Grim Brain Cancer Diagnosis: The weight of life-changing news
Receiving a cancer diagnosis is undeniably life-altering. However, when that diagnosis reveals the primary tumor is located in the brain, the news can feel particularly devastating – a truly Grim Diagnosis. This revelation plunges patients into a state of shock and disbelief, leaving them reeling from the impact. For families and loved ones, it ignites a similar storm of emotions, marked by uncertainty and a profound sense of being lost.
Kaitlyn Pfeiffer’s experience vividly illustrates this overwhelming feeling. Her mother’s grim diagnosis of glioblastoma multiforme, an aggressive form of brain cancer, led her to a place of deep despair. She found solace and direction through the Direct Connect Program offered by the End Brain Cancer®|Chris Elliott Fund. “Sometimes you don’t realize the sense of hopelessness you feel until you are in it,” Kaitlyn explained. “The more I learned about the disease, the more discouraged I became. I felt lost, with nowhere to go, and whenever I sought direction from hospital staff or physicians, I sunk further in despair.”
The End Brain Cancer initiative became a crucial lifeline, providing Kaitlyn with a sense of support and actionable guidance. They equipped her with essential questions to ask her mother’s medical team, a turning point that shifted her perspective. “It felt like there was someone finally on our side,” she shared in an interview with CURE magazine, highlighting the profound impact of feeling understood and supported during such a challenging time.
Dellann Elliott Mydland, Chair and President of the End Brain Cancer®|Chris Elliott Fund, emphasizes the commonality of Kaitlyn’s experience. For many patients facing this grim diagnosis, the journey begins in a hospital emergency room following a neurological event. The news is often delivered by an on-call neurosurgeon, followed swiftly by a recommendation for brain surgery, typically within 72 hours. This incredibly tight timeframe forces families to rapidly become proactive advocates for their loved ones, navigating complex treatment options and seeking crucial second opinions under immense pressure.
Mydland stresses the critical opportunity presented during surgery to analyze the tumor’s molecular and genomic characteristics. “There is an opportunity to determine the molecular and genomic makeup of the tumor with an adequate sample taken during the surgery,” she advises. Furthermore, determining the patient’s MGMT status is equally vital. MGMT, or O6-methylguanine-DNA methyltransferase, is a biomarker that can predict a patient’s response to specific treatments. However, Mydland points out a concerning trend: often, only a small tumor sample is collected, potentially limiting the scope of genomic testing and valuable data crucial for future treatment strategies. She also cautions that not all local hospitals are equipped to perform these advanced tests.
Mydland advocates for a significant shift in the standard of care, regardless of where a patient enters the healthcare system. “Wherever you enter the health care system — be it a local hospital or an academic medical center — the standard of care needs to change. It needs to include genetic testing, MGMT status and protein marker testing,” she asserts. Facing a grim diagnosis like brain cancer necessitates immediate access to leading neuro-oncologists and participation in cutting-edge clinical trials.
Statistics from the National Cancer Institute reveal the significant impact of primary malignant brain and central nervous system (CNS) tumors. In 2014, an estimated 23,400 new cases were projected in the United States, including diagnoses in children and adolescents. Sadly, overall mortality rates have remained largely unchanged over the past decade. These figures underscore the urgent need for advancements in treatment and support for those facing this grim diagnosis.
The Direct Connect Program directly addresses this need, acting as a vital bridge connecting patients to clinical trials, advanced treatments, and leading specialists. It offers a lifeline of hope and practical assistance during an incredibly challenging time. The End Brain Cancer®|Chris Elliott Fund is actively fundraising to expand the Direct Connect Program and other essential services, aiming to raise $1.2 million over three years. This expansion aims to significantly increase the program’s reach, with the goal of guiding 4,800 cancer patients annually into clinical trials by the end of 2018, and reaching 9,600 patients annually by the end of 2021.
For anyone impacted by a grim diagnosis of brain cancer – patients, caregivers, family, or friends – the Direct Connect Program is a valuable resource. They offer comprehensive support, from scheduling appointments and securing second opinions to facilitating access to advanced treatments, clinical trials, and top specialists. Reach out to their Care Coordinator Team at 800.574.5703 or via email at [email protected] to access the support you need throughout your journey.
