It’s a scary thought. The idea that something abnormal is growing in your brain. Brain tumors are not always cancer, but either way they can cause a lot of damage and be hard to treat.
After your doctor gives you your diagnosis, it may be hard to hear anything else he or she says. Worry can easily crowd out all other thoughts.
Once you get home, though, you may finally start thinking you want to know all you can about this brain cancer thing. And if you’re like many people, you turn to the internet and your favorite search engine. That may even be how you got here.
But it’s not always easy to figure out which site(s) have the information you want. Which sites can you trust? Is the information up to date?
We try to make it easy for you to get started. These are sites we believe have reliable information and/or offer other help or support. They are not the only sites that can do this. But we think they’re a good place to start.
Once you have a basic understanding, you may come up with questions that aren’t answered by these resources. You might be able to find an answer by following links provided by some of these sites. Or you may need to do more of your own research. But that’s easier when you know what you’re looking for!
We do have a search tips page with advice on identifying good sources for continuing your research.
Brain Cancer Overviews
It’s often helpful to start your learning journey with overviews. These can help you understand where you are now and start to see the path toward where you want to be (cancer-free). These guides are generally clear and easy to understand. Some are more detailed than others.
They cover primary brain tumors (those that start in your brain). Secondary brain tumors are different because they are actually cancer cells that started somewhere else in your body and traveled to your brain. Causes and treatment are usually different for those.
Primary brain tumors: This is a basic overview covering causes, types, treatment, complications and more. It it specific to brain cancer in adults. There is also a page on brain tumors in children. Overall, brain tumors are rare in kids, but certain kinds are more likely to show up in children and at certain ages. This is explained here. Not all tumors in the brain are malignant (cancerous).
Brain and Spinal Cord Tumors in Adults: This is a detailed guide from the American Cancer Society. It answers dozens of questions you may have, from what is brain cancer to treatment options and life after brain cancer.
Brain Tumor from Mayo Clinic: This overview focuses mostly on primary brain tumors, but also explains a little about secondary brain tumors. It also has suggestions for questions you may want to ask your doctor.
Organizations Devoted to Brain Cancer
Many organizations exist to help patients and their loved ones access resources, information and support from people who understand brain tumors and are dedicated to fighting them.
American Brain Tumor Association: The ABTA publishes a lot of information about brain tumors and living with brain tumors, in both adults and children. It also funds research to help improve understanding and treatments. It offers support to patients and caregivers through a variety of programs. The website also offers a searchable list of local support groups across the country.
Children’s Brain Tumor Foundation: CBTF offers information and support to children with brain cancer and their parents. It funds research to better understand the causes and improve treatments of children’s brain cancers.
National Brain Tumor Society: In 2008 two organizations originally founded in the ’80s—the National Brain Tumor Foundation and the Brain Tumor Society—combined to form NBTS. Today the Society provides a wealth of publications and support options for patients and their loved ones. It supports research into brain cancer, including pediatric cancers.
Musella Foundation for Brain Tumor Research and Information: This organization is “dedicated to speeding up the search for the cure of brain tumors.” It runs several websites where it offers information and assistance to patients and their families (virtualtrials.com and braintumorcopays.org; we explain these resources a little later).
Research into Brain Cancer
There is a lot of research going on into brain cancer. Some is basic research to try to understand the cancer better. Other studies try new drugs on cancer patients (called clinical trials). Still other clinical trials look at finding better ways to diagnose it or things that might be able to prevent it.
If you think you’d like to be part of a clinical trial, discuss it with your doctor. You can also look at what kind of trials are being done now and which ones you might be eligible to join:
ClinicalTrials.gov offers a searchable database of trials. You can search by general terms like “brain cancer” or “brain neoplasms” Or you can use the specific kind of cancer you you have, like:
These searches will overlap, depending on each trial’s criteria. If you find one or more trials you think you might like to be part of, talk with your doctor who can help you decide if they’re right for you and help you enroll.
The Brain Tumor Virtual Trial: If you’d like to help further research but don’t want to be part of a clinical trial, you might look into this unique “trial” from the Musella Foundation. You just submit information about how you’re doing monthly to track your progress on whatever treatment you have chosen. The goal is to analyze as much information as possible about various treatments to get a better idea of how well certain treatments or combinations of treatments work. This can help in designing future clinical trials. The site also lets you search for regular clinical trials.
Forums and Support Groups about Brain Cancer
Family and friends can be a source of much comfort during this stressful time. But they may not always understand how you’re feeling. Other brain cancer patients and survivors do. They can help you feel less alone with your fears.
ABTA Online Support Community: This community is hosted at inspire.com and covers topics ranging from new diagnoses to treatments, metastases, non-malignant tumors and more. There’s also a Caregiver corner, grief and loss topic and a just-for-fun area. You are always in control of your privacy settings on the site.
ABTA CareLine: Connect with licensed health care professionals who can answer your questions and help you find the resources you need.
Jenna’s Corner Online Community: This support community is from the Children’s Brain Tumor Foundation. It helps young cancer patients/survivors, their parents, siblings and others connect to share information, support and more.
Family-to-Family Network (F2F): Another CBTF program, F2F connects families dealing with a child’s brain tumor with other parents and cancer survivors for one-on-one support and guidance. CBTF requires mentors to undergo training to be a part of this program in order to ensure a good experience for everyone.
The Healing Exchange BRAIN TRUST: This organization was founded by two brain cancer survivors and runs 10 online (email list) support groups for brain cancer patients and caregivers. Each list has a facilitator to help keep discussions on track.
Other Resources for Brain Cancer
You might also find these resources helpful.
Brain Tumor Guide for the Newly Diagnosed: This booklet, from the Musella Foundation, offers checklists and advice on living with brain cancer, staying organized, dealing with legal issues, insurance, finances and more. It also covers the basics of what brain tumors are and how they are treated. On this page you can either download the PDF or request free printed copies.
Brain Tumor Drug Copayment Assistance Program: Another offering from the Musella Foundation, this program helps people with certain primary malignant brain tumors pay for their drugs. It only covers certain treatments.
ABTA CareLine: Connect with licensed health care professionals who can answer your questions and help you find the resources you need. You can reach out by phone, email, their online form or even FAX.
Understanding the Affordable Care Act: As this law continues to roll toward full implementation (in 2015), you may be confused about how it might affect you, your insurance coverage and treatment options. This page, from the American Brain Tumor Association, attempts to explain the information most important to brain cancer patients.
Caregiver Resources
Brain cancer patients are under a lot of stress, but so are their caregivers. If you are a caregiver, you need support and understanding, too. Finding your own support network can help both you and your loved one cope better.
Care for the caregiver (PDF): This publication from NBTS can help you understand how you can best help your loved one. It offers advice on recognizing your limits, finding support and other help and coping with your own feelings.
The organizations offering support groups and online communities for brain cancer patients also often have groups for their caregivers. Take a look at the Support section above.
There are also many groups open to caregivers of people with any kind of cancer. We list some of those here.