Take advantage of BTN's free, personalized navigation services.
The Brain Tumor Network is a navigation resource for primary brain tumor patients in the United States. This resource is provided at no cost. Whether you seek medical assistance from a Center of Excellence in treating brain tumors, request a second opinion, or explore options for clinical trials, BTN can help you:
Our process involves helping you:
- Understand BTN's navigation services
- Define your expectations
- Gauge your interest in exploring standard of care treatment options, clinical trials or other experimental protocols
- Explore your insurance coverage as it relates to specific options
- Access the information you need to discuss possible care and treatment options with your medical provider
Step 1: Share Your Journey with BTN
Once you have decided you would like Brain Tumor Network’s assistance, we will need to know more about your specific medical history in order to shape our services to meet your navigation needs. If you have copies of your medical records, you can simply share them with BTN.
Step 2: Determine What Questions You Have
Continue the conversation with Brain Tumor Network team members about which services our organization can provide for you.
Things you should consider include:
- Having a conversation with your care provider(s) if you desire to explore a second opinion or additional treatment options. Often your current doctor will be happy to recommend someone for a second opinion. As your current doctor determines how best to proceed with treating your brain tumor, they will likely welcome a second opinion.
- Are you or your family member willing to travel for treatment? If so, how far?
- Are you interested in considering participation in a newly developed treatment or experimental treatment such as a clinical trial?
- Would you like to take the information you receive to your care providers or would you prefer for a BTN staff member to enter into a conversation with your providers with you?
Step 3: Sign Release Form
In order for Brain Tumor Network to have access to accurate medical information to help you explore treatment options specific to your brain tumor, your navigator will ask you to sign a copy of the Brain Tumor Network HIPAA Authorization for Release of Information.
Step 4: Gather Medical Records
If you need assistance collecting your medical information, we can work together to accomplish it as quickly as possible.
BTN will typically request the following medical records:
- Records of all related visits from onset of brain tumor symptoms leading up to diagnosis and treatment
- Pathology reports
- Surgical reports
- Physician notes
- Reports from your brain scans/MRIs as well as a disk with your scans
- Radiation and chemotherapy records
Step 5: Information Gathering by BTN Team
After reviewing your medical records your Brain Tumor Network navigator will begin sorting through available treatments and help identify potential options given your personal medical history and preferences regarding treatment types, ability to travel, and insurance parameters. Then, BTN’s Navigator will identify promising options for you to explore with your care provider.
- If you are newly diagnosed and have been told that you need surgery, we can help you arrange to seek treatment or a second opinion or treatment at a major cancer center. There may be additional treatment options available at large centers, including clinical trial participation.
- If you have already had brain surgery, you may want to explore post-surgical treatment options.
- If you have already been through surgery, radiation and chemotherapy and are facing a recurrence or progression, there may be new treatment options you and your care providers could now consider.
- In some cases, it may be informative to have diagnostic testing of brain tumor tissue to determine if certain types of treatment may be more beneficial for you. If needed, BTN will assist you in making those arrangements.
Step 6: About Testing Brain Tumor Tissue
Personalized medicine is a term that is heard quite often in the context of cancer. As more has been learned about the human genome in general and the genomic and molecular makeup of some cancers in particular, there is great hope that testing an individual patient’s tumor tissue will reveal characteristics which could inform treatment decisions.
Currently, many brain tumor patients treated at comprehensive cancer centers, a designation by National Cancer Institute (NCI), have access to tumor profiling. Access to genetic/genomic testing is also expanding to community-based care. If you have had a biopsy or surgery AND if there is sufficient tissue and sufficient time for the results of diagnostic testing on your tumor to help inform your treatment decisions, BTN can help you explore the possibility of seeking tumor profiling.
Step 7: Discuss Options
Once the Brain Tumor Network team reviews your relevant medical history in light of currently available treatment options, your Navigator will share a manageable number of options for your consideration. The information provided should always be discussed with your care providers, who will help you develop a treatment plan. Once that plan is established, BTN will provide the navigation needed to help you access that care.
Step 8: Stay in Touch
The Brain Tumor Network cares about you and the journey you currently face, which is why our process is focused on providing you the personalized navigation resources you need at each critical time point. No matter what your treatment needs, BTN will continue to help you navigate this challenging journey.