Advanced breast cancer

When breast cancer spreads from the breast or armpit to other areas of the body, it is called advanced breast cancer. It's also called metastatic, secondary or Stage 4 breast cancer.

The most common places for breast cancer to spread to are the bones, lungs, liver or sometimes the brain. A secondary tumour in these distant organs, is still comprised of breast cancer cells so it is readily identified as a secondary breast cancer rather than a new primary cancer.

Advanced breast cancer can occur months or years after a diagnosis of early or locally advanced breast cancer. Occasionally, it’s diagnosed at the same time as the original breast cancer or, on rare occasions, before any tumour can be felt or even imaged in the breast.

For many people diagnosed with early breast cancer, the future feels very uncertain. The fear that the cancer could come back may never go away completely. Being diagnosed with advanced breast cancer can be even more difficult because the hope of staying well is replaced with the realisation that a cure is no longer possible.

Although there is currently no cure for advanced breast cancer, progress is being made and the growth of secondaries can often be controlled with various treatments.

With the latest treatments, some people with advanced breast cancer may live for many years.

It is very difficult to predict how someone’s cancer will progress, and every case is unique. Your medical team may be able to give you some indication regarding this, but if you would rather not have this information, let your team know so they can respect your choice.

The signs and symptoms of advanced breast cancer vary depending on where the cancer has spread to.

Symptoms include:

• pain in your bones (for example in the back, hips, ribs , long bones of arms and legs) that doesn’t improve with pain relief or lasts for more than one to two weeks and is often worse at night
• Weakness or numbness in legs and loss of urinary and/or bowel control
• unexplained weight loss and a loss of appetite
• constant nausea (feeling sick)
• discomfort or swelling under the ribs or across the upper abdomen
• jaundice ( yellowing of skin and the whites of eyes)
• feeling constantly tired
• a dry cough or a feeling of breathlessness
• severe or ongoing headaches, loss of balance or co-ordination, seizures
• altered vision or speech

However, many of these symptoms may be caused by other benign conditions. For example, aches and pains in the bones may be due to ageing, arthritis or treatment side effects. Breathlessness and cough can be symptoms of a cold or flu-type illness.

If you have any persistent or unexplained symptoms, the best thing to do is to talk to your doctor or breast care nurse straight away. Don’t wait for your next planned appointment. It is important to get any concerning symptoms checked as soon as possible.

There are various tests you can have to find out the reason for your symptoms. Your GP can refer you directly for these tests, or to your previous hospital specialist. If you are still having follow up care your hospital team will organise appropriate tests for you.

Most people will need some imaging or x-rays and the type you have depends on where your symptoms are.

Some of the most common tests are:

• X-ray
• Ultrasound scan
• CT scan
• MRI scan
• Bone scan

Some people will also require a biopsy. If your x-ray or scan confirms that a tumour is causing your symptoms, sometimes this will be enough to allow a treatment plan to be confirmed. However, for some people a biopsy is needed to confirm the diagnosis again.

It can also be useful to have a new sample or biopsy from the secondary tumour, as occasionally the cancer cell’s biology can change (although they are still breast cancer cells). For instance hormone receptor status may change from negative to positive- allowing treatment with hormone blocking agents- or from positive to negative, meaning hormonal treatment is no longer appropriate. HER2 status can also change in some cases.

Despite the fact that metastatic breast cancer is not currently curable,there are many treatments available. The aim of treatment is to prolong life and to preserve quality of life by relieving symptoms. The treatment for secondary breast cancer is different for everyone as it is tailored to your individual needs. It is also dependent on where the cancer is in your body and on the characteristics of the cancer cells (tumour biology). The team looking after you will discuss everything with you and select the best treatment for you to manage the disease but will also consider your quality of life.

Treatments may include some that you have had before :

• Hormone therapy: If the cancer is hormone receptor positive, hormonal therapy is used first, even if you have been previously treated with this. Other newer agents such as everolimus can be used in conjunction with hormone treatment for post- menopausal women although some are not currently funded in New Zealand. Pre-menopausal women are usually treated with ovarian suppression to stop the ovaries producing hormones. Hormone therapy is continued for as long as it is effective.

• Radiation therapy: This can be given to reduce pain, control the growth of a specific area of cancer, or reduce the risk of a bone fracture.
  
• Stereotactic radiotherapy: Sometimes a very precise radiation treatment may be used for people with one or more small secondary breast cancers (this is called oligometastatic disease) that are stable (not progressing) and usually present only in one site in the body. Stereotactic radiotherapy is most commonly used to treat secondary breast cancer in the brain but can sometimes be used in other areas of the body, like the lungs and liver. This treatment enables high doses of radiation to be delivered with extreme accuracy over fewer visits. Your specialist team will be able to tell you if it is available and suitable for you.
  
• Chemotherapy: Chemotherapy may be given when the cancer is hormone receptor negative, it is large or widespread, growing rapidly or causing severe symptoms, and/or the cancer has progressed on hormone therapy. It is also given if the cancer is HER2 positive (in conjunction with anti-HER2 targeted therapy). The first chemotherapy drug used is referred to as first line treatment. When the cancer no longer responds, other drugs can be sequentially used. These are referred to as second and third line treatments, etc.

• Targeted therapy: If the cancer is HER2-positive, anti-HER2 therapy is used, such as Herceptin, Kadcyla, Perjeta or TDM-1. However, only Herceptin is fully funded in New Zealand.
  
• Surgery: This is sometimes used to alleviate symptoms. For example, surgery can be used to strengthen and repair weakened or fractured bones when the breast cancer has spread to the bones. In selected cases it may be used to remove oligometastasis in the liver.
  
• Bone strengthening drugs: Bisphosphonates are a group of drugs used to treat secondary breast cancer in the bone.They inhibit the breakdown and absorption of bone and reduce pain. They reduce the risk of fracture and can reduce the need for radiation therapy for bone metastases. Denosumab ( Prolia, Xgeva) is a monoclonal antibody which can also be used in the treatment of bone metastases. It has Medsafe approval for use in New Zealand but is not currently funded.

Some people may have a combination of these treatments while others may have only one. Your doctor will explain this in detail before you start any treatment.

You may be able to participate in a clinical trial of a new medication. Ask your oncologist if there are any trials which are appropriate for you and check our clinical trials database.

New Zealand Consensus Guidelines for Advanced Breast Cancer (ABC-NZ)

New Zealand-specific guidelines for the treatment and care of advanced breast cancer were developed by the Breast Special Interest Group (Breast SIG), with assistance from Breast Cancer Foundation NZ. These clinical guidelines are a useful resource that can help you navigate conversations with your medical team as they provide information on the most up-to-date treatments and practices for managing advanced breast cancer.

It is also important to consider the need for support when diagnosed with advanced breast cancer.

When you find out that your breast cancer has spread you may experience many different emotions. Reactions include disbelief, denial, shock, anger, fear, numbness and helplessness. Your emotions may swing from one extreme to the other or change from one day to the next.

Your mind may race ahead with worries about what’s going to happen to you. You may feel concern for people close to you or disappointment about plans that might have to change or not go ahead.

You may also find yourself questioning the value of everything that you went through following your first breast cancer diagnosis. Although these feelings are normal, don’t be afraid to ask for support to help you manage them.

Your GP and other medical team will help to guide you in accessing support at any time while living with advanced breast cancer.

You may wish to consider asking for help with:

• Practical issues, such as work, finances and any responsibilities you have caring for others
• Family issues, such as your relationships with your children and partner
• Emotional issues, such as feeling isolated, depressed, worried or angry
• Spiritual issues, such as loss of faith or feelings of regret

Support that you might choose to have includes:

• Counselling services, where you can talk about your problems and feelings. Counselling can also be provided by your DHB Health Psychologist, Cancer Society or Palliative Care Service.
• Cognitive behavioural therapy: This can help you change negative patterns of thinking and behaviour. Unlike some techniques, it focuses on problems you’re having in the ‘here and now’ instead of exploring the causes of your distress or symptoms in the past, and looks for ways to improve your state of mind in the present.
• Mindfulness: This involves focusing on the present moment to reduce stress and improve quality of life. This means noticing sights, smells, sounds and tastes, as well as thoughts and feelings from one moment to the next. There are many online mindfulness exercises and Apps available to help with this.
• Seeing a psychologist or psychiatrist
• Talking to others with secondary breast cancer
• Getting help from support groups, helplines, online forums and social media
• Support for your children

Sweet Louise

Sweet Louise is an organisation that's solely focused on supporting women and men with advanced breast cancer. Established by the Louise Perkins Foundation and inspired by the life of Louise Perkins, Sweet Louise was launched in October 2005 and is uniquely focused on the needs of New Zealanders living with secondary breast cancer. Sweet Louise’s mission is to improve the quality of life for all New Zealanders with secondary breast cancer by offering access to a wide range of practical and supportive services.

Metavivors

Metavivors is a closed NZ forum specifically for those with advanced breast cancer. For more information contact bcac@breastcancer.org.nz.

Cancer Society NZ may be able to help with transport to hospital appointments, support from Community Liaison Nurses and sometimes accomodation during treatments. They also have an extensive range of books and resources available.

Support for children

Cancer in the Family: A Cancer Society NZ booklet about talking to children

Skylight: An organisation which supports children and young people to build resilience during times of trauma,grief or loss.

Kidsline: Children can phone and speak to a specially trained youth volunteer 24/7 on 0800 54 37 54.

School counselling: Ask if this is available at your child's school.

For more information on support services visit our Support section.

You may also be referred to a palliative care team for treatment and support. Sometimes palliative care is confused with end of life care, but it’s not the same thing and it can be invaluable in your overall care. It can be included right from the very beginning of your advanced breast cancer treatment and most people benefit from an early referral.

It will help you to:

• Manage the symptoms of your cancer
• Reduce the side effects of your treatments
• Improve your quality of life

Palliative care that your treatment team may provide or organise for you include:

• Psychological support for you and your carers, to help with any distress
• Management of symptoms and side effects, including reducing pain, fatigue and infections
• Social support to help with personal care and daily living, friendship, work, and finances and any responsibilities you have caring for others
• Meeting your spiritual needs, for example by giving you opportunities to discuss your thoughts, questions and beliefs, or providing contact with a faith leader
• Services such as lymphoedema care, physiotherapy, psychosexual counselling
• Complementary therapy advice or provision
• Support for your family and friends (both practical and emotional)
• Discussions about end of life care at an appropriate time for you to ensure that your wishes are carried out including where and how you’d like to be cared for at that time and the support needed for you and your loved ones

Coping with fear and uncertainty

Many people find the uncertainty of their situation one of the most difficult aspects of the diagnosis to manage. Some cope best by living in the present and not thinking too much about the future. Others find that planning ahead gives them a greater sense of control.

Recognise that uncertainty is normal in this situation and try to focus on areas of your life that are more certain.

Here is some advice given by women living with advanced disease:

• Collect information about your situation, your disease and treatment options. Decide what feels right for you in terms of your quality of life, financial situation, and time constraints.
• Look for inspiration in stories and ideas. Try to be around people who inspire you.
• Set priorities and do what is most important to you.Live with purpose.
• Try to live in the moment and appreciate it rather than constantly worrying about the future.
• Let go of people who drain you emotionally.
• This is your new normal so be kind to yourself and look for joy in your life.
• Write a journal or blog to express feelings you might not feel comfortable sharing with others.
• Try to relinquish control over things you can't change.
• Do things that give you pleasure and distraction. - exercise,yoga,mindfulness, gardening, music etc
• The best approach is the one that works best for you.

Fatigue

One of the most common symptoms experienced by people with advanced breast cancer is extreme tiredness. This can be very severe and feel very different to the ordinary tiredness that everyone experiences at some time. For some it will come and go, and for others it may be relentless and may be distressing and interfere with everyday life. This tiredness can be a result of the shock and reaction to the diagnosis, or due to the physical effects of the cancer itself. It can also be due to medication or side effects of treatment.

If you feel that you are experiencing severe fatigue there are some things that you can do to help:

• Discuss your symptoms with your medical team (they can check for underlying causes, e.g. anaemia, and suggest treatment).
• Keep a record or a diary – if you are more tired at certain times in the day you can plan to have a rest at these times.
• Be realistic about what you can do. Try to prioritise what you have (or want) to do and plan your days so you have a balance of activity and rest. If you know that you have something planned that you really want to do then try to conserve your energy and rest the day before.
• Regular physical activity has been shown to improve energy levels and reduce fatigue. Short walks can help increase your appetite, give you more energy and improve wellbeing. Do something you enjoy.
• Try to eat as well as possible so your body continues to get the nutrients it needs. If your appetite is poor, it may help to eat smaller amounts more often and drink plenty of fluids to keep hydrated. The Cancer Society provides a free booklet: Eating Well During Cancer Treatment
• You could also ask to be referred to a dietitian for advice and support.
• Although remaining independent and doing things for yourself is extremely important, also try to accept offers of help from others.

Anxiety and Depression

If you’re living with secondary breast cancer, it’s common to have ups and downs and to experience a range of emotions, including distress,anxiety and depression.

Distress is a normal reaction for someone diagnosed with advanced cancer and this will come and go. However continuing episodes of shortness of breath, pounding heart and restlessness may indicate a heightened, ongoing anxiety state.

Ongoing low mood, low energy and concentration, sleep and appetite changes, anger, irritability might point to depression.

Attention to nutrition,exercise and sleep, use of breathing techniques and mindfulness may help some people get through periods of sadness and worry with the support of family and friends.For others, the psychological impact of their cancer affects their ability to do day-to-day things. When this happens, professional services can help.

Sometimes medication may also help and your treatment team may suggest anti-depressants, anti-anxiety drugs or other medications. Don't be ashamed to admit that you’re finding it hard to cope and need help, or that you need to take medication. Some people find it particularly hard to seek professional advice, but it can help to relieve these symptoms and allow you to regain some control of your life.

Complementary therapies such as aromatherapy, massage or reflexology can help you to relax and reduce stress and anxiety.

Your treatment team or GP can refer you to services to provide emotional and psychological support.They should let you know what informal and formal support is available, and how you can access it.