Gynaecological sarcomas occur in the female reproductive system: the uterus (womb), endometrium (womb lining) ovaries, vagina, vulva and fallopian tubes.
They can affect women of any age, although they are very rare in women under the age of 30.
Most gynaecological sarcomas (85%) occur in the uterus (womb) and 7% occur in the ovaries. The remainder occur less commonly in the vagina, vulva, fallopian tubes and other areas of the female reproductive system.
Malignant Mixed Mullerian Tumour or carcinosarcoma is a mixture of carcinoma and sarcoma, where the carcinoma component is the dominant feature. These types of cancer are not treated as a sarcoma but treated in a way that is similar to other cancers of the ovaries and uterus.
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.
Diagnosis
A diagnosis may start with a visit to your GP who will then refer you to a specialist doctor, usually a gynaecologist. Your symptoms will be investigated further using a series of tests that may identify sarcoma. Tests may include:
• Clinical examination – looking at or feeling any lump
• A scan – taking pictures of the inside of the body using ultrasound, x-ray, CT, hysteroscopy or MRI
Some uterine sarcomas can be diagnosed from pictures taken during scans; however, many gynae sarcomas may also be found after or during a routine operation, such as surgery to remove fibroids or a hysterectomy. Some women receive their diagnosis after a pathologist has tested a sample of tissue that has been removed during surgery. Unfortunately, some women are diagnosed with gynaecological sarcoma when the cancer has spread to other parts of the body.
Laparoscopic power morcellation
This technique cuts tissue such as the uterus or fibroids into smaller pieces so they can be removed more easily. However, there is a risk that if a fibroid is an unidentified sarcoma it can be accidentally spread to the abdominal and pelvic cavities. Women over 50, who are post-menopausal and have post-menopausal bleeding, are at an increased risk. The Royal College of Obstetricians and Gynaecologists have published consent advice and patient information for women who are worried about this technique or speak to Sarcoma UK’s Support Line.
To read more about scans and tests, click here.
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.
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.
Hormone treatment
Many gynaecological sarcomas are stimulated to grow by the female growth hormones oestrogen and progesterone. These sarcomas are called hormone sensitive or hormone positive.
Around half 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.
Hormone treatment is given following surgery to lower the risk of the cancer coming back or to help control advanced cancer.
Hormone therapy or anti-oestrogen therapy, uses types of drugs called aromatase inhibitors 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.
Hormone replacement therapy
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.
Aromatase inhibitors
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.
After treatment
After treatment, you will have regular follow up appointments for several years. You should receive a follow-up schedule from your sarcoma clinical nurse specialist. The usual practice will include:
• A chance to discuss symptoms
• An examination to look for any signs of the sarcoma returning. This may include an MRI or ultrasound if required after examination
• An x-ray of the pelvis to rule out any cancer in the local region
• A chest x-ray or CT scan to rule out any secondary cancers occurring in the lungs or liver
Living with
What if my cancer spreads?
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.
If you have any questions or if you need to talk to someone, our Support Line team are here for you.
