Outcomes Project Results
Thank you to all patients and medical providers that have helped make the EO Project a success. We continue to collect data from adult and pediatric ependymoma survivors. The information obtained through the questionnaire has been complied into a report and will be updated routinely as new data is added. Please check back often to see new information.
The CERN Foundation recognizes the importance of community and sharing information, including life lessons. Listed below are comments collected from the EO Project participants about advice to newly diagnosed patients and family members. Please remember this is subjective information and differs by each person as this journey is extremely personal and distinct for each individual.
- Don’t delay in seeking advice and treatment.
- Seek multiple opinions. Do your own homework with the available resources about ependymoma.
- Get educated immediately – take charge of your own health, join a support group, always get a 2nd opinion and maybe 3rd, get “group” advice before surgery.
- After surgery, exercise seems to be critical to staying strong and improving your health.
- Utilize the Spinal Cord Tumor Association website and gather as much information as you can from the internet. Don’t be afraid to ask questions and get a 2nd opinion if needed.
- Each case is different; it seems to effect people in different ways.
- Ependymoma is not a death sentence. It is life changing, but you can adapt to the new you. Your life is forever changed, but you can thrive if you accept it.
There have been a lot of responses and questions regarding issues surrounding sexuality and reproductive systems. There are a few website that offer information such as MDACC, ASCO, LIVESTRONG, and NCI. Please remember your specific case might not be represented in this data, but all of these websites are reputable and offer quality information.