Cancer of the uterus

Some conditions can affect the uterus and cause abnormal vaginal bleeding and pain. They may be found during tests for cancer of the uterus.

Polyps – Small, soft growths attached to the inner wall of the uterus. Polyps are usually benign (not cancer), but some may turn into cancer. They can be removed during a hysteroscopy and tested for cancer.

Fibroids – Benign tumours that begin in the muscle layer of the uterus (myometrium). Surgery may be used to reduce the size of the fibroid (myomectomy) or remove the uterus  (hysterectomy).

Endometrial hyperplasia – Thickening of the uterus lining (endoetrium) caused by too much oestrogen. Usually benign, but can lead to cancer, so may be treated with hormones, minor surgery or, in some cases, hysterectomy.

Endometriosis – When endometrial tissue grows outside the uterus (e.g. in the abdomen). Does not usually lead to cancer, but people with endometriosis may also have endometrial hyperplasia. May be treated with surgery or hormones.

Each year, about 3300 Australian women are diagnosed with cancer of the uterus, and most are over 50 years of age. Cancer of the uterus is the fifth most common cancer in women and the most commonly diagnosed gynaecological cancer (cancer affecting the female reproductive system).

The number of women diagnosed with cancer of the uterus has increased in recent years, including in younger women. This is likely to be linked to rising rates of obesity and diabetes, as well as more people living to older ages.

Anyone with a uterus can get cancer of the uterus – women, transgender men, non-binary people and people with intersex variations. For information specific to you, speak to your doctor.

Download our booklet ‘LGBTQI+ People and Cancer’

The most common symptom of cancer of the uterus is unusual vaginal bleeding. This may include:

• bleeding or spotting after menopause
• heavier than usual periods or other changes in periods
• bleeding between periods
• constant bleeding (periods that continue without a break).

A less common symptom is a smelly, watery vaginal discharge. In rare cases, symptoms include abdominal (belly) pain, unexplained weight loss, difficulty urinating (weeing) or a change in bowel habit (pooing). Any of these symptoms can happen for other reasons, but it is best to see your doctor for a check-up.

The exact cause of cancer of the uterus is unknown, but factors that can increase the risk include:

• age – cancer of the uterus is most common in women aged over 50 and in women who have stopped having periods (postmenopausal)
• body weight – carrying extra body weight (overweight or obese) is a major risk factor
• medical factors – having diabetes; having previous radiation therapy for cancer in the pelvic area; having endometrial hyperplasia
• family history – having an inherited change in a gene (mutation) linked with endometrial cancer (e.g. Lynch syndrome or Cowden syndrome), or having one or more close blood relatives diagnosed with cancer of the uterus or ovarian cancer
• reproductive history – not having children
• hormonal factors – starting periods before the age of 12; going through menopause after the age of 55; taking some types of oestrogen-only menopausal hormone therapy (MHT, previously called hormone replacement therapy or HRT); or taking tamoxifen, an anti-oestrogen drug used for breast cancer.

Many people who have risk factors don’t develop cancer of the uterus, and some people who get this cancer have no risk factors. If you are concerned about any risk factors, talk to your doctor. Maintaining a healthy body weight and being physically active are the best ways to reduce the risk of developing cancer of the uterus.

Your general practitioner (GP) will arrange the first tests to assess any symptoms. If these tests do not rule out cancer, you will be referred to a gynaecological oncologist or gynaecologist for more tests. If cancer of the uterus is diagnosed, the specialist will consider treatment options. To ensure the best outcome, it is recommended that you are treated by a specialist gynaecological cancer team.

Treatment options will often be discussed with other health professionals at what is known as a multidisciplinary team (MDT) meeting. During and after treatment, you may see a range of health professionals for various aspects of your care.

Health professionals you may see

gynaecological oncologist – diagnoses and performs surgery for cancers of the female reproductive system (e.g. cancer of the uterus, or cervical, ovarian, vulvar and vaginal cancers)

gynaecologist – specialises in diseases of the female reproductive system; may diagnose cancer of the uterus and then refer you to a gynaecological oncologist

radiation oncologist – treats cancer by prescribing and overseeing a course of radiation  therapy

medical oncologist – treats cancer with drug therapies such as chemotherapy, hormone  therapy, targeted therapy and immunotherapy (systemic treatment)

cancer genetics specialist – specialises in understanding cancers that have occurred as a result of inherited risk

cancer care coordinator – coordinates your care, liaises with other members of the MDT and supports you and your family throughout treatment; care may also be coordinated by a clinical nurse consultant (CNC) or clinical nurse specialist (CNS)

nurse – administers drugs and provides care, information and support throughout treatment

fertility specialist – diagnoses, treats and manages infertility; may be an obstetrician, gynaecologist or reproductive endocrinologist

women’s health physiotherapist – assists with physical problems associated with gynaecological cancers, such as bladder and bowel issues, sexual issues and pelvic pain

lymphoedema practitioner – educates people about lymphoedema prevention and management, and provides treatment if lymphoedema occurs; often a physiotherapist or occupational therapist

psychologist, counsellor – help you manage your emotional response to diagnosis and treatment

The doctor will feel your abdomen (belly) to check for swelling and any masses. To check your uterus, they will place 2 fingers inside your vagina while pressing on your abdomen with their other hand. You may also have a vaginal or cervical examination where a speculum is inserted into your vagina. A speculum separates the walls of the vagina; it is the same instrument used in a cervical screening test. You can ask for a family member, friend or nurse to be present during the examination.

A pelvic ultrasound uses soundwaves to create a picture of the uterus and ovaries. The soundwaves echo when they meet something dense, like an organ or tumour, then a computer creates a picture from these echoes. A technician called a sonographer performs the scan. It can be done in 2 ways, and often you have both types at the same appointment.

Abdominal ultrasound – The bladder needs to be full to get a clear picture of the uterus, so you will be asked to drink water before the appointment. For the ultrasound, you will lie on an examination table while the sonographer moves a small handheld device called a transducer over your abdomen.

Transvaginal ultrasound – You don’t need a full bladder for this type of ultrasound. The sonographer inserts a transducer wand into your vagina. It will be covered with a disposable plastic cover and gel to make it easier to insert. You may find a transvaginal ultrasound
uncomfortable, but it should not be painful.

If you feel embarrassed or concerned about having a transvaginal ultrasound, talk to the sonographer beforehand. You can ask for a female sonographer or to have someone in the room with you (e.g. your partner, a friend or relative) if that makes you feel more comfortable.

If you have had an abdominal ultrasound, you will usually also need a transvaginal ultrasound as it provides a clearer picture of the uterus.

A pelvic ultrasound appointment usually takes 15–30 minutes. The pictures can show if any masses (tumours) are present in the uterus. If anything appears unusual, your doctor will suggest you have a biopsy.

This type of biopsy can be done in the specialist’s office and takes about 10–15 minutes. A long, thin plastic tube called a pipelle is inserted into your vagina and through the cervix to gently suck cells from the lining of the uterus. This may cause some discomfort, similar to period cramps. Your doctor may advise you to take some pain medicine before the procedure to reduce this discomfort.

The sample of cells will be sent to a specialist doctor called a pathologist for examination under a microscope. If the results of an endometrial biopsy are unclear, you may need another type of biopsy taken during a hysteroscopy.

A hysteroscopy allows the specialist to see inside your uterus, examine the lining for abnormalities and take tissue samples (biopsy). It will usually be done under a general anaesthetic as day surgery in hospital.

The doctor will look inside the uterus by inserting a thin tube with a tiny light and camera (called a hysteroscope) through your vagina into the uterine cavity. Your cervix will also be gently widened (dilated) and some tissue will be removed from the uterine lining (called a dilation and curettage or D&C). You will stay in hospital for a few hours and are likely to have period-like cramps and light bleeding for a few days afterwards.

The tissue sample will be sent to a laboratory, and a specialist doctor called a pathologist will look at the cells under a microscope. The pathologist will be able to confirm whether or not the cells are cancerous, and which type of cancer of the uterus it is.

After diagnosis, you may have blood tests to check your general health. Your doctor may also arrange for you to have one or more imaging tests to see if the cancer has spread outside the uterus. These may include a CT (computerised tomography) scan; MRI (magnetic resonance imaging) scan; and/or PET–CT scan (this combines positron emission tomography with a CT scan). Check with your doctor or medical imaging provider if, and how much, you will have to pay for these tests.

Before having scans, tell the doctor if you have any allergies or have had a reaction to contrast dyes during previous scans. You should also let them know if you have diabetes or kidney disease or if you are pregnant or breastfeeding.

Cancer of the uterus is usually treated with an operation that removes the uterus and cervix (total hysterectomy), along with both fallopian tubes and ovaries (bilateral salpingo-oophorectomy). If your ovaries appear normal, you don’t have any risk factors, and it is an early-stage, low-grade cancer, you may be able to keep your ovaries. If the cancer has spread beyond the cervix, the surgeon may also remove a small part of the upper vagina and the ligaments supporting the cervix.

Most people with cancer of the uterus will have this operation, which removes the uterus, cervix, fallopian tubes and ovaries (as shown by the dotted line). Sometimes one or more pelvic lymph nodes are also removed to help with staging.

A pathologist examines all removed tissue and fluids. The results will help confirm the type of cancer of the uterus, if it has spread (metastasised), and its stage and grade. The cancer may also be tested for particular gene changes.

The surgery will be performed under a general anaesthetic. Your surgeon will discuss the most appropriate surgery for you and explain the risks and benefits.

The type of hysterectomy you have depends on a number of factors, such as: your age and build; the size of your uterus; the tumour size; and the surgeon’s specialty and experience.

Different types of surgery you might have

Keyhole surgery – Also called a laparoscopic hysterectomy, a surgeon inserts a laparoscope (thin tube with light and camera) and instruments through about 4 small cuts in the abdomen. The uterus and other organs are removed through the vagina.

Robotic-assisted hysterectomy – This is a special form of keyhole surgery. The instruments  and camera are inserted through about 4 small cuts, and controlled by robotic arms guided by the surgeon, who sits next to the operating table.

Open surgery – This surgery (also called abdominal hysterectomy or laparotomy) is done through the abdomen. A cut is usually made from the pubic area to the bellybutton. The uterus and other organs are then removed.

Treatment of lymph nodes

Cancer cells can spread from the uterus to the pelvic lymph nodes. If this occurs, your doctor  may recommend you have additional treatment after surgery, such as chemotherapy or radiation therapy. Lymph nodes may be checked in 2 ways:

Lymphadenectomy (lymph node dissection) – For more advanced or higher-grade tumours, the surgeon may remove some lymph nodes from the pelvic area to see if the cancer has spread beyond the uterus.

Sentinel lymph node biopsy – This test helps to identify the pelvic lymph node that the cancer is most likely to spread to first (the sentinel node). While you are under anaesthetic, your doctor will inject a dye into the cervix. The dye will flow to the sentinel lymph node, which will be removed for testing. Sentinel lymph node biopsies are available only in some treatment centres.

What to expect after surgery

When you wake up after the operation, you will be in a recovery room near the operating  theatre. Once you are fully conscious, you will be transferred to the ward.

Tubes and drips – You will have an intravenous drip in your arm to give you medicines and fluid, and a tube (catheter) in your bladder to collect urine (wee). These will usually be removed the day after the operation.

Length of stay – You will stay in hospital for about 1–4 days. How long you stay will depend on the type of surgery you had and how quickly you recover. Most people who have keyhole surgery will be able to go home on the first or second day after the surgery (and occasionally on the day of surgery).

Pain – As with all major surgery, you will have some discomfort or pain. The level of pain will depend on the type of operation. After keyhole surgery, you will usually be given pain medicine to swallow. If you have open surgery, you may be given pain medicine in different ways:

• through a drip into a vein (intravenously)
• via a local anaesthetic injection into the abdomen (a transverse abdominis plane or TAP block)
• via a local anaesthetic injection into your back, either into spinal fluid (a spinal) or into the space around spinal nerves (an epidural)
• with a patient-controlled analgesia (PCA) system, a machine that allows you to press a button for a measured dose of pain relief.

While you are in hospital, let your doctor or nurse know if you are in pain so they can adjust your medicines to make you as comfortable as possible. Do not wait until the pain is severe. After you go home, you can continue taking pain medicine as needed.

Wound care – You can expect some light vaginal bleeding after the surgery, which should stop within 2 weeks. Your treatment team will talk to you about how you can keep the wound/s clean to prevent infection once you go home.

Blood clot prevention – You will be given a daily injection of a blood thinner to reduce the risk of blood clots. Depending on your risk of clotting, you may be taught to give this injection to yourself so you can continue it for a few weeks at home. You may also be advised to wear compression stockings for up to 4 weeks to help the blood in your legs circulate well and prevent clots.

Constipation – The medicines used during and after surgery can cause constipation (difficulty having bowel movements). Talk to your treatment team about how to manage this – they may suggest medicines to help prevent or relieve constipation. Once your surgeon says you can get out of bed, walking around can also help.

Test results – Your doctor will have all the test results about a week after the operation.  Whether more treatment is necessary will depend on the type, stage and grade of the disease, and the amount of remaining cancer, if any. If the cancer is at a very early stage, you may not need further treatment.

Taking care of yourself at home after a hysterectomy

Your recovery time will depend on the type of surgery you had, your age and general health. In most cases, you will feel better within 1–2 weeks and should be able to fully return to your usual activities after 4–8 weeks.

If you don’t have support from family, friends or neighbours, ask your nurse or a social worker at the hospital whether it is possible to get help at home while you recover.

Rest up – When you get home from hospital, you will need to take things easy for the first week. Ask family or friends to help you with chores so you can rest as much as you need to.

Nutrition – To help your body recover from surgery, eat a well-balanced diet that includes a variety of foods. Include proteins such as lean meat, fish, eggs, milk, yoghurt, nuts, and legumes/beans.

Work – You will probably need 4–6 weeks of leave from work, depending on the type of surgery and nature of your job. People who have had keyhole surgery and have office jobs that don’t require heavy lifting can often return to work after 2–4 weeks.

Driving – You will need to avoid driving after the surgery until you are able to move freely without pain. Discuss this issue with your doctor. Check with your car insurer for any exclusions regarding major surgery and driving.

Lifting – You may be advised to avoid heavy lifting (more than 3–4 kg) for 4–6 weeks. This will depend on the way the surgery was done.

Bowel problems – It is important to avoid straining during bowel movements (pooing). Talk to your treatment team about the best way to manage constipation.

Bathing – Your doctor may advise taking showers instead of baths for 4–5 weeks after surgery.

Exercise – Your treatment team will probably encourage you to walk the day of the surgery.  Exercise has been shown to help people manage some treatment side effects and speed up a return to usual activities. Speak to your doctor about suitable exercise. To avoid infection, it’s best to avoid swimming for 4–5 weeks after surgery.

Sex – Sexual intercourse should be avoided for about 8–12 weeks after surgery. Ask your doctor or nurse when you can have sex again, and explore other ways you and your partner can be intimate, such as massage.

Side effects after surgery

Menopause – If your ovaries are removed and you have not been through menopause, removal will cause immediate menopause. Menopause can cause significant emotional and physical changes. For ways to manage menopause symptoms, see Managing side effects.

Impact on sexuality – The changes you experience after surgery may affect how you feel about sex and how you respond sexually. You may notice changes such as vaginal dryness and loss of libido. If you have concerns, you may find it helpful to talk to a psychologist or counsellor.

For more information see ‘Sexuality, Intimacy and Cancer‘.

Lymphoedema – The removal of lymph nodes from the pelvis can stop lymph fluid draining normally, causing swelling in the legs or, sometimes, the vulva. This is known as lymphoedema. The risk of developing lymphoedema is low after most operations for cancer of the uterus, but the risk is higher if you have had a full lymphadenectomy followed by external beam radiation therapy. Symptoms may appear gradually, sometimes years after the treatment.

For more information see ‘Understanding Lymphoedema‘.

Vaginal vault prolapse – This is when the top of the vagina drops towards the vaginal opening because the structures that support it have weakened. Having a hysterectomy does not appear to increase the risk of vaginal vault prolapse in women without pelvic floor issues. Prolapse is more commonly caused by childbirth and weak pelvic floor muscles. Doing pelvic floor exercises several times a day can help to prevent prolapse. Talk to your treatment team about doing these exercises.

Understanding Surgery BookletDownload our booklet ‘Understanding Surgery’

Also known as radiotherapy, radiation therapy uses a controlled dose of radiation to kill or damage cancer cells so they cannot grow, multiply or spread. The radiation is usually in the form of x-ray beams. Treatment is carefully planned to limit damage to the surrounding healthy tissues.

For cancer of the uterus, radiation therapy is commonly used as an additional treatment after surgery to reduce the chance of the disease coming back. This is called adjuvant therapy.

In some cases, radiation therapy may be recommended as the main treatment (e.g. when other health conditions mean you are not well enough for a major operation).

There are 2 main ways of delivering radiation therapy: internally and externally. Some people are treated with both types of radiation therapy. Your radiation oncologist will recommend the course of treatment most suitable for you.

Internal radiation therapy (brachytherapy)

Internal radiation therapy may be used after a hysterectomy to deliver radiation directly to the top of the vagina (vaginal vault) from inside your body. This is known as vaginal vault brachytherapy.

During each treatment session, a plastic cylinder (the applicator) is inserted into the vagina.  The applicator is connected by plastic tubes to a machine that contains a small, radioactive seed (made of metal). Next, this seed moves from the machine into the applicator where it delivers a targeted dose of radiation to the area affected by cancer. After a few minutes, the seed is drawn back into the machine. The applicator is taken out of the vagina after each session.

This type of brachytherapy does not need any anaesthetic. Each treatment session usually takes only 20–30 minutes. You are likely to have 3–6 treatment sessions as an outpatient over 1–2 weeks.

If you are having radiation therapy as the main treatment and haven’t had a hysterectomy, the internal radiation therapy may involve placing an applicator inside the uterus. This is done under anaesthetic or sedation, and may require a short hospital stay.

External beam radiation therapy

External beam radiation therapy (EBRT) directs the radiation at the cancer and surrounding tissue from outside the body. For cancer of the uterus, the lower abdomen and pelvis are treated, but if the cancer has spread (metastasised), other areas may also be treated.

Planning for EBRT may involve several visits to your doctor to have more tests, such as blood tests and scans. Your radiation therapy team will give you instructions on preparing your bowel and bladder before planning scans and treatment sessions.

Each EBRT session lasts about 30 minutes, with the treatment itself taking only a few minutes. You will lie on a treatment table under a large machine known as a linear accelerator, which delivers the radiation. The treatment is painless (like having an x-ray) but may cause side effects.

If you are having EBRT, you will probably have daily treatments, Monday to Friday, for 5–6 weeks as an outpatient. It’s very important that you attend all of your scheduled sessions to ensure you receive enough radiation to make the treatment effective.

Side effects of radiation therapy

The side effects you have will vary depending on the type and dose of radiation, and the areas treated. Brachytherapy tends to have fewer side effects than EBRT. Side effects often get worse during treatment and just after the course of treatment has ended. Short-term side effects usually get better within weeks of finishing treatment.

Short-term side effects

Fatigue – Your body uses a lot of energy to recover, and travelling to treatment can also be  tiring. The fatigue may last for weeks after treatment ends.

Bladder and bowel changes – Radiation therapy can cause inflammation and swelling of the bowel (radiation proctitis) and bladder (radiation cystitis). Bowel movements may be more frequent, urgent or loose (diarrhoea), or you may pass more wind than usual. Less commonly, there may be blood in the faeces (poo or stools); talk to your treatment team if you notice this. You may also pass urine more often or with more urgency.

Nausea and vomiting – Because the radiation therapy is directed near your abdomen, you may feel sick (nauseous), with or without vomiting, for several hours after each treatment. Your
doctor may prescribe anti-nausea medicine to help prevent this.

Vaginal discharge – Radiation therapy may cause or increase vaginal discharge. Let your treatment team know if the discharge smells or has blood in it. Do not wash inside the vagina with water or other fluids as this may cause infection.

Skin redness, soreness and swelling – The vulva and the skin in the groin area may become sore and swollen. The area may look pink or red and feel itchy, and then peel, blister or weep. Your treatment team will recommend creams and pain relief to use. Wash the vulva with lukewarm water or weak salt baths; avoid perfumed products; and wear loose-fitting, cotton underwear.

Long-term or late effects of radiation therapy

Some side effects can continue for longer. Other side effects may not show up until many months or years after treatment. These are called late effects.

Hair loss – You may lose your pubic hair. Sometimes, this can be permanent. Radiation therapy to the pelvis will not affect the hair on your head or other parts of your body.

Bladder and bowel changes – Bowel changes, such as diarrhoea, wind or constipation, and bladder changes, such as frequent or painful urination, can arise months or years after treatment. Bleeding from the bowel or bladder can also occur. In rare cases, there may be loss of bowel control (faecal incontinence) or blockage of the bowel. Let your doctor know about any bleeding or if you have pain in the abdomen and difficulty opening your bowels (pooing).

Lymphoedema – Radiation can scar the lymph nodes and vessels and stop them draining lymph fluid properly from the legs, making the legs swollen. This can occur months or years after radiation therapy. The earlier lymphoedema is found, the easier it is to treat. Look for early signs in the legs, including feelings of tightness or heaviness; tighter clothing; skin pitting; and swelling that comes and goes.

Narrowing of the vagina – The vagina can become drier, shorter and narrower (vaginal stenosis), which may make sex and pelvic examinations uncomfortable or difficult. Your treatment team will suggest ways to prevent this.

Menopause – If you are premenopausal, radiation therapy to the pelvis can stop the ovaries producing hormones, causing early menopause. Your periods will stop, you will no longer be able to become pregnant and you may have menopause symptoms.

Download our booklet ‘Understanding Radiation Therapy’

Chemotherapy uses drugs to kill or slow the growth of cancer cells. The aim is to destroy cancer cells while causing the least possible damage to healthy cells.

Chemotherapy may be used:

• for certain types of cancer of the uterus that are more aggressive
• when cancer comes back after surgery or radiation therapy, to try to control the cancer and to relieve symptoms
• if the cancer does not respond to hormone therapy
• if the cancer has spread beyond the pelvis when first diagnosed
• during radiation therapy (called chemoradiation) or after radiation therapy.

Chemotherapy is usually given by injecting the drugs into a vein (intravenously), often through a drip. You will have a treatment session followed by a rest period. This is called a cycle. You will have up to 6 treatment cycles, with one every 3–4 weeks, so chemotherapy treatment can take several months. Talk to your doctor about how long your treatment will last.

Treatment is usually given to you during day visits to a hospital or clinic as an outpatient or, very rarely, you may need to stay in hospital overnight. Let your oncologist know if you are taking nutritional or herbal supplements as these can interact with chemotherapy and may affect how the drugs work.

Chemotherapy side effects – These vary greatly and depend on the drugs you receive, how  often you have the treatment, and your general fitness and health. Side effects may include: feeling sick (nausea); vomiting; fatigue; hair loss; ringing or buzzing in the ears (tinnitus);
numbness and tingling in the hands and feet (peripheral neuropathy).

Most side effects are temporary and steps can often be taken to prevent or reduce their severity.

Chemotherapy can affect your immune system, increasing the risk of infection. If you develop a temperature over 38°C, contact your doctor or go immediately to the emergency department at your nearest hospital.

Download our booklet ‘Understanding Chemotherapy’

High-grade endometrial cancer is often treated with EBRT in combination with chemotherapy. This is called chemoradiation and it is done to reduce the chance of the cancer coming back after treatment.

The chemotherapy drugs make the cancer cells more sensitive to radiation therapy.

If you have chemoradiation, you will usually receive chemotherapy in the first and last weeks of your radiation treatment. The chemotherapy will usually be given a few hours before the radiation therapy session.

Once the radiation therapy is over, you may have another 3–4 cycles of chemotherapy on its own.

Side effects of chemoradiation include: fatigue; diarrhoea; needing to pass urine more often or in a hurry; cystitis (a type of urinary tract infection); dry skin in the treatment area; numbness and tingling in the hands and feet (peripheral neuropathy); ringing or buzzing in the ears (tinnitus); low blood counts. Low numbers of blood cells may cause anaemia, infections or bleeding problems.

Some side effects are temporary, but others can be permanent.

Talk to your treatment team about ways to manage any side effects.

Hormone therapy may also be called endocrine therapy or hormone blocking therapy.  Hormones such as oestrogen and progesterone are substances that are produced naturally in the body. They help control the growth and activity of cells. Some cancers of the uterus  depend on oestrogen or progesterone to grow. These are known as hormone dependent or hormone-sensitive cancers and they can sometimes be treated with hormone therapy.

Hormone therapy may be recommended for cancer of the uterus that has spread or come back (recurred), particularly if it is a low-grade cancer. It is also sometimes offered as the first treatment if surgery has not been done (e.g. when someone with early-stage, low-grade cancer of the uterus chooses not to have a hysterectomy because they want to have children, or if someone is too unwell for surgery).

The main hormone therapy for hormone-dependent cancer of the uterus is progesterone that has been produced in a laboratory. High-dose progesterone is available in tablet form (usually medroxyprogesterone) or, if you have not had a hysterectomy, through a hormone-releasing intrauterine device (IUD) called a Mirena. A Mirena is placed into the uterus by your doctor.

Other hormone drugs may be available on clinical trials. Talk to your doctor about the risks and benefits of the different methods.

Hormone therapy side effects – Common side effects of progesterone treatment include: breast tenderness; headaches; tiredness; nausea; menstrual changes; and bloating. In high doses, progesterone may increase appetite and cause weight gain. If you have an IUD, it may move out of place and need to be refitted by your doctor.

Immunotherapy is a type of drug treatment that uses the body’s own immune system to fight cancer.

An immunotherapy drug called pembrolizumab (used in combination with the targeted therapy drug lenvatinib, see below) may be an option for some people with endometrial cancer that has spread (metastatic disease) or is no longer responding to treatment with chemotherapy.

Immunotherapy side effects – Common side effects include: fatigue; being or feeling sick (nausea); skin rash and itching; joint pain; diarrhoea; dry eyes; and joint pain.

Rarely, immunotherapy can affect the lungs, bowel or thyroid gland and these side effects can sometimes be life-threatening. It’s important to let your treatment team know about any new or worsening side effects during or after treatment. Don’t try to treat side effects yourself.

Ask your doctor about other recent developments in drugs for cancer of the uterus and whether a clinical trial may be an option for you.

Download our fact sheet ‘Understanding Immunotherapy’

Targeted therapy is a drug treatment that attacks specific features of cancer cells to stop the cancer growing and spreading.

A targeted therapy drug called lenvatinib may be used to treat endometrial cancer that has spread or come back, or to boost the effectiveness of immunotherapy.

Targeted therapy side effects – Common side effects include: fatigue; being or feeling sick (nausea); diarrhoea; constipation; sore mouth; blood pressure changes; appetite loss; bleeding and bruising; skin problems; joint aches; and headache. Less common side effects, such as heart problems and stroke, can also occur. It’s important to tell your doctor about any new or worsening side effects.

Ask your doctor about other recent developments in drugs for cancer of the uterus and whether a clinical trial may be an option for you.

Download our fact sheet ‘Understanding Targeted Therapy’

Palliative treatment helps to improve people’s quality of life by managing symptoms of cancer without trying to cure the disease. Many people think that palliative treatment is only for people at the end of their life, but it can help at any stage of advanced cancer of the uterus. It is about living as long as possible in the most satisfying way you can. Being referred to  palliative treatment does not necessarily mean that you are at the final stages of life.

As well as slowing the spread of cancer, palliative treatment can help to relieve pain and manage other symptoms, such as bowel problems. Treatment may include radiation therapy, chemotherapy, hormone therapy, or immunotherapy (alone or in combination with targeted therapy). Palliative treatment is one aspect of palliative care, in which a team of health professionals aims to meet your physical, emotional, cultural, social and spiritual needs. The team also supports families and carers.

Download our booklet ‘Understanding Palliative Care’

The ovaries produce the hormones oestrogen and progesterone. If both ovaries have been removed or you’ve had radiation therapy to the pelvic area, your body will no longer produce these hormones and you will stop having periods. This is called menopause. For most women, menopause is a natural and gradual process that starts between the ages of 45 and 55. If you have not already entered menopause, these treatments will cause sudden menopause. If you have already been through menopause, the symptoms of menopause may come back.

Menopause symptoms include hot flushes, night sweats, dry or itchy skin, mood swings, trouble sleeping (insomnia), tiredness, aching joints, vaginal dryness, weight gain and bladder problems. You may also have a decreased interest in sex (low libido).

The symptoms of menopause caused by cancer treatment are usually more severe than during a natural menopause because the body hasn’t had time to get used to the gradual decrease in hormone levels.

Menopause may cause other changes in the body. For example, your cholesterol levels may rise, which can increase your risk of heart disease. Over time, your bones may become weak and brittle, and break more easily. This is called osteoporosis. Radiation therapy to the pelvis can also weaken the bones.

Managing menopause symptoms

• Vaginal moisturisers available over the counter from pharmacies can help with vaginal  discomfort and dryness. Talk to your nurse for suggested products.
• Ask your doctor if you need to avoid products containing oestrogen. They can suggest non-hormonal medicines to relieve the symptoms of menopause.
• If your menopause symptoms are severe, talk to your doctor about the risks and benefits of taking menopausal hormone therapy (MHT). Previously called hormone replacement therapy (HRT), MHT is not usually used if you have cancer of the uterus, but may be considered in some cases if other treatments fail to manage symptoms. If you were on MHT when the cancer was diagnosed, your doctor will usually advise stopping its use as oestrogen can cause these cancers to grow.
• Talk to your doctor about having a bone density test or taking medicine to prevent your bones from weakening. Call 1800 242 141 or visit Healthy Bones Australia for more information.
• Ask your doctor for a referral to a menopause clinic if needed.
• Have your cholesterol levels checked. If they are high, regular exercise and a balanced diet may help, or talk to your doctor about cholesterol-lowering drugs.
• Learn meditation and relaxation techniques. These may be helpful in reducing stress and some menopause symptoms.
• Several types of psychological therapies have been shown to help with menopause-related
  anxiety, low mood, sleep troubles and the impact of hot flushes. Talk to a psychologist about the best approach for you.
• Exercise can also help with mood changes and energy levels. Ask your doctor about suitable exercises or see an exercise physiologist or physiotherapist.

Surgery or radiation therapy for cancer of the uterus may mean you are unable to become pregnant. Before treatment starts, ask your doctor or a fertility specialist about what options are available to you if you were hoping to have a baby.

It may be possible to preserve the ovaries (e.g. if you are 45 years or under) and sometimes the uterus, so you can still have children. However, this is an option only in certain cases, and your doctor will explain the risks and benefits.

Learning that your reproductive organs will be removed or will no longer function and that you won’t be able to have children can be devastating. Even if your family is complete or you did not want children, you may still experience a sense of loss and grief. These reactions are normal. Speaking to a counsellor, psychologist, social worker or a cancer nurse about your feelings and individual situation can be helpful. You can also call Cancer Council 13 11 20 to talk to a health professional about your concerns.

Download our booklet ‘Fertility and Cancer’

It is common to feel very tired and lack energy during and after treatment. This can be a side effect of the treatment itself or a symptom of menopause. Travelling to hospitals and clinics for treatment and appointments can be exhausting. Dealing with your emotions can also cause fatigue. Your tiredness may continue for a while after treatment has finished.

Fatigue may affect your ability to keep working or care for your home and family. It may help to talk with your family and friends about how you feel, and discuss ways they can help you.

Managing fatigue

• Do some light exercise, such as walking or stretching, to help increase your energy levels. Check with your doctor if these activities are suitable for you. You can also ask for a referral to an exercise physiologist or physiotherapist.
• Plan your day. Set small, manageable goals so you can rest regularly, and allow yourself plenty of time to get to appointments.
• Ask for and accept offers of help from family and friends (e.g. with shopping, housework, meals and driving). Contact your local council to see what support services they offer.
• Learn to recognise signs of tiredness before you feel exhausted.
• Talk to your employer about taking time off work, reducing hours or working from home.
• Don’t expect to be able to instantly do everything you used to do. Your body is still recovering and it will take time for your energy levels to return.

Download our fact sheet ‘Fatigue and Cancer’

Treatment for cancer of the uterus can cause bladder problems. Most bladder side effects are temporary or can be managed.

Urinary incontinence – This is when you have trouble controlling your bladder and you leak urine (wee). Strengthening the pelvic floor muscles can help control the flow of urine. A  women’s health physiotherapist or continence nurse can develop a bladder training program – ask your doctor for a referral or visit the National Continence Helpline. Using continence pads or special types of absorbent underwear can help you manage leakage.

Radiation cystitis – Radiation therapy can irritate the lining of the bladder. You may feel like  you want to pass urine often or have  a burning sensation when you pass urine. Called radiation cystitis, it usually gets better after treatment. Try to drink plenty of water or use a urinary alkaliser (e.g. Ural) to help reduce the burning sensation. You can buy urinary alkalisers from your pharmacy. Your doctor may also prescribe medicine to treat cystitis.

Blood in urine – The blood vessels in the bladder can become more fragile after radiation therapy. This can cause blood to appear in your urine, even months or years after treatment. Always let your doctor know if you notice new or unusual bleeding.

If you have ongoing incontinence, you may be eligible for subsidised incontinence products through the continence aids payment scheme.

Treatment for cancer of the uterus can affect the way the bowels work. These changes are usually temporary, but for some people, they can be permanent and can have a significant impact on quality of life. Talk to your treatment team if you are finding bowel issues hard to manage.

Constipation – Constipation is when you have difficulty having a bowel movement (pooing) regularly or often. It is important to avoid constipation, especially in the days after surgery, because it may lead to more discomfort or cause you to strain when you’re sitting on the toilet. Talk to your dietitian or doctor about making changes to your diet or taking medicines if you are constipated.

Diarrhoea – Diarrhoea is the frequent passing of loose, watery faeces (poo) from the bowels. A dietitian can suggest changes to your diet to reduce the number of bowel movements.

Radiation proctitis – Radiation therapy can damage the lining of the rectum, causing inflammation and swelling known as radiation proctitis. This can cause a range of symptoms including blood in bowel movements; diarrhoea; the need to empty the bowels urgently; and loss of control over the bowels (faecal incontinence). Radiation proctitis usually gets better after treatment has finished, but it can develop some time after treatment (called a late effect). Talk to your treatment team about your risk of developing radiation proctitis. If you have any ongoing bowel problems, they may refer you to a gastroenterologist.

Blood in bowel movements – Blood vessels in the bowel can become more fragile after radiation therapy. This can cause blood to appear in your faeces, even months or years after treatment. Always seek advice from your specialist or GP if you notice any new or unusual bleeding.

Managing bowel changes

Constipation

• Drink more water – aim to drink at least 8 glasses during the day.
• Eat regular meals throughout the day.
• Try to eat more fibre-rich foods (e.g. wholegrain breads and cereals, legumes such as beans and lentils, vegetables, fruits, nuts and seeds).
• Avoid drinking alcohol.
• Do some gentle exercise, such as walking. Check with your doctor about the amount and type of exercise that is right for you.
• Cut down on sweets, soft drinks, takeaway food, fried foods, potato chips and other savoury snacks.
• Limit foods containing added sugars and salts.
• Take medicines for constipation as directed by your doctor.

Diarrhoea

• Drink plenty of fluids such as water, herbal teas, sports drinks and electrolyte-replacing fluids.
• Avoid drinking alcohol.
• Eat fewer high-fibre foods (e.g. wholegrain breads and cereals, raw fruits and vegetables,  legumes).
• Eat more low-fibre foods (e.g. white rice, white pasta, white bread, potatoes).
• Limit spicy, fatty and greasy foods, as these can make diarrhoea worse.
• Cut down on coffee, cola and other drinks that contain caffeine.
• Choose low-lactose or soy-based dairy products (eating small amounts of cheese and yoghurt is usually okay).
• Ask your doctor about suitable medicines for diarrhoea. Take as directed.

After surgery or radiation therapy to the pelvic area, one or both legs, and/or the vulvar area, may become swollen. Called lymphoedema, this occurs when lymph fluid doesn’t circulate properly and builds up. The swelling may appear during treatment or months or years later.

Lymphoedema can make movement and some types of activities difficult. It is important to maintain a healthy body weight, avoid pressure, injury or infection to the legs, and manage lymphoedema symptoms as soon as possible.

Mild lymphoedema is usually managed with exercise, skin care and a compression stocking. To find a health professional who specialises in the management of lymphoedema, speak to your treatment team or visit the Australasian Lymphology Association.

The skin on the legs may become infected more easily after lymph nodes are removed. A  common skin infection is called cellulitis. Signs of cellulitis include redness, painful swelling, warm skin and fever. If you have any symptoms, see your GP as soon as possible.

To reduce the risk of infection, keep the skin healthy and unbroken, exercise regularly and avoid tight-fitting clothing. Use moisturiser and sunscreen, and avoid scratches, cuts, burns, insect bites, and injections in your legs. Also, keep your feet clean and dry to avoid fungal infections.

If your GP refers you to an allied health professional (such as a physiotherapist) as part of a chronic disease management plan, you may be eligible for a Medicare rebate for up to 5 visits each year. Ask your GP for more details.

Download our fact sheet ‘Understanding Lymphoedema’

Radiation therapy to the pelvic area can cause vaginal tissue to lose its elasticity and shrink, narrowing the vagina (vaginal stenosis). If your ovaries were removed, your vagina may also become dry. These side effects may make it painful to have sex or pelvic examinations. Even if you don’t plan to have sex again, your doctor will need to do regular pelvic examinations after treatment, so it is important to prevent these side effects. Your treatment team may recommend using a vaginal moisturiser or lubricant or a hormone cream (available on prescription and safe with many cancers of the uterus). They may also advise you to use vaginal dilators.

Using vaginal dilators

Vaginal dilators can help keep your vagina open and flexible after treatment. They are made from plastic or silicone and come in a range of sizes. You usually start with the smallest dilator, and as each one becomes more comfortable, you can move on to using the larger dilators.  Make sure any soreness has settled down before you start using dilators (usually 4–6 weeks after your last radiation therapy session).

To use the dilator, find a private space. Apply a water-based lubricant to the dilator, slowly insert it into the vagina, then gently rotate it. Leave the dilator in for 5–10 minutes. You can do this once or twice a day for the first few months, and then 2–3 times a week for several months after that, as advised by your treatment team. You may also like to see a women’s health physiotherapist. If you have a history of sexual trauma, speak with a psychologist or counsellor.

Cancer of the uterus can affect your sexuality in both physical and emotional ways. Some treatments can cause dryness and narrowing of the vagina, which can make sexual penetration difficult or painful. Also, removal of the uterus, cervix and ovaries can change how you experience sexual pleasure and orgasm.

Your treatment team may advise using vaginal dilators, lubricants, moisturisers or hormone creams. It may be helpful to explore ways to orgasm (climax) without penetration or to use masturbation to see what might work for you.

You may lose interest in intimacy and sex (low libido) because of the hormonal changes of menopause, the stress of the cancer experience, the fatigue caused by treatment, and changes in how you feel about your body (body image). It may help to remember that for most people, sex is more than arousal, intercourse and orgasm. It involves feelings of intimacy and acceptance, as well as being able to give and receive love. Closeness and sharing can still be part of your relationship.

If you have a partner and do not feel like having sexual intercourse, or if you find it  uncomfortable, talk openly with them about how you’re both feeling, and take things slowly by starting with hugs or a massage rather than penetrative sex. You may both need to be patient – things often improve with time and practice.

If you have ongoing concerns about how treatment has affected your sexuality, talk to your GP or gynaecological oncologist or ask for a referral to a psychologist or sexual therapist.

Download our booklet ‘Sexuality, Intimacy and Cancer’

After treatment ends, you will have regular appointments with your specialists to monitor your health, manage any long-term side effects and check that the cancer hasn’t come back (recurred) or spread. If you have a low risk of recurrence, your follow-up care may be shared between your cancer specialist and GP, or you may be discharged to your GP with easy access back to your specialist if needed.

During check-ups, you will usually have a pelvic examination and you may have imaging scans. Follow-up appointments will start immediately after treatment, then become less frequent over time. How often you see your doctor will depend on the type and stage of the cancer.

When a follow-up appointment is approaching, many people find that they think more about the cancer and may feel anxious. If you are finding this hard to manage, talk to your doctor or call Cancer Council 13 11 20.

For some people, cancer of the uterus does come back after treatment (called a recurrence). This is why it’s important to have regular check-ups and to immediately report any symptoms (e.g. vaginal bleeding, pain in the abdomen, swelling, unexpected weight loss, unexplained cough), rather than waiting for your next follow-up appointment.

Most cancers of the uterus that come back do so in the first 2–3 years after treatment. If you have had a hysterectomy, cancer of the uterus usually comes back in the vagina or pelvic lymph nodes. It is also possible for the cancer to come back in another part of the body. If the cancer does recur, you will usually be offered further treatment to remove the cancer or help control its growth. 

If you have continued feelings of sadness, have trouble getting up in the morning or have lost motivation to do things that previously gave you pleasure, you may be experiencing depression. This is quite common among people who have had cancer.

Talk to your GP, as counselling or medication – even for a short time – may help. Some people can get a Medicare rebate for sessions with a psychologist. Ask your doctor if you are eligible.

Cancer Council SA offers a free counselling service, call Cancer Council 13 11 20 for more information.

For information about coping with depression and anxiety, visit Beyond Blue or call them on 1300 22 4636. For 24-hour crisis support, visit Lifeline or call 13 11 14.