important information about womb cancer
What is womb cancer?
Womb cancer, also known as endometrial or uterine cancer, is the most common gynaecological cancer in the UK, affecting around 9000 women per year. Most women diagnosed with womb cancer are over 55 years of age and have gone through the menopause, but womb cancer can affect younger women too.
The womb is a hollow pear-shaped organ in the female reproductive system that sits in the pelvis. It is where a baby develops during pregnancy and the lining of the womb is shed during a period. The womb connects to the neck of the womb (cervix) and vagina at the lower part and to the ovaries and fallopian tubes at the upper part.
The womb has 3 layers
- An outer layer called the serosa that covers and protects the womb
- A middle layer of muscle called the myometrium
- An inner layer called the endometrium or lining of the womb
Womb cancer often begins in the lining of the womb when cells begin to grow in an uncontrolled way and form a cancerous tumour, known as endometrial cancer.
Risk factors and prevention
There are 2 hormones produced by the ovaries called oestrogen and progesterone. These hormones control the growth of the lining of the womb and our periods. The balance between these 2 hormones helps stop abnormal growths in the lining of the womb. After the menopause the ovaries stop making these hormones. However, some oestrogen is still produced in body fat.
When too much oestrogen is produced without being balanced or “opposed” by progesterone, the risk of developing womb cancer increases. Many of the risk factors linked to womb cancer are associated with a higher level of oestrogen that has not been balanced by progesterone.
Risk factors increase our chance of developing a disease or medical condition, but they do not mean we will or will not develop it. Prevention means things we can do to try and reduce our chance of developing a condition.
We know there are certain inherited conditions that make womb cancer more likely to develop. Inherited conditions are medical conditions that are passed down through families due to changes in genes. Genes are codes or sets of instructions that give our body information on how each cell develops and grows. When this information is changed, it can lead to uncontrolled or cancerous growths in cells. Inherited conditions are more likely where there is a family history of cancer in close relatives such as parents, siblings, and children.
Lynch syndrome may affect up to 175,000 people in the UK and is linked to 3% of cases of womb cancer. To develop Lynch syndrome you need to have one parent that carries the gene. Someone diagnosed with Lynch syndrome has up to 60% chance of developing womb cancer in their lifetime. Lynch syndrome is also associated with an increased risk of bowel cancer. Those diagnosed with Lynch syndrome undergo regular tests to check for bowel cancer and womb cancer, many will be offered a hysterectomy (operation to remove the womb) to prevent womb cancer once they feel their family is complete.
Lynch syndrome is often diagnosed when a strong family history of bowel or womb cancer is noted. If you feel this may apply to you, please speak to your doctor about being referred to a genetics service. More information on Lynch syndrome can be found here https://www.macmillan.org.uk/cancer-information-and-support/worried-about-cancer/causes-and-risk-factors/lynch-syndrome-ls.
Cowden syndrome is a rare condition that causes multiple small benign growths called hamartomas and is also linked to an increased risk of breast, thyroid and womb cancer.
Weight and physical activity
After the menopause, body fat is responsible for most of a woman’s oestrogen production. Therefore, women who are overweight are more likely to have a higher level of oestrogen in their body that is not balanced with progesterone. It is thought up to 35% of womb cancer cases are linked to being overweight and obesity.
Those who are less active may also have a higher risk of developing womb cancer.
Keeping active and staying a healthy weight will help reduce the chance of developing womb cancer.
Developing womb cancer is more likely in women over 55 years of age.
The following factors have been linked to a possible increased risk of womb cancer as they increase the overall time the body is exposed to oestrogen
- Starting periods at an early age (before age 12)
- Stopping periods at a late age (after age 55)
- Never having children
- Having difficulties with fertility or not able to have children
- Using a particular type of hormone replacement therapy (HRT) which only contains oestrogen. This is not normally given to women who still have a womb and have not had a hysterectomy.
- Using a drug called tamoxifen which is a hormonal treatment for breast cancer. This is used to stop breast cancer from recurring but there is a small risk of uncontrolled growth of the lining of the womb. When you start tamoxifen, your doctor will discuss this with you. For most women the benefits of reducing the risk of breast cancer outweighs the risk of developing womb cancer so we would not advise you stop this medication without discussion with your breast cancer team. If you take tamoxifen and have any abnormal vaginal bleeding, please discuss this with your doctor urgently.
The following may reduce the risk of developing womb cancer
- Breastfeeding your children
- Having your last child at a later age
- Using combined hormonal contraception
Some medical conditions increase the risk of developing womb cancer:
Polycystic ovary syndrome (PCOS)
PCOS is associated with symptoms such as weight gain, irregular or less frequent periods, acne and facial hair. It causes multiple small cysts to develop in the ovaries. Those diagnosed with PCOS may have less cycles where they produce eggs (ovulation) and are more likely to develop type 2 diabetes, which both increase the risk of womb cancer.
Type 2 diabetes
Type 2 diabetes is a condition where the body becomes more resistant to a hormone called Insulin. Insulin is responsible for controlling the level of sugar in the blood. As the cells in our body are not responding to insulin, the body makes even more insulin to try and help control the sugar. These high levels of insulin and sugar cause the cells in the lining of the womb to grow more and increases the risk of womb cancer.
The most common symptom of womb cancer is vaginal bleeding after the menopause (post-menopausal bleeding).
Other symptoms include
- Abnormal vaginal bleeding in between periods or after sexual intercourse
- Heavy periods
- Abnormal pink or watery vaginal discharge
- Blood in the urine (haematuria)
- Pain in the tummy (abdominal pain)
There are many other conditions that are not cancer which may cause the symptoms above. However, if you are experiencing any of these it is important that you see your GP.
let’s talk womb cancer
Diagnosis and Investigations
If you have any of the symptoms of womb cancer, you should contact your GP.
When you see your GP, they may ask you questions about your symptoms and your general health. They may also ask to examine you, which might include a speculum and internal examination (similar to having a smear test).
Your GP may request for you to have blood tests or an ultrasound scan or they may decide to refer you to see a specialist. Your GP might decide that this referral is urgent, in which case you should see a specialist within two weeks.
When you see the specialist, they will ask you questions about your symptoms and your medical history. They may also examine you, and arrange for you to have a transvaginal (internal) ultrasound scan.
A transvaginal ultrasound scan is a scan performed by a trained sonographer. It uses sound waves to take pictures of your organs and is the same type of scan that is used when women are pregnant. In this case, it is usually performed vaginally, although sometimes an abdominal scan is also needed. The sonographer will gently insert the probe into your vagina. It is not painful but may feel unusual or slightly uncomfortable. The scan takes around 10 minutes to complete.
After you have had the ultrasound scan, the specialist may recommend that you have a hysteroscopy and/or a biopsy of the lining of the womb.
Hysteroscopy is a camera test to look inside the womb. Your doctor or nurse will gently put a speculum (plastic or metal device) into your vagina so that they can see your cervix (neck of the womb). The doctor or nurse will then pass the hysteroscope, a tiny camera on the end of a thin telescope, through the cervix into the womb. Some fluid is passed through the hysteroscope so that your doctor or nurse can see the lining of your womb more clearly. They may wish to take a biopsy (small sample of cells) from the lining of the womb.
Hysteroscopy can be quite uncomfortable, and some women find it painful. You may wish to take painkillers before the procedure and some doctors are able to offer local anaesthetics or other painkillers during the procedure. A small number of women find the pain is too much and may need a general anaesthetic for the procedure. Many women experience period-type cramping pains after their procedure and women often report mild vaginal bleeding for up to a week afterwards.
Sometimes the doctor may think you need a biopsy of the lining of the womb. This may be done after or instead of the hysteroscopy procedure. To do this, the doctor or nurse will need to put a speculum (plastic or metal device) into your vagina. They will then pass a thin plastic tube through the neck of the womb into your womb and gently suction out a small sample of cells (biopsy) from the lining of your womb. This can cause cramping pain during the procedure, but it is quite quick and is normally over in less than a minute.
The doctor or nurse will then send the biopsy off to the laboratory for them to look at the cells under a microscope. The results are usually back within two weeks.
Types, grades & stages
Types of womb (endometrial) cancer
The majority of people who have investigations will not have womb cancer. There are several different types of womb cancer, the most common of which (95%) is called adenocarcinoma and starts in the lining of the womb. Adenocarcinomas can be sub-classified as endometrioid, uterine serous or clear cell carcinomas. These different types refer to the type of cells that form the cancer. Other rarer types of womb cancer include uterine sarcoma and uterine carcinosarcoma which start in the muscle layer of the womb.
Grade of womb cancer
The grade of the cancer is how abnormal the cells look under a microscope. This gives the medical team an idea of how quickly the cancer might grow or whether it is likely to spread. Womb cancer can be classified as Grade 1, 2 or 3. Grade 1 cancers tend to be slower growing and are less likely to spread. Grade 3 cancers tend to be faster growing and are more likely to spread.
The stage of a cancer is a measure of how big the tumour is and whether it has spread.
Stage 1 (either 1A or 1B) means that the cancer is within the womb and has not spread outside of the womb.
Stage 2 means that the cancer has grown into the cervix (the neck of the womb).
Stage 3 means that has spread outside of the womb but is still within the pelvis. These can be stage 3A, 3B or 3C.
Stage 4 (A or B) means that the cancer has spread outside of the pelvis to other areas of the body.
Treatment options for womb cancer
Your medical team will consider the type, grade, and stage of your cancer, as well as any other medical conditions you have to decide what is the best treatment option for you. These decisions are made by a team of lots of different specialists, called a multi-disciplinary team or MDT.
Most people with womb cancer have surgery to remove the womb and cervix (a total hysterectomy). Usually, both tubes and ovaries are removed at the same time (bilateral salpingo-oophorectomy). Sometimes your surgeon will also remove other tissue from the pelvis, such as surrounding lymph nodes (glands), tissue from around the womb or from the top of the vagina. Sometimes surgery for early stage cancer can be done by keyhole (laparoscopic or robotic) rather than through an open operation.
For more information on different types of surgery, what to expect or how to prepare for surgery, the Cancer Research UK has good information which you can find at:
Chemotherapy is a type of medication used to kill cancer cells. It is offered after surgery for some types of womb cancer (such as clear cell) and if the cancer is high-grade. It is also sometimes offered as a first line treatment for advanced disease. Chemotherapy medications are given through a drip into a vein and you may need to stay in hospital for several hours or sometimes overnight. There are a few different chemotherapy drugs that are given for womb cancer and sometimes two or three can be given in the same course.
Chemotherapy is well known to cause side effects. The nature of these often depends on which drug is given. They may include nausea, weight loss, hair loss, tiredness and alterations to bowel movements. Chemotherapy affects the immune system so you may be more susceptible to infections and infections may make you more unwell than they would normally. Your medical team will provide you with information about the side effects specific to the drugs you are given and they will give you contact details of who to contact if you think you might be unwell.
Radiotherapy uses high-energy rays of radiation (x-rays) to directly kill cancer cells. You might be offered this treatment after surgery to try to reduce the chance of the cancer coming back. Other reasons why radiotherapy might be used are that the cancer was not completely removed at surgery or that surgery is not possible, perhaps because of advanced cancer. There are different ways that radiotherapy can be given to treat womb cancer. It can be given externally to the pelvis from a machine that moves around the couch, known as external beam radiotherapy. Alternatively, it can be given internally by a small rod that is inserted into the vagina. This is known as brachytherapy.
Undergoing radiotherapy is not painful but there can be side effects, including diarrhoea, tiredness, dryness or sores in the vagina or an irritable bladder.
For advanced womb cancer, in those who are too unwell for surgery, or for whom surgery is very high risk, hormone treatment is sometimes considered. This is usually in the form of progesterone tablets or a Mirena coil (a small device that is inserted into the womb and releases the progestin hormone locally to the womb lining). The Mirena coil may also be considered in those who have not yet gone through the menopause, have early stage cancer and who wish to preserve their fertility.
There are very few side effects to the Mirena coil. Some women find it painful when it is put in and a period-like pain might last for a few days afterwards. The Mirena coil does not always work as a treatment and some women, if they are fit enough, may still need to have a hysterectomy further down the line.
Ongoing care and recurrence
After your surgery or treatment, you will usually be followed-up for a period afterwards. This might be with either your surgeon or your cancer doctor, depending on the treatment you have had. When you are seen at follow-up, you will be asked about how you are getting on, whether you have any symptoms and you may be examined. Further scans or blood tests can be arranged for you if there are any worrying symptoms. Your medical team will decide how often they need to see you and for how long they need to follow you up. In between follow-up appointments, if you have any unexpected symptoms, such as bleeding or brown discharge, pain, weight loss or changes to your bowels or passing urine, you should contact your medical team.
Patient Initiated Follow Up (PIFU)
Many teams across the country use Patient Initiated Follow Up (PIFU) as part of follow up care after treatment for womb cancer. This means that instead of having regular follow up appointments at the hospital, women only contact their clinical team if they have concerns or new symptoms. Evidence suggests that having regular follow up appointments at the hospital does not prevent the cancer returning (recurrence) or help diagnose a recurrence any earlier. PIFU programs work just as well, and, instead symptoms and concerns are addressed more quickly if women report them as they happen.
Usually, the point of contact within the clinical team is the Clinical Nurse Specialist. They also have lots of information and resources to help support people after womb cancer treatment. When there is a concern, they will help arrange an appointment with the clinical team for a checkup.
When to call the clinical team:
- If there are any ongoing problems following treatment that require help and support (such as treatment side effects, emotional, sexual or practical concerns)
- If there are new symptoms that cause concern such as:
- Vaginal bleeding and/or discharge
- Bleeding after sex
- Persistent pelvic or abdominal pain
- Persistent abdominal bloating
- Leg swelling
- Unexplained weight loss
New symptoms do not automatically mean that the cancer has returned but they do require further assessment. It is important to remember that it is common to get coughs, colds, aches and pains as before and these are best discussed with your GP.
The main reason for follow-up of patients who have had womb cancer is so that if there is a recurrence of the cancer, it can be detected early. If womb cancer comes back within the pelvis, it can sometimes be treated by further, more extensive surgery. Depending on previous treatment, chemotherapy and radiotherapy may be offered. Hormone therapy can also be given.
If your womb cancer has come back it can be a shocking and frightening time. You may be worried that the cancer will shorten your life. It is often possible to treat the cancer again. In some cases, the treatment may aim to get rid of the cancer again, in others, it can be to control the cancer, which can sometimes be for many months or years. Your consultant will discuss this with you and the treatment options available to you.
Facing treatment again can be daunting, especially if you had a tough time previously and you may be worried about experiencing the side effects of these treatments. Please speak to your CNS or medical team so that they can work with you to try and alleviate your concerns and make your treatment as manageable as it can be.
Things that may help you cope when adjusting to the cancer returning the prospect of further treatment could include speaking to those close to you about how you are feeling and accepting offers of help. Talking to your CNS about any specific worries or fears that you don’t feel able to discuss with those close to you is also an option. Set achievable goals and plan things you enjoy doing between treatments – prioritise activities that make you feel good.
Please see our Support section for more information on sources of support.