Like most people, we had never heard of Ewing Sarcoma until Charlie was diagnosed in July 2019. Ewing Sarcoma is part of a group of cancers that affect the bones or nearby soft tissue affecting children and young adults. Annually, 350 kids are diagnosed, making up roughly 4% of pediatric cancer cases.
About half of all Ewing Sarcoma diagnoses are in people between the ages of 10 and 20. These tumors can also affect babies, younger children and young adults in their 20s and 30s and sometimes even 40s. Almost all cases of Ewing Sarcoma occur in white people.
The 5-year survival rate tells you what percent of children and teens live at least 5 years after the cancer is found. The 5-year survival rate for this type of cancer is 75% for children younger than 15 and 58% for teens ages 15 to 19. These statistics are unacceptable and frightening.
So much is put on the shoulders of a child fighting Ewing Sarcoma, and yet, often it is his or her remarkable resilience that provides so much inspiration to others. If mental toughness, heart and a fighting spirit were enough to end this disease – we know that Charlie and others like him would be here. The weak link in the battle against Ewing Sarcoma isn’t in the patient’s mindset, family support or physician care – it’s in the outdated weaponry, in desperate need of continuous improvement to achieve better therapies and cure.
Ewing Sarcoma, if detected early enough, is often treatable and curable. However, both the current treatment options, which still involve toxic chemotherapies, and prognosis for metastatic diseases, (disease that has spread), hasn’t improved in thirty years.
The overall prognosis for patients with recurrent (returning) Ewing Sarcoma is poor; the 5-year survival rate after recurrence is approximately 10% to 15%.[2,5,6]; [Level of evidence: 3iiA] Patients with relapsed or progressive Ewing sarcoma with measurable disease have a 6-month event-free survival (EFS) rate of 13%.[Level of evidence: 3iii]
There is no standardized second-line treatment for patients with relapsed or refractory Ewing sarcoma. Most patients in first relapse are treated with conventional systemic chemotherapy. Patients who demonstrate a response to therapy may undergo local control to sites of recurrence. Every patient is different. Many explore different treatment paths as options narrow.
Due to the rarity of Ewing Sarcoma among pediatric patients, big Pharma and the government do not allocate the necessary funds for developing life-saving treatments and therapies to defeat this aggressive form of cancer. However, for the families affected, it’s no longer a “rare“ disease – it is omnipresent. We want children in the fight of their lives to be the best equipped, and it up to us to create a more promising pathway for them.
The Charlie Landers Foundation is dedicated to improving the course for Ewing Sarcoma patients by raising funds to accelerate the development of clinical trials that lead to impactful treatments, delivering better outcomes and lasting cures.
National Cancer Institute, https://www.cancer.gov/types/bone/hp/ewing-treatment-pdq#_