The Sant Pau Research Institute (IR Sant Pau) has created a new research line on Ewing’s sarcoma, which will be led by Dr. Raúl Terés Lleida, Dr. Ana Sebio García, and Dr. María Aguado Sorolla, researchers from the Clinical Oncology Group. This project has been made possible thanks to a donation of more than 90,000 euros raised by the family of Marc Riera i Castellà, a patient who died in November 2022 at the Hospital de Sant Pau at the age of just twenty, due to Ewing’s sarcoma.
In November 2023, Marc’s family and friends organized “Arriarem,” a charity walk and race in which more than 2,500 people participated in the municipality of Fontcoberta, where the funds were raised that have allowed the creation of this new line of research. This initiative fulfilled a wish of Marc’s and mobilized people from all over, with the involvement of public institutions and companies that supported the cause. All the money raised has been entirely allocated to the Sant Pau Research Institute.
The Hospital de Sant Pau, where Marc was treated during his illness, has extensive experience in treating sarcomas for more than 40 years. Since 2015, it has been recognized as a National Reference Center (CSUR) and has been part of the European Network Euracan since 2017.
Ewing’s sarcoma is an infrequent tumor, with an incidence in the Caucasian population of 0.3 cases per 100,000 inhabitants per year. It is the third most common malignant bone tumor in humans, but among adolescents and young adults — the population group with the highest incidence — it is the second most common, after osteosarcoma. The average age at diagnosis is 15 years, and it affects males more frequently.
This tumor is mainly located in the diaphyses of long bones such as the femur, tibia, or humerus (60%), followed by the pelvis, chest wall, and spine (26%), and up to 20% are extraskeletal.
The most common clinical symptoms are persistent bone pain, which may wake the patient at night, or prolonged and unjustified limping (in those located in the lower limbs or pelvis).
Treatment of Ewing’s sarcoma involves polychemotherapy and local treatment (surgery in most cases, with or without radiotherapy, or radiotherapy when surgery is not feasible). In patients with localized tumors that do not respond adequately to chemotherapy, other treatments such as autologous hematopoietic stem cell transplantation are used as a rescue.
With these treatments, approximately 2 out of 3 patients with localized disease at diagnosis are cured. In patients who are diagnosed with already disseminated disease, the initial response to treatments is often very favorable, but in the long term, the prognosis is grim, with a 5-year survival rate of 25-40%. The prognosis is particularly unfavorable in patients with bone marrow involvement, with an average survival of about 1 year.
Research on Ewing’s sarcoma has mainly focused on determining the most effective therapeutic options and seeking new treatments to improve the prognosis of these patients, with notable advances in the last decade. However, the impact on the quality of life of patients who undergo both diagnosis and, primarily, treatments is not as well-defined, which limits the intervention options of health systems to prevent and attempt to minimize these negative effects.
One of the first projects to be promoted in this new line of research will be precisely to analyze the effects of treatments for Ewing’s sarcoma on patients’ quality of life, including physical, psychological, functional, work or study, economic, social, reproductive, and other areas.
The effects of treatment, both short and long term in long-term survivors, are not well known. This prevents the development of an optimal care strategy that minimizes all these impacts and allows patients to maintain the best possible quality of life both during treatment and afterward.
First, the baseline quality of life of patients with Ewing’s sarcoma and the impact of diagnosis, treatment, and possible long-term sequelae will be studied. Then, based on the results, strategies will be implemented in routine clinical practice to optimize the quality of life of these patients.
