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UNDERSTANDING CANCER Cancer of the Uterus Matepukupuku o te Kp A guide for people A guide for women with a dry mouth uterus cancer of the Copyright (c) 2012 Cancer Society of New Zealand Inc. PO Box 12700 Wellington 6011. First edition 2012 ISBN 0-908933-93-2 Other titles from the Cancer Society of New Zealand Te Khui Matepukupuku o Aotearoa Advanced Cancer Matepukupuku Maukaha Bowel Cancer Matepukupuku Puku Hamuti Bowel Cancer and Bowel Function Practical advice Breast Cancer Te Matepukupuku o nga- Breast Cancer in Men From one man to another Cancer Clinical Trials Cancer in the Family Talking to your children Chemotherapy Hahau Complementary and Alternative Medicine Eating Well During Cancer Treatment Kia Pai te Kai i te w Maimoatanga Matepukupuku Emotions and Cancer Got Water He Wai Kanesa o le susu Early Breast Cancer (Samoan) Lung Cancer Matepukupuku Pkahukahu Melanoma Tonapuku Prostate Cancer Matepukupuku Repeure Radiation Treatment Haumanu Iraruke Secondary Breast Cancer Matepukupuku Tuarua - Sexuality and Cancer Hkakatanga me te Matepukupuku Understanding Grief Te Mate Pmamae Brochures Being Active When You Have Cancer Being Breast Aware Bowel Cancer Awareness Gynaecological Cancers Questions You May Wish to Ask Talking to a Friend with Cancer Thermography Our key messages and important sections have been translated into te Reo Mori. Our translations have been provided by Hohepa MacDougall of Wharetuna Mori Consultancy Services and have been peer reviewed by his colleagues. Introduction This booklet has been prepared to provide you with information about cancer of the uterus. Cancer of the uterus is also called cancer of the womb uterine cancer endometrial cancer or cancer of the lining of the womb. The lining of the uterus is called the endometrium. Because cancer of the uterus usually starts in this lining the cancer is sometimes called endometrial cancer . In this booklet we will talk about cancer of the uterus or uterine cancer . Many women feel understandably shocked and upset when they are told that they have or may have cancer of the uterus. This booklet aims to help you to understand what cancer of the uterus is and how it is diagnosed and treated. We also include information about support services you may like to use. We cannot tell you which is 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 the questions you want to ask your doctors. If you find this booklet helpful you may like to pass it on to your family and friends who may also find it useful. This booklet does not need to be read from cover to cover but can be read in sections according to your needs or interest. The words in bold are explained in the glossary. 1 Kupu whakataki I whakaritea tnei puka hei hoatu prongo ki a koe e p ana ki te matepukupuku o te kp. Ko tahi atu ingoa m te matepukupuku o te kp ko te matepukupuku o te ewe te matepukupuku -kp matepukupuku endometrial ko te matepukupuku o te whakapaparanga o te ewe rnei. Ko te ingoa o te whakapaparanga o te kp ko te endometrium. I te mea tmata ai te matepukupuku o te kp i te nuinga o te w ki roto i tnei whakapaparanga ka kia he matepukupuku endometrial . I roto i tnei puka ka krero mtou m te matepukupuku o te kp ko te matepukupuku -kp rnei. Tokomaha ng whine ka whtuki ka raru ohorere ki te rangona kua pngia rtou ki te matepukupuku o te kp. Ko te whinga o tnei puka ko te whina kia mrama ai koe he aha te matepukupuku o te kp me ng mahi whakatau me te whakamaimoa i tnei mate. Kua whakaurua hoki he prongo e p ana ki ng ratonga tautoko tr pea ka hiahia koe ki te whakamahi. Kore e taea e mtou te krero m te maimoatanga pai ake mu. Me krero k koe ki rata e p ana ki tnei. Heoi ko te tmanako ka whakautu nei prongo i tahi o u ptai me te whina i a koe ki te whakaaro i tahi atu ptai e hiahia ana koe ki te ptai i rata. 2 Mehemea he mea whina tnei puka i a koe tr pea ka prangi koe ki te hoatu ki t whnau ki hoa rnei mei kore ka whaikiko m rtou. Ehara i te mea me pnuitia te katoa o tnei puka engari ka taea te pnui -whanga e ai ki tu e hiahia ana. Whakamramatia ai ng kupu kua miramiratia i roto i te rrangi kupu. 3 Contents Introduction What is cancer The uterus Cancer of the uterus Causes of cancer of the uterus How common is cancer of the uterus Symptoms Doctors and other health professionals you may see How cancer of the uterus is diagnosed Staging the cancer Treatment Surgery Radiation treatment Hormone treatment Chemotherapy Complementary and alternative medicines Making decisions about treatment Talking with doctors Talking with others Prognosis (outlook) A second opinion Taking part in a clinical trial Coping with side effects Tiredness Tips that will help relieve your tiredness Menopause 4 1 6 9 12 14 14 16 17 19 22 27 29 34 41 43 47 50 51 54 55 55 56 60 60 61 63 Bladder problems Bowel problems Lymphoedema Seeking support Palliative care Cancer support groups Financial assistance Home care Interpreting Services Cancer Society Volunteering Information and Supportive Care Services Wigs (hair loss) What can I do to help myself Diet and food safety Exercise Relaxation techniques Recovery and follow-up care Life after treatment Sexuality and cancer Questions you may wish to ask Glossary Suggested readings and websites Notes Feedback 65 65 66 70 70 72 72 73 73 74 76 79 79 81 83 83 85 86 90 94 100 102 107 5 What is cancer Cancer is a disease of the body s cells. Our bodies are always making new cells so we can grow to replace worn-out cells or to heal damaged cells after an injury. This process is controlled by certain genes. All cancers are caused by changes to these genes. Changes usually happen during our lifetime although a small number of people inherit such a change from a parent. Normally cells grow and multiply in an orderly way. However changed genes can cause them to behave abnormally. They may grow into a lump. These lumps can be benign (not cancerous) or malignant (cancerous). Benign lumps do not spread to other parts of the body. A malignant lump (more commonly called a malignant tumour) is made up of cancer cells. When it first develops this malignant tumour is confined to its original site. If these cells are not treated they may spread into surrounding tissue and to other parts of the body. The beginnings of cancer Normal cells Abnormal cells Abnormal cells multiply (cancer in situ) Malignant or invasive cancer Basement membrane Lymph vessel Blood vessel 6 How cancer spreads Primary cancer Local invasion Lymph vessel Basement membrane Metastasis Cells move away from primary tumour and invade other parts of the body via blood vessels and lymph vessels Blood vessels 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. For a cancer to grow bigger than the head of a pin it must grow its own blood vessels. This is called angiogenesis. 7 He aha te matepukupuku He mate ka p ki ng ptau o te tinana te matepukupuku. E kore e mutu te mahi a te tinana ki te hanga ptau hou kia tipu ai ttou hei whakahou an i ng ptau kua ruha ki te whakaora hoki i ng ptau kua h whai muri i ng wharahanga noa. Whakahaerehia ai tnei mahi e tahi tino ira. Puta ai ng matepukupuku katoa n runga i ng whakarerektanga ka p ki nei ira. Ka p nei whakarerektanga huri noa i te w o t ttou oranga heoi ar tahi tngata torutoru nei ka heke tuku iho nei ira rerek mai i ttahi o rtou mtua. Ko te tikanga ka tipu ka nui haere ng ptau me te pai o te whai htepe. Heoi an tr ka tareka e te ira rerek te whakararu i te mahi a ng ptau. Tr pea ka tipu hei puku. Ko tahi puku he mrire (kore matepukupuku) he marere k rnei (kawe matepukupuku). Kore ng puku mrire e hrapa ki tahi atu whi o te tinana. Ko te kurukuru marere (e mhiotia nei he puku marere) he hanganga ptau matepukupuku k. I tna putanga tuatahi ka noho tnei puku marere ki te whi taketake i puta ai. Ki te kore e maimoatia nei ptau tr pea ka hrapa ki roto i ng kikokiko e karapoti ana ki whi k rnei o te tinana. Ka tae ana nei ptau ki whi hou k tr pea ka tipu tonu ka puta an he puku ki taua whi. Kia ai tnei ko te matepukupuku tuarua ko te metastasis rnei. Ki te tipu nui ake te matepukupuku i te khao o te ngira me whakatipu an ia i na ake ia toto. Ko te ingoa m tnei ko te angiogenesis. 8 The uterus The uterus is part of the female reproductive system. It is also called the womb. The uterus is about the size and shape of an upside-down pear. The uterus sits quite low in the pelvis (below the abdomen behind the pubic bone) and is held there lightly by muscle. The uterus is joined to the vagina by the cervix or neck of the uterus. Each month in women who are able to have children hormones are released in the body that cause ovulation and periods (menstruation). In ovulation an egg travels from one of the ovaries down the fallopian tube. If the egg is fertilised it implants in the lining of the uterus where it grows into a baby. The lining of the uterus is called the endometrium. The endometrium is made up of several layers that include skin-like cells (surface epithelium) blood vessels tissue spaces and glands. Each month the endometrium grows thicker to prepare for pregnancy. If a woman does not become pregnant the top layers of the endometrium are shed and flow out through the vagina in the monthly period. Menopause is when a woman s periods stop and she is no longer able to have a baby. Her body stops releasing the hormones that cause ovulation and periods. 9 Side view of woman Abdominal cavity Fallopian tube Ovary Uterus Bladder Vagina Cervix Rectum Anus Woman s reproductive system Ovary Fallopian tube Uterus (womb) Cervix Endometrium (womb lining) Vagina Vulva 10 Te kp He whanga te kp o te pnaha taihema uwha. Kia ai an ko te ewe. Ko tna hanga he rite ki te rahi me te hua o te pea karo. Noho ai ki raro r an o te papatoiake (ki raro ake i te puku ki muri i te wheua tore pupuritia ai ki kon e ttahi ua. Hono ai te kp ki te tara m te waha whare tangata te kaki o te kp rnei. Ia marama ia mrama m ng whine hei ki te whai tamariki ka rere he taiaki ki roto i te tinana e puta ai te mahi tuku kkano me te mate marama (rerenga awa whine). I te w o te tuku kkano ka puta he hki i ttahi o ng kiato kkano ka heke i te p kkano. Ki te whakat te hki ka kuhu ki roto o te whakapaparanga o te kp ka tipu hei pp. Ko te ingoa o te whakapaparanga o te kp ko te endometrium. Ko te hanga o te endometrium he whakapaparanga maha me tahi ptau rite ki te kiri (surface epithelium) he ia toto he kikokiko wtea he repe hoki. Ia marama ia marama ka tipu mtotoru ake te endometrium hei takat m te haptanga. Ki te kore te whine e hap ka maunu mai ng whakapaparanga o runga i te endometrium ka rere whakawaho m te tra i te w o te mate marama. Ko te koero ko te w ka mutu ng mate marama a te wahine kua kore ia e hei ki te whakawhnau pp. Ka mutu te tuku a te tinana i ng taiaki whakahei ana i te mahi a te tuku kkano me te mate marama. 11 Cancer of the uterus Cancer of the uterus is the most common gynaecological cancer affecting women in New Zealand. Most cancers of the uterus are cancers of the lining of the uterus (the endometrium). Cancers can also develop in the muscle layers of the uterus. Knowing which type of cancer you have is important because it affects the decisions you and your doctor will make about treatment. Adenocarcinoma of the endometrium An adenocarcinoma is a cancer that starts in glandular tissue. Most women who are diagnosed with cancer of the uterus have this type of cancer. Other types of cancer of the uterus The less common types are adenosquamous carcinomas papillary serous carcinomas and rarely clear cell carcinomas or uterine sarcomas. These are called high-risk cancers because they are more likely to spread. 12 Matepukupuku o te kp Ko te matepukupuku o te kp te tino matepukupuku -whine whai pnga ki ng whine o Aotearoa. Ko te nuinga o ng matepukupuku o te kp ko ng matepukupuku o te whakapaparanga o te kp (te endometrium). Ka taea hoki e ng matepukupuku te whanake i roto ng whakapaparanga uaua o te kp. He mea nui te mhio he aha t momo matepukupuku i te mea ka p tnei ki ng whakataunga ka whakatau krua ko t rata e p ana ki t maimoatanga. Te adenocarcinoma o te endometrium He matepukupuku te adenocarcinoma ka tmata i te kikokiko repe. Ko te nuinga o ng whine ka whakatauria kei te pngia ki te matepukupuku o te kp ka whai i tnei momo matepukupuku. tahi atu momo matepukupuku o te kp Ko ng momo matepukupuku kore e tino kitea ana ko ng matepukupuku o te kiri adenosquamous me ng momo matepukupuku o te kiri papillary serous me nei e kore tino kitea ana ng matepukupuku o te kiri clear cell ko te sarcomas -kp rnei te ingoa. Kia ai nei matepukupuku he mrea-kaha i te mea he kaha ki te hrapa haere. 13 Causes of cancer of the uterus The exact cause of cancer of the uterus is not known. Some things seem to put women at more risk being over 50 years of age being very overweight (obese) never having been pregnant endometrial hyperplasia this is a non-cancerous condition where the lining of the womb becomes thicker menopause high blood pressure diabetes a family history of uterus breast or bowel cancer if you think you are at risk you should discuss this with your doctor being on oestrogen hormone replacement therapy without progesterone. Uterine cancer is not caused by sexual activity and cannot be passed on this way. Remember most women who have known risk factors do not get cancer of the uterus. Many women who do get cancer of the uterus have none of these risk factors. How common is cancer of the uterus In New Zealand each year around 400 women are diagnosed with cancer of the uterus. It is more common in women over the age of 50 than younger women. 14 Ng ptake puta ai te matepukupuku o te kp Kore i te tino mhiotia n te aha ka p te matepukupuku o te kp. Anei tahi kaupapa ko te hua nei piki ai te mrea ki ng whine mehemea he pakeke ake ng tau i te 50 he tino taumaha rawa (tino mmona) kre i whai tamariki endometrial hyperplasia he mate kore-matepukupuku tnei e tipu mtotoru ai te whakapaparanga o te ewe. te koero he toto prutu te mate huka mn kei roto i te whakapapa o te whnau ng matepukupuku kp matepukupuku matepukupuku puku hamuti rnei mehemea ka whakaaro koe kei te noho mrea koe me krero ki t rata. mehemea kei runga koe i te oestrogen hormone replacement therapy me te kore progesterone. Kore te matepukupuku -kp e puta n te mahi ai kre hoki e taea te hoatu ki ttahi atu m te ai. Me maumahara kre te nuinga ng whine whai i ng kaupapa mrea e mate i te matepukupuku o te kp. Kre hoki te nuinga o ng whine pngia ki te matepukupuku e whai ana i nei huatanga mrea. 15 Phea te kaha o te pngia o te matepukupuku o te kp Ia tau ia tau e 400 ng whine i Aotearoa ka whakatauria kei te pngia ki te matepukupuku o te kp. Whnui ake te kitea i roto i ng whine e 50 neke atu rnei ng tau e ai ki te kitea i roto i ng whine taitamariki ake. Symptoms The most common symptom is unusual or irregular bleeding or a watery pink or dark bloody discharge from the vagina especially for women who have been through menopause and stopped having periods. Sometimes this discharge can be smelly. Most cancers of the uterus are picked up because of irregular or post-menopausal bleeding. Other less common symptoms can include discomfort or pain in the abdomen difficult or painful urination and pain during sex. Unusual bleeding or discharge can happen before and after menopause. It is usually not due to cancer of the uterus. However all women with unusual bleeding or discharge should see their doctor for a check-up. 16 Tohumate Ko te tohumate kaha kitea noatia ana ko te rere pokapoka o te toto ko te tuku waipara waiwai mwhero toto pango rnei i te tara tae ake ki ng whine kua uru ki te w koero me te mutu o te mate marama. I tahi w he haunga te tukunga i te tra. Kitea ai te nuinga o ng matepukupuku o te kp n runga i te pokapoka noa o te rere o te toto o te rere o te toto i te w koero rnei. Ko tahi atu tohumate iti ake te kitea ko te auhi ko te mamae rnei ka p ki te puku ko te uaua ko te mamae rnei o te mahi mimi me te mamae ka puta i te w ai. Doctors and other health professionals you may see Your doctor will examine you. If your doctor has any concerns they will refer you for tests to see if you have cancer. This can be a worrying and tiring time especially if you need to have several tests. If the tests show you have or may have cancer your doctor will refer you to a gynaecologist who will advise you about treatment options. 17 The treatment team From the time that you are first diagnosed with cancer of the uterus you will be cared for by one or more of a team of health professionals your family doctor will often be the first person you see gynaecologist a doctor who specialises in the female reproductive system gynaecological oncologist a doctor who specialises in cancers of the female reproductive system pathologist a doctor who diagnoses disease by studying cells and tissues under a microscope radiation oncologist a doctor who specialises in the use of radiation in the treatment of cancer medical oncologist a doctor who specialises in the use of drug treatments for cancer endocrinologists a doctor who specialises in hormone treatment radiation therapists who prepare you and give you your radiation treatment clinical nurse specialists who specialise in gynaecology oncology nurses who give chemotherapy and support you through your treatment dietitians who will recommend the most suitable foods to eat social workers counsellors physiotherapists psychologists and occupational therapists who will advise support and treat you. 18 How cancer of the uterus is diagnosed Physical examination Your doctor will feel your abdomen to check for swelling. Your doctor may also look at your vagina and cervix using a speculum (a bit like having a cervical smear). Transvaginal ultrasound In this test sound waves are used to create a picture of internal organs. A small device called a transducer is put into your vagina. Using the ultrasound the doctor can look at the size of your ovaries and uterus and the thickness of the endometrium. If there is anything unusual your doctor will suggest that you have a biopsy. Biopsy In a biopsy a sample of the endometrium is taken to be looked at under a microscope. This is usually done in the doctor s rooms using a small sampling instrumnent called a pipelle. Another method of biopsy is called hysteroscopy. Unuhanga I roto i te mahi unuhanga ka tangohia he tauira endometrium hei tirotiro i raro i te karu whakarahi. Kia ai ttahi atu huarahi unuhanga ko te hysteroscopy. 19 After the shock I thought well I m not going to let a few rogue cells beat me. My family said I was a tough old bird and I would get through. Sue Your doctor will look inside your uterus by stretching the cervix opening and inserting a device called a hysteroscope. There are different ways of taking tissue samples from the inside of the uterus Tissue can be snipped out or a spray of fluid may be used to dislodge cells. Tissue can be removed using a suction device. This method is called endometrial aspiration. Sometimes most of the uterus lining is scraped out. This is called a D&C (dilatation and curettage). Afterwards you may have period-like cramps and light bleeding which can last for a few days. 20 X-rays You may have a chest X-ray. Scans (CT MRI and PET) CT Scan this is a type of X-ray that gives a cross-sectional picture of organs and other structures (including any tumours) in your body. This is the usual way of looking for cancer which has spread outside the uterus. Magnetic Resonance Imaging (MRI) this test uses magnetism to build up pictures of the organs in your abdomen. The MRI machine is a long cylinder (tube) and when scanning is taking place it is noisy. Positron Emission Tomography (PET) you will be given a small amount of low dose radioactive glucose which is picked up by rapidly dividing cells. The position of radioactive glucose can be seen on the scan. The scans take less than an hour. Most people are able to go home as soon as their scan is over. Blood tests You may have blood tests to check your general health and to help with making decisions about your treatment. You may have a CA125 blood test. CA125 is a tumour marker which is a chemical produced by cancer cells which can get into the blood stream. Some women with cancer of the uterus have raised levels of CA125 but not all. 21 Staging the cancer Staging is the process of assessing the extent of a cancer. The staging system used for cancer of the uterus is the FIGO system which was developed by the International Federation of Gynaecology and Obstetrics. Stage 1 Cancer of the uterus Stage 1 cancers are the easiest to treat. The cancer is limited to the uterus. There are two categories of stage 1 uterine cancer 1A means that the cancer may have grown into the muscle wall (myometrium) of the uterus but no more than halfway. 1B means the cancer has grown halfway or more into the muscle wall of the uterus. Stage 1A Stage 1B Myometrium Endometrium Cervix 22 Stage 1B Cervix Stage 2 Cancer of the uterus This means the cancer has spread to the cervix. Stage 2 the tumour has grown into the cervix Cervix 23 Stage 3 Cancer of the uterus This stage means the cancer has spread further. There are three categories of stage 3 uterine cancer 3A means the cancer has grown into the ovaries. 3B means the cancer has spread into the vagina or into the tissues surrounding the uterus (parametrium). 3C means the cancer has spread to nearby lymph glands. Stage 3A the cancer has spread into the ovary Stage 3B the cancer has spread into the vagina Stage 3C the cancer has spread into the lymph nodes 24 spread into the vagina spread into the lymph nodes Stage 4 Cancer of the uterus Stage 4 means the cancer has spread to another body organ. There are two categories of stage 4 cancer of the uterus 4A means the cancer has spread to the bowel and bladder. 4B means the cancer has spread to other organs that are further away such as lungs liver bones or brain. Stage 4B the cancer is in other organs Stage 4A the cancer is in the bladder or bowel Bowel Uterus Bladder 25 Grading of your cancer Cancers can grow quickly or more slowly. Doctors usually give a grade to the cancer depending on how the cells look under the microscope. The appearance of the cells will give the doctor an idea about how quickly or slowly the cancer is likely to grow and the appearance decides the grade of the cancer. The more like normal uterus cells they look the lower the grade of the cancer. You may hear your doctor use the word differentiation. Differentiation means how developed or mature a cell is. So grade 1 (G1) cancer cells are well differentiated and look very like normal cells. Grade 2 cancer cells are moderately differentiated. Grade 3 cancer cells are poorly differentiated and look very abnormal. So the more abnormal the cancer cells look the higher the grade of the cancer (G3 or G4). Generally low grade cancers tend to grow more slowly and are less likely to spread than high grade cancers. Most endometrial uterus cancers are the low grade G1 types. Source Taken from CancerHelp UK the patient information website of Cancer Research UK on 9 May 2012 http cancerhelp.cancerresearchuk.org type womb-cancer treatment stages-of-womb-cancer. See page 10 for the diagram of a woman s reproductive system. You may hear a number plus a letter (for example Stage 1A Stage 3C). These are ways of further staging the disease. Ask your doctor about the stage of your cancer. 26 Treatment Many years of treating cancer patients and testing treatments in clinical trials has helped doctors know what is likely to work for a particular type and stage of cancer. 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 and general health and your wishes. Cancer of the uterus is often diagnosed early before it has spread. This means that many women will only need surgery. The major side effect of the surgery is menopause (if you have not already gone through it). In young women this means you cannot get pregnant. If the cancer has or is at high risk of spreading beyond the uterus radiation treatment hormone treatment or chemotherapy may be used as well as surgery. Your doctors will advise the best form of treatment based on your medical history and diagnosis. Treatment for cancer of the uterus has a high cure rate. 27 Maimoatanga N te maha o ng tau whakamaimoa troro matepukupuku me te whakamtau maimoatanga i ng whakamtau haumanu i whina i ng rata kia mhio he aha te huarahi pai m ng momo matepukupuku me te huarahi pai m te maimoatanga e ai ki te whanga o taua matepukupuku. M t rata koe e tohutohu ki te maimoatanga pai mu. Ka hngai ki ng kitenga kei roto i whakamtau ki te whi e noho ana te matepukupuku mehemea hoki kua hrapa ki whi k ki t pakeke hoki t hauora whnui me u ake hiahia. I te nuinga o te w whakatauria moatatia ai te matepukupuku o te kp i mua i tna hrapatanga. N tnei ko te hparapara anake te huarahi hei whai m te nuinga. Heoi an r ko ttahi pnga nui ka puta i te taha ko te koero (mn r kore an i p). M ng wahine taitamhine tonu ana kore r koutou e hap. Mehemea kua hrapa k te matepukupuku i tua atu i te kp kei te noho mrea rnei ki tnei huatanga tr pea ka whakamahia te maimoatanga iraruke te maimoatanga taiaki te hahau rnei tae noa ki te mahi hparapara. M rata e tohutohu ko thea te maimoatanga pai e ai ki t htori hauora me t whakatau mate. He nui te auau whai oranga i ng matepukupuku o te kp. 28 It had all been so well explained to me. The oncology nurses were wonderful I had the highest regard for them. I think if you ask questions and really listen to what the staff tell you you will be less frightened. Jill Surgery Cancer of the uterus is usually treated by removing the uterus. The operation is called a hysterectomy. Sometimes the operation can be done through keyhole surgery where four or five small holes are made in the abdomen. The surgeon uses a small camera to see inside the abdomen (laparoscopy) before removing the uterus through the vagina. For a hysterectomy the cut is made along the pubic hair line or from the pubic area to the belly button. Once the abdomen is open the surgeon washes out the area with a fluid which is sent to a pathologist who checks the fluid for cancer cells. The surgeon checks all the organs in the abdomen looking for signs of cancer spread (metastasis). This part of the operation is called a laparotomy. 29 The surgeon then removes the uterus (hysterectomy). The fallopian tubes and ovaries are usually removed. This is called a bilateral salpingo oophorectomy. The pathologist will look at the uterus to work out the type of cancer and whether the cancer has spread to the muscle wall of the uterus. If the cancer is only on the surface or is in a very early stage you may not need to have any more treatment. If the cancer has spread into the muscle wall of the uterus this increases the risk of spread to the lymph nodes in the abdomen. Removal of lymph nodes is called a lymphadenectomy. If you have cancer in the lymph nodes additional treatment may be recommended. If the cancer has spread to the cervix a small part of the upper vagina and the ligaments supporting the cervix are also removed. This operation takes longer. All treatments have possible complications for example bleeding or an infection. Although they are uncommon your doctor will discuss them with you before your surgery. 30 Hparapara I te nuinga o te w whakamaimoatia ai te matepukupuku o te kp m te tango i te kp. Ko te ingoa o tnei pokanga ko te hysterectomy. I tahi w ka mahia te pokanga m te hparapara khaok ina ka mahia ng khao iti e wh e rima rnei ki roto i te puku. Ka whakamahia e te mtanga ttahi kmera iti hei titiro ki roto i te puku (laparoscopy) i mua i te tangohanga o te kp m te tara. M te hysterectomy ka mahia he tapahi ki runga ake o te pae huruhuru o te tara mai i te taha mau ki te taha katau mai i te pae huruhuru rnei ki te pito. Ka tuwhera ana te puku ka horoia e te mtanga o roto m te ktere katahi ka tukunga ki ttahi mtanga rangahau mate hei tirotiro i te ktere ki te kimi mn he ptau matepukupuku. Ka tirohia e te mtanga ng whkau katoa i roto i te puku me te rapu tohu m te hrapa o te matepukupuku (metastasis). Ko te ingoa m tnei whanga o te pokanga ko te laparotomy. Katahi ka tango te mtanga i te kp (hysterectomy). I tahi w ka tangohia ng p kkano me ng kiato kkano. Ko te ingoa m tnei ko te bilateral salpingo oophorectomy. Ka titiro te mtanga rangahau mate i te kp ki te whakatau ko thea momo matepukupuku me te kimi mehemea kua hrapa ki te pt uaua o te kp. Mehemea kei runga noa iho i te mata o te uaua kei te whanga tmatatanga rnei tr pea kore koe e whai an i etahi maimoatanga. 31 Mehemea kua hrapa te matepukupuku ki te pt uaua o te kp ka piki te mrea o te hrapa ki ng tpona waitinana o te puku. Ko te ingoa m te mahi tango i ng tpona waitinana ko te lymphadenectomy. Mehemea kua p te matepukupuku ki tpona waitinana tr pea ka taunakitia he maimoatanga tpiri. Mena kua hrapa te matepukupuku ki te waha whare tangata ka tangohia he whanga iti o te whanga runga o te tara me ng nape tautoko i te waha whare tangata. Ka roa ake tnei mahi pokanga. Ka p pea he raruraru ki ng maimoatanga katoa hei tauira ko te rere o te toto ko ttahi whakapokenga rnei. Ahakoa kre nei e tino kitea ana ka matapakitia nei e t rata me koe i mua i t hparapara. After the operation When you wake up from the operation you will have several tubes in place. An intravenous drip will give you fluid as well as medication. There may also be one or two tubes in your abdomen to drain away fluid from the operation site. There may be a catheter in your bladder to drain away urine. As you recover from the operation these tubes will be removed usually within three to five days. As with all major operations you will have discomfort or some pain. You will have pain relievers through an intravenous drip or through an epidural into your spine. This epidural pain relief is similar to that given to women 32 during childbirth. It is best to let your nurse know when you are starting to feel uncomfortable don t wait until the pain becomes severe. Some patients are comfortable using patient controlled analgesic (PCA). PCA is delivered through a drip and allows you to choose when you receive a dose of pain-relieving medication. A few days after your operation your doctor will have all the test results and will discuss any further treatment with you. Further treatment will depend on the type of cancer the stage of the disease and if there is any remaining cancer. Side effects of surgery This is major surgery so you may be in hospital for several days. Your recovery time will depend on different factors (type of surgery or general health). Don t expect to get back to your normal activities too quickly. For some women it may take six weeks or longer. During this time avoid heavy work and lifting and housework (for example vacuuming laundry tasks or driving) for the first few weeks. Standing for stretches of time can be tiring too. After surgery some women develop internal scar tissue called adhesions. Sometimes this can be painful and may affect the working of the bowel and the bladder. Occasionally adhesions to the bowel or bladder may need to be treated with surgery. 33 If you have not been through menopause removing your ovaries will cause menopause. This may cause strong symptoms such as hot flushes. These may be more severe than a normal menopause where the reduction of hormones happens more slowly. If you have been through menopause there may be a recurrence of hot flushes. For more information see the section on menopause on page 63. The Cancer Society has an Information Sheet titled Early Menopause and Cancer that you can view and print from our website (www.cancernz.org.nz). Physical and emotional changes may affect how you feel about sex and how you respond sexually. Changes to your sexual feelings or not being able to get pregnant may be very upsetting and difficult to accept. Some of these issues are discussed in the Sexuality and cancer section of this booklet on pages 86 to 88. Radiation treatment Radiation treatment treats cancer by using radiation (energy) to destroy cancer cells. The radiation is targeted to cancer sites in your body. Treatment is also carefully planned to do as little harm as possible to your normal body tissues. Radiation treatment may be advised as your main treatment option to have after surgery with before or after chemotherapy 34 if you are not well enough for a major operation or if the cancer returns after surgery as an additional therapy (this is called adjuvant treatment). Radiation treatment can be delivered using a source placed internally (inside you) or as an invisible beam of energy directly from a machine (outside you). Since they can work in different ways it is possible that you could have both forms of radiation treatment. Your radiation oncologist will advise which radiation treatment is best for you. Maimoatanga iraruke Ka maimoa te maimoatanga iraruke pngao i te matepukupuku m te tuku iraruke ki te patu i ng ptau matepukupuku. Ka hngai te tuku i te iraruke ki ng whi noho ai te matepukupuku ki roto i t tinana. Ka ata maheretia hoki t maimoatanga kia iti ake te p kino ki ng kikokiko noa o te tinana. Tr pea ka tohua ko te maimoatanga iraruke hei kowhiringa matua m t maimoatanga hei whai i te mahi hparapara ki te taha o te mahi hahau ki mua ki muri rnei mn kei te muiui rawa koe m ttahi pokanga matua ki te hoki mai rnei te matepukupuku whai muri i t hparapara. 35 hei haumanu tpiri (ko te ingoa o tnei ko te haumanu adjuvant) m te rau p m roto (ki roto i a koe) rnei Ka tukua he hihi ngaro o te pngao e ahu mai ana i ttahi prere (kei waho i a koe) (titiro ki raro ake nei). Ka taea te tuku i te maimoatanga iraruke I te mea he rerek te mahi a ia huarahi tr pea ka whiwhi koe i ng maimoatanga iraruke e rua. M t kaimtai matepukupuku koe e tohutohu ki te maimoatanga iraruke pai mu. Brachytherapy (radiation treatment from inside) Brachytherapy is a type of radiation treatment where a hollow instrument is inserted into the vagina and placed close to the cancer or where the cancer was. A tiny radioactive source (smaller than a grain of rice) on the end of a long wire is inserted into the instrument so the source of radiation is very close to what needs to be treated. This tiny radioactive source is programmed to stay at each site for periods of time before being moved to the next site in order to give the correct dose. In New Zealand this treatment is likely to be high dose brachytherapy which means the dose is delivered over a short time (5 to 15 minutes) for each treatment. 36 Many women will have brachytherapy (radiation treatment from the inside) after surgery (adjuvant treatment). This means there is no known cancer left after the surgery but it is given to reduce the risk of the cancer coming back in the top of the vagina after surgery. Your cancer doctors will advise the best form of treatment based on your cancer and medical history. This treatment is given only to women who have a higher risk of the cancer coming back. This treatment may be given with external beam irradiation. You will have internal radiation treatment as two to five short treatments. Most people can have their treatment as an outpatient but you may need to stay in hospital overnight. Each treatment time can be as little as 5 to 10 minutes. Your doctors will tell you how many treatments you need. External radiation treatment (or radiation from a machine that is outside the body usually called a Linear Accelerator or LINAC) Radiation treatment uses high energy radiation to destroy cancer cells or prevent them from reproducing. Radiation treatment only affects the part of the body at which the beam(s) are aimed. For cancer of the uterus the lower abdomen area and pelvis are treated but if the cancer has spread this can be extended to include other areas. 37 Image above The radiation therapist will explain your treatment to you. 38 You usually have external radiation treatment as an outpatient five days a week for five to six weeks. The actual treatment takes a few minutes. You will be in the room for approximately 15 minutes as you are positioned and other checks are done. Radiation treatment does not cause pain or discomfort as it is being given. Radiation treatment involves careful measurement and planning so the treatment is delivered to where it is needed avoiding as much normal tissue as possible. However you will develop some symptoms and notice some changes from the treatment called side effects. Side effects of radiation treatment Radiation treatment may cause a number of side effects which are temporary and can be treated. Side effects may include tiredness loss of appetite diarrhoea pain when passing urine and passing urine more than usual. There may also be skin problems and the skin between your buttocks may look and feel as if it has been sunburnt. Sometimes this effect occurs after radiation treatment has finished. Use creams recommended by your treatment team to relieve this burning feeling. There may be some hair loss in the area where radiation treatment has been targeted. This means that your pubic hair may become thinner. It may grow back after the treatment is finished this could take a number of months. Radiation treatment will make the vagina inflamed at first but later can make the vagina narrower and drier. This can make sex uncomfortable. Using lubricating gel may be helpful. 39 A vaginal dilator may be recommended to try to reduce the likelihood of vaginal narrowing shortening and to make follow-up examinations easier. See page 87 for information on dilators in the section Sexuality and cancer and for more information talk to your cancer care team. Sometimes side effects do not occur for some time after the end of treatment. These late side effects can be long term and for some women they will be permanent. The effects can include inflammation of the bowel and the bladder. Bladder inflammation is called radiation cystitis. Inflammation of the rectum is called radiation proctitis. Speak to your doctor or nurse about how to manage any side effects. The Cancer Society has a booklet titled Radiation Treatment Haumanu Iraruke A guide for people having radiation treatment. You can receive a copy by phoning our cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237) or by visiting your local Cancer Society. You can also read and download a copy of the booklet from the Cancer Society of New Zealand s website (www.cancernz.org.nz). UNDERSTANDING CANCE R Radiation Treatment Haumanu Iraruke A guide for people having radiation treat ment 40 Hormone treatment Some cancers of the uterus depend on hormones to grow. Ovaries are removed during surgery for two reasons because the cancer may have spread to the ovaries because they produce oestrogen which may help the cancer to grow. Tissue removed during your operation will be tested to see if your cancer can be treated by hormones. Drugs such as provera block the body s use of oestrogen. Provera is a form of the female hormone progesterone. Tamoxifen an antioestrogen drug is also used. Hormone treatment can work very well for advanced or recurrent cancer of the uterus. It can also be used to treat early stage cancer of the uterus if other medical problems prevent surgery or radiation treatment. Hormone treatment is taken as a pill. 41 Maimoatanga taiaki Ka hngai tahi matepukupuku o te kp ki te tipu o tahi taiaki. E rua ng take ka tangohia ng kiato kkano i te w hparapara kua hrapa pea te matepukupuku ki ng kiato kkano i te mea ka mahi oestrogen ng kiato kkano tr pea ka aki i te tipu o te matepukupuku. Ka whakamtauria ng kikokiko ka tangohia i te w o t pokanga ki te titiro mehemea ka taea te maimoa i t matepukupuku m ng taiaki. Ka rai ng whakapauau pr ki te provera i te mahi a te tinana ki te whakamahi oestrogen. He momo te provera o te taiaki wahine progesterone. Ka whakamahia te tamoxifen he whakapauau anti-oestrogen. He tino pai te mahi a te maimoatanga taiaki m te matepukupuku maukaha matepukupuku truarua hoki o te kp. Ka taea hoki te whakamahi hei maimoa m te whanga tmatatanga o te matepukupuku o te kp mehemea kore e taea te maimoatanga hparapara te maimoatanga iraruke rnei. Ka haria te maimoatanga taiaki hei pire. 42 Side effects of hormone treatment Side effects of provera include breast tenderness nausea and fluid retention. In high doses it may increase your appetite and cause some weight gain. Tamoxifen can cause side effects such as hot flushes headaches and fluid retention. You may have some or none of these side effects. Discuss any problems or concerns with your doctors. Chemotherapy Chemotherapy is the treatment of cancer using anti-cancer drugs. The aim is to destroy cancer cells while causing the least possible damage to normal cells. The drugs kill cancer cells by stopping them from increasing in number. Chemotherapy may be offered with radiation and is usually given to women who have a high risk of the cancer returning to try to prevent it coming back. It may also be advised for women whose cancer is advanced when they are first diagnosed to try to shrink the cancer or to relieve symptoms caused by the cancer. If cancer returns after surgery or radiation treatment chemotherapy may be used to control the growth of the cancer and to help relieve symptoms. It is also used if the cancer does not respond to hormone treatment. Chemotherapy is usually given through a drip inserted into a vein. At first it may be given with external beam radiation followed by internal radiation (brachytherapy). You may then have more chemotherapy. You will be closely monitored during this time. Treatment cycles are usually two to four weeks apart. Spacing out your treatment in this way gives your body a chance to recover from any side effects. 43 Hahau He maimoatanga whakamahi i ng whakapauau tauaromatepukupuku te hahau. Ko te whinga ko te whakamate i ng ptau matepukupuku me te whai kia iti noa iho te pnga ki ng ptau pai. Ka whakamate ng whakapauau i ng ptau matepukupuku m te whakamutu i t rtou tipu. Tr pea ka hoatuna te mahi hahau i te taha o te mahi iraruke ka hoatuna ki ng wahine noho mrea m te hokinga mai o te matepukupuku ki te rai i tna hokinga mai an. Tr pea ka tohua m ng wahine kua maukaha te matepukupuku i te w ka whakatauria ki te tngongo i te matepukupuku ki te whakamm rnei i ng tohumate n te matepukupuku. Ki te hoki mai te matepukupuku whai muri i te maimoatanga ka whakamahia pea te hahau ki te whakahaere i te tipu o te matepukupuku me te whina ki te whakaiti i ng tohumate. Ka whakamahia hoki mn kore te matepukupuku e anga ki te maimoatanga taiaki. Ka hoatuna te hahau m ttahi pata ka kuhuna ki roto i te ia auraki. I te tuatahi tr pea ka hoatuna m te hahau hihi -waho whai ko te iraruke -roto (brachytherapy). Tr pea ka whai an he mahi hahau. Ka ta aroturukihia koe i tnei w. hua rua ki te wh wiki te haere o ng huringa maimoatanga. M tnei ka tuku i t tinana ki te whakaora mai i ng pnga ka puta i te taha. 44 Photographer Louise Goossens Above A woman talking about her medication with a nurse in the Chemotherapy Suite. 45 Side effects of chemotherapy The side effects of chemotherapy vary according to the type of drugs used. Your doctor will talk to you about these side effects and how to manage them. Side effects may include feeling sick (nausea) vomiting feeling off-colour and tired and some thinning or hair loss. Most side effects are temporary and steps can often be taken to either prevent or reduce them. For a copy of the Cancer Society s booklet Chemotherapy Hahau A guide for people having chemotherapy contact the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237) contact your local Cancer Society for a copy or view or download it from the Cancer Society s website (www.cancernz.org.nz). UNDERSTANDING CANCE R Chemotherapy Hahau A guide for people having chemotherapy 46 Complementary and alternative medicines Often people with cancer seek out complementary and alternative therapies. Many people feel it gives them a greater sense of control over their illness and that it s natural and low-risk or they just want to try everything that seems promising. Complementary therapies include massage meditation acupuncture and other relaxation methods which are used along with medical treatments. Alternative therapies are unproven remedies including some herbal and dietary remedies which are used instead of medical treatment. Some of these have been tested scientifically and found not to be effective or even to be harmful. Some complementary therapies are useful in helping people to cope with the challenges of having cancer and cancer treatment. However some alternative therapies are harmful especially if you use them instead of medical treatment you use herbs or other remedies that make your medical treatment less effective. Be aware that a lot of unproven remedies are advertised on the internet and elsewhere without any control or regulation. Before choosing an alternative remedy you may wish to discuss it with your doctor or a cancer information nurse on the Cancer Information Helpline 0800 CANCER (226 237). 47 For more information we recommend you read the following Complementary and Alternative Cancer Medicines for people with cancer their family and friends (booklet) Complementary and Alternative Medicine (Information Sheet) Complementary and Alternative Med icin LIVING WITH CANCE R e A guide for people affected by cancer You can find out about what scientific research has been done into specific herbs supplements and other products on the Memorial Sloan-Kettering website (http www.mskcc.org ). The US National Center for Complementary and Alternative Medicines (NCCAM) (http nccam.nih.gov ) and Quack-watch (www.quackwatch.com) are also a reliable websites. Ng haumanu tpae me tahi atu haumanu whiringa He nui te w ka whai haumanu tpae whiringa ake rnei ng tangata pngia ki te matepukupuku. He nui rtou ka whakaaro m tnei huarahi ko rtou k kei te whakahaere i t rtou mate he mea mhorahora iti te mrea he hiahia noa iho rnei n rtou ki te whai i ng mea awhero katoa. 48 Ko tahi o ng haumanu tpae ko te mirimiri ko te whakamanatu ko te acupuncture me tahi huarahi proretanga. Whakamahia i te taha o ng maimoatanga hauora. Kore an i whai mana ng haumanu tpae hei rongo tturu tae noa ki tahi rongo otaota rongo -nohopuku whakamahia ai hei whakakapi i ng maimoatanga rongo tturu. Kua whakamtauria tahi o nei -ptaiao me te kite kore e whai kiko ana he takakino hoki. He pai tahi haumanu tpae hei whina i tahi ki te t pakari ake ki tahi o ng wero o te noho matepukupuku me ng maimoatanga matepukupuku. Heoi an r he takakino tahi haumanu whiringa in r mehemea kei te whakamahia me te kore whai maimoatanga -rongo tturu te whakamahi i ng otaota me r atu rongo whakaiti i te whai hua o ng maimoatanga rongo tturu. Me mataara he nui ng rongo kre an i kitea te pai e whakatairangahia ana ki runga i te ipurangi me tahi atu whi me te kore whai whakahaerenga tikanga hoki. I mua i te kwhiringa i ttahi rongo whiringa k tr pea ka prangi koe ki te krero me t rata ttahi tapuhi prongo matepukupuku i runga i te Waea-whina Prongo Matepukupuku 0800 CANCER (226 237). 49 Making decisions about treatment Sometimes it is very hard to decide what is the right treatment for you. You may feel that everything is happening so fast that you do not have time to think things through. Waiting for test results and for treatment to begin can be very difficult. While some people feel they have too much information others may feel that they do not have enough. You may find knowing more about your cancer and treatments may help you make decisions. If you are offered a choice of treatments you will need to weigh up the good and bad points about each treatment. If only one type of treatment is recommended ask your doctor to explain why other treatment choices have not been offered. Some people with advanced cancer will always choose treatment even if it only offers a small chance of cure. Others want to make sure that the benefits of treatment outweigh any side effects. Still others will choose the treatment they consider offers them the best quality of life. Some may choose not to have treatment except to have any symptoms managed as they arise. 50 Ng mahi whakatau i te maimoatanga He tino uaua i tahi w ki te whakatau he aha te maimoatanga tika mu. Tr pea ka whakaaro koe kei te tere rawa te haere o ng mahi kre koe e whai w ki te ta whakaaro i ng piki me ng heke. He uaua hoki te mahi tatari i ng hua o ng whakamtautau me te tatari kia tmata ng maimoatanga. Ara tahi ka whakaaro kei te pokea rtou e te prongo engari ara an tahi ka whakaaro he iti rawa. Tr pea ka mrama koe m te mhio ake ki t matepukupuku me ng maimoatanga e whina i o whakataunga. Talking with doctors You may want to see your doctor a few times before making a final decision on treatment. It is often hard to take everything in and you may need to ask the same questions more than once. You always have the right to find out what a suggested treatment means for you and the right to accept or refuse it. Before you see the doctor it may help to write down your questions. There is a list of questions to ask your doctor at the end of this booklet which may help you. The Cancer Society has a booklet titled Questions You May Wish To Ask. To receive a copy call the cancer information nurses on the 51 Cancer Information Helpline 0800 CANCER (226 237) contact your local Cancer Society for a copy or view and download a copy on the Cancer Society s website (www.cancernz.org.nz). UNDERSTANDING CANCE R English Questions you may wish to ask A guide for people with cancer Taking notes during the session 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. Some people find it is helpful to record the discussion (but check with your doctor first). Te krero me t rata Tr pea ka hiahia krerorero me t rata i mua i te whakatau ko hea te huarahi maimoatanga pai mu. Me uaua ka tarea e koe ng krero katoa hei tahi w me hoki atu tuarua tuatoru ptai. Kei a koe te tika ki te rapu he aha ng putanga o ttahi maimoatanga mu ake kei a koe te tika ki te kaupare ki te whakaae rnei i te maimoatanga. 52 53 Talking with others Once you have discussed treatment options with your doctor you may want to talk them over with your family or friends with nursing staff the hospital social worker or chaplain or your own religious or spiritual adviser. Talking it over can help to sort out what course of action is right for you. You may be interested in looking for information about your cancer type on the internet. While there are some very good websites you need to be aware that some websites provide wrong or biased information. We recommend that you begin with the Cancer Society s website (www.cancernz.org.nz) and use our links to find other good cancer sites. If you ve got questions about your cancer phone the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237). See the section on supportive care services on page 74 for more information on the support the Cancer Society can offer you. Te krero ki tahi atu In oti whitiwhitinga krero maimoatanga me t rata tr pea ka hiahia krero koe i nei take me t whnau hoa ng kaimahi tapuhi te tauwhiro o te hhipera te minita rnei tu ake kairahi wairua rnei. M te krerorero hei whina i a koe ki te whakarite he aha te huarahi pai hei whai mu. 54 I think you need to trust your specialist. If you don t then get another one. But if you trust them and work with them you ll come out as best as you possibly can. You don t have to be friends they may be quite abrupt and may not want to sit at the end of your bed and have a chat. But it s the trust that s important. Sarah Prognosis (outlook) Most women with early cancer of the uterus will be cured of their disease. For women with more advanced cancer a cure may still be possible. For other women treatment can keep the cancer under control for long periods of time. You will need to talk with your gynaecological oncologist about your own prognosis (outlook). A second opinion You may want to ask for a second opinion from another specialist. Your specialist or GP can refer you to another specialist. You can ask for copies of your results to be sent to the second doctor. You can still ask for a second opinion even if you have already started treatment or still want to be treated by your first doctor. 55 Taking part in a clinical trial Clinical trials are research studies to find better ways to treat cancer. If your doctor suggests taking part in a clinical trial make sure that you fully understand the reasons for the trial and what it means for you. Before deciding whether or not to join the trial you may wish to ask your doctor What is the standard (best available) treatment for my cancer if I don t go in the trial Which treatments are being tested and why Which 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 any problems occur while I am in the trial Will I need to come to hospital more often If you do join a clinical trial you have the right to withdraw at any time. Doing so will not affect your treatment for cancer. It is always your decision to take part in a clinical trial. If you do not want to take part your doctor will discuss the best current treatment choices with you. 56 The Cancer Society has a booklet titled Cancer Clinical Trials. To receive a copy call the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237) contact your local Cancer Society for a copy or view and download a copy from the Cancer Society s website (www.cancernz.org.nz). UNDERSTANDING CANCE R Cancer Clinical Tria ls A guide for people considering taking part in a clinical trial Te whai whi ki roto i ng whakamtautau haumanu He akoranga rangahautanga ng whakamtautau haumanu ki te kimi huarahi hei whakapai ake i te maimoatanga matepukupuku. Ki te whakataunaki t rata kia kuhu koe ki ttahi whakamtautau haumanu me mrama koe ki ng huatanga o te whakamtau me ng pnga ki a koe. I mua i t whakatau ki te hono atu ki te kore rnei tr pea ka prangi koe ki te uiui i t rata He aha te maimoatanga aro whnui (pai ake) m tku matepukupuku ki te kore au e whai i te whakamtautau He aha ng whakamtautau kei te whakamtauria he aha ai e whakamtauria ana nei Ko hea ng whakamtautau kei roto 57 58 Photographer Louise Goossens He aha ng mrea ng pnga ki te taha rnei Ka phea te roa o te whakamtautau Me haere au ki te hhipera m ng maimoatanga Ka aha au ki te puta he raruraru i te w kei roto au i te whakamtautau Me kaha ake taku haramai ki te hhipera Ki te hono koe ki ttahi whakamtautau haumanu kei i a koe te tikanga ki te unu ahakoa te aha. Ehara i te mea ka whai pnga ki t maimoatanga matepukupuku. I ng w katoa kei i a koe te tikanga ki te whakauru ki ttahi whakamtautau haumanu. Ki te kore koe e hiahia ki te whakauru ake m t rata e matapaki me koe ng whiringa maimoatanga o te w. He puka t te Khui Matepukupuku ko Cancer Clinical Trials te ingoa. Ki te hiahia kape koe waea atu ki ng tapuhi prongo matepukupuku i runga i te Waea-whina Prongo Matepukupuku 0800 CANCER (226 237) whakap rnei ki te Khui Matepukupuku -rohe m ttahi kape me tiro ka kape rnei i ttahi mai i te paetukutuku a te Khui Matepukupuku (www.cancernz.org.nz). 59 I was up within a couple of days and moving around slowly. I was preparing meals--it took a lot of time--within about a week. But the whole experience was fatiguing it took a long time before I got my energy back. Miriana Coping with side effects You will find that there are physical changes as well as many emotional changes to cope with. It is important that you and the people around you (this could include your partner employer and family members) are prepared. Tiredness Many women find that tiredness is a major problem. Travelling backwards and forwards to hospitals and clinics for treatment and appointments is very tiring. If you work during the treatment or if you have a home and a family to care for you will almost certainly be very tired. Some people having cancer treatment say their tiredness is overwhelming and unlike any tiredness (fatigue) they have felt before. Sometimes it cannot even be fully relieved with rest. 60 Your tiredness may continue for quite a while even after treatment has finished. Some women find that it takes them up to one or two years to feel really well again. It may help to talk with your family and friends about how you feel and discuss ways in which they can help you. You may need to plan your activities during the day so that you get regular periods of rest. The Cancer Society has an Information Sheet titled Cancer-related Fatigue . To receive a copy call the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237) contact your local Cancer Society for a copy or view and download a copy on the Cancer Society s website (www.cancernz.org.nz). If your fatigue is caused by low levels of red blood cells or the side effects of drugs that you are taking your doctor may be able to treat this. Tips that will help relieve your tiredness Not all of these things will work for everyone but you may be surprised how small changes can help to save your energy. Plan your day. Set small manageable goals. Don t be afraid to ask for help ask a friend to do the shopping or come to clean the house once a week. Try not to rush leave plenty of time to get to appointments. If you are fit enough and your doctor has said it is okay get some exercise. This may be the last thing you feel like doing but research shows that exercise can boost energy levels and make you feel better. Even if you just walk around the garden or block a few times a week it all helps. 61 Smoking reduces your energy. If you smoke talk to your doctor or the Quitline on 0800 778 778 about stopping. If you have young children or grandchildren try to play with them sitting or lying down board games puzzles and drawing are good ideas. Eat nutritious meals and snacks throughout the day to keep your energy levels up. Try to take some time out to do things that you enjoy. For example having a relaxing bath listening to some music or just being with your pet may help you relax and for a short time take your mind off how tired you feel. Use Facebook an answerphone and emails to update friends and family on how you are. Join a Cancer Support Group or education programme. Talking about your feelings can ease the burden of fatigue and you can hear how other people in similar situations have managed. To find a group call the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237) or contact your local Cancer Society. 62 Menopause Women who go through menopause as a result of cancer treatment will have to adjust to the symptoms and body changes caused by no longer producing large amounts of the female hormones. Menopause can cause several different symptoms. Not everyone will have them all. They may include hot flushes and night sweats vaginal dryness mood and memory changes anxiety effects on your sex drive (libido) weight gain fatigue sleep disturbances bladder changes. Menopause can increase your risk of other health conditions such as osteoporosis (weaker bones leading to a higher risk of breaking a bone). Symptoms can have little or no impact on some women. For others they can be severe. You can discuss your symptoms with your cancer doctor or GP. The important thing is that you feel you have the medical and emotional support you need to cope. The Cancer Society has an Information Sheet titled Early Menopause and Cancer . 63 To receive a copy call the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237) contact your local Cancer Society for a copy or view and download a copy from the Cancer Society s website (www.cancernz.org.nz). Hormone replacement therapy (HRT) can help reduce menopausal symptoms. Using HRT for more than five years increases the risk of some diseases including some cancers. However it also decreases the risk of some other diseases and cancers. You will need to discuss with your gynaecological oncologist what the benefits and risks are for you if you take HRT. If you were on HRT when your cancer was diagnosed you will need to weigh up the risks with your specialist of continuing HRT. Lifestyle changes can also help relieve some symptoms and allow women to cope better with menopausal symptoms for example diet changes to help with weight gain and finding time to relax to help with any emotional changes. Remember it is okay to ask for help. Many women find menopause a difficult time. It can help to tell those around you what you are feeling and going through. Having the support and understanding of those close to you will be reassuring and helpful with managing symptoms. 64 Bladder problems Bladder sensations or control may change after cancer treatment or surgery. Some women find they need to go to the toilet more often. Others find they need to go in a hurry and sometimes don t get there in time. Others find that they pass urine when they cough or sneeze. While these problems may improve even a small loss of bladder control can be distressing. If bladder control is a problem you should seek help. Your specialist or GP will be able to suggest ways to help with bladder control. These may include exercises to strengthen the muscles of your pelvic floor. You may be referred to a physiotherapist. For more information phone the New Zealand Continence Association Helpline number on 0800 650 659. Some hospitals have continence nurses who can help you with bladder problems. Bowel problems After surgery or cancer treatments such as radiation treatment some women have problems with their bowels. Some women find that they become constipated or suffer from diarrhoea or wind pain. Talk to your doctor nurse or dietitian about your symptoms. There may be some simple treatments they can advise. Some women may need to change their diet or take medication. 65 Lymphoedema Lymphoedema is swelling of part of the body usually the legs or the arms. It may occur after treatment for cancer of the uterus if you have had the lymph nodes in your abdomen removed (lymphadenectomy). Removal of the nodes may prevent normal draining of the lymph fluid from the legs. As a result fluid can build up in one or both legs causing swelling. This usually does not occur until some time after the original treatment. It isn t possible to predict whether you will have problems with lymphoedema. If you have problems seek immediate help as symptoms are better managed if treated early. Seek advice from your specialist or nurse. You may be given special stockings to wear after your operation that can help prevent this problem. Some hospitals have specialist physiotherapists who can advise you on how you may be able to reduce your risk of developing lymphoedema. They also help you manage if lymphoedema does occur in the future. The Cancer Society has an Information Sheet titled Managing Lympoedema that you might like to read. For more information call the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237). 66 Te t pakari ki ng pnga ki te taha Ka kite koe ka puta he rerektanga ki t tinana tae noa ki kre -roto. He mea nui kia takat koe me ng tngata ka awhi i a koe (tr pea ko t hoa t kaiwhakawhiwhi mahi whnau rnei). Te Ngenge Tr pea ka roa tonu te p o te ngenge ki a koe m te w whai muri i t maimoatanga. Ki tahi whine tahi ki te rua tau r an ka tino pai haere an rtou. He mea nui te krero ki t whnau me ng hoa e p ana ki kre -roto me te matapaki i ng huarahi tr pea ka hei rtou ki te whina i a koe. Tr pea me huri koe ki te mahere i ngohe i te r kia whai w koe ki te whakat. He Puka Whrangi Prongo t te Khui Matepukupuku ko Cancer-related Fatigue te ingoa. Ki te hiahia kape koe waea atu ki ng tapuhi prongo matepukupuku i runga i te Waea-whina Prongo Matepukupuku 0800 CANCER (226 237) whakap rnei ki te Khui Matepukupuku -rohe m ttahi kape me tiro ka kape rnei i ttahi mai i te paetukutuku a te Khui Matepukupuku (www.cancernz.org.nz). 67 Koero Ki tahi whine kore he pnga o ng tohumate he iti noa iho rnei. Ki tahi atu he tino kino k te pnga. Me matapaki tohumate me t rata matepukupuku t rata ake (GP) rnei. Ko te mea nui k kei te whai koe i ng tautoko -rongo -kre -roto hoki ki te noho pakari. He Puka Whrangi Prongo t te Khui Matepukupuku ko Early Menopause and Cancer te ingoa. Ki te hiahia kape koe waea atu ki ng tapuhi prongo matepukupuku i runga i te Waea-whina Prongo Matepukupuku 0800 CANCER (226 237) whakap rnei ki te Khui Matepukupuku -rohe m ttahi kape me tiro ka kape rnei i ttahi mai i te paetukutuku a te Khui Matepukupuku (www.cancernz.org.nz). Ng raruraru tngmimi Mehemea he raruraru mu te whakahaere tika i t tngmimi me rapu whina koe. M t mtanga t rata (GP) rnei e whakataunaki huarahi hei whina i a koe whakahaere i t tngmimi. Tr pea ko te kori tinana ki te whakakaha ake i ng uaua o t papatoiake. Tr pea ka tonoa koe ki te haere ki ttahi kairomiromi. M te roanga ake o ng krero waea atu ki te nama waea o New Zealand Continence Association Helpline i runga i a 0800 650 659. Kei tahi hhipera tahi tapuhi whakahaere tngmimi hei whina i a koe ki tnei raruraru. 68 Ng raruraru puku hamuti I muri mai i ng hparapara i ng maimoatanga matepukupuku rnei pr ki te maimoatanga iraruke ka puta he raruraru ki te puku hamuti m tahi whine. Ka whai ko te kreke ki tahi ko te krere ko te mamae o te patero rnei ki tahi atu. Krero ki t rata t tapuhi t mtanga nohopuku rnei e p ana ki tohumate. Tr pea ka taea e rtou te tohu atu i tahi maimoatanga mm noa iho. Me huri k pea tahi ki te whakarerek i t rtou nohopuku. Lymphoedema He pupuhitanga o ttahi whanga o te tinana te lymphoedema tae ake ki ng waewae ki ng ringaringa rnei. Tr pea ka puta whai muri i ng maimoatanga m te matepukupuku o te kp mehemea kua tangohia ng tpona waitinana (lymphadenectomy). N te tangohanga i ng tpona ka aukatia te rere o te ktere tpona i ng waewae. N tnei ka whakaahu te ktere ki roto i ng waewae me te puta o te pupuhi. hua roa tonu i muri mai i te maimoatanga taketake ka puta tnei. Kore e taea te matapae mehemea ka whai raruraru koe i te mate lymphoedema. Ki te p he raruraru whia he whina i taua w tonu i te mea ka pai ake te whakahaere i ng tohumate ki te tere mau. Rapua he whina i t mtanga i t tapuhi rnei. Tr pea ka hoatuna he tkena roa hei mau whai muri i t pokanga hei whina ki te rai i te raruraru nei. 69 Seeking support Palliative care Palliative care is an approach to caring for people with cancer and their family that focuses on improving their quality of life and not just about care at the end of life. This can be offered in a hospital rest home at home or by a hospice service. Palliative care may be used during times when your illness is causing discomfort for example bothersome pain shortness of breath or nausea and vomiting periods when your thoughts and feelings are distressing occasions when your illness may be having a big impact elsewhere in your life--maybe with your partner children family whnau work or perhaps financial affairs. The Cancer Society has a booklet on advanced cancer for people with cancer and for carers of people with advanced cancer titled Advanced Cancer Matepukupuku Maukaha A guide for people with advanced cancer. To receive a copy call the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237) contact your local Cancer Society for a copy or view and download a copy from the Cancer Society s website (www.cancernz.org.nz). 70 Te rapu tautoko Atawhai taurima He ahunga te atawhai taurima ki te tiaki i ng tangata matepukupuku me rtou whnau ka hngai ki te whakapai ake i te kounga oranga kaua anake ki te whakaputa i te taurima i te w mutunga o te oranga. Ka taea te hoatu i tnei i ng hhipera i te kinga m ttahi ratonga hospice rnei. Ka whakamahia te atawhai taurima i ng w tino puta te auhi n t mate pr ki ng mamae prearea te poto o t whakah te hiaruaki te ruaki rnei. ng w tino whakakohuki ai u whakaaro u kre -roto ng w kei te kaha ng paptanga o t mate ki whi k tr pea ki t hoa u tamariki t whnau tr pea he raruraru ptea. He puka t te Khui Matepukupuku e p ana ki te matepukupuku maukaha m ng tangata pngia ki tnei mate me ng kaitiaki tngata matepukupuku maukaha. Ko te Advanced Cancer Matepukupuku Maukaha A guide for people with advanced cancer. Ki te hiahia kape koe waea atu ki ng tapuhi prongo matepukupuku i runga i te Waeawhina Prongo Matepukupuku 0800 CANCER (226 237) whakap rnei ki te Khui Matepukupuku -rohe m ttahi kape me tiro ka kape rnei i ttahi mai i te paetukutuku a te Khui Matepukupuku (www.cancernz.org.nz). 71 Cancer support groups Cancer support groups offer support and information to people with cancer and their families. It can help to talk to others who have gone through the same experience. Support groups can also offer many practical suggestions and ways of coping. Ask your hospital or local Cancer Society for information on cancer support groups in your area. Financial assistance Help may be available for transport and accommodation costs if you need to travel some distance to your medical and treatment appointments. Your treatment centre or local Cancer Society can advise you about what sort of help is available. Financial help may be available through your local Work and Income office. Work and Income has pamphlets and information about financial assistance for people who are unable to work. Short-term financial help is available through the Sickness Benefit and longer-term help is provided through the Invalids Benefit. Extra help may be available for example accommodation supplements and assistance with medical bills. More information is available on the Ministry of Social Development s website www.msd.govt.nz or by phoning 0800 559 009. 72 Home care Nursing care is available at home through district nursing or your local hospital. Your doctor or hospital can arrange this. You may be entitled to assistance with household tasks during your treatment. For information on what help is available contact your hospital social worker or the District Nursing Service at your local hospital. Interpreting Services New Zealand s Health and Disability Code states that everyone has the right to have an interpreter present during a medical consultation. Family or friends may assist if you and your doctor do not speak the same language but you can also ask your doctor to provide an interpreter if using family members is inappropriate or not possible. Ratonga Whakamori -Waha E takoto ana te krero i te NZ Health and Disability Code e hei ana ng tngata katoa ki te whai kaiwhakamori i te w o ng hui hauora. Pai noa iho mn ka whina ttahi o te whnau ttahi hoa rnei mehemea he rerek t reo ki te reo o t rata. He pai noa iho hoki te ptai i t rata m ttahi kaiwhakamori mehemea kore i te tika kore rnei e taea e ttahi o te whnau. 73 Cancer Society Volunteering Information and Supportive Care Services Your local Cancer Society provides confidential information and support. The Cancer Information Helpline is a Cancer Society service where you can talk about your concerns and needs with trained nurses. Call your local Cancer Society and speak to supportive care services staff or phone the Cancer Information Helpline 0800 CANCER (226 237). Local Cancer Society centres offer a range of support services for people with cancer and their families. These may include volunteer drivers providing transport to treatment accommodation support and education groups contact with other women who have had cancer of the uterus the Look Good...Feel Better workshop. Contact your local Cancer Society about attending this workshop. You may be interested in Cancer Connect NZ which arranges telephone peer support calls for people living with cancer and their caregivers. Call the Cancer Information Helpline 0800 CANCER (226 237) for more information. Cancer Chat is an online support and information forum to join (www.cancerchatnz.org.nz). 74 Ng Mahi Tao Ng Prongo me ng Ratonga Manaaki Tautoko a Te Khui Matepukupuku Whakarato ai t Khui Matepukupuku -rohe i ng prongo matatapu me te tautoko. He ratonga te Waeawhina Prongo Matepukupuku n te Khui Matepukupuku ka taea te noho me te krero i wangawanga ki tahi tapuhi matatau ki t mate. Waea atu ki te Khui Matepukupuku -rohe ka krero ki ng kaimahi ratonga manaaki tautoko me waea atu rnei ki te Waeawhina Prongo Matepukupuku 0800 CANCER (226 237). Kei ng pokap Khui Matepukupuku -rohe ng ratonga whina m te hunga kua pngia i te matepukupuku me rtou whnau. Ko tahi o nei whina ko ng kaitaraiwa whakarite waka hei hari i a koe ki ng mahi maimoatanga ng kinga noho ng rp tautoko me ng rp ako he whakapnga ki tahi atu whine kua pngia i te matepukupuku o te kp te hui awheawhe Look Good...Feel Better. Whakap atu ki te Khui Matepukupuku -rohe m te haere ki nei awheawhe. 75 Tr pea ka prangi koe ki te mhio m Cancer Connect NZ he rp whakariterite tautoko -hoa arop m te waea m ng tngata noho matepukupuku me rtou kaitiaki. Waea atu ki te Waeawhina Prongo Matepukupuku 0800 CANCER (226 237) m tahi atu prongo. He wnanga a-ipurangi tautoko me te prongo a CancerChat hei hono atu (www.cancerchatnz.org.nz). The range of services offered differs in each region so contact your local centre to find out what is available in your area. If you are having treatment at a private hospital ask your treatment team what services you may be eligible for. Wigs (hair loss) Some people having chemotherapy don t lose their hair while others may lose all their head and body hair. Whether this happens to you depends on what drugs you are given. Ask you cancer doctor if you are likely to lose your hair. The Cancer Society has an Information Sheet titled Managing Hair Loss that you can view on the Cancer Society s website (www. cancernz.org.nz) by contacting your local Cancer Society for a copy or by ringing the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237). 76 The government helps pay for the cost of a wig. You must get a certificate from your doctor that states you are entitled to a wig. Some people don t bother with a wig. They stay bald or cover up with a scarf or a hat. What you do is up to you. There is no medical reason why you have to cover up your head. However your scalp will be more sensitive to the sun than normal so you should wear a hat or a high-protection sunscreen (SPF 30 ) on your scalp when you re in the sun. 77 78 What can I do to help myself Many people feel that there is nothing they can do when they are told they have cancer. They feel out of control and helpless for a while. However there are practical ways you can help yourself. He aha ng mea ka tarea e au hei whina i a au an He nui ng tngata ka puri rawa atu i te rangona kua pngia rtou i te matepukupuku. Kore rtou e aro ko hea te huringa m rtou. Hunga tr ka taea tonu e koe tahi mahi hei whina i a koe an. Diet and food safety A balanced nutritious diet will help to keep you as well as possible and cope with any side effects of treatment. The Cancer Society s booklet titled Eating Well During Cancer Treatment Kia Pai Te Kai I Te W Maimoatanga Matepukupuku has useful advice and recipes. Phone your local Cancer Society office for a copy of this booklet call the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237) or view the booklet on our website at (www.cancernz.org.nz). The hospital will also have a dietitian who will give you advice on how to eat well during cancer treatment.. 79 Food safety is of special concern to cancer patients especially during treatment which may suppress immune function. To make food as safe as possible we suggest you follow these guidelines Wash your hands thoroughly before eating. Keep all areas and utensils you use for food preparation clean including washing hands before preparing food and washing fruit and vegetables. Handle raw meat fish poultry and eggs with care and clean carefully any surfaces that have been in contact with these foods. Keep raw meats separate from cooked food. Cook meat poultry and fish well and use pasteurised milk and juices. Refrigerate food quickly to reduce bacterial growth. Nohopuku me te haumaru kai M te nohopuku taurite me te kai pai hei whina i a koe ki te noho ora me te rai i ng pnga kino ka whai i ng maimoatanga. Kei roto i te pukapuka Eating Well Kia Pai te Kai i te W Maimoatanga Matepukupuku a Te Khui Matepukupuku tahi tohutohu whai kiko m te kai me tahi tohutaka waea atu ki t Khui Matepukupuku -Rohe m ttahi kape o te puka nei waea atu ki ng tapuhi prongo matepukupuku ki 80 te Waeawhina Prongo Matepukupuku 0800 CANCER (226 237) me tiro rnei i te puka i t mtou paetukutuku (www.cancernz.org.nz). Kei te hhipera ttahi mtanga nohopuku hei hoatu tohutohu whina an. He mea nui te haumaru o ng kai m ng troro kei te pngia i te matepukupuku tae atu ki te w e p ana ki te kai pai i te w o te maimoatanga. Exercise Many people find regular exercise helps recovery. Research has shown that people who remain active cope better with their treatment. The problem is that while too much exercise is tiring too little exercise can also make you tired. Therefore it is important to find your own level. Discuss with your doctor or nurse what is best for you. New research shows exercise may be better for your immune system than any other therapy. Recent publications show that maintaining a normal weight and exercising may reduce the risk of a cancer recurrence. For more information on the benefits of regular physical activity for people with cancer phone the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237) or contact your local Cancer Society to receive a copy of our pamphlet Being Active When You Have Cancer. 81 82 Kori tinana He tokomaha ng tngata e mrama ana he mea whina te korikori tinana i te hoki an ki te ora. E ai ki ng rangahau ki te rite t korikori tinana ka pai atu koe i te w o te maimoatanga. Ko te raruraru k ahakoa ka pau t hau ki te kaha rawa t kori tinana ka pau an t hau ki te iti rawa korikoringa. N reira he mea nui kia mhio koe he aha te korahi o te kori tinana e pai ana mu. Krero ki t rata ki t tapuhi rnei m te huarahi pai rawa mu ake. E ai ki ng rangahau hou kua puta he pai ake pea te kori tinana m to pnaha rai mate ki tahi atu haumanu. Whakaatu mai ai ng tnga o nianei m te pupuri i te taumaha me te kori i te tinana tr pea ka whakaiti tnei i te hokinga mai o te matepukupuku. Relaxation techniques Some people find relaxation or meditation helps them to feel better. The hospital social worker nurse or Cancer Society will know whether the hospital runs any relaxation programmes or may be able to advise you on local community programmes. Recovery and follow-up care Recovery and follow-up are different for everyone and depend on the treatment you have. It takes time to recover from the various types of treatment there are physical and emotional changes to cope with. You may need to talk with 83 your employer about how the treatment may affect your work and with your family about the support that you need. You will need regular health checks which will include tests and examinations after treatment is over. As well as checking to make sure your cancer hasn t come back follow-up visits can check whether any other physical changes have occurred as a result of the cancer or treatment. You will need check-ups even if you haven t had any sign of cancer for some years. This can make it difficult to put the experience of a cancer diagnosis and treatment behind you. For family and friends your cancer may be a thing of the past but check-ups may well bring it into the present for you again--you may feel quite anxious at check-up time. Finding ways of supporting yourself and taking care of yourself when a check-up is due is a part of living with cancer. Ng thua proretanga Ki tahi he momo whina te proretanga me te whakamanatutanga kia pai ake te ahua. He mhio pea te tauwhiro te tapuhi rnei o te hhipera te Khui Matepukupuku rnei mehemea whakahaerehia ai he htaka proretanga e te hhipera te tohutohu rnei i a koe e p ana ki ng htaka kei roto i te hapori. 84 Te whakaoranga me te manaakitanga ka whai muri He rerek te whakaoranga me te manaakitanga ka whai m tn m tn kei runga an i ng maimoatanga ka whai koe. He roa tonu te w whakaoranga m ng momo maimoatanga ko te t pakari ki ng whakarerektanga tinana kre -roto hoki. Tr pea me krero koe ki t kaiwhakawhiwhi mahi e p ana ki ng pnga o te maimoatanga ki mahi me t whnau e p ana ki ng tautoko ka prangi koe. Me whai auau koe i ng Arowhai ki t hauora tae noa ki ng whakamtau me ng whakamtauranga ka mutu ana ng maimoatanga. Atu i ng whakamtau ki te tiro mehemea kua hoki mai t matepukupuku he pai ng torotoronga whai muri ki te titiro mehemea kua puta an he rerektanga n runga i te matepukupuku i ng maimoatanga rnei. Life after treatment During treatment you may have been busy with appointments and focused on treatment but afterwards you may feel anxious rather than more secure. You might worry about every ache and pain and wonder if the cancer is coming back. Regular check-ups 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 85 re-establish a daily routine but it will be at their own pace and may be different from 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 different priorities and see life with a new clarity. For example you may decide to spend more time with family start a new hobby travel or get involved in advocacy or voluntary work. Sexuality and cancer Cancer treatment and the emotional effects of cancer may affect people with cancer and their partners in different ways. Some people may withdraw through feelings of being unable to cope with the effects of treatment on themselves or their partner. Others may feel an increased need for sexual and intimate contact for reassurance. It is important to talk about your feelings with your partner. If you are having trouble continuing with your usual sexual activities discuss this with your doctor or with a trained counsellor. Your partner may also like to seek support. 86 If you are without a partner you may be worried about forming new relationships. Talking about this with a close friend a family member a social worker or phoning the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237) may be useful. After you have had your check-up following surgery you will be able to resume sexual intercourse if you wish. If you have had internal or external radiation treatment you may find that your vagina has changed and it may be dry as well. Talk with your doctor or your nurse about this. Using a vibrator or vaginal dilator and an oestrogen vaginal cream (available on prescription) or lubricants can be helpful. Lubricants can be bought at chemists or supermarkets. You might wish to try different positions for sexual intercourse. Everyone is different be guided by your own feelings. You may find that particularly near the end of treatment you don t feel like intercourse. It may be some time until you feel ready for vaginal intercourse and you may need to build up your confidence first. Sharing affection with your partner through kissing caressing and touching can give you both much pleasure. When you do feel ready again for vaginal intercourse you may wish to proceed slowly. Talking about your needs together is important to help you feel more confident and to reduce any fears. 87 Sometimes you might be ready for sexual intercourse and your partner may be anxious about hurting you. If you find that you are having difficulty regaining your sexual relationship you may need specialist help and advice. You and or your partner may want to talk with your doctor or nurse about this or seek advice from them on where you might get help. You may find the Cancer Society s booklet Sexuality and Cancer Hkakatanga me te Matepukupuku helpful. You can get a copy from your local Cancer Society by phoning the Cancer Information Helpline 0800 CANCER (226 237) or by downloading it from our website at www.cancernz.org.nz. LIVING WITH CANCE R Sexuality and Cancer Ho kakatanga me te Mat epukupuku A guide for people with cancer and their partners 88 Te hkakatanga me te matepukupuku He rerek te maimoatanga matepukupuku me te pnga ki te hinengaro o te matepukupuku ki tn tangata ki tn tangata pngia ki te matepukupuku me rtou hoa. Ka whakatahi tahi n runga i te whakaaro kore rtou i te t pakari ki ng pnga o te maimoatanga ki runga i a rtou i rtou hoa rnei. Ar tahi atu ka piki k te hiahia hononga ai hononga tpui hei whakatau i a rtou. He mea nui ki te krero ki t hoa e p ana ki u kre -roto. Mehemea he raruraru mu ki te whai tonu i t hua ai matapakitia me t rata ttahi kaitohutohu kua konga. Tr pea ka hiahia t hoa ki te whai tautoko hoki. Mena kore koe i te whai hoa moe tr pea kei te wangawanga koe ki te kimi hononga hou. Krero ki ttahi hoa m tnei ki ttahi o te whnau ki ttahi tauwhiro rnei. He mea pai pea te waea atu rnei ki ng tapuhi prongo matepukupuku ki te Waeawhina Prongo Matepukupuku 0800 CANCER (226 237). 89 Questions you may wish to ask You may find this list helpful when thinking about the questions you may want to ask your doctor about your cancer and treatment. 1. 2. 3. 4. 5. 6. 7. 8. 9. Has my cancer spread If so how far What are my chances of cure What treatment do you advise for my cancer and why Will my treatment be performed by a doctor who specialises in cancer of the uterus Are there other treatment choices for me If not why not Are there any clinical trials of new treatments that I should know about What are the risks and possible side effects of each treatment What if I decide not to have any treatment Will I have to stay in hospital or will I be treated as an outpatient 10. How long will the treatment take How much will it affect what I can do How much will it cost 11. How will I know if the treatment is working 12. Will I have a lot of pain with the treatment What will be done about this 13. If I need further treatment what will it be like and when will it begin 90 14. Will the treatment affect me sexually or physically Will I be able to do normal things 15. How often will my check-ups be and what will they involve 16. Are there any problems I should watch out for 17. I would like to have a second opinion. Can you refer me to someone else 18. Is my cancer hereditary If there are answers you do not understand feel comfortable to say Can you explain that again or I m not sure what you mean by... 91 Ng ptai tr pea ka hiahia koe ki te ptai Tr pea ka whai kiko tnei rrangi ptai ka whakaaro ana koe ki tahi ptai e hiahia ana koe ki tuku ki t rata e p ana ki t matepukupuku. 1. Kua hrapa taku matepukupuku ki whi k. Mehemea e phea rawa te whnui o te hrapa 2. Ka ora an au i tnei mate 3. He aha te maimoatanga e tohutohutia ana e koe m taku matepukupuku he aha ai 4. Ka whakahaeretia taku maimoatanga e ttahi rata mtanga ki te matepukupuku o te kp 5. He kwhiringa maimoatanga atu an e wtea ana mku ki te kore he aha ai 6. He whakamtau haumanu an o ng maimoatanga hou me mhio au 7. He aha ng mrea me ng pnga ka puta i te taha o ng maimoatanga 8. Ka phea mn kore au e hiahia ki te whai maimoatanga 9. Me noho au ki te hhipera ka haere rnei au hei troro -waho 10. Ka phea te roa o te maimoatanga Ka phea te pnga ki ng mea e taea ana e au te mahi E hia te utu 11. Phea au mhio ai mehemea kei te mahi te maimoatanga. 92 12. Ka nui an te mamae ka rongo au i te taha o te maimoatanga He aha te huarahi ka whia hei whakapai i tnei 13. Mehemea me whai maimoatanga ake au whakamrama mai he aha te hua o aua mahi hei hea tmata ai 14. Ka whai pnga ng maimoatanga -hkakatanga -tinana ki a au Ka hei tonu au ki te whai i ng mea noa o ia r 15. Ka phea te auau o ng arowhai me whai au he aha ng mahi ka puta 16. Me tpato au ki tahi raruraru tr pea ka ara ake 17. E hiahia ana ahau kia tirohia tuaruatia au e ttahi atu. Ka taea e koe te tuku i a au ki ttahi atu 18. He mea tuku iho taku matepukupuku ki a ahau Mehemea kore i te mrama tahi o ng whakautu kaua e mharahara ki te k atu ka taea ki te whakamrama an i tn Kore au i te tino mrama ki t krero m... 93 Glossary Most of the words listed here are used in this booklet others are words you are likely to hear used by doctors and other health professionals who will be working with you. abdomen the part of the body below the chest which contains the stomach liver bowel bladder uterus ovaries and kidneys. adenocarcinoma a cancer that begins in glandular cells. adenosquamous carcinoma a type of cancer that contains two types of cells squamous cells (thin flat cells that line certain organs) and gland-like cells. adjuvant treatment a treatment given with or shortly after another treatment. advanced cancer cancer that has spread (metastasised) and or is unlikely to be cured. anaesthetic a drug given to stop a person feeling pain. A local anaesthetic numbs part of the body a general anaesthetic causes temporary loss of consciousness. anti-oestrogens drugs such as provera and tamoxifen which are used to treat cancers that depend on hormones to grow. benign not cancerous. Benign cells do not spread like cancer cells. 94 bilateral salpingo oophorectomy surgical removal of both ovaries and fallopian tubes. biopsy the removal of a small sample of tissue from the body for examination under a microscope to help diagnose a disease. brachytherapy a type of radiation treatment where the radiation source is placed in the area being treated. catheter a hollow flexible tube through which fluids can be passed into the body or drained from it. cells the building blocks of the body. A human is made of billions of cells which have different functions. clear cell carcinoma a rare type of tumour usually of the female genital tract in which the inside of the cells look clear when viewed under a microscope. endometrial hyperplasia an abnormal increase in the number of cells in the endometrium. endometrial sampling taking a biopsy or sample of the lining of the uterus to test for cancer or other conditions. endometrium glandular lining of the inside of the uterus that is stimulated by the hormones oestrogen and progesterone and shed each month as the period. frozen section a sample of fresh tissue is quickly frozen until it is hard enough to cut into sections. These can be stained so that a rapid diagnosis can be made for example while a patient is under anaesthetic. 95 genes the tiny factors that control the way the body s cells grow and behave. Each person has a set of many thousands of genes inherited from both parents. These genes are found in every cell of the body. gynaecological oncologist a doctor who has been certified as a specialist in treating women diagnosed with cancer of the reproductive organs. hormone replacement therapy (HRT) drug therapy that supplies the body with hormones that it is no longer able to produce it is used to relieve menopausal symptoms. hormones substances which have specific effects on the way the body works. Made in very small amounts by a gland various hormones help to control growth metabolism and reproduction. They are distributed in the bloodstream. hysterectomy surgical removal of the uterus and the cervix. infertility for women not being able to conceive a child. laparotomy operation in which a long cut is made in the abdomen to examine the internal organs also sometimes called an exploratory operation. lymphadenectomy operation that removes lymph nodes. lymph nodes also called lymph glands. Small beanshaped structures which are part of the lymphatic system. Lymph is the fluid that flows through this system and carries cells that help to fight disease and infection. The lymph nodes filter the lymph to remove bacteria and other harmful agents such as cancer cells. 96 lymphoedema swelling caused by a build-up of lymph. This happens when lymph vessels or lymph nodes don t drain properly. This can happen after lymphadenectomy. malignant cancerous. Malignant cells can spread (metastasise) and can eventually cause death if they cannot be treated. medical oncologist a doctor who specialises in treating cancer by using chemotherapy. menopause the time in a woman s life when the ovaries stop producing eggs and monthly periods stop the woman is no longer able to have children. Menopause can also be caused by the removal of the ovaries chemotherapy or by drugs such as tamoxifen that stop the ovaries from functioning. metastases also known as secondaries . Tumours or masses of cells that develop when cancer cells break away from the original (primary) cancer and are carried by the lymphatic and blood systems to other parts of the body. oestrogen female sex hormone mainly made by the ovaries. papillary serous carcinoma an aggressive cancer that usually affects the uterus endometrium peritoneum or ovary. pathologist a doctor who identifies diseases by studying cells and tissues under a microscope. progesterone hormone made by the ovaries that prepares the lining of the uterus (endometrium) for pregnancy. 97 prognosis an assessment of the course and likely outcome of a person s disease. radiation energy which can injure or destroy cells by damaging their genes. In radiation treatment this energy is used to destroy cancer cells. Radiation can be directed at a tumour from outside the body or a radioactive source may be implanted into the tumour and its surroundings. radiation oncologist a doctor who specialises in treating cancer by using radiation treatment. rectum the last 12 15 cm of the large bowel which opens to the outside at the anus. Faeces collect in the rectum before they are passed as a bowel motion. recurrent cancer a cancer that grows from cells of a primary cancer that evaded treatment. Recurrent cancer may appear up to 20 years after the primary cancer was treated. risk factor things that cause people to have a greater chance of developing an illness. Risk factors for cancer include exposure to harmful substances (such as asbestos some viruses and cigarette smoke) and a family history of cancer. surgery treatments which involve an operation. This may involve removal of tissue change in the organisation of the anatomy or placement of prostheses. tamoxifen a drug that blocks the effects of oestrogen in cancer cells a treatment for oestrogen-receptive and progesterone-receptive cancers. 98 tissue a collection of similar cells. In a tissue biopsy the tissue removed may be for example a very tiny piece of skin or a small piece of a body organ. When this tissue is magnified under a microscope cancerous abnormalities in the cells can be seen. tumour a new or abnormal growth of tissue on or in the body. ultrasound soundwaves of a very high frequency higher than a human can hear used to examine structures within the body. uterus also called the womb this is the hollow muscular organ in which a fertilised egg can grow and the baby can be nourished until birth. 99 Suggested readings and websites Readings Diaz-Montes Teresa P. (2010). Patients Guide to Uterine Cancer. Massachusetts Jones and Barlett Publishers. Dizon D.S. Linda R. Duska. (2011). 100 Questions & Answers About Uterine Cancer. Massachusetts Jones and Bartlett Publishers. Websites NZ Gynaecological Cancer Foundation www.silveribbon.co.nz Offers a range of information resources and support (including a newsletter) in the NZ context. Gynaecolgical Cancer Society (Australia) www.gcsau.org An excellent Australian site offering holistic authoritative and cancer-specific information covering the full range of gynaecological cancers in a number of languages. Gynaecological Cancer Support www.gynaecancersupport.org.au Australian resource for women with gynaecological cancer their family and friends providing supportive care information about emotional and social issues. It also has a good links section for further information on cancers side effects and after treatment issues. 100 Jean Hailes Foundation http www.jeanhailes.org.au resources factsheets Australian website with a large number of fact sheets and podcasts on women s issues such a menopause bone health and sleep. The suggested websites (other than our own) are not maintained by the Cancer Society of New Zealand. We only suggest sites we believe offer credible and responsible information but we cannot guarantee that the information on such websites is correct up-to-date or evidence-based medical information. We suggest you discuss any information you find with your cancer care health professionals. 101 Notes You may wish to use this space to write down any questions for or advice given by your doctors nurses or health providers at your next appointment. Whakamahia tnei whi wtea hei tuhi ptai e hiahia ana koe ki te ptai i t rata ng tapuhi ng kaiwhakarato hauora rnei m te w e hoki atu ai koe. 102 Notes 103 Notes 104 Cancer Society of New Zealand Inc. National Office PO Box 12700 Wellington 6144 Telephone (04) 494-7270 Auckland Division PO Box 1724 Auckland 1140 Telephone (09) 308-0160 Covering Northland Waikato Bay of Plenty Division PO Box 134 Hamilton 3240 Telephone (07) 838-2027 Covering Tauranga Rotorua Taupo Thames and Waikato Central Districts Division PO Box 5096 Palmerston North 4441 Telephone (06) 364-8989 Covering Taranaki Wanganui Manawatu Hawke s Bay and Gisborne East Coast Wellington Division 52 Riddiford Street Wellington 6021 Telephone (04) 389-8421 Covering Marlborough Nelson Wairarapa and Wellington 105 Canterbury West Coast Division PO Box 13450 Christchurch 8141 Telephone (03) 379-5835 Covering South Canterbury West Coast and Ashburton Otago Southland Division PO Box 6258 Dunedin 9059 Telephone (03) 477-7447 Covering Urban and rural Otago and Southland Cancer Information Service 0800 CANCER (226 237) www.cancernz.org.nz 106 Feedback Cancer of the Uterus Matepukupuku o te Kopu We would like to read what you thought of this booklet whether you found it helpful or not. If you would like to give us your feedback please fill out this questionnaire cut it out and send it to the Information Manager at the address at the bottom of the following page. 1. Did you find this booklet helpful Yes No Please give reason(s) for your answer. 2. Did you find the booklet easy to understand Yes No Please give reason(s) for your answer. 3. Did you have any questions not answered in the booklet Yes No If yes what were they 107 4. What did you like the most about the booklet 5. What did you like the least about the booklet 6. Any other comments Personal information (optional) Are you a person with cancer or a friend relative whnau Gender Female Male Age Ethnicity (please specify) Thank you for helping us review this booklet. The Editorial Team will record your feedback when it arrives and consider it when this booklet is reviewed for its next edition. Please return to The Information Manager Cancer Society of New Zealand PO Box 12700 Wellington. 108 www.cancernz.org.nz ANY CANCER ANY QUESTION 0800 CANCER (226 237) Cancer Information Helpline PI 131