Living with brain cancer is a different experience for everyone, and you have the right to choose what your life will be like after your diagnosis. Everyone’s journey starts with a different step, and here are ten that you may find helpful.
A brain tumor diagnosis is difficult to face, but there are steps you can take to manage the situation for the best possible outcome. ABC2 (Accelerate Brain Cancer Cure) is here as a friend and teammate to help you think through this scientifically complicated and emotional process.We curated this resource from leading research and support organizations in the brain tumor community, as well as patients who gave first-hand accounts of their experiences living with brain cancer.
Let’s get started.
1. Take a Deep Breath
Most brain tumors don’t require immediate intervention. You most likely have several days or longer to find the right medical team. Learn more about getting started.
2. Decide What’s Important to You
How do you want to live your life with brain cancer? Are you willing to take active measures to fight the disease? There’s no right or wrong way, but make conscious and knowing decisions so you understand the tradeoffs. Read more about what to consider as you decide.
3. Organize Your Support Team
Telling people can be especially hard because it makes the disease feel more real to you, but having your support group together will eventually make things much easier to move forward. Learn more about what makes a great support team.
4. Educate Yourself
Use the web smartly – it can be a dark and dangerous place. Use the resources throughout these ten steps for a curated list of the best brain tumor educational resources. Learn to locate reliable information.
5. Gather an All-Star Treatment Team
You want to be under the care of top doctors who work with brain tumor patients all the time. ABC2 has a list of centers that specialize in brain tumor treatment across the country in the Find Care section. Read about what makes up an all-star treatment team.
6. Create a Treatment Plan with Your Doctor
Based on your tumor imaging, surgery and pathology, understand your treatment options today and in the future. The plan should include care that promotes your physical, mental, and spiritual well-being. Read about what to consider as you and your doctor develop a treatment plan.
7. Consider Joining a Clinical Trial
Clinical trials provide patients with access to emerging, promising therapies. Be sure to ask your neuro-oncologist about specific clinical trials aimed at treating your particular tumor type, and check our resources for finding Clinical Trials. Learn more as you consider joining a clinical trial.
8. Own Your Health Records
Get copies of all your medical reports. After each appointment or test, ask your doctor to provide you with a copy and save it. Read about why it’s so important to own your health records.
9. Own Your Tumor Tissue
It belongs to you and is essential to determining the best treatment. Ask your neurosurgeon to save the maximum amount of both tumor and normal tissue. Insist that it be used only with your consent and for your health. Learn more about how and why you should own your tumor tissue.
10. Test Your Tumor’s Genetic Makeup
Ask your doctors to genetically analyze your tumor. Testing for specific gene mutations can better guide your treatment options. Learn more about getting your tissue analyzed