The Brain Tumors-Brain Cancer Support Center

Every person is unique, but when you face a challenge like a brain tumor/cancer, you are never alone. Many men and women have faced exactly the same diagnosis and have survived and thrived. The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge.

TSC has scoured the Internet and assembled links to the very best brain cancer/tumor resources: articles, blogs, forums, and tools that can help you make better decisions and take action to overcome the range of physical, emotional, and other challenges you're facing now.

As you’ll see, we always welcome your ideas and suggestions to make this brain cancer/tumor guide even more helpful to survivors like you.

 

JUST FOUND OUT

Survivors Say: The Best Resources for Brain Cancer

• The National Brain Tumor Society is perhaps the best resource for information, support, treatment options, and statistics: National Brain Tumor Society
• Medicinenet.com has information on brain tumors, types of brain cancer (there are more than 120 types of brain tumors!), diagnoses, and coping techniques: Brain Cancer Causes, Symptoms, Prognosis, Treatment

The Big Picture

Brain cancer occurs when cells in the brain begin to to replicate rapidly. The National Brain Tumor Society says that diagnosis is often made through a combination of a neurological examination, brain scans, and/or an analysis of brain tissue (biopsy).

This emedicinehealth/WebMD site covers common signs and symptoms of a brain tumor, including headache, weakness and clumsiness:

Brain Cancer Symptoms

Your Brain Cancer

If you're looking for help understanding the terminology of brain tumors, check out this page at the National Brain Tumor Society:

Glossary

This information-packed Oncologychannel.com page discusses different types of tumors, causes, symptoms, and treatments and their side effects:

Brain Cancer Overview

Mayoclinic.com provides an extensive overview of brain cancer. Topics range from causes and treatments to coping resources and professional medical suggestions:

Brain Tumor

Are you thinking of getting a second opinion about your diagnosis or treatment? Here's what you need to know, from the National Brain Tumor Society:

Second Opinions

When you're first diagnosed with brain cancer you’re sure to have many questions. Here are some you should be sure you have the answers to, from WebMD:

10 Important Questions to Ask Your Doctor

Your World

Coping with your feelings after hearing the news that you have a brain tumor is very difficult. You may even feel depressed. If so, read this advice from the Preston Robert Tisch Brain Tumor Center at Duke University Medical Center:

There's Help for Depression

This information, provided by the National Brain Tumor Society, will be an excellent guide to help you explain your condition to concerned family and friends:

Brain Tumor FAQ

Brain Cancer Myths

Squashing the myths and misconceptions of brain cancer/tumor will help you focus on the facts, and move toward recovery:

• "Aspartame causes brain cancer."
• "If you have a really bad headache it's probably a brain tumor."
•  "Cell phones cause brain cancer."

 

Information and Recommended Links for Survivors

• The National Cancer Institute offers a complete synopsis of brain cancer: Brain Tumor

Types of Treatment

Because brain cancer attacks the body quickly, it’s vital to seek immediate treatment.

Medical Treatment

Surgery, chemotherapy and/or radiation therapy are traditionally used to treat brain cancer, but other treatments are possible, depending on the type you have and its stage. Here are a couple of overviews of medical treatment of brain cancer/tumor:

National Cancer Institute - Adult Brain Tumors Treatment
American Brain Tumor Association - Tumor & Treatment Info

Group Support

As shocking as a diagnosis of brain cancer is, you are not alone. Thousands of people have been diagnosed. Although many have died, many others are still thriving today. Group support is a great way to get a fresh perspective on your struggle.

The Brain Tumor Foundation
American Brain Tumor Association's Tips for Living and Coping

Psychotherapy

A therapist can help you cope with the emotions you are experiencing now. Use Psychologytoday.com's site to find one near you:

Find a Therapist

What do I need to find out from my insurance carrier?

• What does my insurance cover and what is not covered?
• Will my treatments be covered under my plan?
• Are there restrictions and if so, which treatments do I need to pay for myself?

4 Things Survivors Wish They’d Known

• Keep the lines of communication open between you and your doctor.
• Let your doctors and those around you know how you are feeling and what your current symptoms are.
• Ask your doctor periodically what he believes the chances of your recovery are.
• Get a second and even a third opinion on your treatment plan.

What kind of doctors do I need?

Brain surgeons, cancer specialists (oncologists and medical oncologists), and radiologists all care for those with brain cancer/tumor.

Resources to find doctors

• Find a Cancer Doctor
• Doctors and Medical Specialists for Brain Cancer

Books Survivors Recommend

• Living with a Brain Tumor: Dr. Peter Black's Guide to Taking Control of Your Treatment by Peter Black
• Damn The Statistics, I Have a Life to Live!: Coping with a Brain Tumor My Personal Story by H. Charles Wolf
• Ya Gotta Believe: My Roller-Coaster Life As a Screwball Pitcher and Part-Time Father, and My Hope-Filled Fight Against Brain Cancer by Tug McGraw, Don Yaeger, and Tim McGraw
• Curveball: When Life Throws You a Brain Tumor by Liz Holzemer

Information for Co-Survivors  

How you can help

• Get involved, asking you can help a survivor in his/her struggle.
• Make yourself available to share your personal story.
• Assist in researching topics and treatment options.

What to say

• Encourage the survivor, but stay realistic about recuperation and remission.
• Share your experience to other co-survivors/caregivers.
• Emphasize what helped you initially cope with the diagnosis.

What not to say

• Don't be untruthful or exaggerate brain cancer recovery rates.
• Don't offer worst-case scenarios.
• Don't give advice or discuss treatment options you're unsure of.

Things you can do for a survivor today and every day

• Share inspiring brain cancer recovery stories.
• Make yourself available to be contacted as needed.
• Keep the survivor aware of available treatments and new ones that might help his/her type of tumor.

How to build a support network

• Set up a TSC co-survivor profile.
• Find resourceful support groups and online forums.
• Make sure your family and friends are aware of your day-to-day struggles.

How to move ahead in your life as a survivor and thrive physically, emotionally and spiritually.

Remission / Recovery / Recurrence

Staying Healthy, Preventing Recurrence

There are many things you can do to stay healthy while going through surgery, chemotherapy, radiation therapy and/or any other treatments that have significant side effects.

New Therapies

If your treatment plan doesn’t work as you and your health-care team expected and hoped it would, remember that the fight is not over. You'll work with your doctors to re-evaluate and choose a new course of treatment, if possible. With complex, challenging conditions such as brain cancer, many treatments are re-evaluated after trial and error.

Emotional Ups and Downs to Expect

The initial impact of a diagnosis such as this can be emotionally devastating. You are likely to go through a rollercoaster now, with times of motivation and hope along with ones of depression, hopelessness, and doubt. That's all normal. But where one treatment fails, another may succeed. Do not give up! Other people have survived brain cancer and you can too.

Give Back

Now that you are starting your path towards recovery, you can become a light for someone just like you.

Terminal Illness

• Facing death is the worst fear of everyone who's ever struggled to survive a brain tumor. It's important that you, your family and your friends find support now if you are facing end-of-life issues. The National Brain Tumor Societys' section on grief and bereavement can be a great help, and be sure to turn to the society for help in finding a support group or help for caregivers: Grief & Bereavement