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The Oncologist, the Patient and CKN — Sharing Knowledge

Introducing Dr. Gregory Aune, Editor, Knowledge Translation: Childhood Cancer Survivorship

GregoryAuneby Gregory Aune, MD, PhD, CKN Editor

 

Long before I became a pediatric oncologist and physician scientist, I was introduced to cancer on December 26, 1989, at age 16.  On that day I was diagnosed with Hodgkin’s lymphoma and my path in life was changed forever.  My doctors told me my outlook was good, and as a result I rarely contemplated death.  I looked forward to the day the horrific chemotherapy treatments would be over and counted down the days.

 

And then they were over… but during the subsequent 27 years I learned that childhood cancer is not a diagnosis you overcome and then move on with your previous life intact. 

 

My patient experiences motivated me to pursue medicine and science.  I did so with the goal of improving outcomes for other cancer patients, once I had completed that long road.  But along the way I began to consistently encounter health problems caused by my treatments.

 

It began with seemingly minor issues like hypothyroidism or an occasional scare from a new lump or mass.  Then 18 years after my diagnosis of Hodgkin’s disease I developed a second life-changing diagnosis.  My heart had been badly damaged by the chemotherapy and radiation I had received and I needed open heart surgery to replace my aortic valve and bypass three blocked arteries supplying blood to my heart.

 

The experience of open heart surgery as an adult profoundly changed my view of childhood cancer.  Since that time I have developed other complications that stem from my previous treatments, including diabetes, a mild stroke, and secondary skin cancers.  This ongoing struggle with late health effects was the inspiration for both my work in the lab and in providing clinical care to other long-term survivors.

 

While I have been fortunate to survive, I have developed serious concerns for the growing number of childhood cancer survivors in the United States and other countries (over 420,000 in the U.S. alone).   A critical factor in my good fortune in overcoming these secondary health issues is my daily interactions in survivorship lab research and clinical care.  Because of the knowledge I accumulate through these activities, I can advocate for my own care.

 

For most survivors, the situation is far different.  Numerous studies have highlighted a glaring lack of knowledge regarding risks for specific late health complications in both survivors and providers that deliver primary care.  We face a monumental task of educating both adult providers AND survivors.  The good news is that over the past 20 years, survivorship research has consistently accelerated and we now have a large body of knowledge that can improve survivor health.   The challenge is filling the gaps in knowledge noted above.

 

A majority of childhood cancer survivors do not have access to consistent comprehensive survivorship care.  Thus, simply educating patients through traditional office visits is unlikely to address these knowledge deficits.  In the current era of social media and the internet there exists an opportunity to reach survivors via channels outside clinic visits.  VIGEO- Latin for Thrive – is designed with that in mind.  Our goal is to review the latest and greatest survivorship research studies and empower survivors to talk with their doctors about these issues.  Because in the end, it is important that childhood cancer patients not merely survive, but THRIVE.

 

Videos with Dr. Aune

Presentation on YouTube (Jan 2015):  Eliminating Long-term Health Effects in Cancer Survivors – Gregory Aune, MD, PhD

Interview for the National Coalition for Cancer Survivorship (June 2015):  Hodgkin’s Lymphoma Survivor Dr. Greg Aune Discusses Issues in Long-Term Survivorship Care

Interview with the Washington Post Live Summit (Dec 2016): How cancer lives on in young adults after treatment ends

 


 

Dr. Gregory J. Aune is the Stephanie Edlund Distinguished Professor of Pediatric Cancer Research and a St. Baldrick’s Foundation Scholar.  His experience in pediatric cancer spans over 27 years and encompasses his own patient experiences, research in experimental therapeutics, clinical care of pediatric oncology patients, and childhood cancer advocacy.  His interest in pediatric oncology began at age 16, when he was diagnosed with Hodgkin’s lymphoma.  While fortunate to survive, the experiences he encountered as a patient initiated a path towards a research and clinical career aimed at developing less toxic chemotherapy regimens.  His experience as a long-term survivor included open-heart surgery at age 35 to replace his aortic valve and bypass three blocked coronary arteries that were damaged by his teenage cancer therapies.  This life-changing event initiated his research interest in cardiac disease.  His training to become a successful physician scientist and pediatric oncologist has included time spent at some of the most well-respected oncology institutions in the United States including, M.D. Anderson Cancer Center, the National Cancer Institute, and Johns Hopkins Hospital.

Dr. Aune is a national leader in childhood cancer advocacy efforts.  In San Antonio, he has been a leader in local fundraising and awareness efforts.   Since 2010, he has spearheaded efforts by the St. Baldrick’s Foundation and For the Kids Dance Marathon at the University of Texas San Antonio that have raised over $830,000 for childhood cancer patients and research efforts.  In September 2014, his appointment to the National Cancer Institute Council of Research Advocates (NCRA) was announced by NCI Director Dr. Harold Varmus at a White House briefing on childhood cancer.

In addition, Dr. Aune is a policy advisor for the National Coalition for Cancer Survivorship, serves on the Board of Directors of the American Childhood Cancer Organization, is a member of the St. Baldrick’s Foundation National Advocacy Committee, and serves on the scientific advisory board for the Canines-N-Kids foundation.

In May 2015, Dr. Aune addressed the 68th World Health Assembly in Geneva, Switzerland and called on the World Health Organization to make childhood cancer a top global health priority.

 


 

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