Book

Prompt, Accurate Diagnosis of Pediatric Cancer and Leukemia:

for Pediatricians, Orthopedists, and Family Practitioners

by Barry Sugarman, B.S., ENGR.

President, The Cure Our Children Foundation

[Editor's note: Barry Sugarman describes the background that has led to a new book in the battle against pediatric cancer. It deals, in part, with the important issue of the early diagnosis of the disease.]

On January 4, 1998, we took our son, Alon Sugarman to a pediatric orthopedist for pain in his right thigh and knee area. An x-ray was taken, and Alon’s initial diagnosis was growing pains. On March 6, 1998, we brought Alon back to the same physician, another x-ray was taken, and a Ewing’s Sarcoma tumor was clearly visible in the new x-ray. Devastated, we sought immediate counseling and treatment from a pediatric hematologist oncologist. Later, we would learn from another pediatric hematologist oncologist that Alon’s initial January 4, 1998 x-ray contained a very small and subtle line indicating the cancer, and it was missed by the physician in January. Those series of x-rays are a part of the training material in this book.

Right after Alon was diagnosed, I spoke to my best friend’s father, an orthopedic surgeon who practiced for over 45 years, and he said that he never saw even one case of this, and referred me immediately to the Mayo Clinic. After hearing that this very experienced and well-trained orthopedist had never seen even one case during his entire career, I theorized that diagnosis of these diseases were likely difficult for all physicians.

During Alon’s treatment, and also after I started our foundation in 1999, I began hearing from numerous parents who were also experiencing misdiagnosis and diagnosis delay for their children that were eventually diagnosed with cancer or leukemia. I spoke with several prominent pediatric hematologist oncologists, and they agreed that this was a problem not only with Ewing’s Sarcoma and Osteosarcoma, but all pediatric cancers and leukemias. They recommended an educational approach to helping solve this problem, and requested that our research address all the different pediatric cancers and leukemia rather than just the bone cancers. Since most pediatricians, orthopedists, or family practitioners will see zero or only one case of any pediatric cancer or leukemia in their practices in a lifetime, not much emphasis or educational material is available to them to address the issue, yet it is clear from our research that children’s lives will be saved and results will be better if early diagnosis techniques are employed.

The issue of delayed or misdiagnosis in pediatric cancer and leukemia is multifaceted, and frequently involves many factors including:

Parents and/or doctors cannot distinguish early symptoms from other disease states.
Most children under 18 years have never had a blood test, an MRI or CT scan so choosing those tests is often met with resistance from parents and children.
Many health plans and HMO’s have impediments to approving blood tests, MRI’s or CT scans in children due to cost containment policies.
Many parents and families cannot afford expensive diagnostic procedures and some parents go into denial when a child may need such procedures.
Symptoms mimic other symptoms of diseases that are very common such as growing pains.

As an ex-CEO of a pharmaceutical manufacturing company, and with my background in pharmaceutical development and healthcare, I took it upon myself to research the issue, and I confirmed the problem of misdiagnosis or delayed diagnosis through reports of late diagnosis received through my website, by phone, and in a very few articles in the literature. I decided after that to pursue a journal article on the topic and created an extensive work plan document, and then hired a dedicated lead researcher / writer, Jennifer Minigh, Ph.D. Our team of writers consisted of myself, my wife, Lainie Shapiro, a chiropractor, Jennifer Minigh, Ph.D., and Andrew Pendleton, M.D., a prominent Pediatric Hematologist Oncologist.

After many months of research, writing and review, the article was done, but the material was a bit to extensive for a journal article, so I opted to publish a book instead. I did not want to compromise any of the material by shortening the length of the content. An important aspect of the book is the tables, charts, and diagnosis flow charts which were taken from literature modified and edited. All of this practical information helps the physician understand the different diseases' early signs and symptoms, and how to recognize those symptoms and take the appropriate actions quickly.

Another important part of the book are example x-rays showing different tumor conditions that present very subtly on regular x-rays, and how those tumors develop if left undiagnosed. Many physicians have x-ray units right in their offices so this is usually one of the first tests performed.

We are in the process of approaching all of the Deans of Medical Schools, Pediatric, Orthopedic, and Family Practitioner Residency programs, and selected Key Opinion Leaders in those fields with the intent of making the material part of all physician training. We are also interested in pursuing Continuing Medical Education (CME) credit for the material for physicians who are already practicing.

We welcome any assistance in the distribution and adoption of this material for the benefit of children.

[Closing note: Please contact Barry if you are interested in learning more about this book. The cover of the book is shown below.]

Prompt, Accurate Diagnosis of Pediatric Cancer and Leukemia: for Pediatricians, Orthopedists, and Family Practitioner. ISBN: 978-1430311751