Author: estewart

Caregiver Questionnaire

JPH Guide

M: Diffuse Intrinsic Pontine Glioma (DIPG)

Medical

Medical: DIPG

Medical: Tumor Types

My DIPG Navigator and the Chad Tough Foundation

In the United States, there are approximately 110 million adolescents and young adults aged 15 to 39. Among them, around 208,620 are living with either a primary brain or spinal cord tumor, collectively known as central nervous system (CNS) tumors. Despite their rarity, CNS tumors are the most common form of cancer in this age group and rank as the second leading cause of cancer-related deaths among adolescents and young adults, with the top spot for those aged 15 to 24.

Although overall cancer survival rates have been increasing, the same progress hasn’t been seen in adolescents and young adults. Transitioning between pediatric and adult cancer care is often challenging for this age group, compounded by the unique molecular features of their tumors, which can differ from both pediatric and adult CNS tumors. This discrepancy complicates accurate reporting, diagnosis, and treatment.

Adolescents and young adults are in a pivotal stage of life, dealing with developmental changes and asserting independence while pursuing education, work, or starting families. These factors impact their ability to stick to treatment plans, attend appointments, and afford medical care. Additionally, they may require specialized support such as mental health counseling, vocational assistance, and family planning services, making it crucial to address their unique needs and the barriers they face in accessing care.

To gain insights into how CNS tumors affect this population, NCI-CONNECT, the Central Brain Tumor Registry of the United States (CBTRUS), and the American Brain Tumor Association (ABTA) collaborated on a new statistical report. Published in Neuro-Oncology, this report builds upon a 2016 publication, analyzing statistical trends among adolescents and young adults with primary CNS tumors in the United States from 2016 to 2020. It’s the first report of its kind to delve into this distinct population while integrating recent molecular data on tumor classifications.

The location of brain tumors also changes with age. In younger adolescents and young adults, tumors tend to appear in areas of the central nervous system that develop early in life, like the cerebellum and brainstem. As individuals age, these types of tumors become less prevalent, while tumors in other locations such as the meninges, the brain’s four lobes, and the pituitary gland become more common. In fact, among adolescents and young adults, non-malignant pituitary tumors were the most frequently occurring CNS tumors, particularly among those under 30 years old. The most common malignant tumors were adult-type diffuse gliomas, particularly lower grade ones like astrocytomas and oligodendrogliomas. For adults over 40, there’s a higher likelihood of developing higher grade gliomas, especially glioblastomas, which is why much of the research is concentrated on these types of tumors. 

0A67F0EA-1E0E-40C6-B94F-737DB6EBCF24

See fact sheet for full statistical report of information gathered from 2016 to 2020, and represent ~99.9% of newly diagnosed brain and Central Nervous System tumor cases reported to US cancer registries during this time period.

Read More

News

Statistical Report Highlights Key Trends in Adolescents and Young Adults with Brain Tumors

In the United States, there are approximately 110 million adolescents and young adults aged 15 to 39. Among them, around 208,620 are living with either a primary brain or spinal cord tumor, collectively known as central nervous system (CNS) tumors. Despite their rarity, CNS tumors are the most common form of cancer in this age group and rank as the second leading cause of cancer-related deaths among adolescents and young adults, with the top spot for those aged 15 to 24.

Although overall cancer survival rates have been increasing, the same progress hasn’t been seen in adolescents and young adults. Transitioning between pediatric and adult cancer care is often challenging for this age group, compounded by the unique molecular features of their tumors, which can differ from both pediatric and adult CNS tumors. This discrepancy complicates accurate reporting, diagnosis, and treatment.

Adolescents and young adults are in a pivotal stage of life, dealing with developmental changes and asserting independence while pursuing education, work, or starting families. These factors impact their ability to stick to treatment plans, attend appointments, and afford medical care. Additionally, they may require specialized support such as mental health counseling, vocational assistance, and family planning services, making it crucial to address their unique needs and the barriers they face in accessing care.

To gain insights into how CNS tumors affect this population, NCI-CONNECT, the Central Brain Tumor Registry of the United States (CBTRUS), and the American Brain Tumor Association (ABTA) collaborated on a new statistical report. Published in Neuro-Oncology, this report builds upon a 2016 publication, analyzing statistical trends among adolescents and young adults with primary CNS tumors in the United States from 2016 to 2020. It’s the first report of its kind to delve into this distinct population while integrating recent molecular data on tumor classifications.

The location of brain tumors also changes with age. In younger adolescents and young adults, tumors tend to appear in areas of the central nervous system that develop early in life, like the cerebellum and brainstem. As individuals age, these types of tumors become less prevalent, while tumors in other locations such as the meninges, the brain’s four lobes, and the pituitary gland become more common. In fact, among adolescents and young adults, non-malignant pituitary tumors were the most frequently occurring CNS tumors, particularly among those under 30 years old. The most common malignant tumors were adult-type diffuse gliomas, particularly lower grade ones like astrocytomas and oligodendrogliomas. For adults over 40, there’s a higher likelihood of developing higher grade gliomas, especially glioblastomas, which is why much of the research is concentrated on these types of tumors. 

0A67F0EA-1E0E-40C6-B94F-737DB6EBCF24

See fact sheet for full statistical report of information gathered from 2016 to 2020, and represent ~99.9% of newly diagnosed brain and Central Nervous System tumor cases reported to US cancer registries during this time period.

Read More