Brain Tumor Patient and Family Resource Guide

Coping with a brain tumor can be challenging. Get resources to help you navigate the physical, emotional and financial effects of the disease.
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Coping with a brain tumor can be overwhelming. It's a diagnosis that will likely affect many parts of your life – physical, emotional, financial – as well as the lives of people who love you. To help you and your family, friends and caregivers navigate this difficult time, we put together this guide that lists useful information and resources, including support groups.

Brain tumor information and resources

  • American Brain Tumor Association. The ABTA has educational resources and support programs for brain tumor patients and caregivers. Its CareLine offers information on treatments, treatment centers, financial resources and clinical trials (studies of promising new treatments). For the CareLine, call 800-886-2282 (800-886-ABTA) or email [email protected].
  • American Cancer Society. Provides disease-specific information on different types of brain tumors and will connect you with cancer support resources in your area. For more information, visit the website or call 800-227-2345.
  • CancerCare. Services include counseling and support groups, phone support, a financial assistance program and community programs. For more information, visit the website or call 800-813-4673.
  • Cancer Support Community San Francisco Bay Area. Provides free programs for patients and their families, including counseling, support groups, nutrition and exercise classes, emergency financial assistance and patient education programs. Has special programs for teens and younger children. Support services and resources for caregivers and families can be found here. For more information, visit the website or call 925-933-0107.
  • National Brain Tumor Society. Provides information and support services for brain tumor patients and their caregivers. Visit the website or call 617-924-9997.
  • Patient Advocate Foundation. Services include advocacy, case management assistance, financial aid and educational resources. For information, visit the website or call 800-532-5274.
  • UCSF Peer Support Programs for Patients With Cancer. Connects patients with either a cancer survivor or someone who's further along in treatment. For more information, call 415-885-3693 or email [email protected].

Financial resources for brain tumor patients

Prescription programs for brain tumor patients

  • CancerCare Co-Payment Assistance Foundation. Helps patients with co-payments for prescribed treatments, including bevacizumab (Avastin) and temozolomide (Temodar). For more information, call 866-552-6729 (866-55-COPAY) or visit the website.
  • Genentech. Has programs to help patients access and pay for bevacizumab (Avastin). For more information, visit the website or call 888-249-4918.
  • Lazarex Cancer Foundation. A patient advocacy organization that offers financial assistance for the expenses of participating in clinical trials (studies of promising new treatments). For more information, visit the website or call 877-866-9523.
  • NeedyMeds. Helps patients access medications at low or no cost through a patient assistance program and drug discount card. For more information, visit the website or call 978-865-4115.
  • Optum Specialty Pharmacy. Serves patients with specialized prescriptions, including bevacizumab (Avastin) and temozolomide (Temodar). For more information, visit the website or call 877-977-9118.

Caregiving resources for brain tumor patients

Resources for brain tumor patients with children

Suggested reading

The books listed below can help parents and their children navigate cancer.

Books for adults

  • "A Tiny Boat at Sea: How to Help Children Who Have a Parent Diagnosed With Cancer" by Izetta Smith. This easy-to-use booklet explores ways to support children.
  • "Can I Still Kiss You? Answering Your Children's Questions About Cancer" by Neil Russell. A question-and-answer book by a patient who journaled about the questions his children asked during his cancer journey. Appropriate for all ages.
  • "Cancer in Our Family: Helping Children Cope With a Parent's Illness" by Sue P. Heiney and Joan F. Hermann. A nursing professor and a social worker wrote this guide for parents seeking to support their children and ease their fears.
  • "How to Help Children Through a Parent's Serious Illness" by Kathleen McCue. Offering practical advice from a leading child-life specialist, this book discusses what to tell your child about the illness; how to recognize early-warning signs in drawings, sleep patterns, schoolwork and eating habits that your child needs more support; and when and where to get professional help.
  • "When a Parent Has Cancer: A Guide to Caring for Your Children" by Dr. Wendy Schessel Harpham. Practical advice along with a companion book for the kids titled Becky and the Worry Cup. Appropriate for parents with children ages 3 to 13.

Books for children

  • "Because… Someone I Love Has Cancer" by the American Cancer Society. An activity book for exploring feelings about having a parent with cancer. For ages 9 to 12.
  • "Butterfly Kisses and Wishes on Wings: When Someone You Love Has Cancer" by Ellen McVicker. Told through the eyes of a child, the story helps children realize their powers to be an active and integral part of a loved one's cancer journey.
  • "Mom Has Cancer!" by Jennifer Moore-Mallinos. Traces a young boy's anxiety before learning of his mother's cancer diagnosis, how he adapts to lifestyle changes when given honest information and reassurance, and how his family gets back to regular life once treatment is completed. For ages 4 to 8.
  • "Once Upon a Hopeful Night" by Risa S. Yaffe and Troy Cramer. A bedtime tale to comfort kids struggling with their parent having cancer. For ages 3 to 10.
  • "Our Family Has Cancer Too!" by Christine Clifford. A cartoon-illustrated book that describes a family's experience with cancer and how they coped. For ages 3 to 16.
  • "Our Mom Has Cancer" by Abigail and Adrienne Ackermann. Two sisters, ages 11 and 13, describe what it was like for them when their mother was diagnosed with breast cancer and underwent surgery and chemotherapy. For ages 10 to 14.
  • "Sammy's Mommy Has Cancer" by Sherry Kohlenberg. Appropriate as a bedtime story for toddlers and preschoolers or as an early reader for kids in elementary school. For ages 2 to 5.
  • "Someone I Love Is Sick" by Kathleen McCue. Appropriate for very young children (ages 2 to 6).
  • "When Mommy Loses Her Hair: It Means the Medicine Is Working" by Cristen Cervellini-Calfo. This book describes cancer treatment in ways kids can understand and suggests how children can participate in a family member's care. For ages 4 to 8.
  • "When Someone Has a Very Serious Illness" by Marge Heegaard. A cartoon-illustrated coloring workbook to help kids understand their feelings when their parent is ill. For ages 9 to 12.
  • "When Someone You Love Has Cancer: A Guide to Help Kids Cope" by Alaric Lewis. Gives young children a better understanding of cancer while also offering parents and loved ones ways to find strength and the right words. Lays out step-by-step realistic outcomes.

Legal resources for brain tumor patients

Resources for caregivers of brain tumor patients

UCSF Health medical specialists have reviewed this information. It is for educational purposes only and is not intended to replace the advice of your doctor or other health care provider. We encourage you to discuss any questions or concerns you may have with your provider.