More of 11,000 young people between 15 and 30 years old will be survivors of childhood cancer in the year 2020, according to data exposed by the scientific co-director of the Spanish Registry of Innocent Tumors (RETI), Rafael Fernández-Delgado.
The expert participated this Friday in an act at the Ministry of Health on the occasion of International Day of the Child with Cancer, that is celebrated this Friday, organized by the Spanish Federation of Parents of Children with Cancer, where they have requested specific measures to improve the quality of life of those affected by childhood cancer.
Taking advantage of this day of remembrance, the Federation has launched the campaign '#folLOVEme', with which they demand the implementation of a follow-up protocol for survivors of childhood cancer that foresees and treats possible sequelae.
According to data from the Federation, up to 70 percent of survivors will experience at least a late effect due to the disease itself or the treatments, with consequences for their health and quality of life. Leukemias have up to five times more risk of recurrence in this group.
In addition, they have an 8.4 times higher risk of death 5 years after completing treatment than their population group by age and gender, and 62 percent have at least one chronic disease.
30 years after the first cancer diagnosis, the risk of chronic disease is 73 percent and of severe illness, incapacitating or death of 42 percent. The most affected systems are the nervous system (39%), the eyes and ears (22%) and the genitourinary system (17%).
In view of these data, Dr. Fernández-Delgado has indicated that the number of survivors is "growing" and it must be "a social concern". "They are a risk group because they have an occasionally precarious health, and some need to be monitored," he said.
For this reason, different experts have insisted on the need to propose different alternatives for individualized monitoring depending on the needs of each survivor, given that, if they are not monitored, "the opportunity for disease prevention is lost and patients will not benefit from Health promotion programs".
"When the child finishes the treatment and the follow-up, an anguish is generated among the parents. They are afraid because their children are left without any support. The silent aftermath is very scary because nobody is watching, "said the president of the Federation, Francisco Palazón.
Along the same lines, he insisted that, for example, adolescents with cancer "are not well cared for" in adult oncology units. Therefore, he reiterated the need for this protocol that health professionals can have at hand with tools to address the aftermath of survivors.
"Parents are worried about who to go to when their children are discharged, and until now, follow-ups are done until they are 18 or 21 years old and then they feel a void." We need more instruments for survivors to know about their illness. factors of primary and secondary prevention, the psychosocial aspects, greater support for the labor and academic insertion, or neuropsychologists for the rehabilitation ", has claimed the president of the Spanish Society of Pediatric Hematology and Oncology (SEHOP).
The scientific co-director of RETI has proposed a new model to carry out this long-term follow-up, that makes a "thorough search of all survivors". The axis would be the RETI database on young people who have suffered a tumor at these ages, which includes up to 90 percent of Spanish survivors.
Thus, it would intersect with other data on mortality, deaths, primary care and information from hospitals of the National Health System (NHS). All with the aim of detecting new secondary tumors, their health problems derived, psychosocial sequels or future neurocognitive.
However, Fernández-Delgado admits that it is "extremely complex" to cross all these data, among other reasons, due to the lack of homogenization in the data between the Autonomous Communities. "For example, the identification number changes when a patient moves from Valencia to Murcia, which makes it difficult to cross the data easily, and it is necessary to seek funding for all this," he recalled.
"I have been reborn"
The manifesto, read by Luisa Castro Hidalgo, a survivor of childhood cancer, has insisted on these reasons because "Only with continuous monitoring after the end of treatment can you live knowing that you can eat the world enjoying every bite. "
"We are all that we overcome, and I am a survivor because I overcame childhood cancer, I have not been born again, but I am aware of the desire I have to be here, I understand that this battle was one of those that I still have to fight. ", he has claimed.