Managing symptoms and side effects of advanced breast cancer

Breast cancer

Managing symptoms and side effects of advanced breast cancer

Symptoms and side effects

Symptoms and side effects

Advanced breast cancer and its treatment can cause a range of symptoms and side effects. Your experience will depend on the sites of your cancer and the type of treatment you are having. 

Factors such as your overall health and any other medical conditions will also play a part in how your symptoms may affect you. Make sure you keep track of your symptoms and side effects because they can change day-to-day. We recommend keeping a diary, where you can make notes of what you are experiencing and what is helping to manage them.

Common symptoms and side effects of ABC and treatment can include:

  • pain
  • nausea and vomiting
  • constipation
  • diarrhoea
  • shortness of breath
  • numb or tingling hands and feet
  • fever and chills
  • skin changes
  • mouth problems
  • fatigue and tiredness
  • hot flushes
  • poor appetite
  • anxiety and depression
  • sleeplessness

Important to note: everyone is different and it is unlikely that you will experience all of these symptoms or side effects. Some of these side effects may not be relevant to the treatments you are having.

You will be given information about symptoms you might expect and side effects of treatment by your specialist team(s), as well as recommended strategies and treatments to help control them. They will also explain what to do if these become difficult or severe. If you experience fever and chills and have a temperature of 38c or higher, this could be a symptom of neutropenia, which requires urgent medical attention. It is important to know which doctor, nurse or health professional you can contact at any hour, if you need to.

“All the treatments have been different, they’ve made me gain weight, feel sick, body aches, pain, the fatigue has been huge this time.”
Greta Thomas
Breast Cancer Foundation NZ - Ribbon

Common side effects and symptoms

Nausea and vomiting
Shortness of breath
Numb or tingling hands and feet
Skin changes
Mouth problems
Fatigue and tiredness
Poor appetite

ABCpro – Advanced Breast Cancer Patient Reported Outcomes

Breast Cancer Foundation NZ is currently trialing a new online service for managing symptoms for people with advanced breast cancer. The service, called ABCpro, currently has trial sites at Waikato Hospital and Icon Cancer Centre in Wellington. Patients complete weekly surveys about common symptoms of ABC and side effects associated with their treatments. Responses are sent to a specialist ABC nurse who uses them to help patients better manage their symptoms and side effects from home, in between their regular clinic visits. It also helps your oncology team decide if you need further tests or treatments.

We'll provide more information about the results and let you know when it is rolling out further.

“It has been a huge benefit, because it builds a picture of my week by week that’s useful at my oncologist appointments.”
Huia Whitinui

Palliative care

People often feel afraid when they hear palliative care mentioned because they associate it with end of life care. Whilst palliative care does include caring for people who are nearing the end of life, it can be provided at any stage in your advanced breast cancer. In fact, some people living with advanced breast cancer receive palliative care for years.

Palliative care will help you to:

  • manage the symptoms of your cancer
  • reduce the side effects of your treatments
  • improve your quality of life

Referral to palliative care is recommended right from the very beginning of your advanced breast cancer treatment. The palliative care team will work alongside your treatment team to help you deal with any physical, emotional, social, and spiritual effects of ABC.

Importance of having symptoms well controlled

Having your symptoms well controlled allows you to live as normally as possible, enjoying the things that are important to you, while maintaining your quality of life and independence. Discuss any symptoms with your doctor or breast care nurse so that a plan for managing these symptoms can be made. The symptoms can be caused by the metastases, the treatment you receive, or from other medications and can include fatigue, pain, breathlessness, side effects of medication or others.

Your treatment and your care team

Navigating and finding your way in the healthcare system can be difficult at times. With so many different specialists and appointments, it can be confusing and sometimes distressing just trying to find where you should be and who you need to meet at certain times. Take your time and find out who is who and what their role is. Your key point of contact may be different depending on what type of treatment you are having at any given time. If you are currently not having treatment, then your GP may be the best point of contact for you. He/she has oversight of all your health history and receives correspondence and information from all members of your health care team. This gives them a good insight and overview of all your care needs. They can then refer you back to the appropriate person in hospital system if and when needed. Some people even refer to them as their project manager.

It can be a good idea to keep a diary with names and contact numbers of the nurses and doctors taking care of you. List what they do, where they work and what is the best way to contact them. Sometimes it can be by email, for others a phone call or text message. Some people find that it is helpful to have a file at home, or on your phone, to place all your clinic letters and appointments in. It can help you stay organised and feel more in control. It can also be a good idea to share this information with a support person as they can help out if you are feeling unwell. They will also know where to find forms and appointments if needed. This can take the pressure off you a little. Remembering what medications you are taking can also be a challenge at times. Some people find it useful to keep a list in their wallet or have that list stored in their phone. This can come in handy if a new doctor or specialist asks for them.