Cancer of the uterus

The uterus, or womb, is where a baby grows during pregnancy. The uterus is about the size and shape of a hollow, upside-down pear and is part of the female reproductive system.

Cancer of the uterus occurs when cells in any part of the uterus become abnormal, grow out of control and form a lump called a tumour. Each year, about 3,400 Australian women are diagnosed with uterine cancer, and most are over 50 years old. Uterine cancer is the fifth most common cancer in women and the most commonly diagnosed gynaecological cancer in Australia.

Anyone with a uterus can get uterine cancer, including women, transgender men, non-binary people and people with intersex variations.

Signs and symptoms of cancer of the uterus

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 pain, unexplained weight loss, difficulty urinating or a change in bowel habit.

Any of these symptoms can happen for other reasons, but it is best to see your doctor for a check-up.

Risk factors of cancer of the uterus

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

• Age – uterine cancer is most common in women over 50 years old 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 – including having diabetes, having previous pelvic radiation therapy for cancer in the pelvic area and 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 – including starting periods before the age of 12, going through menopause after the age of 55, taking some types of oestrogen-only menopause hormone therapy (MHT) 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.

Tests for cancer of the uterus

Your doctor will usually start with a physical examination and ultrasound of the pelvic area, but cancer of the uterus can only be diagnosed by removing a tissue sample for testing (biopsy). Cervical screening tests (formerly called Pap smears or tests) are not used to diagnose this cancer.

• Pelvic examination – the doctor will feel your abdomen (belly) to check for swelling and any masses. To check your uterus, the doctor will place 2 fingers inside your vagina while pressing on your abdomen with their other hand.
• Pelvic ultrasound – uses soundwaves to create a picture of the uterus and ovaries. A technician called a sonographer performs the scan, which can be done in two ways (abdominal and transvaginal).
• Endometrial biopsy – 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, which are sent to a specialist doctor for examination.
• Hysteroscopy and biopsy – a hysteroscopy allows the specialist to see inside your uterus, examine the lining for abnormalities and take tissue samples (biopsy). The doctor uses surgical instruments to gently widen (dilate) the cervix and then removes some tissue from the uterine lining to examine for abnormalities.

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 scan – you will usually have a CT (computerised tomography) scan of your chest, abdomen and pelvis.
• MRI scan – uses a powerful magnet and radio waves to create detailed cross-sectional pictures of the inside of your body.
• PET scan – you will be injected with a small amount of a glucose (sugar) solution, to allow cancer cells to show up brighter on the scan.

Check with your doctor or medical imaging provider if, and how much, you will have to pay for these tests.

Types of cancer of the uterus

Endometrial cancers – around 95 per cent of cancers of the uterus

This cancer begins in the cells in the lining of the uterus (called the endometrium). Endometrial cancer is divided into four main subtypes.

Knowing these subtypes helps the doctor to work out what, if any, treatment is needed after surgery. Tests on tissue samples collected before or during surgery help the doctor to work out the subtype. The four subtypes are:

• POLE mutant – usually treated with surgery only; often has a good outcome
• mismatch repair deficient (MMRd) – additional treatment like immunotherapy may be needed after surgery; may be inherited
• p53 abnormal – usually needs treatment after surgery
• no specific molecular profile (NSMP) – may need treatment after surgery

Uterine sarcomas – around 5 per cent of cancers of the uterus

These are rare soft tissue sarcomas that develop in the cells in the muscle of the uterus or the connective tissue. There are 3 types:

• endometrial stromal sarcoma
• leiomyosarcoma
• undifferentiated sarcoma

Stages and grades of cancer of the uterus

Staging is a way to describe the size of the cancer and whether it has spread to other parts of the body. In some cases, the scans can show if the cancer has spread, but it is often not possible to be sure of the stage until after surgery.

Grading describes how the cancer cells look compared with normal cells and estimates how fast the cancer is likely to grow.

Knowing the stage and grade helps your doctors recommend the best treatment for your situation. Uterine sarcomas are staged differently, so discuss this with your doctor.

Stages

The four stages of endometrial cancers may be divided into sub-stages, such as A, B and C, which indicate increasing amounts of tumour.

• Stage 1 (early or localised cancer) means the cancer is found only in the uterus.
• Stage 2 (regionalised cancer) means the cancer has spread from the uterus to the cervix.
• Stage 3 (regionalised cancer) means the cancer has spread beyond the uterus/cervix to the ovaries, fallopian tubes, vagina, or lymph nodes in the pelvis or abdomen.
• Stage 4 (metastatic or advanced cancer) means the cancer has spread further, to the bladder, bowel or rectum, throughout the abdomen, to other parts of the body such as the bones or lung, or to lymph nodes in the groin.

Ask your doctor or nurse to explain the stage of the cancer. You can also read more from Cancer Council about diagnosing cancer of the uterus.

Grades

• Grade 1 (low grade) The cancer cells look slightly abnormal and are slow growing.
• Grade 2 (moderate grade) The cancer cells look moderately abnormal and are growing at a moderate rate.
• Grade 3 (high grade) The cancer cells look more abnormal and tend to be faster growing than lower-grade cancers.

Prognosis and survival rates of cancer of the uterus

Prognosis means the expected outcome of a disease. You may wish to discuss your prognosis with your doctor, but it is not possible for anyone to predict the exact course of the disease. Instead, your doctor can give you an idea about the general outlook for people with the same type and stage of cancer of the uterus.

To work out your prognosis, your doctor will consider:

• test results
• the type of cancer of the uterus
• the rate and depth of tumour growth
• the likelihood of response to treatment
• factors such as your age, level of fitness and medical history.

In general, the earlier cancer of the uterus is diagnosed, the better the prognosis. Most early-stage endometrial cancers have high survival rates.

If cancer is found after it has spread to other parts of the body (advanced cancer), there is also a higher chance of the cancer coming back after treatment or continuing to grow.

Treatment of cancer of the uterus

Cancer of the uterus is often diagnosed early, before it has spread. In many cases, surgery will be the only treatment needed. If cancer has spread beyond the uterus, radiation therapy, chemotherapy or hormone therapy may also be used.

Read more from Cancer Council about treating cancer of the uterus.

Surgery

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 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.

Radiation therapy

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 if other health conditions mean you are not well enough for a major operation.

There are 2 main ways of delivering radiation therapy – internally or externally. Some people are treated with both types of radiation therapy.

Chemotherapy

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

• for certain types of cancer of the uterus
• 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 (chemoradiation) or after radiation therapy.

Chemoradiation

High-risk endometrial cancer is often treated with external beam radiation therapy in combination with chemotherapy to reduce the chance of the cancer coming back after treatment is over. When radiation therapy is combined with chemotherapy, it is known as chemoradiation. The chemotherapy drugs make the cancer cells more sensitive to radiation therapy.

Hormone 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 can sometimes be treated with hormone therapy.

Hormone therapy may be recommended for uterine cancer 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.

Managing side effects of cancer of the uterus

All cancer treatments can have side effects. Your treatment team will discuss these with you before you start treatment. Talk to your doctor or nurse about any side effects you are experiencing. Some side effects can be upsetting and difficult, but there is help if you need it. Call Cancer Council on Tel. 13 11 20 or contact cancer support to speak with a caring cancer nurse.

Menopause

If both ovaries have been removed or if you’ve had radiation therapy to the pelvic area, 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. 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.

Fertility

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 may not 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 not unusual. Speak to a counsellor or call Cancer Council Tel. 13 11 20 to talk to a health professional about your concerns.

Fatigue

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.

Bladder changes

Treatment for cancer of the uterus can cause bladder problems. This can include:

• Urinary incontinence – when you have trouble controlling your bladder and you leak urine (wee). Strengthening the pelvic floor muscles can help control the flow of urine.
• Radiation cystitis – you may feel like you want to pass urine often or have a burning sensation when you wee. This usually gets better after treatment.
• Blood in your urine – blood can appear in your urine, even months or years after treatment. Always let your doctor know if you notice new or unusual bleeding.

Bowel changes

Treatment for cancer of the uterus can affect the way the bowels work, including:

• constipation – when you have difficulty having a bowel movement regularly
• diarrhoea – the frequent passing of loose, watery faeces from the bowels.
• radiation proctitis – damage to the lining of the rectum, causing inflammation and swelling
• blood in bowel movements – blood can 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.

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.

Lymphoedema and cellulitis

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.

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.

Sex and cancer of the uterus

Cancer of the uterus can affect your sex life 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. 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).

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.

Living with advanced cancer

Advanced cancer usually means cancer that is unlikely to be cured. Some people can live for many months or years with advanced cancer. During this time palliative care services can help.

Most people continue to have treatment for advanced cancer as part of palliative care, as it helps manage the cancer and improve their day-to-day lives. Many people think that palliative care is for people who are dying but palliative care is for any stage of advanced cancer. There are doctors, nurses and other people who specialise in palliative care.

Treatment may include chemotherapy, radiation therapy or another type of treatment. It can help in these ways:

• slow down how fast the cancer is growing
• shrink the cancer
• help you to live more comfortably by managing symptoms, like pain.

Treatment depends on:

• where the cancer started
• how far it has spread
• your general health
• your preferences and what you want to do.

Ask your doctor about treatment and palliative care services that may help you.

Support for carers, family and friends of someone with cancer of the uterus

Caring for someone with cancer can be difficult sometimes. If you are caring for someone with cancer, these organisations can help:

• Cancer Council – Information and support line Tel. 13 11 20 (or 13 14 50 for an interpreter) – to speak to an experienced cancer nurse
• Cancer Council – Caring for someone with cancer
• Carer Gateway Tel. 1800 422 737
• Carers Australia
• Carers Victoria Tel. 1800 514 845 

Where to get help

• Your GP (doctor)
• Cancer Council Victoria
  • Information and support line Tel. 13 11 20 (or 13 14 50 for an interpreter) – to speak to an experienced cancer nurse
  • Understanding cancer of the uterus
  • Guide to best cancer care for endometrial cancer
  • Fertility and cancer
  • Sexuality, intimacy and cancer
  • Cancer Council Victoria, My Cancer Guide - Find support services that are right for you.
• NURSE-ON-CALL Tel. 1300 606 024
• National Continence Helpline Tel. 1800 330 066
• Counterpart Tel. 1300 781 500
• Australian Gynaecological Cancer Foundation