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 3,200 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 and having endometrial hyperplasia.
• Family history – having one or more close blood relatives diagnosed with uterine or ovarian cancer, or inheriting a genetic condition such as Lynch syndrome or Cowden syndrome.
• 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 may do some tests to check for cancer of the uterus, including:

• 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.
• 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 – this type of biopsy is taken during a hysteroscopy. The doctor uses surgical instruments to gently widen (dilate) the cervix and then removes some tissue from the uterine lining to examine for abnormalities.

Your doctor might ask you to have further tests. These can include:

• 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.
• Blood tests – which may include a full blood count and a tumour marker test.

Types of cancer of the uterus

Endometrial cancers – around 95 per cent of all uterine cancers

Cancers that begin in cells in the lining of the uterus (endometrium) are called endometrial cancers. There are 2 main types:

• Type 1 cancers (linked to an excess of oestrogen)
• Type 2 cancers (not linked to oestrogen)

With advances in testing and treatment, however, endometrial cancer is increasingly being categorised according to four subtypes based on the particular gene changes in the cancer cells (see below).

Uterine sarcomas – around 5 per cent of all uterine cancers

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

Stages

The stage of a cancer means how far it has grown in your body. Uterine sarcomas are staged differently, so discuss this with your specialist.

• Stage 1 means the cancer is found only in the uterus.
• Stage 2 means the cancer has spread from the uterus to the cervix.
• Stage 3 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 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

The grade of the cancer means how quickly a cancer might grow. Knowing the stage and grade helps your doctor work out the best treatment plan for your situation. Low grades mean the cancer cells look slightly abnormal, while high grades mean the cancer cells look more abnormal. High grade cancers tend to be more aggressive than lower-grade cancers.

Prognosis and survival rates of cancer of the uterus

When someone is diagnosed with cancer of the uterus, their doctor will give them a prognosis. A prognosis is the doctor’s opinion of how likely the cancer will spread and the chances of getting better. A prognosis depends on the type and stage of cancer, as well as the person’s age and general health.

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), the prognosis is not as good and there is also a higher chance of the cancer coming back after treatment or continuing to grow.

If you have cancer of the uterus, your doctor will talk to you about your individual situation when working out your prognosis. Every person’s experience is different, and there is support available to you.

Treatment of cancer of the uterus

Surgery

In many cases, surgery will be the only treatment needed. 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.

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 uterine cancer
• 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. It may be possible to preserve the ovaries and sometimes the uterus so you can still have children. However, this is not standard treatment and is an option only in certain cases.

You may wish to talk about the possibility and options of fertility preservation with your doctor before treatment begins.

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 urine (wee) leaks from your bladder without your control.
• Radiation cystitis – you may feel like you want to pass urine often or have a burning sensation when you wee.
• Blood in your urine – blood can appear in your urine, even months or years after treatment.

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.

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.

Sexuality and cancer of the uterus

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. 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