You are not alone in your journey with a rare brain or spine tumor. The NCI-CONNECT Clinic brings together adult patients with the same rare brain or spine tumor and their caregivers to receive special services. First visit services include:
- A review of your diagnosis. Our team will evaluate your tumor tissue prior to your first visit to confirm your tumor type. We will also look for gene changes that could cause cancer and help us treat it.
- Consultations with our expert healthcare team. These include:
- Group meetings with a health and wellness expert. You will learn coping and wellness techniques and meet others with your same diagnosis.
- Personalized meeting with a genetic counselor to determine if you or your family are at risk for developing cancer.
- Meeting with our expert healthcare team to answer questions about your diagnosis and discuss treatment and clinical trial options.
To participate in the NCI-CONNECT Clinic, contact us at NCICONNECT@mail.nih.gov or call 240-760-6530.
A precise cancer diagnosis allows doctors to determine the best treatment for you. It also helps predict your prognosis - the likely outcome of your disease or your chance of recovery.
In preparation for your first NCI-CONNECT Clinic visit, your case is reviewed by a neuropathologist, a doctor who examines brain and spine tumor tissue to make a precise diagnosis. The neuropathologist will review the pathology of the tumor to learn more about the size, shape, and appearance. He or she will also determine the staging - the extent of cancer in the body and whether it has spread.
Our team asks for tumor tissue in the form of tissue block or unstained slides from the hospital where you had surgery. If you have not had surgery or a biopsy, our NCI-CONNECT healthcare team may consult with NIH’s neurosurgical oncology team.
Our neuropathologist will:
- Examine the tumor tissue closely under a microscope looking at alterations in the tissue.
- Consult with other clinical specialists to discuss the imaging and clinical features of the tumor.
- Perform special genetic-molecular analysis to better classify the tumor. This may include gene-panel sequencing and DNA methylation testing.
This precise diagnosis enables doctors to personalize your care. The pathology results will be discussed with you during your consultation with our healthcare team. After your visit, all of your records from your NCI-CONNECT Clinic visit will be shared with your physician at home.
Healthcare Team Consultation
Our expert healthcare team meets with you to help you understand your diagnosis, discuss possible treatment options, and follow-up plans.
During your NCI-CONNECT Clinic visit, you will have a personalized meeting with a nurse practitioner and a neuro-oncologist. Our healthcare team is specialized in treating rare brain and spine tumors and will work together with your physician at home to ensure you get the best care.
Our healthcare team will:
- Evaluate your history, tests, MRIs, blood work, and pathology results.
- Meet with you to talk about your medical history.
- Discuss your pathology results with you.
- Select the best treatment or care plan for you.
- Meet with you to discuss your treatment or care plan. This may include clinical trial options.
- Answer any questions you may have.
- Share your test results and care plan with your physician at home.
CARES Group Meetings
Health and wellness counselors teach you ways to improve your health and well-being in CARES (Coping, Advocacy, Relationships, Education, Support).
Coping with a rare brain or spine tumor may make you feel isolated and unsure of how to stay healthy. This can also affect your loved ones. Our CARES health and wellness counselor wants to share some positive coping strategies that may help you get through each day so you can continue to live fully.
During your NCI-CONNECT Clinic visit, you and your loved ones will have a CARES group meeting with a health and wellness expert. You will learn coping and wellness techniques and meet others with your same diagnosis.
During a CARES meeting, you will:
- Learn techniques to improve your and your caregiver’s quality of life.
- Learn tips from others with your diagnosis.
- Get educational resources.
Follow us on Twitter for more coping tips @NIHBrainTumor #NCICONNECT #careaboutrare.
Join our closed Facebook group, NCI-CONNECT Community, to connect with other patients and caregivers.
Genetic counselors determine if your cancer is hereditary and what that means for you and your family.
During your NCI-CONNECT Clinic visit, you will have a personalized meeting with a genetic counselor. A genetic counselor helps determine if your cancer is hereditary, passed down through a family, and what that means for you.
While very few central nervous system cancers are hereditary, all are caused by genetic changes. Studying these changes helps researchers understand why brain and spine tumors occur in certain people. It also helps researchers develop treatments and improve care.
Our genetic counselor will:
- Meet with you to talk about your personal and family medical history.
- Decide if genetic testing is right for you. Researchers will review your saliva, blood and tumor tissue samples to look for genetic changes to find out if your tumor is hereditary.
- Discuss genetic test results and how the results affect your and your family’s medical care.
- Answer any questions you may have.