Living with breast cancer

Side effects of treatment for breast cancer can vary. Some people will experience just a few side effects, while others will have more.

Lymphoedema

Lymphoedema is a swelling (oedema) of part of the body, such as an arm or breast. When lymph nodes have been damaged or removed, lymph fluid may not be able to drain properly. The fluid builds up, causing swelling.

Some breast cancer treatments, such as radiation therapy to the armpit or axillary surgery, can cause lymphoedema. People who have had surgery followed by radiation therapy to the armpit are more at risk of experiencing this side effect.

Symptoms of lymphoedema are easier to manage if the condition is diagnosed and treated early. Signs of lymphoedema include swelling, heaviness or fullness in the arm, and an aching or tingling feeling. These signs may begin gradually, and they may come and go. Some people experience pain or fever, which can be caused by an infection called cellulitis in the area with lymphoedema. If you have swelling, see your doctor as soon as possible.

Preventing and managing lymphoedema

Lymphoedema can develop months or years after treatment, although some people who are at risk never develop it. In many hospitals, a lymphoedema practitioner will assess you before you have surgery and can teach you simple exercises to reduce your risk of lymphoedema.

If you develop lymphoedema, the swelling can be reduced by wearing a professionally fitted compression sleeve or by massage from a lymphoedema practitioner, physiotherapist, nurse or occupational therapist. You may also benefit from low-level laser treatment by a lymphoedema practitioner.

Long periods of physical inactivity, such as when travelling, may worsen lymphoedema symptoms. Talk to your doctor or lymphoedema practitioner about wearing a compression sleeve during air, rail or car travel.

The Australasian Lymphology Association website includes a directory of lymphoedema practitioners. Visit lymphoedema.org.au. See Understanding Lymphoedema.

Cording

Cording, also known as axillary web syndrome, can happen weeks or months after breast-conserving surgery, mastectomy or axillary surgery. It feels like a tight cord running from your armpit down the inner arm, sometimes to the palm of your hand, and is caused by hardened lymph vessels. Some people can see and feel raised cord-like structures across their arm, and these "cords" may limit movement.

This condition usually improves over a few months. Gentle stretching exercises during the first weeks after surgery can help. If there is no improvement or it is getting worse, try physiotherapy, massage, or low-level laser treatment by a lymphoedema practitioner.

Nerve pain

Mastectomy and axillary dissection can cause nerve pain in the arm. This may feel like pins and needles. It usually settles within a few weeks. If pain is ongoing, ask your doctor about ways to manage it.

Some chemotherapy drugs can damage nerves in the hands and feet. This is called peripheral neuropathy and it can cause numbness, pins and needles and, occasionally, pain. These symptoms are usually temporary, but can be permanent. Your doctor will help you manage pain from any permanent nerve damage. A psychologist or counsellor can also teach you coping strategies to manage any ongoing pain.

Menopause and fertility

Chemotherapy can cause your periods to stop for a time and affect your ability to become pregnant. If your periods stop permanently (early menopause), you won't be able to have children naturally.

Symptoms of menopause can range from mild to severe and may include hot flushes and sweats, trouble sleeping, vaginal dryness, reduced sex drive (libido), tiredness, dry skin, aches and pains, mood swings, poor concentration, weight gain and osteoporosis. Talk to your doctor or breast care nurse about ways to manage symptoms.

If you learn you may be permanently infertile, you may feel a great sense of loss. Talking to a counsellor or someone in a similar situation may help - call Cancer Council 13 11 20 for information about counselling services and support groups in your area. See Fertility and Cancer.

Cancer can affect your sexuality in physical and emotional ways. You might find it helpful to read Sexuality, Intimacy and Cancer and listen to our podcast on sex and cancer at cancercouncil.com.au/podcasts.

Body image

For women, any change in appearance after breast surgery may affect self-esteem and feelings of femininity. It is normal to experience sadness and grief after losing a breast or breasts, or losing your hair.

Try to focus on yourself as a whole person and not just on the part of you that has changed. It may take some time to get used to seeing and feeling the differences in your body. Some women find that having a breast reconstruction or wearing a breast prosthesis improves their self-confidence. Other women prefer to concentrate on accepting the changes in their body without having breast reconstruction or wearing a prosthesis.

Look Good Feel Better is a free program that teaches techniques to help you feel more confident in your appearance and improve selfconfidence. Visit lgfb.org.au or call 1800 650 960 for more information.

Breast prostheses

Breast prostheses are synthetic breasts or parts of a breast worn inside a bra or attached to the body with adhesive. They help give the appearance of a real breast and can be used after breast surgery.

Temporary prosthesis

In the first month or two after surgery, you may choose to wear a temporary light breast prosthesis called a soft form. This will be more comfortable next to your scar. A free bra and soft forms are available through Breast Cancer Network Australia as part of the My Care Kit. Ask your breast care nurse to order you a kit.

Permanent prosthesis

Your breast surgeon or breast care nurse will discuss the best time for you to be fitted for a permanent breast prosthesis. This is usually once your scar has healed. A permanent breast prosthesis is usually made from silicone and has the shape, feel and weight of a natural breast. It can help you to maintain good posture and prevent neck and back problems. It is recommended that you see a trained fitter who can help you choose the right prosthesis. To find out where you can get fitted for a prosthesis, call Cancer Council 13 11 20 or ask your breast care nurse. See Breast Prostheses and Reconstruction.

Wigs

If you lose your hair during chemotherapy treatment, you may want to wear a wig, scarf, turban or hat while it's growing back. Another option is to leave your head bare.

You can borrow a wig - some hospitals and cancer care units provide wigs for free or a small fee. Your local Cancer Council may also provide a wig service. You can also buy a wig, although some types can be expensive. Call Cancer Council 13 11 20 or ask your treatment team for more details about borrowing or buying wigs. Some private health funds cover part of the cost of wigs - check with your health fund.

Thinking and memory changes

Some people diagnosed with breast cancer experience changes in the way that they think, process and remember information. This may be called cancer-related cognitive impairment, "cancer fog" or "chemo brain". The exact cause is unknown, but studies show that it may be caused by the cancer itself, by treatments such as chemotherapy, radiation therapy and anaesthesia, and by treatment side effects, such as fatigue, sleeping problems, pain and hormonal changes.

For most people, thinking and memory problems get better within the first year of finishing treatment. Others may experience longerterm changes. To manage any cognitive problems, you can:

• make changes to your daily routine, e.g. write lists, use smartphone
• reminders, avoid distractions, pace yourself
• maintain a healthy lifestyle, e.g. exercise, relaxation, nutritious diet
• improve your thinking and memory, e.g. crosswords, brain training
• tell your family and friends, and ask your health care team for help.

You can also see a clinical psychologist or neurospsychologist for cognitive rehabilitation. This therapy helps you to restore your thinking and memory skills, and develop strategies to manage any changes. See our Understanding Changes in Thinking and Memory fact sheet and listen to our Brain Fog and Cancer podcast.

Once cancer treatment finishes, many people worry about the cancer coming back. See more information about recurrence or call Cancer Council 13 11 20 to talk through your concerns.

Key points about living with breast cancer

Common side effects

Side effects after treatment for early or locally advanced breast cancer can include:

• lymphoedema - swelling of part of the body, such as the arm, after lymph nodes are damaged or removed; can occur years later
• cording - also called axillary web syndrome, feels like a tight cord running down your inner arm
• nerve pain - feels like pins and needles; occurs after surgery or chemotherapy.

Menopause and fertility

Some treatments can cause a woman's periods to stop and lead to symptoms of menopause such as hot flushes, vaginal dryness and tiredness. If your periods stop permanently you will no longer be able to have children naturally.

Body image

The loss of a breast or breasts or losing your hair may affect how you feel about your body. After a mastectomy, you can have a breast reconstruction, wear a temporary soft breast form, or be fitted for a permanent breast prosthesis. If you lose your hair during chemotherapy, you could wear a wig. Free or low-cost wigs may be available to borrow from treatment centres or Cancer Council, or you can buy a wig.

Download PDF Order FREE booklet