Dealing with decisions in ABC

When someone receives a diagnosis of advanced breast cancer, there are many decisions to face, now and later. Below are some tips for navigating decision pathways during advanced breast cancer treatment.

As with early breast cancer, the initial (first-line) treatment is often dictated by the type of cancer you have. Your oncologist may recommend hormone therapy, chemotherapy or surgery as the first step in your treatment plan. They may also ask the following questions, to find a treatment that works best for you and your goals:

• What drugs have you had before? How well did your cancer respond?
  There may be something similar your oncologist can use – or not, if you didn’t tolerate a previous treatment well.
• What level of side effects can you tolerate?
  This could affect your health or your ability / willingness to continue treatment.
• What is bothering you the most?
• Do you have symptoms that need urgent addressing? (e.g. with chemo or radiation)
• Other personal considerations (e.g. don’t want to lose hair, major family event coming up)

Everyone approaches decision-making differently, whether that’s actively collaborating in your treatment plan, asking for input from your family, talking to friends or other women with advanced breast cancer, or discussing your options with a counsellor. Do whatever you feel is most comfortable – and don’t be afraid to get a second opinion or switch oncologists if you feel you’re not being best served by your team.

Usually treatment changes are spurred by cancer progression or side effects. The goal of treatment is always to keep you living longer and living well, so if your cancer is progressing on a treatment or if side effects are affecting your quality of life, it’s likely time to try a new treatment. Your oncologist will talk to you about your options, including whether a clinical trial or an unfunded drug could be worth trying.

Some may worry that if they’re on the placebo arm of a clinical trial, they may get worse treatment than if they didn’t take part at all. Rest assured that you’ll still get the same standard of care that you would receive with normal cancer treatment. If you’re on the experimental arm of the trial, you’ll also have the chance to try something extra, such as a new drug. Be aware that clinical trials involve extra work on your end, such as completing surveys, going to extra appointments or having more tests. You can search for clinical trials in Australia and New Zealand through our database.

It can feel daunting to change treatments, as each treatment change may bring you closer to the end of your options. Your oncologist will work with you and your goals if you decide to stop treatment at any point, and they will prepare you when you start to run out of options. Of course, you may like to stop treatment for a short time, to recover from side effects or for personal reasons, like going on holiday.

When it comes to your prognosis, it’s not always easy to predict. Some people don’t want to know their prognosis, while others find it useful to help them plan; whichever camp you fall into, your medical team will support you. Breast Cancer Foundation NZ also funds free counselling sessions with a counsellor or psychologist if you need to talk.

If you’re thinking about stopping treatment it may also be time to think about creating an advance care plan – though you’re not alone if you haven’t made one. Among attendees at a recent BCFNZ webinar, 81% said they hadn’t made an advance care plan yet. An advance care plan helps ensure you get the care you want. You can find more information and tools on making an advance care plan here. 

You can also watch our webinar, ‘Decision-making in ABC’, for more advice on navigating the decision-making process.