Take one step at a time. You can learn about your diagnosis, treatment options, and what to expect after treatment, then decide the best next-steps for you and your family.
Take time to process the information you’re given. You probably have enough time to take a deep breath and think about your next steps. It helps to get a second or even third opinion to confirm your diagnosis and treatment plan.
You’ll want to keep records and business cards from your medical appointments to help you as you meet new doctors and work with insurance. This will include copies of your medical records, current medication and supplement list, diagnostic test results, and a list with phone numbers for all of the doctors, specialists, nurses, etc. on your team (collect their business cards). Consider bringing someone to doctors’ appointments to help you sort through information, ask questions, remember next steps, and keep notes.
All questions are valuable. Talk openly and honestly with your medical team. Consider sharing all of your brain tumor data and details with your full medical team and even other patients or brain tumor registries so we can get to a cure faster. It may seem difficult, but it will help you receive better care.
QUESTIONS ABOUT YOUR DIAGNOSIS
- What is the name of my tumor type?
- How many patients do you see with this type of tumor?
- What are the standard guidelines to treat my tumor vs. what you recommend? Why?
- What are the risks and benefits of the standard treatment? What are the risk and benefits of the treatment you recommend (if different from standard treatment)?
- What is the location and size of my tumor?
- Is there a specialist for this type of tumor in our region?
- Who are the top three experts on this tumor type? Why?
- What are the risks and benefits of each treatment option presented?
- What are the potential symptoms and side effects that you’ll experience from treatment?
- Do I qualify for any available clinical trials? Does that include trials outside of this institution? This is the only way to access some promising new treatments.
- What can I expect at the time of treatment, just after treatment, over the course of recovery, and in the long-term?
- How do I maintain a high quality of life over time?
- What can you tell me about palliative care or other options to help manage my symptoms?
- How do I obtain access to my medical records? Can I get copies or access my electronic file? This can help when you meet a new specialist or if you’d like another opinion.
- What is the potential impact on my insurance coverage and financial situation?