1. Take a Deep Breath

Most brain tumors don't require immediate intervention. You most likely have several days or longer to find the right medical team. If you have already been treated at a local hospital, consider reaching out to a hospital that specializes in treating brain tumors for your follow up care.

You suspect you might have a tumor:

Symptoms of brain tumors can be headaches, seizures, difficulty thinking, weakness or loss of control of body, and problems with vision and balance. These symptoms could also point to problems besides a brain tumor.

Risk factors for brain tumors are largely unknown. A small percentage of brain tumors are linked to genetic disorders[1] and known environmental hazards such as exposure to certain toxins or viruses.[2] For the most part, brain cancer affects older adults, especially Caucasian men.

You may be tempted to try and figure out why you have a brain tumor. This is a waste of time. Brain tumors can be the result of a myriad of things, so it's nearly impossible to pinpoint one cause. Unless, say, you spent your childhood sticking your head inside the microwave and turning it on. Because that's probably why you have a brain tumor.–Everywhereist[3]

Preparing for Your Doctor's Appointment

Some brain tumors will be found due to an emergency such as a seizure. Much of the time though, there will be less urgent symptoms that allow you to make a standard medical appointment. Your primary care physician may initially refer you to a neurologist, radiologist, or oncologist depending on your symptoms. For these appointments, bring important medical information, including surgeries you have had, your medical conditions, medications you’re taking, food and drug allergies you have, your family medical history, and your health insurance information.[4]

Bring someone with you to the appointment. If it turns out it’s something less serious, it didn’t hurt to have a wing-man with you, and if you get bad news, it is important to have someone who is less emotionally impacted and can take notes and ask questions. It is a good idea for you to each bring a notebook.

Allow extra time to get to the appointment, especially if it is at a center you have never been to with a doctor you have never met. If you get lost or hit traffic, you don’t want to go into this kind of appointment stressed. You may also need to fill out forms before the appointment starts.[5]

Testing for Brain Tumor

Your first step will likely be a neurological exam, where your doctor looks for signs of unsteadiness or imbalance, changes in vision, hearing loss, and speech difficulty.[6] Your doctor may do things like testing your eye movement by following a moving finger or have you walk heel-to-toe in a straight line to test your coordination.[7]

Next, there will be some imaging scans of your brain. These scans can show the size and location of the tumor and allow the physician to predict the type of tumor prior to pathological confirmation with brain tissue biopsies. The most common scans for brain tumors are MRIs, as well as CT scans. Occasionally, your doctors may also use fMRIs, PET scans, or EEGs.

An MRI scan [glossary] is the most detailed, cumbersome, and expensive way to look at your tumor. It is a tunnel-shaped machine that uses a magnetic field and radio waves to create detailed images of the brain. MRIs don’t hurt and usually aren’t that bad—often the worst part is worrying about what the results will be.

Make sure your medical team knows about any metal that may be in your body, such as a pacemaker. Since MRI uses magnetism, this could be extremely dangerous.[8] If you are claustrophobic, MRIs may be a bit scary—sedation or open MRIs could be options to ask your doctor about.[9] MRIs are also extremely loud, so ask your doctor about using headphones or earplugs. It is crucial to lie very still while in the MRI.

A CT scan [glossary] uses x-rays to image the brain. CT scans are more accessible and less costly than MRIs, but give less thorough information. They cannot be done as often as MRIs because of the small risk of DNA damage that comes with x-rays, especially in children.[10]

Compared to an MRI, a CT scan is like a walk in the park. A very short walk.–Everywhereist

For many imaging technologies, a dye may be injected into your vein before or during the scan. Tell your doctor if you are allergic to iodine or have kidney disease, because the dye could be harmful.

Diagnosis is likely not the only time you will have these tests done. They are also done just before surgery to get the best idea of where the tumor is, at various stages of treatment to see if it’s working, and to monitor for recurrence.[11]

To confirm your diagnosis, your doctor will need actual samples of your tumor. This can be done through a biopsy [glossary] which is more common when a tumor is in a part of the brain that would be dangerous to operate on, and only a small piece is extracted. Resection [glossary] is when a tumor can be surgically removed, which is ideal for pathology.

After Diagnosis

It is normal to feel scared. Your doctor may be calm because he or she likely has to do this every day, and your loved ones may seem calm because they are trying to be strong for you--but this is a big change in your life. It is normal to experience feeling fear and helplessness.

Take a deep breath. Though these are highly important issues, it is not necessary to make choices in the instant. Give yourself time to process the information you’ve just been given. Initial reactions can include shock and denial, but will eventually lead to acceptance.

Take only as much time as is necessary to make an informed decision before acting. Most people in non-emergency diagnoses take about two weeks to weigh their options before moving forward with treatment. Brain tumors are unpredictable, so even if you have caught the cancer at an early stage, it is best to act promptly once you’ve made an informed decision.

“Even if it’s a stage one tumor, I recommend not wasting any time… By the time I learned these key lessons, it was too late for mom.” – Ryan Allis, caregiver

A change of diagnosis can happen throughout your brain tumor process. This can happen for many reasons:

  1. A pathologist’s classification of a tumor is a subjective procedure.
  2. Tumors can undergo transformation, usually to a higher grade.
  3. Inspecting only a small sample of the tumor, such as that obtained by needle biopsy, might not be representative of the whole tumor. Most tumors are heterogeneous.
  4. As scientists learn more about biology and brain tumors, they are becoming aware of new differences and new similarities in tumors.[12]

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10 Steps: Living with Brain Cancer