All posts tagged: Survivorship

Survivorship Matters Blogg–The Academic Impact of Childhood Cancer Treatment Side Effects

April 2, 2019
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Survivorship Matters Blog By CAC2 Member Mary Beth Collins “Your child has to be alive to experience side effects.”  It’s a statement commonly heard by parents reviewing treatment protocol for a child newly diagnosed with a pediatric cancer.  At that moment, one is only focused on desperately keeping a child alive and achieving No Evidence of Disease, or ”NED” as is commonly referenced. At that time, it’s almost impossible to consider quality of life factors when parents are terrified that without treatment they will lose their child.  According to the Coalition Against Childhood Cancer (CAC2) Fact Library, more than 95% […]

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Survivorship Matters Blog–What Is Survivorship?

February 14, 2019
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What is survivorship?  For anyone touched by childhood cancer, the word is intimate, emotional, and somewhat complicated. Whether you are a child in treatment or beyond, parent, friend, practitioner, or researcher, the word is familiar, personal, and identifying. For each person, the word represents something unique. Is it just a label? Is it elusive? Is it a dream never realized? Is it a charge? Is it determinant? A proclamation? A destination? A victory? A curse?  An honor? Survivorship in its entirety embodies all of this.   All versions are worth exploring, if we are going to really embrace what survivorship means […]

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CAC2 Webinar–Functional and Social Independence in Adult Survivors of Pediatric Brain Tumors

November 1, 2018
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October's All-Member webinar was presented by Tara Brinkman, PhD, Assistant Member in the Departments of Epidemiology and Cancer Control and Psychology, St. Jude Children’s Research Hospital. Dr. Brinkman's recent, first-of-its- kind study sheds light on the degree of achievement of independence by survivors of pediatric brain tumors. Her talk highlighted the prevalence of independence and risk factors associated with non-independence in adult survivors. As part of the presentation, Dr. Brinkman reviewed the impact of independence on quality of life and emotional distress and discussed the implications for interventions. Read more

CAC2 Member Blog–Triage Cancer

November 17, 2016
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By CAC2 Member Angie Giallourakis, Steve G. Cancer Research Fund TRIAGE CANCER: verb. \trē-ˈäzh,ˈkansər\ the assigning of priority order to projects on the basis of where time, funds, and other resources can be best used, are most needed, or are most likely to achieve success in navigating cancer survivorship issues. I was first introduced to Triage Cancer a few years ago at a Critical Mass: YA (young adult) Cancer Alliance conference where a speaker addressed attendees about Obamacare. It didn’t surprise me that shortly after the conference I began receiving some of the most noteworthy information about programs on cancer survivorship. […]

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CAC2 Member Blog–Three Words I Heard from my Pediatric Oncologist that Still Haunt Me

September 28, 2016
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By CAC2 Member Kayla Funk, Open Hands, Overflowing Hearts   The world stopped spinning for a moment. Time beyond the oncology clinic stood still. Though I knew he was right, I refused to believe my doctor and the words coming out of his mouth. “When neuroblastoma progresses through therapy, we are unable to cure it.” I listened, but I ignored him. I was 19 years old and had spent the last 15 months of my life going through gruesome treatments. The cancer should not have grown. “We will try to suppress your disease for as long as possible, but I don’t […]

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CAC2 Member Blog–“Am I Going to Die?” Reflections of a Survivor

August 25, 2016
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By CAC2 Individual Member Angela Lee I remember ‘that day’ like it was yesterday. The sun was shining on a beautiful spring day in Virginia as my mom and I sat quietly in a hospital room waiting for an oncologist to pay us a visit. I was admitted just days before for a series of lab work and tests that reduced me to feeling like a science project. Although I remember that day very clearly, it was 32 years ago that I heard “It’s a form of cancer” followed by my response “Am I going to die?’. On a beautiful [...] Read more

CAC2 Webinar–Psychosocial Standards of Care for Children with Cancer and Their Families

December 19, 2015
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In this All-Member webinar for December 2015, CAC2 welcomed presenters: Dr. Lori Wiener--Co-director of the Behavioral Science Core and Head of the Psychosocial Support and Research Program at the pediatric oncology branch of the National Cancer Institute Dr. Mary Jo Kupst--Pediatric psychologist and Emerita Professor of Pediatrics at the Medical College of Wisconsin Dr. Anne E. Kazak--Co-director of the Center for Healthcare Delivery Science at Nemours Children’s Health System, A. I. du Pont Hospital for Children Psychosocial Standards of Care for Children with Cancer and Their Families will be published in December 2015 in a special supplement of Pediatric Blood & Cancer. [...] Read more

CAC2 Webinar–Childhood Cancer Survivorship: The Consequences of Cure

November 20, 2015
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We were pleased to host guest panelist Dr. Greg Armstrong of St. Jude Children's Research Hospital who provided our November All-Member webinar. In just half a century, we have witnessed a remarkable improvement in survival of childhood cancer. In the 1960’s less than 30-40% of children diagnosed with a malignancy would achieve five-year survival. Now, over 80% of children diagnosed with cancer will become five-year survivors of their disease. As a result, 2013 it was estimated that there were over 420,000 survivors of childhood cancer in the United States, and that by the year 2020 we would cross the threshold of [...] Read more

CAC2 Webinar–Advancing the Quality of Life: Strategic Agenda for Childhood Cancer Through Innovation, Ingenuity, and Advocacy

February 24, 2015
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During our February All-Member webinar our guest, Rebecca Kirch, Director of Quality of Life and Survivorship for the American Cancer Society, discussed and answered questions about the quality of life strategic agenda and its specific relevance for childhood cancer, including information about the upcoming Institute of Medicine March workshop on comprehensive childhood cancer care. Research has improved treatments and boosted survival in some types of pediatric cancer, but treatment toxicities still cause a majority of children to experience distressing side effects and late effects — conditions that often cause significant suffering that continues into adulthood and can last a lifetime. [...] Read more
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