Having the conversation: talking about prognosis

Talking about your breast cancer prognosis with an oncologist can be extremely confronting. Many people with breast cancer naturally have questions about their prognosis while others prefer not to know. But while prognostic estimates are uncertain, they can be a source of hope for some people.

To unpack more about prognosis and answer some of the more commonly asked questions on the topic, we spoke with Dr Belinda Kiely, Medical Oncology Research Fellow at the National Health and Medical Research Council Clinical Trials Centre.

 What is prognosis?

 For people affected by cancer, prognosis usually refers to likely future developments and life expectancy. Information about prognosis is important because it helps people make decisions about treatments and plan for the future. People affected by cancer often have questions about their prognosis, whether their cancer is at an early stage or advanced stage.

Who should I talk to about my prognosis?

 Your oncologist is the best person to ask about your prognosis because they know about you, your cancer, and the treatments you have received. They also have experience looking after many people with the same type of cancer. The information you receive from your oncologist will be more specific to your situation than the information you find searching the internet.

Talking about your prognosis is confronting so it is good to take a family member or friend to the consultation. It can be helpful to tell your oncologist that you would like to discuss your prognosis at the next visit so you can bring others along and allows your oncologist to make sure there is enough time. If you have specific questions, write them down before the consultation.

Can the oncologist tell me how long I will live?

It is impossible to see into the future and nobody, including your oncologist, can tell you exactly how long you will live. I never give patients a single number estimate of their expected survival (e.g. two years or six months) because this implies a level of accuracy that is impossible to provide.

Your oncologist can give you an idea of how your future might look. I find many people find it helpful to think about scenarios: a best-case scenario, a worst-case scenario, and a typical scenario, which is somewhere in between.

For example if someone asks for information about their likely survival time and I know from a clinical trial that the median survival time in a group of similar people starting similar treatments is four years, then I would explain that:

If we imagine 100 people in exactly the same situation, then we’d expect:

  – the five to ten who did best would live longer than 12 years (best-case scenario)

  – the five to ten who did worst would die within 1 year (worst-case scenario)

  – the middle 50 would live two years to eight years (typical scenario)

Most people find this information more helpful than being told only the median survival for your cancer is four years.

Some people want less detailed information and may simply want to know if their survival time is measured in years or months. Other people want to know their chance of being alive for an important event such as the birth of a grandchild, a wedding, or an anniversary.

It is important to talk to your oncologist about the type of information that you would like, and in how much detail. It is also ok to tell your doctor if you do not want information about your prognosis at the present time. Some people prefer not to speak about it at all, or prefer their oncologist to discuss it with family members instead.

What prognostic questions should people with early stage breast cancer consider asking their oncologist?

  • What is the chance of cure?
  • What are the chances of the cancer coming back?
  • How much will this treatment increase my chance of cure?
  • How will I know if the treatment has worked?
  • What is my chance of surviving 10 years?
  • What happens if the cancer reappears?

What prognostic questions should people with metastatic breast cancer consider asking their oncologist?

  • What can I expect in the future?
  • Will this cancer shorten my life?
  • How long can I expect to live?
  • Will the treatment help me live longer?
  • What happens if I stop treatment?
  • Can I continue working?

 How do oncologists estimate prognosis?

Oncologists consider many factors when considering someone’s prognosis. These include factors about you, your cancer, and your treatments, as well as their experience treating other people in similar situations.

What factors are associated with a better prognosis?

In early stage breast cancer:

  • Small tumour size
  • Low grade
  • Lymph nodes negative (no cancer cells seen)
  • Hormone receptors positive

In advanced stage breast cancer:

  • Longer time from original breast cancer diagnosis to cancer reappearing
  • Small volume of cancer or cancer only in the bones
  • Good general health and support
  • Good response to initial treatment
  • Hormone receptors positive
  • HER2 positive
Issue 86
Autumn 2020