Definition

Gynaecological sarcomas, sometimes shortened to gynae sarcomas occur in the female reproductive system: the uterus (womb), ovaries, vagina, vulva and fallopian tubes. You may also hear the term uterine sarcoma. They can affect women of any age.

Signs and symptoms

Symptoms of gynaecological sarcomas can vary depending on the size and location of the tumour. They may include:

  • Heavy periods or bleeding in between periods
  • An enlarging fibroid
  • Vaginal bleeding after the menopause
  • Blood in vaginal discharge
  • Abdominal pain and bloating
  • A noticeable lump on a section of the vulva

Symptoms can be confused with more common gynaecological conditions for example, problems with contraceptive devices such as the coil, menopause, post menopause symptoms, and fibroids. Most women with these symptoms will be referred to a gynaecologist by their GP.

Types of diagnostic scans

X-ray

Uses x-radiation to take images of dense tissues inside the body such as bones or tumours

Ultrasound

A scan that uses sound waves to create images from within the body. A scanning microphone is moved over the part of the body that is being scanned, gel is placed on the skin beforehand to help the scan work better.

Trans-vaginal Ultrasound

An internal ultrasound scan; a probe is placed inside the vagina to get a closer look at the pelvic organs that are being examined

Hysteroscopy

A procedure used to examine the inside of the uterus (womb). A narrow tube with a telescope at the end called a hysteroscope is inserted through the vagina to take images of the womb.

CT

The Computer Tomography (CT) scan takes a number of x-rays to make a 3D image of an affected area

PET

The Positron Emission Tomography (PET) scan shows up changes in tissues that use glucose as their main source of energy – for example, the brain or heart muscle. It involves an injection of a very small amount of a radioactive drug into the body. The drug travels to places where glucose is used for energy and shows up cancers because they use glucose in a different way from normal tissue.

MRI

Magnetic Resonance Imaging (MRI) uses magnets to create an image of the tissues of the body.

Histopathology

Examination of a tissue sample by a pathologist under a microscope to identify disease

Blood tests

Laboratory analysis of a blood sample.

Understanding the diagnosis

A diagnosis of gynae sarcoma should be confirmed by a specialist sarcoma pathologist who will identify the type of sarcoma and the stage and grade of the tumour. Identifying the stage and grade of a cancer means your doctor can advise on the best course of treatment for you. It also describes the cancer in a common language which is useful when your doctor is discussing your case with other doctors or healthcare professionals. The stage of cancer is measured by how much it has grown or spread which can be seen on the results of your tests and scans. The results from a biopsy can tell the grade of the cancer.

Grading

  • Low-grade means the cancer cells are slow-growing, look quite similar to normal cells, are less aggressive, and are less likely to spread
  • Intermediate-grade means the cancer cells are growing slightly faster and look more abnormal
  • High-grade  means the cancer cells are fast growing, look very abnormal, are more aggressive and are more likely to spread

Staging

The staging system used to see how far a gynaecological sarcoma has spread is called the FIGO system. This is different from the staging system of most types of cancer and is specifically used to stage cancers of the cervix, uterus, ovary, vagina and vulva.

  • Stage 1a means the cancer is small (less than 5cm) and has not spread to other parts of the body
  • Stage 1b means the cancer is larger than 5cm and has not spread to other parts of the body
  • Stage 2a means the cancer is of any grade, usually larger than stage one and has spread to other parts of the female reproductive system
  • Stage 2b means the cancer has spread to tissues in the pelvis other than the female reproductive system
  • Stage 3a means a high grade cancer that has spread to tissues in the abdomen in one site
  • Stage 3b means a high grade cancer that had spread to tissues in the abdomen in more than one site
  • Stage 3c means the cancer has spread to the lymph nodes
  • Stage 4a means a cancer of any grade or size that has spread to the bladder and/or rectum (back passage)
  • Stage 4b means a cancer of any grade or size that has spread to a distant part of the body from the original tumour, eg the lungs

Treatment

Your case will be managed by a team of experts from a wide range of health care professions called a multidisciplinary team (MDT). Your MDT will include your key worker or clinical nurse specialist, surgeon and other healthcare professionals involved in your care. Your MDT will support you throughout your treatment to ensure you get the right treatment as and when you need it.

The national guidelines in England and Wales recommend that a sarcoma MDT is involved at an early stage of treatment for women with gynaecological sarcomas.

If your gynaecological sarcoma is diagnosed before surgery, following investigations and tests, your treatment should be managed jointly by a sarcoma MDT and a gynaecological oncology (cancer) MDT. Surgery for gynaecological sarcoma should ideally be carried out by a surgeon with specialist expertise in gynaecological cancers, working together with sarcoma specialists to ensure you get the right treatment.

If your gynaecological sarcoma is diagnosed after surgery, you should be referred immediately to a sarcoma MDT who will review your case, manage your ongoing care, and decide on the best treatment options available to you in the future.

Sometimes, the gynaecological team or gynaecological oncology team do not refer women with gynaecological sarcomas to a sarcoma MDT.  Always check whether your case has been referred to a sarcoma MDT and request that this is done. Patients who are being treated under a private gynaecologist should also be referred to a sarcoma MDT. For more information and advice, contact Sarcoma UK.

In Scotland, women with gynaecological sarcomas are treated by the gynaecological cancer specialist team.

In Northern Ireland, the consultant gynaecologists consult the sarcoma oncologist to discuss any possible gynaecological sarcoma diagnosis.

Types of treatment

The type of treatment you receive will depend on the stage and grade of your cancer, the type of gynaecological sarcoma you have, and when it is diagnosed (before or after surgery).

Surgery

In a lot of cases, the first treatment method for gynaecological sarcoma is surgery to remove the female reproductive organs called a hysterectomy. The main type of hysterectomy performed is a total abdominal hysterectomy with bilateral salpingo-oophorectomy - a hysterectomy that involves taking the fallopian tubes (salpingectomy) and the ovaries (oophorectomy).

Some pre-menopausal women with a uterine leiomysarcoma may retain their ovaries if they wish. This operation is known as a total abdominal hysterectomy - an operation to remove the uterus and cervix but not the ovaries and fallopian tubes. You can discuss this option with your doctor.

In younger women who are still having their periods, removal of the ovaries will bring on early menopause and lead to a loss of fertility. Please speak to your doctor prior to surgery to discuss your options for preserving your fertility. There is information on organisations that can offer you advice and support on early menopause and the loss of fertility here.

Radiotherapy

This treatment uses high-energy radiation beams to destroy cancer cells delivered as external beam radiotherapy or occasionally delivered internally with brachytherapy, which involves putting a solid radioactive source close to, or placed into, the tumour. Radiotherapy is not commonly used in the adjuvant setting for uterine sarcoma but it may be used on leiomyosarcomas or endometrial stroma; sarcomas that have extended outside the uterus into the pelvic region. In this case, the aim is to kill off any local cancer cells which remain in the area of the tumour.

Chemotherapy

This treatment uses anti-cancer drugs to destroy cancer cells. Not all gynaecological sarcomas respond well to this type of treatment and it is not commonly used to treat endometrial stromal sarcoma. It is mostly used to treat high grade leiomyosarcomas and undifferentiated endometrial sarcomas that have spread to other parts of the body. Some chemotherapy drugs used for gynaecological sarcoma (particularly leiomyosarcomas) include doxorubicin, gemcitabine, doxetaxel, trabectidin, darcarbizine and pazopanib. Less frequently, ifosfamide is used to treat undifferentiated endometrial sarcoma.

You will be given more information about the type of treatment most suitable for you by your treatment team.

Hormone treatment

Some gynaecological sarcomas react to hormones oestrogen and progesterone; these hormones feed the cancer and make the cancer grow. 50% of leiomysarcomas in the uterus are hormone positive and endometrial stromal tumours are almost always hormone positive. Ideally, your tumour should be hormone tested after your initial surgery and the results will either be positive or negative. You can ask your oncologist to confirm whether your tumour has been tested or not.

Hormone therapy or anti-oestrogen therapy, uses types of drugs called aromatase inhibitors (AI) or progesterone that stops oestrogen being made in the fatty tissues and can help prevent the tumour growing. This treatment may be used if there is oestrogen present in the tumour. Your treatment team will advise you on whether this is an appropriate treatment for you.

If you have previously been on hormone replacement therapy, please speak to your doctor to enquire as to whether this type of treatment is appropriate for you.

Women who are being treated with aromatase inhibitors may have a higher risk of osteoporosis. You may want to talk to your doctor about exploring the use of bisphosphonate therapy to protect your bone density levels whilst on this type of treatment. Women on this type of treatment should have regular bone density scans to monitor their bone density levels.

 

Side effects of treatment

You may experience side effects from your treatment. Please speak to your clinical nurse specialist if your symptoms are troublesome or persistent.

Side effects from a hysterectomy may include:

  • Bladder and bowel disturbances
  • Abnormal vaginal discharge
  • Menopausal symptoms
  • Emotional effects due to loss of fertility

Side effects from radiotherapy may include:

  • Tiredness
  • Sore skin in the area that is being treated
  • Diarrhoea  - a common side effect of radiotherapy to the abdomen or pelvic area

Side effects from chemotherapy:

Different chemotherapy drugs cause different side effects; however, the most common side effects are:

  • Risk of infection
  • Bruising and bleeding
  • Anaemia (low number of red blood cells)
  • Feeling sick
  • Tiredness
  • Sore mouth
  • Loss of appetite
  • Discoloured urine
  • Diarrhoea
  • Hair loss
  • Skin changes and nail changes
  • Changes in the way the kidneys and liver work

Side effects from hormone therapy may include:

  • Tiredness
  • Joint and muscle pain
  • Hot flushes
  • Weight gain
  • Low sex drive

Please speak to your clinical nurse specialist if your symptoms are persistent or troublesome. They can offer you advice on how to manage your symptoms. Please be assured that many side effects disappear after treatment.

Recurrence

A gynaecological sarcoma can reappear in the same area after the treatment of a previous tumour; this is called a recurrence. A recurrence of sarcoma may be accompanied by cancer in other parts of the body; this is called metastasis or secondary cancer. Some people are diagnosed with sarcoma because their metastases have been discovered before their primary sarcoma tumour. In sarcoma patients, these secondary cancers may appear in the lungs or liver, which is why a chest x-ray or CT scan is performed before follow-up appointments.

Secondary gynaecological sarcomas may also appear in the abdomen. Treatment for secondary cancer may involve surgery, radiotherapy or chemotherapy as appropriate; your treatment will be assessed on an individual basis. Your sarcoma MDT will review the treatments available to you and may suggest a clinical trial.

Emotional and practical support

Emotional support

TALKING ABOUT IT

There is no right or wrong way to feel or react to diagnosis; you may feel angry, sad or anxious about the future. You may also have concerns for how the news will affect your loved ones. You may find comfort in talking about your concerns with family members or friends.

In younger women who are still having periods, removing the ovaries will bring on an early menopause and lead to a loss of fertility. This can be difficult to cope with, particularly when you are already coping with cancer. You may find comfort in talking about your concerns with family members or friends or you may find support from talking to others affected by gynaecological sarcoma. 

TALKING TO OTHERS AFFECTED BY SARCOMA

If you do not feel comfortable discussing your concerns with family or friends, you may find it useful to talk to other women who have been affected by gynaecological sarcoma. 

groupspaces.com/sarcoma is an online support group for people affected by sarcoma. It provides members with the opportunity to get in touch with other sarcoma patients or carers to discuss their concerns over a new diagnosis, treatment options or worries about the future. The group is owned and run by a group of volunteers, who greet new members and monitor activity on the site. Sarcoma UK offers support to members by providing useful sarcoma information. A private section of this group is specifically for women diagnosed with a gynaecological sarcoma where you can discuss your concerns in confidence. 

There are a number of sarcoma support groups supported by Sarcoma UK around the country. These offer valuable support and information to patients, carers and family members, and provide the opportunity to meet with other women in the same situation.

Most groups are run by patients and carers working together with local sarcoma clinical nurse specialists or doctors. A typical meeting may include a talk from an invited speaker on a related topic, discussion and questions, informal chat with other group members, and refreshments.

TALKING TO A PROFESSIONAL

You may find it helpful to talk to your sarcoma clinical nurse specialist or doctor about your diagnosis; they will be able to answer any questions you may have about your condition. They may also be able to put you in touch with a counsellor for additional support, providing you with a safe, confidential place to talk about your concerns. Your GP will have access to local counselling services who can provide support to people with cancer.

Practical support

FREE PRESCRIPTIONS

Patients who are being treated for cancer can apply for a medical exemption (MedEx) certificate which will allow you to get free prescriptions. You can get an application form from your doctor and it will need to be countersigned by your GP or consultant. Prescriptions are free for all patients in Scotland, Wales and Northern Ireland.

BENEFIT ENTITLEMENT

Your sarcoma clinical nurse specialist should be able to advise you on the types of benefits you can claim or any special funding you can apply for. Your local Citizens Advice Bureau can also give you benefits information and many branches can help you fill out application forms. Macmillan Cancer Support have a number of benefit advisors who offer financial advice and support to cancer patients including advice about returning to work following cancer treatment.

Version 1

Date published: August 2015

Next review: August 2017