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To-Do List for Brain Tumor Patients
Nothing can prepare one for being diagnosed with a brain tumor. But there are some things that might help you cope with it. Following are some suggestions for dealing with your diagnosis:
- Prepare a notebook
- Get a second opinion
- Keep a diary
- Bring someone with you each time you see a physician
- Take notes during meetings with physicians
- Investigate clinical trials
- Take it one day at a time
- Seek out group support
- Register for e-mail lists and websites
Prepare a Notebook
A three-ring binder with divider tabs can help you keep track of information, medications, schedules and personal notes. The sections in your notebook could be broken down like this:
- Physician and consultant's business cards
- Lab reports and scan results*
- Miscellaneous correspondence
- Medication schedules
- Personal notes
The easiest way to get copies of your MRI films, MRI reports and pathology reports is to request them at the time the test is performed. Having these copies will help when you're seeking second or third opinions.
Get a Second Opinion
Multiple opinions will give you peace of mind and give you new choices about treatment options. And you'll want to confirm your diagnosis. The Department of Neurosurgery physicians will review your images and medical history information without you being present. This is called our "Educational Scan Review Program." Please click here here for additional information.
It's also important for your treating physician to discuss your case with major brain tumor centers and other experts, especially if your physician is not a specialist.
But most importantly, you need to choose a physician that you like and trust. You're putting your life into his or her care, and it's the most important decision you'll make.
Keep a Diary
If you choose to keep a diary, it can greatly assist in your care. It can also serve as a readily available source of information for you to refer to. We suggest keeping track of several different items. These include:
- Drug side effects
- List of doctors with whom you have consulted
- Conversations with doctors
- Treatments investigated
- Treatments performed
It may also help you to keep track of your feelings. This is an emotional time, and you will have days when you're feeling despondent and hopeless. But you'll also have days when you feel hopeful and positive. Putting your thoughts down on paper allows you to express these feelings rather than hold them inside. And feeling at peace is an important part of the healing process.
Bring Someone with You Each Time You See a Physician
Your friends and family are a vital support system for you. Don't hesitate to count on them. They want to help.
If you've been diagnosed with a brain tumor, a visit to your physician can be a depressing experience. Chances are you'll go in to a meeting knowing that you'll be getting needed information, but you may not be able to think clearly. Having someone with you who can listen and who knows which questions to ask will make it much easier for you. It will also give you someone to talk to after the meeting, to help you make decisions and understand the information you've been given.
Take Notes during Meetings with Physicians
Taking detailed notes when you meet with your physician can help you. The information will help you if you forget a detail.
Investigate Clinical Trials
Your physician may recommend that you enroll in a clinical trial. Clinical trials are research studies for new treatments. These trials are helping to move us all closer to a cure for all types of brain tumors. The Department of Neurosurgery is continually developing clinical trials.
Take It One Day at a Time
Don't worry about next month or even next week. Take things one day at a time. It'll be easier for you in the long run.
Seek out Group Support
With your diagnosis, you may feel isolated from the rest of the world, and bearing this burden alone will only make you feel worse. Don't hesitate to join a support group. These groups are full of people who, like yourself, have been diagnosed with a life-threatening illness. They not only provide emotional support, but are also a great source of information. You'll have a chance to share information about treatments, medications, nutrition, family conflicts and even financial concerns.
Many hospitals offer cancer support groups. Some may offer brain tumor support groups. Ask your treating physician. The chances are good that they can refer you to a group in your area.
The Department of Neurosurgery offers ongoing educational brain tumor support groups.
Register for E-Mail Lists and Websites
Subscribe to an email list called "BRAINTMR." If you have access to email, this community of more than 1,000 people from around the world can be a valuable resource for you. The members of the group are all involved with brain tumors, and within the group you will find smaller groups dedicated to your specific type of tumor.
Websites such as Virtualtrials.com are an excellent resource for patients with brain tumors and offer everything from detailed treatment information, and discussions about specific brain tumor types to companionship.