CERN FAQ From Inquiries From The Website
1. In 2004, a patient was diagnosed with an ependymoma. Subsequently, two years later, his spouse died of a glioblastoma multiforme. The inquiry received was whether or not the patient or their spouse could have been exposed to anything (a virus, radiology testing such as an x-ray) that may have caused them both to develop brain tumors?
We do not have any specific known risk factors for either ependymoma or glioblastoma. We do know that there is an increased incidence of brain tumors in nuclear industry workers, but no association known with dental x-rays. Although this seems like an unlikely coincidence, it would be very hard to figure out the cause in a single case.
2. I am trying to find research articles regarding the treatment, cause and prognosis of ependymomas? Where can I find this information?
We suggest that you either visit the News and Research area of the CERN Foundation website (located at the bottom right of the homepage) which we update as we learn of new resources OR access articles through PubMed. PubMed is the most up-to-date resource for published research but please be aware that there is traditionally a 6-8 month lag time between the research submission and publication.
3. How can I find the most appropriate physician at MD Anderson for the treatment of “Myxopapillary Ependymoma?”
Patients and their caregivers can contact the MD Anderson Brain and Spine Center’s new patient office at 713-792-6600 to obtain an appointment to see a neurosurgical specialist in spinal cord tumors. If you would like further direction, we can try to direct you more specifically to a specific physician or team of physician’s experienced in your particular ependymoma-related medical issue.
4. I am a female in hopes of becoming pregnant in the future years and have been recommended treatment of both Cisplatin and Etoposide. After researching these chemotherapy agents, I have found that they have been shown to cause infertility in patients. Can you please advise me as to whether or not they would definitely cause infertility?
Because our CERN Foundation medical providers are not experts in fertility issues, we suggest that you seek counsel with an Obstetrics group with expertise in chemotherapy and its’ impact on fertility. These medical providers would be the most appropriate specialists to answer these questions.
5. I am interested in donating to the CERN Foundation and/or its’ affiliated physicians or medical institutions. Who should I contact?
Checks can be made payable to the CERN Foundation and sent attention to:CERN Foundation PO Box 217, Zionsville, IN 46077
Please also include your name and telephone or e-mail address and so that we may send you a receipt of your donation for tax purposes and express our gratitude. You can also donate online.
6. While we’re sure it has been very difficult, we have received inquiries from patients and their caregivers regarding how to donate their own or their loved ones remains to research related specifically to ependymoma. Below are some options for these patients and their caregivers.
Often times a patient may request to donate their remains to their treating medical facility and/or treating medical provider. This can be done by requesting that your treating medical provider order an autopsy. Additionally, there are research organizations that offer this service. One such organization is called Biogift. For more information on Biogift, you may visit their website at www.biogift.org.
7. Multiple blood relatives in my family have been diagnosed with brain tumors. Could there be a genetic link?
There may be a connection. We would suggest that this person consider evaluation by a cancer genetics group.
8. I had an ependymal tumor removed from my spinal cord and am now a paraplegic. What can be done to repair the nerve damage?
Unfortunately we do not have anything that will repair spinal cord injury yet. However, we did suggest that you contact the Miami Project, which focuses on spinal cord injury and regeneration. Their website is www.themiamiproject.org.
9. Are there any possible hereditary links to ependymomas?
Ependymomas with a hereditary link are far rarer than those without a hereditary link. The tumors with a hereditary link are generally in families with ependymomas or other specific cancers in multiple family members. If you or the patient is concerned about a potential hereditary link, you may want to pursue consultation at one of the CERN Foundation medical institutions or elsewhere that they have expertise in research and treatment of ependymomas.
10. General Inquiries such as the following:
- What is my prognosis? - Is it cancer? - Will my ependymoma recur? - What is the best treatment for ependymoma in adults? In children? - Is my current treatment regimen the best or most appropriate for my diagnosis?
Unfortunately, the CERN Foundation medical providers are not able to answer questions such as the ones listed above via e-mail, telephone or other written communication. However, if a patient is able to travel to one of the CERN Foundation affiliated medical institutions, after a thorough review of current and past medical information (including records, films, slides and other pertinent knowledge) and a physical exam, our team may be able to offer insight in to many of these questions and/or help to provide new treatment options.
11. Is there any evidence to support the role of chemotherapy in treating pediatric patients with ependymoma following radition therapy?
Currently, there is no hard evidence supporting the role of chemotherapy after radiation therapy in pediatric patients relative to improved survival rate.
12. How else can I help contribute to the knowledge of the CERN Foundation and its’ efforts in finding a cure and bettering the quality of life in patients with ependymoma?
We are currently running a research project called the Ependymoma Outcomes Survey that addresses and seeks to improve quality of life issues in adult patients with ependymomas. If you would like to be a part of this very important effort, please click here.
13. How can I share my story as a patient/caregiver/friend?
We love to receive words and stories of hope and inspiration! If you would like to share your experience or that of a loved one, please visit our website to submit a photo, your story and name (you can certainly share your story anonymously, too). Click here if you would like to submit your story.
The CERN Foundation welcomes questions about ependymoma and will do our best to answer quickly and honestly. Please contact us if you have any questions!