Learning as much as you can about your brain tumor diagnosis, treatment options and support can help you take active measures to improve your care.
The American Brain Tumor Association provides extensive information about brain tumors and treatments. Their “Brain Tumor Information” page is a great place to start for those looking to learn more about their diagnosis and about possible therapies.
The Brain Tumor Network (BTN) is focused on helping adult brain tumor patients, caregivers and care providers who seek personalized information about treatment options beyond standard of care.
The Musella Foundation is focused on helping patients get connected to clinical trials, helping people with financial need with cancer care, and collecting patient-reported outcomes into a “virtual trials” database.
The National Brain Tumor Society provides information specifically geared towards the caregiver, provides information about employment laws and financial considerations, and questions to ask your doctor. They have also created an extensive list of helpful resources for brain tumor patients.
Cancer.net provides a comprehensive variety of information from risk factors to coping with side effects to statistics.
Frankly Speaking About Cancer: Brain Tumors is a resource published by the Cancer Support Community and the National Brain Tumor Society, in partnership with Accelerate Brain Cancer Cure and the Musella Foundation. The booklet provides comprehensive information on brain tumors (both malignant and non-malignant), treatment options, tips and questions to help communication with your health care team, resources for emotional support, and a listing of resources to help you and your family address the cost of cancer care.
The National Coalition for Cancer Survivorship’s Know Yourself worksheet helps gauge what is important to you and what to ask your doctors.
Faster Cures has a publication specifically about glioblastoma which will be satisfying to the science-minded patient. It explains both the disease and the treatment options in scientific detail.
The International Brain Tumor Alliance sends out an informative newsletter about brain cancer research happening around the world.
ClinicalTrials.gov is the go-to place to find information about clinical trials. It is not the easiest to use for most patients, but can sometimes be essential.
Cancer Research Institute focuses on cancer immunology research and therapy development. They have a “Clinical Trials Finder” that patients and families can register for and get personalized guidance.
HealthCare.gov can be an essential resource for those in need of health insurance. It is now illegal for insurance companies to turn you away because you have cancer. Healthcare.gov can help you find the health insurance you need for your treatment.
PubMed is a great resource for people who want to learn about the latest in brain cancer research. It is a search engine for scientific papers, so it is best for patients who have some academic or scientific experience.
American Cancer Society: information
Resources for Caregivers
Caregiver Action Network is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.
Family Caregiver Alliance illuminates the caregivers' daily challenges to better the lives of caregivers nationally, provide them the assistance they need and deserve, and champion their cause through education, services, research and advocacy.
National Cancer Institute: Caring for the Caregiver is a pamphlet created by NCI that addresses how to take care of yourself as a caregiver and where you can go for support as you take this role on in your life.
Cancer Support Community: Tips for Caregivers is a list of ten tips for caregivers including resources and information and how best to take care of yourself.
Resources for Young People
Stupid Cancer is a specialized resource for young people with cancer, providing key information on things like fertility and scholarships, as well as serving as connecting young cancer fighters to one another.
The Ulman Fund provides support, education, and meetups for young people with cancer
Mass Kickers has several campaigns which young people can be involved in, an awareness campaign, an action campaign, and a support campaign
Prepare to Live uses the power of documentary style filmmaking and the worldwide web to create a global community of cancer patients, survivors and caregivers
Cancer Care for Young Adults is information and support groups for young people with cancer