Understanding Cancer of the Uterus. A guide for women with cancer, their families and friends.

Transcription

1 Understanding Cancer of the Uterus A guide for women with cancer, their families and friends.

2 Understanding Cancer of the Uterus A guide for women with cancer, their families and friends. First published January 2005 Revised April 2008 The Cancer Council New South Wales 2008 ISBN Understanding Cancer of the Uterus 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: Dr Greg Robertson, Gynaecological Oncologist, Royal Hospital for Women and St George Hospital; Kathryn Nattress, Clinical Nurse Consultant, Gynaecological Oncology, Sydney Cancer Centre. The Cancer Council NSW wishes to acknowledge The Cancer Council Victoria for kindly permitting its booklet on cancer of the uterus to be adapted for the 2005 edition of this booklet. Editor: Laura Wuellner Cartoonist: Greg Smith The Cancer Council New South Wales The 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 the Cancer Council s website at or phone Before commencing any health treatment, always consult your doctor. This booklet is intended as a general introduction to the topic and should not be seen as a substitute for your own doctor s or health professional s advice. All care is taken to ensure that the information contained here is accurate at the time of publication. The 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 cancer of the uterus. Cancer of the uterus is also called uterine cancer, cancer of the womb, cancer of the lining of the womb and endometrial cancer. Throughout this booklet, we will use cancer of the uterus and uterine cancer. Many women feel understandably shocked and upset when told they have cancer of the uterus. We hope this booklet will help you understand how uterine 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, tell them about the Cancer Council Helpline which is available in different languages (see page 50). Introduction 1

4 Contents What is cancer?... 4 The uterus... 6 Uterine cancer your questions answered... 8 What is uterine cancer?... 8 Causes of uterine cancer... 9 What are the symptoms? How common is it? Diagnosis Physical examination Transvaginal ultrasound Hysteroscopy and biopsy X-rays CT, MRI and PET scans Blood tests Stages of uterine cancer Prognosis Treatment Surgery Radiotherapy Hormone treatment Chemotherapy Palliative treatment Which health professionals will I see? Managing side effects...29 Tiredness Menopause Infertility Bladder problems Bowel problems The Cancer Council New South Wales

5 Making treatment decisions Decision-making steps Talking with doctors Talking with others A second opinion Taking part in a clinical trial Looking after yourself Healthy eating Being active Complementary therapies Life after treatment Will the cancer come back? Strengthening your relationships Changing body image Sexuality, intimacy and cancer Seeking support Practical and financial help Understanding Cancer program Talk to someone who s been there The Cancer Council Helpline Caring for someone with cancer Further resources 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 body s cells, which are the body s basic building blocks. Our bodies constantly make new cells: to help us to 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 develop in to 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. The Cancer Council Victoria 4 The Cancer Council New South Wales

7 How cancer spreads Primary cancer Local invasion Angiogenesis tumours grow their own blood vessels Lymph vessel Boundary The 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. When it first develops, this malignant tumour may not have invaded nearby tissue. This is known as a cancer in-situ (or carcinoma in-situ). As the tumour grows, it invades surrounding tissue becoming invasive cancer. An invasive cancer that has not spread to other parts of the body is called primary cancer. Sometimes cells move away from the original (primary) cancer and invade 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. What is cancer? 5

8 The uterus The uterus, or womb, is the main female reproductive organ. In women who are able to have children, the main function of the uterus is to nourish a developing foetus. The uterus is about the size and shape of a hollow, upsidedown pear. The bulk of the uterus is smooth muscle tissue, which is called the myometrium. The uterus sits low in the abdomen between the bladder and rectum and is held there lightly by muscle. It is joined to the vagina by the cervix, which is the neck of the uterus. When women ovulate, or produce eggs in their ovaries, an egg travels through their Fallopian tube into the uterus. If the egg is fertilised by a sperm, it will implant itself into the lining of the uterus and grow into a baby. Position of the uterus and female reproductive system in the body 6 The Cancer Council New South Wales

9 The lining of the uterus is called the endometrium. The endometrium is made up of several layers, including skin-like cells (surface epithelium), blood vessels, tissue spaces and glands. If a woman is ovulating, the endometrium will grow thicker each month to prepare for pregnancy. If the egg is not fertilised, the top layers of the endometrium are shed and flow out of the body through the vagina during menstruation. This is known as a woman s period. Menopause occurs when a woman no longer releases the hormones that cause ovulation and menstruation. A menopausal woman s monthly periods stop, and she is no longer able to become pregnant. The uterus becomes smaller and the endometrium becomes thinner and inactive. The female reproductive system Fallopian tube Uterus Endometrium Egg Ovary Cervix Myometrium Vagina Labia The uterus 7

10 Uterine cancer your questions answered What is uterine cancer? Cancer of the uterus is the most common gynaecological cancer. There are several types of uterine cancer. Endometrial cancers The vast majority (about three-quarters) of cancers of the uterus are endometrial cancers, which affect the lining of the uterus (endometrium). These endometrial cancers are called adenocarcinomas. The other types of endometrial cancers include adenosquamous carcinoma, serous carcinoma and clear cell carcinoma. These types of cancer grow more rapidly and are typically more aggressive than adenocarcinoma. Uterine sarcomas Uterine sarcomas affect the smooth muscle of the uterus (myometrium) or the connective tissue supporting the endometrium, which is called the stroma. The three types of uterine sarcomas are endometrial stromal sarcoma, mixed Müllerian sarcoma and leiomyosarcoma. Uterine sarcomas are rare, and they are more likely to spread rapidly to other parts of the body. 8 The Cancer Council New South Wales

11 Causes of uterine cancer The exact cause of cancer of the uterus is unknown, but some factors seem to increase a woman s risk: age uterine cancer is more common in women aged over 50 being menopausal cancer of the uterus is most common in postmenopausal women endometrial hyperplasia, a condition that occurs when the endometrium grows too thick never having children or being infertile early menarche, or first menstrual period high blood pressure (hypertension) and diabetes obesity a family history of ovarian, endometrial, breast or bowel cancer previous pelvic radiation for cancer ovarian tumours or polycystic ovary syndrome taking oestrogen hormone replacement without progesterone taking the drug tamoxifen for the treatment of breast cancer. If you are taking tamoxifen, you should discuss this risk with your doctor. Uterine cancer is not caused by sexual activity and cannot be passed on this way. It is important to note that many women who have known risk factors don t get cancer of the uterus, and some women who do get cancer of the uterus have none of these risk factors. Uterine cancer your questions answered 9

12 What are the symptoms? The most common symptom of cancer of the uterus is abnormal vaginal discharge, particularly if it occurs after menopause. The discharge can appear watery or bloody, and may be smelly. Abnormal bleeding or discharge can happen before or after menopause, and it is usually not due to cancer of the uterus. However, all women with unusual bleeding or discharge should see their GP. Other symptoms can include discomfort or pain in the abdomen, difficult or painful urination and pain during sex. Your GP will examine you and refer you for tests to see if you have cancer. To learn more about some types of diagnostic tests, see the Diagnosis section on the following page. How common is it? Approximately 580 women in NSW are diagnosed with uterine cancer each year, according to the latest figures (2005). Cancer of the uterus accounts for 3.9% of all cancers in females, but it is most common in women who are over 50 years of age. 10 The Cancer Council New South Wales

13 Diagnosis Your doctor will confirm the diagnosis with a number of tests. You may have some or all of the following tests: Physical examination Your doctor will feel your abdomen to check for swelling. You may also have a vaginal or cervical examination using a medical tool designed to separate the walls of the vagina (called a speculum). This is similar to having a Pap test, where a doctor removes and examines cells from your cervix. Transvaginal ultrasound This test uses sound waves to create a picture of internal organs. A small device called a transducer is put into your vagina. It makes sound waves and receives echoes. A computer creates a picture based on the echoes produced when sound waves meet something dense, such as an organ or tumour. Using the ultrasound, the doctor can look at the size of your ovaries and uterus and the thickness of the endometrium. If anything appears unusual, the doctor will suggest you have a biopsy. Diagnosis 11

14 Hysteroscopy and biopsy You may have a hysteroscopy and biopsy if your doctor suspects that cancer could be present. A hysteroscopy is a procedure that allows your doctor to see inside your uterus by stretching and opening the cervix and inserting a telescope-like device called a hysteroscope. At the end of the procedure, the doctor will remove some tissue to be sent to the laboratory for examination under a microscope. This is called a biopsy. There are different ways of taking tissue samples (biopsies) from the inside of the uterus: Tissue can be snipped out, or a spray of fluid may be used to discharge cells. Tissue can be removed using a suction device. This method is called endometrial aspiration. Sometimes most of the uterine lining is scraped out. This is called a dilation and curettage (D&C). A D&C is the most common and accurate way to remove tissue for a biopsy. These procedures are usually done in a few hours in hospital or at a day procedure clinic. You will probably have a light general anaesthetic. There are risks involved with taking any anaesthetic, so you should ask your doctor about these risks before the procedure. Afterwards, you may have period-like cramps and light bleeding that can last for a few days. 12 The Cancer Council New South Wales

15 X-rays You may have a chest x-ray to check that your lungs and heart are healthy. Sometimes special x-rays using dye or barium are taken to test your kidneys, bladder or bowel. CT, MRI and PET scans Computerised tomography (CT) or magnetic resonance imaging (MRI) scans allow doctors to see pictures of the organs and other structures (including tumours) in your body. They are usually done at a hospital or radiology clinic. For a CT scan, you will be asked not to eat or drink anything before the scan, except for a liquid dye. The dye makes your organs appear white on the scans, so anything unusual will show more clearly. You will be asked to lie on a table while the scanner, which is large and round like a doughnut, moves around you. An MRI 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. Diagnosis 13

16 Like a CT scan, an MRI scan is painless. However, some people find that lying in the MRI scan cylinder is noisy and claustrophobic. You can usually take someone in to the room with you for company. If you feel People who are allergic to iodine may also be allergic to the dye used in a CT or MRI scan. If you think you are allergic, tell your doctor before the scan. uncomfortable, let your doctor or nurse know. They can give you medication to make you feel more relaxed. You might also have a positron emission tomography (PET) scan. In this test, you will be injected with glucose solution containing a small amount of radioactive material. The PET scan detects increased quantities of radioactive glucose in areas of the body where there are cancer cells, because cancer cells can not eliminate this glucose in the way that normal cells do. These scans usually take less than a few hours, and most people are able to go home as soon as their scan is over. Blood tests You may also have blood tests to assess your general health. The test results may help you to make treatment decisions. 14 The Cancer Council New South Wales

17 Stages of uterine cancer The tests described from pages 11 to 14 will show whether you have cancer. They can also show if the cancer has spread to other parts of the body. This helps your doctors stage the disease so they can determine the best treatment for you. The staging system used for cancer of the uterus is the FIGO system, developed by the International Federation for Gynecology and Obstetrics. Stage 1: The cancer is confined to the uterus. Stage 2: The cancer has spread to the cervix. Stage 3: The cancer has spread beyond the uterus/cervix to the ovaries, Fallopian tubes, vagina or nearby lymph nodes. Stage 4: The cancer has spread further, to the inside of the bladder or rectum, throughout the abdomen or to other body parts. Prognosis Prognosis means the expected outcome of a disease. 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 15

18 Treatment Your doctor will advise you on the best treatment for your 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. The main treatment of uterine cancer is surgery because this type of cancer is often diagnosed before it has spread. This means that many women will not need treatment other than surgery. If the cancer has spread beyond the uterus, radiotherapy, hormone treatment or chemotherapy may also be used. Surgery Hysterectomy and bilateral salpingo oophorectomy Cancer of the uterus is usually treated by removing the uterus and cervix. The operation is called a total hysterectomy. In most cases, a woman will also have a bilateral salpingo oophorectomy, which means her Fallopian tubes and ovaries are also removed. Women s ovaries are removed during surgery because the cancer may have spread, or because ovaries produce oestrogen, a hormone which may cause cancer to grow. Depending on the size and type of cancer you have, the surgeon may also remove some other parts of your body. For example, sometimes a small part of the upper vagina and ligaments supporting the cervix are If you are premenopausal and feel concerned about how surgery will affect your fertility, see page 32 for some more information. removed if the cancer has spread to this area. The lymph glands in your pelvis may also be removed. Your gynaecological oncologist will discuss this with you before the operation. 16 The Cancer Council New South Wales

19 If the doctor has not confirmed the type of cancer you have or how far it has spread, these operations may help to determine this. A hysterectomy also gives your surgeon an opportunity to examine the other organs in your abdomen for signs that the cancer has spread (metastasised). In a hysterectomy or bilateral salpingo oophorectomy, a cut is usually made from the pubic area to the belly button. Occasionally a cut is made along the pubic line. Once the abdomen is open, the surgeon washes out the area with fluid. This fluid will be sent to a pathologist, who will check it for cancer cells. If appropriate, the operation may be performed as a laparoscopic procedure (keyhole surgery). This means that the surgeon makes a small cut in the abdomen and uses a thin telescope to see inside the abdomen. The uterus (and any other organs) are cut away and removed through the vagina. Removing lymph nodes If the cancer has spread into the muscular wall of the uterus, this increases its risk of spreading to the abdominal lymph nodes. You and your doctor may decide to remove some lymph nodes in your pelvic region. Removal of lymph nodes is called a lymphadenectomy. Your surgeon may use extremely small titanium clips to seal the lymph vessels when the nodes are removed. These should not have long-term effects on your body. If you have cancer in your lymph nodes, your doctor may advise you to have additional therapy. Treatment 17

20 After the operation When you wake up from a hysterectomy, you will have several tubes in place. An intravenous drip will administer fluid as well as medication. There may also be one or two tubes in your abdomen to drain away fluid from the operation site and a catheter in your bladder to drain away urine. These tubes will usually be removed about three to five days after the operation. As with all major operations, you will have some pain or discomfort. It is best to let your doctor or nurse know when you are feeling uncomfortable don t wait until the pain becomes severe. You will be administered pain relief medication through an intravenous drip, and you may be able to use a patientcontrolled analgesia (PCA) system. A PCA system allows you to choose when you receive a dose of medication. Some people receive an epidural to relieve pain. An epidural is a form of regional anaesthesia involving injection of drugs into the spine. A few days after the operation, your doctor will have all the test results and will discuss further treatment with you. Further treatment will depend on the type of cancer, the stage of the disease and the amount of any remaining cancer. If the cancer is only on the surface of the uterus or is at a very early stage, you may not require any further treatment. It can help to schedule a consultation with your doctor and take a close friend or relative to this appointment. This person can provide you support and ensure you understand the information you are given. 18 The Cancer Council New South Wales

21 Side effects A hysterectomy is a major surgical procedure, and you may be in hospital for up to seven days. Your recovery time will depend on different factors, such as how much tissue was removed and the stage of your cancer. After surgery, 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 have had a bilateral salpingo oophorectomy and were not menopausal before the surgery, the removal of your ovaries will cause menopause. For more details about menopause and ways to manage symptoms, see pages 30 to 32. If you have had lymph nodes removed (lymphadenectomy), parts of your body may swell because your lymphatic system is not working properly. This is called lymphoedema. Lymphoedema symptoms may not appear for over two years after surgery. Swelling in your limbs 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 call the Cancer Council Helpline on 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 page 46. Treatment 19

22 Taking care of yourself at home A hysterectomy is a major operation. It will take time to get back to your normal activities. Rest: Recovery time varies from woman to woman. Most women feel better within six weeks but recovery may take longer for women who have had extensive surgery. You should take things easy and only do what is comfortable. When your health care team advises you to start exercising, you can start by walking. Start with a short walk and try to go a little further each day. Lifting: Heavy lifting should be avoided for about three months. If you have a partner or children, ask them to help around the house. If you require some home nursing care, ask hospital staff how to get in touch with local services. Driving: Avoid driving for about four weeks after the operation. Sex: Penetrative sexual intercourse should be avoided for about six weeks after the operation to give your wound time to heal. Check with your doctor about when you can resume sexual intercourse. 20 The Cancer Council New South Wales

23 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 may be recommended if you are not well enough for a major operation. It is also commonly used as an additional therapy, which is called adjuvant therapy. There are two ways radiotherapy is administered: From outside the body (external). A machine directs radiation at the cancer and surrounding tissue. From inside the body (internal). Radioactive material is put in thin tubes and inserted into your body on or near the cancer. Since internal and external radiotherapy have slightly different purposes, it is possible to have both types of treatment. Treatment 21

24 Internal radiotherapy (brachytherapy) Internal radiotherapy, also called brachytherapy, is a type of radiotherapy where the radiation source is placed close to the cancer. If you need to have radiotherapy for cancer of the uterus, you will probably have brachytherapy. You may also have brachytherapy after a hysterectomy. Your gynaecological oncologist and radiation oncologist will advise the best form of treatment, based on your medical history and prognosis. A radioactive implant will be inserted through the vagina or the tissues around the vagina using special applicators. Internal radiotherapy can be done in two ways: either continuously for up to 30 hours as a low-dose rate treatment or, more commonly, as high-dose rate treatment given in several short sessions. Low-dose rate treatment: If you are having low-dose rate treatment, you will go to hospital to have an implant put in. You will usually not be anaesthetised if your doctor is able to slide the implant, which is shaped like a cylinder, into your vagina. However, some women who receive cervical brachytherapy may require a general anaesthetic when the implant is inserted. Because the implant is radioactive, you will need to stay in a room on your own while the implant is in place. You may not be allowed to have visitors during this time. Your radiation oncologist and the nursing staff will explain the precautions associated with low-dose rate brachytherapy, which vary from hospital to hospital depending on the equipment used. These safety measures 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. 22 The Cancer Council New South Wales

25 High-dose rate treatment: You may not need to stay in hospital for high-dose rate brachytherapy, but you will have four to eight outpatient treatment sessions. Each brachytherapy session may last only five to 10 minutes. Your choice of treatment may depend on your location. For example, high-dose rate brachytherapy may require several treatment appointments, which can be difficult for a woman living in a rural area. External radiotherapy In external radiotherapy, x-rays from a large machine are directed at the part of the body needing treatment. For cancer of the uterus, the lower abdominal area and pelvis are treated, but if the cancer has spread (metastasised), this can be extended to include other areas. You will probably have radiotherapy treatment from Monday to Friday for four to six weeks. You can usually receive this treatment as an outpatient (at a radiotherapy centre) and you will not need to stay in hospital. The actual treatment only takes a few minutes each time, but it can take several hours to undergo a simulator session (work out where the treatment needs to be given), set up the machine, see the doctor and have any other necessary tests, such as blood tests. Treatment 23

26 Side effects Radiotherapy can cause short- and long-term side effects. The most common effects occur during or soon after treatment. These side effects happen because radiotherapy can damage healthy cells in addition to cancer cells. For more information, see the Cancer Council s publication, Understanding Radiotherapy. For a free copy call You may experience some of the following side effects: Lethargy and loss of appetite: The radiotherapy will make you feel tired and you may lose your appetite. See the Cancer Council s booklet, Food and Cancer to learn ways to boost your appetite. Diarrhoea: Radiotherapy may irritate the bowel and cause diarrhoea. This occurs when your stools are loose and watery and you have frequent bowel movements. For some ways to reduce diarrhoea, see page 33 and consult your doctor. Hair loss: Radiotherapy can cause hair loss in the area being treated, and this may be permanent. Menopause: Radiotherapy to the pelvic region may cause menopause. See pages 30 to 32 for more information. Shortening and narrowing of the vagina: Radiotherapy to the pelvic area can affect the vagina, which will become tender during the course of radiotherapy and for a few weeks after it ends. In the long term this irritation can make the vagina drier and can leave scarring that makes the vagina shorter, narrower and less flexible. This may make sex uncomfortable or difficult. For some strategies on keeping your vagina open and supple, see the Sexuality, intimacy and cancer section on page 46. Cystitis: Radiotherapy to the pelvic area can also cause a burning sensation when passing urine (cystitis). These side effects can be mild or troublesome depending on the strength of the radiotherapy dose and the length of your treatment. 24 The Cancer Council New South Wales

27 When you re having radiotherapy, you should allow yourself plenty of time to rest. You should also try to drink lots of water and have small, frequent meals. Ask your doctor or nurse about ways to manage side effects. I had diarrhoea for a few weeks but it improved with medication. I lost most of my pubic hair and it hasn t grown back much. Not that it matters, it s never on show. Hormone treatment Some cancers of the uterus depend on hormones (such as oestrogen) for growth. Hormone treatments that may be used as treatment for uterine cancer include: provera, which blocks the body s use of oestrogen, and is a form of the female hormone progesterone tamoxifen, which is an anti-oestrogen drug. Hormone treatment, which is taken orally, can work well for advanced or recurrent cancer of the uterus. Side effects Side effects of provera include breast tenderness, nausea and fluid retention. In high doses, it may increase appetite and cause weight gain. Tamoxifen can cause hot flushes, headaches and fluid retention. You may have some or none of these side effects. Discuss any problems or concerns with your doctors. Treatment 25

28 Chemotherapy Chemotherapy uses drugs to kill or slow the growth of cancer cells. The aim is to destroy cancer cells while causing the least possible damage to healthy cells. Chemotherapy may be used: for certain types of uterine cancer, such as serous carcinoma when cancer returns after surgery or radiotherapy, to gain control of the cancer and to relieve symptoms if the cancer does not respond to hormone treatment for women whose cancer has spread beyond the uterus at the time of diagnosis, such that surgery is not possible. Chemotherapy is usually given through a needle inserted into a vein (intravenously), by specialised nurses and under the guidance of an oncologist. You may need to stay in the hospital overnight or you may be treated as an outpatient. You may have a number of treatments, sometimes up to six, every three to four weeks over several months. The length of treatment will be determined based on your circumstances. Side effects The side effects of chemotherapy vary according to the drugs used. Side effects may include feeling sick, vomiting, feeling tired, and some thinning and loss of your body and head hair. Most side effects are temporary and steps can often be taken to prevent or reduce them. Talk to your health care team for more information. For more information about the side effects of chemotherapy, call the Cancer Council Helpline on for a free copy of Understanding Chemotherapy. 26 The Cancer Council New South Wales

29 Palliative treatment Palliative treatment is particularly important for people with advanced cancer. It 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 or Living with Advanced Cancer, or view them online at Treatment 27

30 Which health professionals will I see? Your GP (general practitioner) 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 your 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 medical oncologist: responsible for chemotherapy radiation oncologist: responsible for radiotherapy nurses and cancer nurse coordinators: coordinate your care and support you through all stages of your treatment dietitian: recommends the best diets 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 workers, physiotherapists and occupational therapists: advise you on support services and help you to resume normal activities. 28 The Cancer Council New South Wales

31 Managing side effects It will take some time to recover from your treatment. You will find that there are physical and emotional changes, and it is important that you and the people around you (such as your partner, employer and family members) are prepared. 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. The sections in this chapter provide 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. For information on side effects of surgery, see page 19. Tiredness Many women find that tiredness is a major challenge after treatment. Your tiredness may continue for quite some time after treatment has finished. Some women find it takes them up to two years to feel well again. Feeling tired is not only a side effect of the treatments themselves. Travelling to hospitals and clinics for treatment and appointments can be exhausting. If you work during your treatment or if you have a home and a family to care for, you will almost certainly feel very tired. 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. Managing side effects 29

32 Menopause The ovaries produce the hormones oestrogen and progesterone. If you ve had a hysterectomy and both ovaries have been removed or if you ve had radiotherapy in the pelvic area, 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. You can manage menopausal symptoms in several ways: Hormone replacement therapy (HRT) can help reduce your symptoms. Using HRT for more than five years increases the risk of some diseases including breast cancer, but it also decreases the risk of other diseases. You will need to talk to your gynaecological oncologist about the benefits and risks of HRT. If you were already on HRT when your cancer was diagnosed, you will need to weigh up the risks of continuing it. Because cancer of the uterus can be hormonesensitive, HRT may not be suitable for some women. Talk to your doctor about what treatment is right for you. 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. There are a number of dietary, herbal and alternative approaches to managing menopausal symptoms. Talk to your doctor or health care team for more information. No matter what you decide to do, you should advise your doctors about how you are managing your symptoms. 30 The Cancer Council New South Wales

33 Osteoporosis Menopause may also cause bones to weaken and break more easily. This is called osteoporosis. You may be able to prevent osteoporosis by getting your daily recommended amounts of calcium and vitamin D, engaging in regular weight-bearing exercise and avoiding smoking and excessive alcohol. Talk to your healthcare provider about osteoporosis. You may have a bone density test or be prescribed medication to prevent your bones from becoming weak and brittle. You can also contact Osteoporosis Australia at or (02) Cardiovascular effects After menopause, changes in your cholesterol balance increase your risk of hardening and blockage of the arteries. If you smoke, quitting is probably the most important thing you can do to either prevent heart disease or to prevent further problems if you already have heart disease. There are many other positive lifestyle changes you can make at menopause that will reduce your risk of heart disease and stroke. You can try to maintain a healthy weight by eating a balanced diet with lower fat levels, exercising regularly and reducing your stress levels. If necessary, your doctor may prescribe medications to reduce your risk, such as cholesterollowering drugs. Managing side effects 31

34 Infertility Surgery or radiotherapy for cancer of the uterus will prevent you from being able to bear 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. The most common emotion that women experience when they learn that their reproductive organs will be removed or will no longer function is a sense of loss. 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 many mixed emotions. These reactions are natural. As well as talking to your partner, speaking to a counsellor or a gynaecology oncology nurse about your feelings and individual situation can be very beneficial. My number one priority was to talk to another woman who had been through the same experience. The power of sharing my story with another woman was incredibly healing. 32 The Cancer Council New South Wales

35 Bladder problems Bladder sensations or control may change after treatment. 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), contact the continence nurse or physiotherapist at your hospital. You can also contact the Continence Foundation of Australia on or Bowel problems After surgery and radiotherapy, some women have changed bowel habits. You may experience constipation or diarrhoea, or feel pain in your lower abdomen. 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. You may be able to make simple changes in your lifestyle to decrease bowel problems. For example, sucking strong peppermints or drinking peppermint tea can reduce pain in your abdomen. You can also talk to your doctor about making changes to your diet or taking medication. If you have diarrhoea, you should drink plenty of water to replace fluid lost and prevent dehydration. You can also work with a dietitian to adopt a high fibre diet, which is designed to reduce the number and volume of bowel movements. Managing side effects 33

36 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 for you 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 feel they don t have enough. You need to make sure you understand enough about your illness, the treatment and side effects 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. If only one type of treatment is recommended, ask your doctor to explain why other choices have not been offered. 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. Still others will choose the treatment they believe offers them the best quality of life. Some people may choose not to have treatment to eradicate cancer, but instead will choose to have symptoms managed to optimise their physical and emotional well-being. You always have the right to find out what a suggested treatment means for you, and the right to accept or refuse it. 34 The Cancer Council New South Wales

37 Decision-making steps 1. Take the time to consider all treatment options. 2. Weigh up the advantages and disadvantages of each treatment. 3. Consider how important each side effect is to you particularly those that affect your lifestyle. If you have a partner, discuss the side effects with them. 4. If only one type of treatment is recommended, ask your doctor if other treatment choices are available. 5. Find out more about the treatment choices offered to you speak to your doctor, consider getting a second opinion, look at the recommended Internet sites on page 52, talk to your family and friends and to other people who have received these treatments. 6. If you are not happy with the information you are given or how it is given tell the doctor about your concerns, or seek a second opinion. Making treatment decisions 35

38 Talking with doctors When your doctor first tells you that you have cancer, it is very stressful and you may not remember very much. It is often difficult to take everything in, so you may want to see the doctor a few times before deciding on treatment. Your doctor may use medical terms you don t understand; it s okay to ask your doctor to explain something again. You can also check a word s meaning in the glossary at the end of this booklet. Before you see the doctor, it may help to write down your questions see the list of suggested questions on page 55. Taking notes during the session 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. 36 The Cancer Council New South Wales

39 Talking with others Once you have discussed treatment options with your doctor, you may want to talk them over with family or friends, nursing staff, the hospital social worker or chaplain, your own religious or spiritual adviser, a cancer support group or the Cancer Council Helpline on Talking it over can help sort out the right course of action for you. A second opinion You may want to get a second opinion from another specialist. Some people feel uncomfortable asking their doctor for a second opinion, but specialists are used to patients doing this. A second opinion can be a valuable part of your decisionmaking process. It can confirm or clarify your doctor s recommended treatment plan and reassure you that you have explored all of your options. A second specialist can also answer any questions you may still have. Your original specialist or family doctor can refer you to another specialist and you can ask for your initial results to be sent to the second-opinion doctor. You may later decide you would prefer to be treated by the doctor who provided the second opinion, and this is your right. You can ask for a second opinion even if you have already started treatment or still want to be treated by your first doctor. 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. Before deciding whether or not to join the trial, you may wish to ask your doctor: What treatments are being tested and why? What tests are involved? What are the possible risks or side effects? How long will the trial last? Will I need to go into hospital for treatment? What will I do if problems occur while I am in the trial? Has an independent ethics committee approved the trial? 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. For more information about clinical trials and how to find a trial that may be suitable for you call the Helpline for a free copy of Understanding Clinical Trials. 38 The Cancer Council New South Wales

41 Looking after yourself When you find out you have cancer and while you are undergoing treatment, your body is put through a great deal of physical and emotional strain. It is crucial that you take steps to enhance your well-being at this time to help you adapt to the stress that you are facing. Nurturing your body and mind by eating nourishing food, doing some enjoyable physical activity, and taking some time out to relax can help you to feel more balanced and improve your vitality. Healthy eating Eating nutritious food will help you 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. The Cancer Council Helpline can send you information on nutrition during and after cancer treatment. Call the Helpline for free copies of Food and Cancer and After Your Cancer Treatment: a guide for eating well and being active. Looking after yourself 39

42 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 or 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. Even gardening can be beneficial. If you want to do more vigorous exercise, ask your doctor what is best for you. Relaxation techniques Some people find relaxation or meditation helps them feel better by releasing tension and anxiety. Often, relaxation exercises can also help reduce pain and increase energy levels. The hospital social worker or nurse will know whether the hospital or a community health centre runs any programs. You may also enjoy exploring relaxation techniques in the comfort of your own home using audiovisual material such as CDs or DVDs. Contact your local library or the Cancer Council Library to access these resources. 40 The Cancer Council New South Wales

43 Complementary therapies Complementary therapies may help you enhance your general well-being and 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, 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, and be sure to let your doctor know about any complementary therapies you are using. Call the Helpline for a copy of the Cancer Council s latest publication on complementary and alternative therapies. Looking after yourself 41

44 Life after treatment Many people find it helps to give themselves time to recover from treatment. You will find you must cope with both physical and emotional changes. You need time to get your strength back. If you re responsible for the house, you ll need some help for a while. If you work, you ll need to ease back into it slowly, rather than rushing back the week after leaving hospital. You might have to remind your family and friends that for a while you won t be fit enough to do all your usual activities. After treatment is over it is common for people to feel anxious rather than more secure. While you were having treatment, you were busy with appointments and now you are facing life again with an uncertain future. Adjusting to life after cancer can be difficult if people around you expect your life to return to the way it was before you were diagnosed. Everyone will eventually re-establish their daily routine, but it will be at their own pace. It may take some time to balance the need for regular checkups with resuming day-to-day activities and making plans for the future. Talking to someone who has had cancer of the uterus can help you deal with this uncertainty. For more information see page The Cancer Council New South Wales