Uterine sarcoma diagnosis and treatment has many effects on your physical and emotional wellbeing. Some of this is common to most cancer treatments, but some are more specific for uterine sarcomas, because many of the treatments affect your sexual functioning. 

Also see the Impacted by cancer section for more advice about living with cancer. 

Pain after surgery

After surgery, you will have some pain or discomfort. It is best to let your doctor or nurse know when you are feeling uncomfortable – don’t wait until the pain becomes severe. You will be administered pain relief medication through an intravenous drip. You may be able to use a patient-controlled analgesia (PCA) system, which allows you to choose when you receive a dose of medication. Some people receive an epidural to relieve pain. An epidural is a form of regional anaesthesia involving injection of drugs into the spine. 

An adhesion is a piece of internal scar tissue that sticks tissues together in the body that are usually separate. Adhesions may form after surgery and are sometimes painful. Adhesions to the bowel or bladder may need to be treated with further surgery. 

You may also have pain during sexual intercourse (see Sexuality, intimacy and uterine sarcoma). 

Contraception during treatment

If you are premenopausal, have not had a hysterectomy, and are having radiotherapy or chemotherapy, you should use contraception (birth control) to avoid getting pregnant during treatment, because these treatments can harm the unborn baby. Although chemotherapy and radiotherapy reduce fertility, it is still possible for some women to become pregnant while having treatment. 

Should you become pregnant, talk to your doctor urgently. 

Your doctor may suggest that you wait 2 years after chemotherapy before becoming pregnant. If you have a stoma (an artificial opening into the body created by surgery to act as an exit for body wastes), the effect of the contraceptive pill may change depending on the surgery and type of stoma you have. Discuss what contraception is suitable for you with your surgeon, stomal therapy nurse or gastroenterologist. 

Managing physical changes due to uterine sarcoma

Women treated for uterine sarcoma may experience various physical changes and symptoms. 

Physical changes associated with uterine sarcoma can be due to the cancer itself, or to treatment side effects. Not all women will experience these symptoms. Your oncologist should tell you about any side effects of recommended drugs or other treatments. 

Follow-up visits are a good opportunity to discuss any symptoms or side effects of treatment. If you don’t have regular follow-up visits, see your regular doctor to talk about any symptoms or side effects. 

Lymphoedema

Lymphoedema is swelling of part of the body, usually the legs or arms. It may occur after treatment for uterine sarcoma if you have had the lymph nodes in your abdomen removed (lymphadenectomy). Women who have had surgery followed by radiotherapy are particularly at risk. 

Removal of the nodes may prevent normal draining of the lymph fluid from the legs. As a result, fluid can build up in one or both legs causing swelling. This usually doesn’t occur until some time after treatment. 

If you have problems, seek immediate help as symptoms are better managed if treated early. Seek advice from your specialist or nurse. 

Some hospitals have specialist physiotherapists who can help reduce your risk of developing lymphoedema. 

See lymphoedema for more information. 

Menopause

Some cancer treatments bring on early menopause. Hormone replacement therapy can help with managing the symptoms of early menopause. The Menopause and breast cancer section has detailed information about early menopause and available treatments that are also relevant to women with fallopian tube cancer. This section also discusses other side effects of early menopause, such as heart disease and osteoporosis. 

Effects of treatment on fertility

Uterine sarcoma more commonly affects older women who have completed their family and gone through menopause. However, it is possible for younger, premenopausal women to be diagnosed with uterine sarcoma. 

Uterine sarcoma is often treated by surgically removing the uterus, including the cervix, and usually the fallopian tubes and ovaries. If your uterus or both ovaries have been removed, you will not be able to become pregnant. 

There are different ways that the cancer may affect your chance of conceiving. Fertility problems may occur because of surgical removal of the uterus and/or ovaries, or because of chemotherapy or radiotherapy. Many women also experience physical changes and body-image concerns after surgery, which may lead to having sexual intercourse less frequently. This affects the chance of conceiving naturally.  

Women commonly feel a sense of loss when they learn that their reproductive organs will be removed or will no longer function. You may feel devastated if you are no longer able to have children and may worry about how this might affect your relationship. 

Even if your family is complete, you may have many mixed emotions. These reactions are natural. As well as talking to your partner, speaking to a counsellor or a gynaecology oncology nurse about your feelings and individual situation can be very beneficial. 

Fertility-sparing options

If your ovaries are not removed during surgery but your uterus has been, you will still produce your own eggs. This means that, in the future, you could choose to have a baby through surrogacy (where your own eggs are fertilised with sperm and the embryo is implanted in another woman to carry the baby for you). 

Chemotherapy or radiotherapy may affect the number of eggs left within your ovaries and, in many cases, accelerate the normal age-related decline in your egg numbers. In some cases, this may lead to early menopause (see Menopause) – this means you will need to use another woman’s eggs (egg donation treatment) to become pregnant.  

You can talk to a fertility specialist about your options to have a baby after cancer treatment ends. You should be referred to a respected unit for this advice. The Reproductive Technology Accreditation Committee, under the Fertility Society of Australia and New Zealand, administers a national code of practice and a system for the accreditation of assisted reproductive technology clinics. For a list of accredited clinics in Australia and New Zealand, see the Fertility Society of Australia and New Zealand website. 

Ovarian transposition

Ovarian transposition is a surgical procedure that lifts the ovaries as far from the source of the radiation as possible. This can reduce the harmful effects of radiation on the ovaries. However, the uterus will still be exposed to radiation. 

Ovarian suppression

An implant containing a drug called a GnRH analogue may be used to suppress the function of the ovaries while you have chemotherapy. There is some evidence that this may help to protect against the effects of chemotherapy, but this procedure is experimental. It will not help protect against the effects of radiation therapy. 

Egg freezing

Egg freezing refers to freezing unfertilised eggs, which can give you the option of using your own eggs to become pregnant at a later stage. This in vitro fertilisation (IVF) procedure takes up to 1 month before starting chemotherapy or radiotherapy. It involves daily injections to stimulate the ovaries and then, after a couple of weeks, a minor surgical procedure to have the eggs collected. These eggs are rapidly frozen until they are needed. 

Embryo freezing

If time permits, you may opt to go through an IVF cycle, but in this case your eggs are fertilised with your partner’s sperm and the resulting embryos are frozen until they are used. 

Ovarian tissue freezing

Ovarian tissue freezing involves freezing tissue from your ovaries. Before treatment begins, a piece of tissue from your ovaries will be surgically removed, frozen, and then reimplanted after treatment. Ovarian tissue freezing is experimental treatment. If there are any cancer cells in the piece of ovarian tissue that is frozen and reimplanted, there is a risk of reintroducing cancer cells into your body. 

‘Wait and see’

Many women find these choices too hard to make at this time of great anxiety. It may help to talk to the fertility specialist or a fertility counsellor. 

If you find you are unable to conceive after your cancer treatment and you still have your uterus, you may consider embryo or egg donation treatment. 

If you have had a hysterectomy, you may consider using a surrogacy arrangement using either your own eggs or a donor’s eggs. 

Sexuality, intimacy and uterine sarcoma

Having cancer doesn’t mean you are no longer a sexual person. However, treatment such as surgery, chemotherapy and radiotherapy can affect your sexuality. This includes your interest in sex, your ability to give or receive sexual pleasure, how you see yourself and how you think others see you. Some of these effects are temporary, whereas others are permanent. All can be managed or controlled. 

You don’t need your uterus to have sex, but treatment for uterine sarcoma can affect your sex life. Many of these effects can be prevented or treated: 

• Lack of interest or loss of desire for sex. Low libido is common during cancer treatment. Sometimes it can be brought on by anxiety and worry about your diagnosis, rather than the treatment itself. Libido usually returns after treatment is over. 
• Temporary pain. After a hysterectomy, you will have to wait several weeks before having sex again. In the meantime, kissing, caressing and touching can also be pleasurable. 
• Vaginal tenderness and narrowing. If you receive radiotherapy to the pelvis, it can cause the vagina to become tender, and to shorten and narrow. To keep your vagina open and supple, use a dilator, which is a tube-shaped device made of plastic or rubber. Your healthcare team can show you how to use a dilator. Apply a water-based vaginal lubricant to relieve painful irritation. Avoid Vaseline or other oil-based lubricants because they may cause irritation. If you are ready and able, have regular gentle sex to help widen the vagina. 

If you have a vaginal reconstruction, you may still be able to have intercourse, but it may not be possible to have an orgasm through penile penetration of the vagina. 

Tips for maintaining intimacy with your partner: 

• If fatigue is a problem, try being intimate at different times of the day. 
• If you have a low libido, talk to your partner about how you are feeling. They need to know when you feel ready for sex and ways to help you get in the mood. 
• Although sexual intercourse may not always be possible, closeness and sharing are vital to a healthy relationship. Explore other ways of sharing intimacy and showing affection for each other, such as touching, holding, hugging and massaging. 
• Stimulate and help your partner reach orgasm. 
• Take more time for foreplay to help the vagina relax and become well lubricated. This will make penetration or intercourse less painful. 
• Try different sexual positions if your usual ones are uncomfortable. Use cushions or pillows to support your weight. 
• Suggest a quick lovemaking session rather than a long one. 

Regaining sexual confidence

For many women, sex is more than arousal, intercourse and orgasms. It involves feelings about intimacy and acceptance, as well as being able to give and receive love. 

If we are not comfortable with the way we feel about our bodies, this may affect our confidence and desire for sex. Some women worry about being rejected by a current or future partner because of changes to their body, whether these changes are visible or not. 

It is sometimes difficult to communicate sexual needs, fears or worries with your partner in an intimate relationship. But, you may be surprised and encouraged by the amount of tolerance, trust, tenderness and love that exists between you. 

However, problems can arise because of misunderstandings, differing expectations, and different ways of adapting to changes to your sex life. If this happens, you may find counselling helpful, either with your partner or on your own. You may be able to work through these challenges towards a new closeness and understanding. 

If you are experiencing a sexual problem because of cancer treatment, you may find it helpful to discuss it with your doctor, or you may feel more comfortable talking to a hospital counsellor, social worker or psychologist. 

Cancer Australia has developed a booklet on intimacy and sexuality for women with gynaecological cancer, to support women (and their partners) in understanding and addressing issues of intimacy and sexuality following the diagnosis and treatment of gynaecological cancer. It aims to empower women so they can ask questions that they may otherwise avoid asking due to embarrassment or other concerns. 

The Cancer Council Helpline – 13 11 20 – can also put you in touch with a counsellor or a sex therapist and can provide a copy of the booklet Sexuality, intimacy and cancer.