Post Treatment Care

Post Ependymoma Treatment: Take Charge of Your Follow-up Care

After initial diagnosis and treatment, you will require continued follow-up. The same steps you took to make initial brain and spine cancer treatment decisions will help you take the reins of your follow-up care. Ask your treating physician about specific recommendations for timing of imaging studies and other follow-up tests. If you have recurrence or progression of your cancer, you should discuss additional ependymoma treatment options, including clinical trials. Do your own research and seek second opinions to ensure you know about the latest brain tumor treatments or experimental therapies. It is important to receive follow-up care from a specialist who is familiar with ependymoma and the treatment. Other specialists and your primary care physician should also be involved in managing your other health issues and general health needs.

It is vital to take care of all medical and wellness needs – including screening and prevention of other cancers – because it is easy for survivors to get distracted by their cancer and neglect other health needs. Don’t try to face brain and spine cancer alone. Support groups and other support services are available at most hospitals and medical centers to help cancer survivors and their families address the psychological, emotional and social consequences of cancer and it’s treatment. Additionally, the CERN Foundation is available to help provide support, answer questions and provide ways to get involved.

The National Brain Tumor Society created Brain Tumor Support Conversations that meets virtually each month. This support group is a safe space where patients and loved ones can talk about the feelings and emotions that accompany any aspect of the brain tumor experience. Brain Tumor Support Conversations are an online support group run by the brain tumor community for the brain tumor community. This group is attended and run by patients and care partners who have had firsthand experience with the challenges and effects of a brain tumor diagnosis.

Additional support programs are available from organizations such as LIVESTRONG and the American Brain Tumor Association.

The American Cancer Society organizes, runs, and facilitates thousands of cancer support groups through its state and local chapters. Their website is an excellent place to start. Another major resource for brain cancer support groups is The Cancer Support Community that provides support, education and hope to people affected by cancer. Visit the National Cancer Institute Cancer Support Groups webpage to learn about different options and search the NCI Database. 

If you have questions about where to turn for support please contact us.

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