Questions to ask at each appointment

Before each appointment, write down your three most important questions. Hand the list to your doctor at the start so they know what you need to cover. You are allowed to ask for clarification on anything. No question is too basic.

What should I ask at my first specialist appointment?

This is the appointment that sets the tone for everything that follows. Your goal is to leave understanding the diagnosis, the options, and what happens next. Some of these questions may have already been answered by your GP. Ask the ones that have not.

• What exactly is the diagnosis, and what does it mean for day-to-day life?
• What stage or level of progression is this, and what does that mean?
• What are the treatment options, and what are the realistic outcomes of each?
• What is the goal of treatment: to attempt a cure, to extend life, or to manage symptoms?
• What happens if we choose not to treat?
• How quickly do we need to make a decision?
• Is there a clinical trial I might be eligible for?
• Has my case been discussed by a multidisciplinary team?
• Who else will be involved in my care, and what do each of them do?
• How do I get in touch with the team between appointments? Is there a nurse I can call?
• Can you write down the diagnosis and the recommended next steps for me?

It is very common to forget 80 per cent of what is said in a first specialist appointment. Bring someone with you if you can. Ask permission to record the conversation on your phone.

What should I ask before starting any treatment?

Before you agree to any treatment, you are entitled to fully understand what you are signing up for. A good specialist will welcome these questions.

• What is this treatment meant to achieve?
• What are the most likely side effects, and how severe are they typically?
• How will side effects be managed?
• What does a week of treatment look like in practice? Will I be able to work? Drive? Care for myself?
• How long will treatment last?
• What will we measure to know if the treatment is working?
• What happens if the treatment stops working?
• What are the alternatives if I do not want to proceed with this treatment?
• Are there clinical trials I should know about before we start?
• Is there a second opinion you would recommend I get before deciding?

What should I ask at review appointments during treatment?

Regular review appointments check whether treatment is working and whether your overall plan still makes sense. Use them to reassess, not just to receive updates.

• What do the latest results show?
• Is the treatment doing what you hoped it would?
• Has anything changed in the plan, and why?
• How are you weighing treatment effectiveness against my quality of life?
• Are there any new side effects I should watch for?
• Is this still the right treatment, or are there better options now available?
• What signs should prompt me to call you before my next scheduled appointment?
• Is it time to involve a palliative care specialist?

When should I ask about palliative care, and what should I ask?

Palliative care is not an endpoint. It is a form of care that can run alongside any other treatment. Asking about it is not giving up. Palliative Care Australia has information about what palliative care involves and how to access it in your state.

• Can you refer me to a palliative care specialist now, rather than waiting?
• What can palliative care help with at this stage?
• What palliative care options are available in my area?
• Can palliative care be provided at home?
• How do I access a hospice if that becomes relevant?
• Who coordinates care between you and the palliative care team?

How do I ask about prognosis, and what should I ask?

Prognosis is one of the hardest topics to raise, but knowing what to expect helps with planning. You do not have to ask these questions right away. Ask them when you are ready.

• Can you give me a general timeframe of what to expect?
• What does the trajectory of this illness typically look like?
• How will I know when things are changing significantly?
• What signs should we be watching for?
• Is there anything we can do to influence the timeline?
• What would change your prognosis estimate?

It is okay to tell your specialist how much information you want and do not want. Some people want to know everything. Others prefer to focus on the present. Either is valid, and a good specialist will follow your lead.

What should carers ask at specialist appointments?

If you are accompanying someone to their appointments, there are questions that matter specifically to you as a carer.

• What can I do to support them at home?
• What should I do if something changes suddenly at home?
• Who do I call in an emergency? Should I call 000 or the palliative care team?
• What services are available to help with care at home?
• Is there support available for me as a carer?
• What should I expect in the coming weeks and months?

How do I get the most out of every appointment?

Bring someone with you. A partner, family member, or trusted friend who can listen and take notes. It is very common to remember almost nothing after a high-stress appointment. Two people remember more than one.

Ask permission to record the conversation on your phone. Most specialists will agree. Listening back later, when you are calmer, often reveals things you missed in the moment.

Write your top three questions before every appointment and hand the list to the doctor at the start. This is not rude. It tells them what matters most to you and helps you leave without regret.

After the appointment, write down everything you remember as soon as possible. Call the specialist nurse if questions come up in the days after. You do not need to wait for the next appointment.

You are allowed to say: "I need more time to think about this before I decide." No reputable specialist will pressure you into an immediate decision on something major.