in the glossary. Before you see the doctor, it may help to write down your questions see the list of suggested questions on page 49. Taking notes or recording the discussion can also help. Many people like to have a family member or friend go with them to take part in the discussion, take notes or simply listen. A second opinion Getting a second opinion from another specialist may be a valuable part of your decision-making process. It can confirm or clarify your doctor s recommendations and reassure you that you have explored all of your options. You can get a second opinion even if you have already started treatment or still want to be treated by your first doctor. Your doctor can refer you to another specialist and send your initial results to that person. You may feel awkward asking your doctor for a second opinion, but specialists are used to patients doing this. You have the right to be treated by the doctor you prefer. Making treatment decisions 37

40 Taking part in a clinical trial Your doctor may suggest you consider taking part in a clinical trial. Doctors conduct clinical trials to test new or modified treatments and see if they are better than current treatments. If you are unsure about joining the trial, ask for a second opinion from an independent specialist. If you decide to join a randomised clinical trial, you will be given either the best existing treatment or a promising new treatment. You will be chosen at random to receive one treatment or the other. Being in a trial gives you important rights. You have the right to withdraw at any time; doing so will not jeopardise your treatment for cancer. It is always your decision to take part in a clinical trial. If you don t want to take part in the trial, your doctor will provide the best current treatment choices for you. For more information about clinical trials such as questions to ask your doctor and how to find a trial that may be suitable for you call the Helpline for a free copy of Understanding Clinical Trials. 38 Cancer Council NSW

41 Looking after yourself Cancer can cause physical and emotional strain. Eating nutritious food, exercising and relaxing may help reduce stress and enhance well-being. Addressing changes in your emotions and challenges in your relationships is also important. Healthy eating Eating nutritious food will help you to keep as well as possible and cope with the cancer and treatment side effects. Depending on your treatment, you may have special dietary needs. A dietitian can help to plan the best foods for your situation ones that you find tempting, easy to eat and nutritious. Cancer Council Helpline can send you nutrition information. Call for a free copy of Food and Cancer. Being active You will probably find it helpful to stay active and to exercise regularly if you can. Physical activity even if gentle or for a short duration helps to improve circulation, reduce tiredness, decrease joint and muscle pain, and elevate mood. The amount and type of exercise you do will depend on what you are used to, how well you feel and what your doctor advises. Start by making small changes to your daily activities, such as walking to the shops. If you want to do more vigorous or weight-bearing exercise, ask your doctor what is best for you. Looking after yourself 39

42 Complementary therapies Complementary therapies may help you cope better with side effects such as pain. They may also increase your sense of control over what is happening to you, decrease your stress and anxiety, and improve your mood. There are many types of complementary therapies, including acupuncture, massage, hypnotherapy, relaxation, meditation, yoga, herbal medicine and nutrition. While some cancer treatment centres offer complementary therapies as part of their services, you may have to go to a private practitioner. Ask what s available at your hospital. There are also many self-help CDs and DVDs that will guide you through the different techniques. Let your doctor know about any complementary therapies you are using or thinking about trying. This is important, as some therapies may not be appropriate, depending on your conventional treatment. For example, some herbs and nutritional supplements may interact with your medication, resulting in harmful side effects. Massage and exercise therapies may also need to be modified for your body. For more information you might like to read the Cancer Council s booklet on complementary therapies. 40 Cancer Council NSW

43 Life after treatment Many people are surprised to discover that life after treatment presents its own challenges. During treatment, you may have been busy with appointments and focused on treatment, but afterwards you may feel anxious rather than secure. You might worry about every ache and pain and wonder if the cancer is coming back. Regular checkups and talking to your doctor about what to expect if the cancer comes back may reassure you. Some people feel pressure from their family and friends to get back to their normal life. Everyone will eventually re-establish a daily routine, but it will be at their own pace and may be different to how things were in the past. Some people call this a new normal. Give yourself time to adjust to physical and emotional changes. You may not be fit enough to do your usual activities around the house. If you re returning to work, ease back into it slowly, rather than rushing back the week after leaving hospital. Some people say that after cancer they have changed priorities and see life with a new clarity. For example, you may decide to travel, spend more time with family, start a new hobby, travel or get involved in advocacy or volunteer work. Talking to someone who has had cervical cancer may help you deal with the uncertainties or challenges you encounter. The Cancer Council s Living Well After Cancer Program may also be useful. Call for more information. Looking after yourself 41