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 the Cancer support Community at 888-793-9355, or look them up online at www.cancersupportcommunity.org. You may also try the American Brain Tumor Association by phone at 800.886.ABTA (2282) or via email at firstname.lastname@example.org.
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.
Specialized Care and End of Life Considerations
National Brain Tumor Society believes every patient is a statistic of one, therefore each individual patient should consult with both their care team and their loved ones to make the decisions that are ultimately deemed right for them. Here are links to some resources that can help ensure patients and caregivers have the best information available before making important decisions about the continuation of care during disease progression:
Hosted by the Cancer Support Community’s Kim Thiboldeaux, “Improving the Cancer Experience with Palliative Care” brings together experts in the field of palliative care to discuss the importance of understanding and choosing specialized care options. This type of care focuses on bringing together all members of your caregiving team - doctors, nurses, pharmacists, therapists, social workers and others - to provide you comprehensive support and is an important part of the ongoing journey with this disease.
The Center to Advance Palliative Care is dedicated to providing patients, families and caregivers with resources related to specialized care. The organizational website offers general information, a questionnaire to determine if palliative care is right for you, as well as blogs, resources, and a directory to find a provider near you.
The Coalition for Compassionate Care of California provides tools and resources that can assist with planning for advance care medical needs, as well as provide guidance on how to discuss this difficult topic.
Memorial Sloan Kettering Cancer Center provides patients and caregivers an overview of what to expect as you, or someone you care for, begin to consider end of life care and support. You can also find helpful links to resources to assist you with your individual planning.
The American Cancer Society offers extensive information and resources related to important considerations that patients and caregivers might face when dealing with end of life decision-making.
Cancer.Net works in partnership with the American Society of Clinical Oncology (ASCO) and Conquer Cancer Foundation to provide information on numerous aspects of advanced cancer and end of life care.
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.