Women diagnosed and treated for metastatic breast cancer face many of the same issues as those treated for early breast cancer. However, there can be a number of additional emotional, physical and practical challenges. Issues include managing symptoms of metastatic breast cancer and its treatment, adjusting to living with metastatic breast cancer and coping with concerns about facing an uncertain future.
Many women find that their diagnosis gives them a new perspective on life and makes them rethink what is important to them. For some women, the experience of being diagnosed and treated for metastatic breast cancer provides opportunities they wouldn’t have considered before their diagnosis. It’s not always easy, but many women find that with time they are able to adjust to their diagnosis and get pleasure from the things that are important to them.
Some of the more general physical, emotional and practical issues faced by women living with breast cancer are described elsewhere on this site. This section describes some of the physical, emotional and practical challenges faced by women for whom breast cancer has come back or spread to other parts of the body.
Breast Cancer Network Australia (BCNA) has a free resource for women with metastatic breast cancer called 'Hopes & Hurdles'. Visit BCNA for more information.
When treatment stops
Living with metastatic breast cancer (also known as advanced or secondary cancer) involves having different treatments, often over a number of years. In later stages, the cancer may spread more widely and treatments may become less effective.
If you or a family member has metastatic breast cancer, you may find it difficult to read this section of the website. If you find it difficult, come back and read it later when you feel you are able
What happens when breast cancer treatment stops?
Even when treatments stop working, pain and symptom control and support will be available to make the woman as comfortable as possible.
Deciding to stop treatment doesn’t mean giving up hope. Everyone will find hope in their own way – whether it’s about finishing something that is important to them, spending time with family and friends or thoughts about an afterlife, if that’s what they believe.
Making the decision to stop treatment
The decision to stop treatment is a difficult one to make. It’s important for women and their families to get as much information as possible from their treatment team and to weigh up the possible benefits and the side effects of each treatment. Quality of life is important.Ultimately, the decision to stop cancer treatment is the woman’s decision. Family members or partners may not want this to happen.
It can be helpful for women to ask a doctor, counsellor or psychologist to talk to their family or partner about any concerns they may have.
The decision to stop treatment is a difficult one to make. It’s important for women and their families to get as much information as possible from their treatment team and to weigh up the possible benefits and the side effects of each treatment. Quality of life is important.Ultimately, the decision to stop cancer treatment is the woman’s decision. Family members or partners may not want this to happen.
It can be helpful for women to ask a doctor, counsellor or psychologist to talk to their family or partner about any concerns they may have.
Facing the possibility of dying
Many people are scared of dying. This is only natural. However, dying can be a very peaceful process. Those who work with people who are dying often say there is a sense of calm around the person who is dying.The process of dying for women with metastatic breast cancer does not happen in an instant. The body usually gets weaker over time and this can help women to let go.
Health professionals say that most people know when they’re dying. It can be reassuring to know that everything is done to keep the person as pain free and comfortable as possible and that family and friends can be present. Some women say they would like to die at home and this is often possible.
It can be difficult to talk to others about fears and thoughts about dying. It can be helpful for women to express their fears and concerns about dying to their health care team, family and friends. This can also help others to express their fears and grief, and can bring people closer together.
Unfinished business
Many women with metastatic breast cancer find that facing an uncertain future makes them think about the relationships and friendships that are important to them.
This can be a time for women to heal and strengthen the relationships and friendships that are important to them and to come to terms with events in their life. This is a very personal experience, and it’s important for women to do what feels right for them at the time.
Tips based on things that other women have found helpful
- Some women think about relationships or friendships that are important to them and make contact with friends they have not seen for a while.
- Some women feel they want to resolve a past ‘falling out’ or conflict or to say something to someone that they felt unable to talk about in the past.
- It’s unrealistic to think that all the conflicts in past or present relationships and friendships will be resolved. Prioritise those who are important to you and with whom you want to try to resolve any issues.
- Some women find themselves thinking about the past and decide to visit the place where they were born, or go through old photographs. This can be a good way for women to come to terms with the events in their life.
- Others find it helpful to write letters to close friends or family, or to prepare a tape or video to be given to children or grandchildren after their death or at major events in their lives.
Putting your affairs in order
It’s important to think about the practical aspects of preparing for death, although this can be difficult. Planning in advance can ensure that a woman’s wishes are acted upon. It can also prevent any painful decisions that the woman’s partner or family might need to make if she doesn’t make her wishes known.
Legal considerations differ in each state and territory.
Living Will/Advanced Health Directive
A Living Will or Advanced Health Directive is a document that states a woman’s wishes or directions regarding her future health care.
It can be helpful for a woman to discuss with her partner, family/close friend and doctor whether or not she wishes to be kept alive by artificial means, or resuscitated if she stops breathing.
A Living Will or Advanced Health Directive can be used to cover matters such as consent to future health treatment and the circumstances in which a woman does or doesn’t want to have life-sustaining measures. The Advanced Health Directive only comes into effect when a woman is no longer capable of making decisions for herself.
Requirements for an Advanced Health Directive may differ by state or territory. An Advanced Health Directive doesn’t replace a protected or enduring Power of Attorney, which enables the holder to manage a woman’s personal or business affairs when she can no longer do so.
Tips for writing an Advanced Health Directive
- Talk to a doctor about what you want and how to write an Advanced Health Directive.
- Decisions in your Advanced Health Directive should be about specific situations rather than a general, ‘do not resuscitate’ statement. Discuss the nature of life-saving treatments and their end results with your doctor so that you are fully informed before you make any decisions.
- A solicitor can prepare an Advanced Health Directive or a standard form can be purchased from a newsagent.
- In some states the document must be signed in the presence of your doctor or the doctor has to provide a certificate to say that you have the necessary decision-making capacity at the time of making the directive.
- A copy of the Advanced Health Directive should be held in your medical file and given to your treatment team. The file should also be marked to indicate that it contains an Advanced Health Directive.
- Plan to review any decisions at regular intervals, but particularly if your health changes significantly.
Power of Attorney
A Power of Attorney is a document given from one person to another to act on their behalf should they not be able to manage their own affairs.
A Power of Attorney can be given to a woman’s partner or another adult, such as a close and trusted friend. The nominated person, known legally as the donee, can also manage the woman’s financial or practical arrangements, if she is unable to do this for herself.
There are four types of Power of Attorney:
- Power of Attorney: someone you trust who can make decisions about your care at a given point in time if you are not able to decide for yourself; if you wish, a Power of Attorney can also manage your financial arrangements if you are unable to do this for yourself
- Enduring Power of Attorney (Financial): someone you appoint who can make financial or legal decisions for you if at sometime in the future you are unable to make those decisions for yourself
- Enduring Power of Attorney (Medical Treatment): someone you appoint who can make medical treatment decisions for you if at sometime in the future you are unable to make those decisions for yourself
- Enduring Power of Guardianship: someone you appoint who can make decisions related to your lifestyle, such as where you will live, if at sometime in the future you are unable to make those decisions for yourself.
These names may vary slightly by state and territory – a member of the healthcare team or a solicitor can provide more information.
Before appointing someone it’s important for a woman to discuss with them the kinds of decisions they might be asked to make. They need a clear understanding of the woman’s views and wishes.
Writing a will
A will outlines who should receive a woman’s possessions and property after her death.
If a woman doesn’t write a will, a government body will decide this on her behalf. This might not be in accord with the woman’s wishes and can also be very costly. A will can also contain instructions for funeral and burial arrangements.
It may also be important for a woman to discuss with her partner, family and/or close friends:
- how any children under 18 years will be cared for
- wishes about funeral and burial arrangements
- preferences about dying at home or in a hospice, palliative care unit or hospital.
A solicitor can provide advice about drawing up a will or making changes to an existing will. It’s better for a woman to do this when she is feeling well.
A woman’s thoughts might change over time and it’s important for her to let others know if she changes her mind.
Questions to ask about your affairs
Listed below are some questions that might be helpful to ask a doctor or a solicitor when putting affairs in order:
- How do I make a Will?
- How do I make a Living Will/Advanced Care Directive?
- How do I appoint a Power of Attorney?
