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Managing side effects
It will take time to recover from the physical and emotional changes caused by your treatment. Side effects can vary. Some people will experience just a few side effects, while others will have more.
Lymphoedema is the swelling (oedema) that develops when lymph fluid builds up in the tissues 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 as it should and instead builds up in the tissues, causing swelling.
Some breast cancer treatments may cause lymphoedema. These include surgery to remove lymph nodes and radiation therapy to the armpit. People who have had surgery followed by radiation therapy to the armpit are more at risk of lymphoedema.
Lymphoedema can affect people at any time – during active treatment or months or even years afterward. Many people who are at risk never develop lymphoedema. Signs to look for include swelling of part of your arm or your whole arm; a feeling of tightness, heaviness or fullness in the fingers, wrist or the whole arm; and aching in the affected area. These signs may begin gradually or come and go.
Some people experience pain, redness or fever, which can be caused by an infection called cellulitis in the area with lymphoedema. If you have any of these symptoms, see your doctor as soon as possible. Lymphoedema is easier to manage when diagnosed and treated early.
Preventing and managing lymphoedema
Who provides treatment – If you have, or are at risk of developing lymphoedema, see a lymphoedema practitioner. You may have treatment from an occupational therapist, physiotherapist or nurse with specialist training in treating and managing lymphoedema.
When to start treatment – See a lymphoedema practitioner for regular check-ups after cancer treatment, rather than waiting for signs to appear. Taking action at an early stage can help reduce the risk of developing lymphoedema and the severity of lymphoedema if it does develop.
What treatment involves – The swelling can be reduced by wearing a professionally fitted compression sleeve or by massage from a lymphoedema practitioner. Exercise and skin care can help, as well as lymph taping or low-level laser treatment given by a lymphoedema practitioner.
If you develop lymphoedema in the breast (breast oedema), you may be more comfortable wearing a bra designed for breast oedema. Ask your lymphoedema practitioner or breast care nurse where you can be fitted for the bra.
How to find a lymphoedema practitioner – Visit the Australasian Lymphology Association website which has a national register of trained lymphoedema practitioners.
Cording (axillary web syndrome) can happen weeks or months after any type of breast surgery. It is caused by hardened lymph vessels and feels like a tight cord running from your armpit down the inner arm, sometimes to the palm of your hand. You may see and feel raised cordlike structures across your arm, chest or breast which may limit how you move. Doing gentle stretching exercises the first weeks after surgery can help, or try massage, physiotherapy, or low-level laser treatment by a lymphoedema practitioner. Cording usually improves over a few months.
Mastectomy, sentinel lymph node biopsy and axillary lymph node dissection can cause nerve pain in the arm or armpit, and mastectomy can cause nerve pain in the chest wall. This may feel like pins and needles, tingling or stabbing pain. It usually settles within a few weeks. If nerve pain is ongoing, ask your doctor about ways to manage it.
Certain chemotherapy drugs can damage nerves in the hands and feet. This is called peripheral neuropathy or chemotherapy-induced peripheral neuropathy (CIPN), and it can cause weakness, numbness, pins and needles and, occasionally, burning or shooting pain. These symptoms are usually temporary and start to get better over a matter of months, but they can be permanent.
If you have any symptoms, tell your health care team. Your doctor will help you manage pain from any permanent nerve damage. A psychologist or counsellor can teach you coping strategies to manage any ongoing pain. A physiotherapist and occupational therapist can help you improve or manage symptoms.
Some people with breast cancer notice changes in how they think and remember information. This is called cancer-related cognitive impairment, or referred to as “chemo brain”, “cancer fog” or “brain fog”. The exact cause is unknown, but studies suggest these changes may be caused by the cancer, emotions such as anxiety and depression, cancer treatments (not just chemotherapy), anaesthetic given for surgery, and side effects such as fatigue, insomnia, pain and hormone changes.
For most people, thinking and memory problems get better within the first year of finishing treatment. Others may have long-term effects. If you have severe or lasting changes to your thinking and memory skills, you can see a clinical psychologist or neuropsychologist for cognitive rehabilitation. Speak to your health care team about the services available at your hospital or from a psychologist.
Ways to cope with thinking and memory changes
- Adjust your daily routine, e.g. write lists, keep a diary, use smartphone reminders or alarms, pace yourself and avoid distractions.
- Try not to multitask. Instead focus on one thing at a time.
- Do the most demanding tasks at the time of day when your energy levels are best.
- Maintain a healthy lifestyle, e.g. exercise, relax, eat healthy foods, get enough rest and sleep.
- Improve your thinking and memory, e.g. crosswords, puzzles, brain training.
- Tell your family, friends and health care team about any changes and ask for help.
A breast prosthesis is a synthetic breast or part of a breast that is worn in a bra or attached to the body with adhesive. It helps 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 the scar. A free bra and soft form are available through Breast Cancer Network Australia as part of the My Care Kit. To order a kit, speak to your breast care nurse. Cancer Council SA can also provide you with a temporary prosthesis. Call Cancer Council 13 11 20 for more information.
Permanent prosthesis – When you have recovered from treatment, you can be fitted for a permanent breast prosthesis. A permanent breast prosthesis is mostly made from silicone gel and has the shape, feel and weight of a natural breast. It is recommended that you see a trained fitter who can help you choose the right prosthesis. To find a fitter near you, call Cancer Council 13 11 20 or ask your breast care nurse.
If you lose your hair during chemotherapy, you may choose to wear a wig, scarf, turban or hat while it’s growing back. Or you might feel comfortable leaving your head bare. You could try out a few options over time and see what feels like the right thing for you.
You can buy or borrow a wig – some hospitals and treatment centres provide wigs for free or a small fee. Call Cancer Council 13 11 20 or ask your treatment team about borrowing or buying wigs. Check with your private health fund, as some may cover part of the cost of a wig.
Breast cancer can affect how you feel about yourself (self-esteem) and make you feel self-conscious. You may feel less confident about who you are and what you can do. Give yourself time to adapt. Try to see yourself as a whole person (body, mind and personality) instead of focusing on the parts that have changed. Talking to your partner and learning to get undressed naturally in front of them may also help.
Breast and areola appearance – You may find that having a breast reconstruction or wearing a breast prosthesis improves your self-confidence. Or you may prefer to not have a reconstruction and “go flat”. Areola tattooing can tattoo the look of an areola and nipple onto the breast following a mastectomy. Areola tattoos are typically done on breasts with implants, with and without nipple reconstruction. Or you may choose a decorative tattoo to cover scars. For some people this is a way to take control of their body and express themselves.
Low libido – Breast cancer can also reduce your desire for sex (libido). You may miss the pleasure you felt from the breast or nipple being stroked or kissed during sex. This may be the case even if you have a reconstruction. If breast stimulation was important for arousal before surgery, you may need to explore other ways of becoming aroused.
Vaginal dryness – Some treatments for breast cancer can cause vaginal dryness, which can make penetrative sex painful. For most people, sex is more than arousal, intercourse and orgasms. It involves feelings of intimacy and acceptance, as well as being able to give and receive love. Although penetration may not always be possible, closeness and sharing can still be part of your relationship.
After treatment you shouldn’t use any hormone-based contraceptives (“the pill” or hormone implants or injections). It is best to use condoms, diaphragms or intrauterine contraceptive devices (IUDs).
Chemotherapy can cause your periods to stop for a time, or it may cause them to stop permanently (early menopause). Symptoms of menopause include hot flushes, trouble sleeping, vaginal dryness, reduced sex drive (libido), tiredness, dry skin, mood swings, weight gain and osteoporosis. Talk to your doctor or breast care nurse about how to relieve symptoms.
If chemotherapy causes menopause, you won’t be able to have children naturally. Talk to your doctor before treatment starts, as there may be ways to reduce the risk of early menopause or to preserve your fertility.
If you find out you might not be able to get pregnant and have a child, 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.
It’s common to feel emotional after a diagnosis of cancer. You may feel a sense of grief or loss – of your health and wellbeing, your femininity, your dreams or freedoms, even what you can wear. Grief can feel like waves of sadness or being teary, and usually settles over time. The busyness of cancer treatment may mean you don’t feel grief until it’s over. If concerned, call Cancer Council 13 11 20 to talk to someone.
This information is reviewed by
This information was last reviewed July 2022 by the following expert content reviewers: A/Prof Elisabeth Elder, Specialist Breast Surgeon, Westmead Breast Cancer Institute and The University of Sydney, NSW; Collette Butler, Clinical Nurse Consultant and McGrath Breast Care Nurse, Cancer Support Centre, Launceston, TAS; Tania Cercone, Consumer; Kate Cox, 13 11 20 Consultant, Cancer Council SA; Dr Marcus Dreosti, Radiation Oncologist and Medical Director, GenesisCare, SA; Dr Susan Fraser, Breast Physician, Cairns Hospital and Marlin Coast Surgery Cairns, QLD; Dr Hilda High, Genetic Oncologist, Sydney Cancer Genetics, NSW; Prof David W Kissane AC, Chair of Palliative Medicine Research, The University of Notre Dame Australia, and St Vincent’s Hospital Sydney, NSW; Prof Sherene Loi, Medical Oncologist, Peter MacCallum Cancer Centre, VIC; Dr W Kevin Patterson, Medical Oncologist, Adelaide Oncology and Haematology, SA; Angela Thomas, Consumer; Iwa Yeung, Physiotherapist, Princess Alexandra Hospital, QLD.