Making decisions about your treatment is one of the most crucial choices you’ll make along your cancer journey, as it could affect your health outcomes and entire life. When you’re dealing with fatigue, complex treatment options, and other difficulties, it’s easy to fall into the trap of allowing others to determine what pathway to take. 

However, taking an active role in your treatment decisions is essential for ensuring that your care aligns with your personal values, goals, and unique needs. Here’s how you can advocate for yourself, find your voice, and take charge of your cancer care.

1. Understand your cancer diagnosis

The first step to advocating for yourself is understanding your cancer diagnosis. Ask your healthcare provider to explain your condition in clear, simple terms. You can try asking questions like:

• What type/types of cancer do I have?
• What stage is it, and what does that mean?
• Are there specific factors about my cancer that influence treatment options?

Take your time to process what’s been explained to you and feel free to ask questions if you’re unsure about anything. You can also try taking notes during appointments or bringing a trusted friend or family member to help you listen in on the conversation. Having your own knowledge empowers you to participate actively in discussions about your care.

You can also find out more about your diagnosis through trusted government health websites like the American Cancer Society (US), Cancer Council (AU), and Cancer Society NZ.

2. Learn about your cancer treatment options

Cancer treatment isn’t one-size-fits-all. There are many different types of cancer treatments available (including surgery, chemotherapy, hormone therapy, radiation therapy, immunotherapy, and targeted therapy). Depending on your diagnosis, you may be presented with one or a combination of these. Each comes with its own benefits, risks, and potential side effects.

Ask your healthcare team to explain the pros and cons of each option so you can make the most informed choice about what’s right for you. Questions to consider include:

• What is the goal of this treatment?
• How does each treatment work? (Some examples include killing cancer cells using medication or boosting your immune system to fight off the cancer)
• What are the potential side effects, and how can they be managed?
• Are there alternative treatments or experimental clinical trials available?

3. Build a support network

The emotional toll of cancer treatment is heavy, but moments of lightness and humour can help alleviate some of the burden. Laughter is a natural stress reliever, releaAdvocating for yourself doesn’t mean you have to go it alone. A strong support network can help you harness the power of community to back your decisions. This may include:

• Family and friends: They can provide emotional support, attend appointments, and help with practical tasks.
• Patient advocates: Many hospitals have patient advocates who can guide you through the healthcare system and address concerns like insurance or access to resources.
• Support groups: Connecting with others who’ve been through similar experiences can provide encouragement and practical advice.

Surrounding yourself with people who respect your wishes and empower your voice is crucial.

4. Communicate clearly with your healthcare team

Effective communication with your healthcare providers is essential. Here are some tips to make sure you’re being heard by everyone on your team:

• Express your values: Let your team know what matters most to you, whether it’s maintaining quality of life, minimizing side effects, or pursuing aggressive treatment.
• Be honest about your feelings and concerns. Openly share your symptoms, feelings, and preferences. This will help your doctor tailor treatments to your needs.
• Ask questions: If something is unclear, ask your doctor to explain it differently or provide written materials to help you understand.

5. Know Your Rights

Understanding your rights as a patient can help you feel more confident in advocating for yourself. These rights often include:

• Seeking a second opinion: You have the right to seek a second opinion from another doctor.
• Informed consent: You must be provided with all the necessary information about your treatment options and given sufficient time to ask questions and fully understand the risks, benefits, and alternatives before making any decisions.
• Access to your medical records: You can request copies of your test results, treatment plans, and other documents.
• Participation in decisions: You have the right to be involved in all decisions about your care.

If you ever feel uncertain about these rights, a patient advocate or legal advisor can provide guidance.

6. Stay Organized

WKeeping track of your medical information can help you feel more in control. It can also reduce stress and ensure you have the information you need when discussing your care. Consider:

• Setting up a calendar for appointments and medication schedules.
• Preparing for your medical appointments by writing down questions or concerns beforehand.
• Creating a binder or digital folder for test results, appointment summaries, and treatment plans.
• Using a journal to track symptoms, side effects, and questions for your doctor.