About incurable but treatable cancer

Finding out you have advanced or metastatic cancer

Finding out you have advanced or metastatic cancer that can’t be cured can be a shock. However, treatment has changed significantly over the past 20 years.

New options (e.g. immunotherapy and targeted therapy) mean that some incurable cancers can now be managed and kept stable for a long time, often with fewer side effects.

These improvements in treatment mean many people now live with cancer as a long-term illness that is managed with ongoing treatment and support. Cancer may still be part of your life, but it does not have to be the main focus. Many people continue to work, travel, care for their family and do the things that matter to them.

When I was first diagnosed, my advanced bowel cancer had already spread to my liver. I am now on targeted therapy and chemotherapy. I enjoy working part time, chasing after my busy toddler and planning holidays with family and friends. Cancer doesn’t define my life.

Helena

What is metastatic survivorship?

Metastatic survivorship is when people are living with advanced cancer that most likely cannot be cured – and often while having ongoing treatment.

Cancer is called metastatic when it has spread from where it first started to another part of the body. It may also be called advanced cancer, secondary cancer, stage 4 cancer or “incurable but treatable cancer”. It may not go away completely, but treatment may help control the cancer, ease symptoms and support your quality of life.

Ongoing treatment is often a normal part of life for people with metastatic cancer. It may also change over time, depending on how the cancer responds and how you are feeling.

Some people call metastatic survivorship “the long middle” – when treatment continues and life goes on, even though the cancer cannot be cured.

What to expect

Living with incurable but treatable cancer is different for everyone. There may be times when the cancer is stable, and times when the cancer changes, so treatment or symptoms also change. The uncertainty of living with incurable cancer can be hard, but over time, many people find ways to adjust and keep focusing on what matters most to them. Life with advanced or metastatic cancer may include:

• Ongoing treatment – People with advanced or metastatic cancer usually have ongoing treatment to help keep the cancer under control. Treatment they may have includes chemotherapy, hormone therapy, targeted therapy, immunotherapy, surgery and radiation therapy.
• Changes in your treatment over time – It is common for treatment to change. You might hear this called “lines of treatment”. This can happen if the cancer changes or treatment stops working. Changing treatment is a normal part of care of people with advanced or metastatic cancer.
• Periods of stability and change – There may be times when the cancer is stable, and times when it grows or changes. These shifts are often checked with scans and tests and by how you are feeling. This up-and-down pattern can feel unsettling, but it is a common experience.
• Planning around treatment – Many people having ongoing treatment plan activities, work or travel around appointments or the times when they have more energy and feel better. You may find it helpful to build flexibility into plans and routines where possible.

Deciding your goals of care

Over time, what you want from your care may change. This depends on how you are feeling, what treatments can help, how the cancer responds and what matters most to you at the time.

Your goals – sometimes called your goals of care – might include:

• keeping the cancer stable and under control for as long as possible
• easing symptoms or side effects
• living as well as you can.

Your goals are personal, and they can change over time. Your healthcare team will talk with you about your goals and check in with you as things change. It can also help to talk with the people close to you about what is important to you. This is sometimes called advance care planning.

Planning for the future is not only for later in life – you can start at any time. It can mean talking about:

• what is important to you for your quality of life
• what treatments feel right for you
• where you would like to be cared for
• who you trust to make decisions if you can’t.

If you are a partner, family member or carer, these discussions can help you feel more prepared and confident in supporting the person you care about.

For more information, contact Advance Care Planning Australia on 1300 208 582.

"What if" situations

Many people worry about what may happen if symptoms, results or treatments change. This is normal but if it becomes overwhelming, you can seek extra support. Sometimes thinking about possible situations ahead of time can help you feel more prepared.

What if you feel more tired than usual?

Feeling very tired (fatigue) is common. It can be caused by treatment, the cancer, stress or poor sleep. Let your healthcare team know – they can help find ways to manage it.

What if symptoms or side effects become harder to manage?

New or worsening symptoms don’t always mean the cancer has spread. There are often ways to better manage symptoms, including medicines and changes to treatment.

What if you notice you have a new side effect or symptom?

New symptoms can be worrying. Tell your healthcare team about any new or changing symptoms. They can help work out what’s going on and what to do next.

What if test or scan results change?

If this happens, your healthcare team will talk with you about your options and next steps. You will have time to ask questions and make decisions that feel right for you.

What if my partner or family is struggling?

Living with cancer can affect the people who are close to you as well. They can talk to your healthcare team or call Cancer Connect on 13 11 20 for information and support.