When you are making treatment decisions and learning how to manage your diagnosis, consider your quality of life. Define what “quality” means to you, then take reasonable steps to bring you closer to your quality of life goals.
It helps to recognize that you don’t have to sort everything out at once. It may take some time to deal with each issue that you face, so ask for help if you need it.
Living with a brain tumor is difficult, but a support system can help you through it.
We can help you connect with comprehensive support programs for patients and their loved ones:
- If you wish to speak with someone directly, please call the Support Line at Cancer Support Community, 888.793.9355, or visit them online at cancersupportcommunity.org. You may also try the American Brain Tumor Association by phone at 800.886.2282 or via email at firstname.lastname@example.org.
- If you would like to speak to someone about treatment-related questions or clinical trials specific to brain tumors, you may reach out to The Brain Tumor Network at 844.286.6110, or submit a consultation request online at braintumornetwork.org. For more information on clinical trials and a complete list of resources, visit our Clinical Trials section.
- If you would like to connect directly with another survivor or caregiver, we encourage you to learn more about Imerman Angels, an organization that creates personal, one-on-one connections among patients, survivors, and caregivers.
- Finding a local support group is another good option. No one understands the experience of someone affected by a brain tumor more than somebody else in the same situation. Support groups give patients and families opportunities to talk with knowledgeable people, often including health care professionals, who can educate them and provide information about navigating their disease. Musella Foundation For Brain Tumor Research & Information provides a listing of support groups around the country as well as some internationally.
Support for Young Adults
We recommend the following information and support resources for young adult survivors:
- I’m Too Young for This – Founded by a brain tumor survivor, I2Y has a fantastic website featuring comprehensive resource lists such as financial assistance and scholarships, social networking opportunities, the Stupid Cancer radio show, and more.
- Young Adults Surviving Glioblastoma – This online resource for survivors features survivor stories, live chat, and information.
- Ulman Cancer Fund – A survivor-led organization based in Columbia, MD, with support and networking groups, college scholarships, a survival guide, and community grants to grassroots organizations.
- mAss Kickers – An online portal for survivors featuring discussion forums, videos, and more designed to “educate and inspire.” Created and run by a brain tumor survivor.
- Prepare to Live – A global, survivor-led organization building community among young adult survivors through film, online networking, retreats, and a buddy program.
- Vital Options International – Vital Options was founded in 1983 as the first psychosocial and advocacy organization for young adults with cancer. It also broadcasts The Group Room ® cancer talk radio show weekly.
- Young Cancer Spouses – This site features resources for spouses including practical caregiving tips, stories from caregivers, connection with other caregivers, recommendations, and resources regarding financial and legal issues.
- CancerCare for Young Adults – Information and resources including counseling, telephone support groups, and financial assistance.
- FinAid – Database of scholarships for cancer patients, survivors and others touched by cancer.