Brain Tumors

Survivorship Plan

Treatments you received and the brain tumor itself may have caused temporary or permanent physical, mental, emotional or behavioral changes. As a result, as you transition from active treatment to post-treatment, it may be challenging to return to the way life used to be before your diagnosis. Instead, it may be more realistic to prepare for a “new normal,” and that will be easier if you have a plan in place.

Survivorship plans aren’t one size fits all. Just like your treatment plan, yours will be designed uniquely for you by you and your health care team. Several physical and mental capabilities will be evaluated as part of your survivorship plan.

Cognition and Function

Specialized tests can help your health care team assess how the tumor and your treatment regimen may have affected your cognitive skills (thinking, remembering, learning and problem-solving) and how you function physically (motor skills, range of motion, etc.). These evaluations are often performed by a neuropsychologist, a specialist in identifying and treating brain-related issues. These rehabilitative therapies may be recommended.

Cognitive behavioral therapy (CBT).This type of therapy can help manage the challenges related to thinking, memory and behavior, as well as the ability to absorb and retain new information. You may also learn strategies to help with the emotional outbursts and changes in mood or personality.

Language and speech therapy. Depending on where your tumor was located, you may experience language and speech impairment that affect your ability to express yourself and to understand others. Rehabilitation with a speech pathologist can help you find ways to improve these communication skills.

Physical rehabilitation. Treatments you received plus inactive periods during hospitalization and recovery take a toll on your body. A physical therapist can develop an exercise plan to increase your stamina, regain strength and improve balance and coordination.

Occupational therapy. You may need to relearn how to tackle certain day-to-day tasks, from getting dressed and in and out of the bathtub to buying groceries and cooking. An occupational therapist can assess your level of function, pinpoint which daily living skills have been affected by the tumor and/or treatment, and help you improve your self-sufficiency by finding new or different ways to perform these activities.

Follow-Up Care Schedule

As a brain tumor survivor, you will need to monitor your health carefully for the rest of your life, as many types of brain tumors carry significant risk of recurrence (returning after treatment). When your active treatment ends, your doctor will discuss your follow-up schedule. This details the need for future appointments, lab work, scans and/or ongoing maintenance therapy.

These routine follow-ups will help your doctors identify any signs of recurrence early and will allow them to check for symptoms of late effects, which are side effects that can occur weeks, months or even years after your treatment ends. Ask your doctor what to expect related to your specific type and grade of brain tumor and treatments you received.

Add these periodic medical appointments to your follow-up care plan, as necessary.

Audiology. Hearing loss or tinnitus (ringing in the ears) could occur after treatment, so it’s important to have regular audiology testing. If necessary, hearing aids may help.

Eye care. Your risk of vision loss or cataracts may be increased. Be sure to have your eyes checked.

Dental care. You are likely at increased risk for cavities, thinning tooth enamel and problems with the roots of your teeth, so visit your dentist regularly.

Hormone levels. These levels should be checked periodically, as reproductive issues or osteoporosis may occur.

Career and Other Pursuits

You may or may not find it difficult to successfully manage the same job or type of job you had before your diagnosis. Before you go back to work, take an honest look at your abilities as related to your previous work and workload. Talk to your doctor about how your follow-up care schedule and any potential long-term side effects could interfere with your ability to perform at previous levels. Then re-evaluate your life priorities, including your career goals. If you return to your previous job and have any concerns, talk to your supervisor immediately about your responsibilities, and be realistic about what you can manage.

These same considerations may apply to any plans, such as taking classes, retiring, starting a home-based business, being a full-time caretaker or traveling for long stretches of time away from health care providers.

Financial Concerns

The expense of maintenance therapies and ongoing follow-up appointments, lost income and other unexpected medical costs can add to the stress you may already feel. Don’t let financial anxiety prevent you from getting the follow-up care or ongoing medication you need.

Ask your nurse navigator or social worker at your treatment facility about resources that may be available to help reduce or manage your treatment-related expenses. Research online, and check out the resources here).