At Diagnosis

Brain Tumor Questions

  Download Key Questions for At Diagnosis (PDF)


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.

TUMOR TIPS

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.

Diagnosis Key Questions:

Testing

  • What types of tests will be needed for a proper diagnosis?
  • Where will I need to go for testing?
  • What is the process for determining the pathology of my tumor?
  • Will you test for mutations and methylation?

Symptoms

  • Is there anything else that could be causing these symptoms?
  • What should I be watching for to call for immediate help?
  • What can you tell me about palliative care or other options to help manage my symptoms?

Tumor Type

  • What is the name of my tumor type?
  • What is the grade of my tumor?
  • What is the location and size of my tumor?
  • How many patients have you seen with this type of tumor?
  • What mutations are present in my tumor?
  • What were the results of the methylation analysis? Will these results affect my treatment plan?

Second Opinion

  • Who would you recommend for a second opinion?
  • Should I consider visiting a National Cancer Institute Center of Excellence?
  • Is there a specialist for this type of tumor in our region?
  • Who are the top three clinical and research experts on this tumor type? Why?
  • 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.)

Treatment

  • 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 risks and benefits of the treatment you recommend (if different from standard treatment)?
  • How will the results of genomic testing and methylation analysis affect my treatment plan?
  • 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. You can also visit NBTS Clinical Trial Finder to search relevant clinical trials you might qualify for.)
  • What are novel treatments?
  • What are the potential symptoms and side effects I will experience from treatment?
  • What can I expect at the time of treatment, just after treatment, over the course of recovery, and in the long-term?

Support

  • Will I have access to social work support?
  • Does your office or health system have an online portal that we can use for communication?
  • Will there be enough time during appointments to talk through my questions or should I schedule an additional appointment to discuss them? Is it better to schedule a time with a nurse?
  • How can I reach you if I have questions after today?
  • Does your office or health system have an online portal that we can use for communication?
  • Will there be enough time during appointments to talk through my questions or should I schedule an additional appointment to discuss them? Is it better to schedule a time with a nurse?
  • How will we address mental health support throughout the stages of my diagnosis?
  • How do I maintain a high quality of life over time?
  • What is the potential impact on my insurance coverage and financial situation?