Living with metastatic breast cancer

Being diagnosed with metastatic breast cancer can be overwhelming as you begin to absorb and process the information. The following 5 tips can be helpful in the first weeks and months when diagnosed with metastatic breast cancer to help you find your way and feel more in control. 

1. Ask questions - asking questions will help you understand what treatments are recommended for you. Before you go to an appointment, write a list of questions you want to ask, putting your most important ones at the top in case you don’t get time to ask them all. 
2. Find a medical team that will work for you and with you - you have an important association with your medical specialists so find a treating team you can trust and who make you feel cared for. Ask for second opinions if you think you need them. Ask how you can see a breast care nurse for support if you are not introduced to one.  
3. Understand the out-of-pocket costs involved - your treatment will extend over a period of time so costs can add up, especially if you’re being treated in the private health system. It’s important to know up front what the out-of-pocket costs of your tests and treatment are likely to be. Talk to your doctor/s and, if you have one, your private health insurer, before you make a final decision about your treatment. You can ask for a second opinion on costs if you need to. 
4. Take your time - most decisions about your treatment don’t need to be made in a great hurry so don’t allow yourself to be rushed. Taking time to ask questions if there are things you don’t understand or talking over the decisions you need to make with your family won’t affect the outcome of your treatment. It can, however, make a big difference to how prepared and in control you feel. 
5. Keep records - if you can, take a trusted family member or friend to your doctors’ appointments to help record and keep track of the information you receive. Take notes, or ask your family member/friend to, so you can refer to the information later. Keeping a record of your bills and any Medicare or private health fund rebates you receive will help you stay on top of your expenses. Store your medical or financial records in one secure place. 

Some key questions you might like to ask your doctor include: 

• What type of metastatic breast cancer do I have and where in my body has it been found? 
• What treatment will I have, how will it be given and what are the possible side effects? 
• How do I access the latest treatments? Are there treatments that I can access via clinical trials? 
• Who are the members of my treating team? Who will be my main contact person? Will I have access to a breast care nurse? 
• Is it possible to get a second opinion? (if you feel you would like one) 
• Will I have to pay for treatment? Can you tell me what my out-of-pocket costs are likely to be? 
• Can I have treatment in a public hospital, so I don’t have to pay. Can I access any financial assistance programs?

Dealing with everyday life can feel overwhelming after a metastatic breast cancer diagnosis.  From how you manage your finances, through to employment and what it means for your family, there’s a lot to think about and organise during an already difficult time. Some questions you might like to ask a member of your treating team include: 

• Is there someone I can talk to for emotional support and can I access psychological support services through Medicare? 
• What support services are available for me to access such as psychology, child care (where necessary) or other social support services?  
• What other financial assistance might be available to me such as accessing my superannuation early or claiming for disability insurance and what evidence will I need from my doctor to support my application? 
• Can you help me connect with other people who have metastatic breast cancer? 

Telling friends and family that you have metastatic breast cancer is not easy. Even explaining what metastatic breast cancer means can be difficult. As well as your own emotions, you have their reactions to deal with. You may find it hard to answer their questions. 

Talking openly and honestly is usually the best way to keep any relationship healthy. Expressing your fears and discussing your needs as an individual and as a couple or family will be helpful. 

Discussing cancer with children is very important and should be carried out in a way that is appropriate to their maturity and age. Good communication with children is an important factor in determining how children will react and cope with having a person in their family with cancer.  

Talking to a member of your treating team (e.g. psychologist) can be helpful to identify strategies to assist with telling family and friends about your metastatic breast cancer diagnosis. 

Some people try to keep their life as normal as possible by continuing to participate in their usual activities, relationships and roles such as paid work, household duties or caring for children.  For some people keeping busy helps to shift the focus away from their illness.  

Some people stop work because they want to spend their time doing things that give them more enjoyment; others stop work because they see this as a way to relieve stress and improve their well-being. However, for some, the symptoms of their disease or the side effects of treatment mean that they have to give up work and other commitments.

Some people diagnosed with metastatic breast cancer want to better understand: 

• what lies ahead of them 
• what living with stable or progressive disease might look like 
• how the disease might affect their daily activities or quality of life. 

The reality is that it is difficult to know what the future will hold. There is simply no one path for metastatic breast cancer. For example, we know some people with metastatic breast cancer who experience long periods where their cancer is stable and there is very little disease progression. Their life continues with little effect on their physical activities of daily living continuing to work and engage in their usual daily activities and they have a good quality of life. Others may have a more difficult experience with changes in treatment.  

Living with uncertainty is a difficult aspect of living with cancer. Thankfully there are many support services to help people with cancer to cope with this kind of uncertainty. BCNA have regular information events to support people with metastatic breast cancer. You can also connect with others living with metastatic breast cancer via BCNA’s Online Network.