About 80% of children who suffer some type of cancer overcome it. But their struggle does not end when they receive medical discharge. Heart, endocrine and fertility problems or even the appearance of a new tumor are some side effects that can manifest many years later. To prevent and deal with these consequences, survivors ask for a long-term follow-up protocol.
At the age of thirteen, when girls change the games for the posters of their favorite singers, Vanessa Pérez (Valencia, 1991) had more important things to think about. A strong abdominal pain warned her that something was wrong, but she could never have imagined the diagnosis given by doctors: a tumor in the left ovary.
After the removal of the reproductive organ, her oncologist at the La Fe University and Polytechnic Hospital (Valencia) informed her that the tumor was malignant and pronounced the dreaded word "cancer", the disease "from which adults die". The side effects of chemotherapy were difficult to cope with, but the prying eyes of her high classmates were even more so.
This period lasted longer than expected because, four years later, she was diagnosed with a second tumor in the other ovary, which was also removed. In this case, it was benign. Now, at 25, Vanessa, who has graduated in journalism and is part of the Aspanion association, which helps families with children with cancer, only has to go to reviews with the endocrinologist. But the ghost of relapse lives with her.
Like her, 80% of children diagnosed with cancer in Spain overcome the disease. However, being discharged does not mean that their health will not suffer in the following years.
"Depending on the treatment received, survivors may be at risk for chronic diseases: endocrine, cardiac, pulmonary conditions, limitations on fertility, cognitive problems and other chronic diseases," says Lynda Varroan, pediatric oncologist at the Dana-Farber Infant Cancer Center and Blood Disorders of Boston (USA), to Sinc. "Radiation to treat cancer in childhood is associated with an increased risk of developing a new tumor in the radiated area," she adds.
A study conducted by this research center reveals that the quality of life related to the health of young people aged 18 to 29 who overcame some type of malignant childhood tumor was similar to that of adults who were twice their age, that is, between 40 and 49 years old. The dose and duration of treatment, the child's age, genetic predispositions and more or less healthy habits influence when developing future chronic diseases.
Cardiovascular diseases are the most frequent. "Survivors have a high risk of heart problems, such as heart attacks and heart failure, and stroke," says Paul Nathan, director of the Hematology and Oncology Post-Treatment Care Program at the Hospital for Sick Children (Canada).
But not all children who have overcome a cancer are equally susceptible to suffer these ailments. Those who received radiation therapy in some specific areas and those who underwent chemotherapy were treated with anthracyclines, a type of antibiotic used to treat many types of cancer, will be at greater risk.
In the chest area, "radiation can damage the heart in many ways, with damage to blood vessels, heart muscle or valves, and this can increase the risk of heart attack," Nathan says. As for radiotherapy in the head or neck, as a consequence, for example, of brain tumors, infants will be more at risk of suffering strokes in the future.
Because half of childhood cancer cases are treated with chemotherapy that includes anthracyclines, the heart muscle can be damaged and children can develop heart failure as they get older. "This last risk is small, but very high compared to that of the general population," he stresses.
According to research conducted by the oncologist, about 60% of children treated with anthracyclines will have some type of cardiac dysfunction in the future, while 10% of those treated with high doses will suffer heart failure in the 20 years following treatment.
Another side effect that Vanessa herself is suffering is fertility problems. In her case, the surgeons removed part of the ovarian cortex when they removed the second tumor so that she had the possibility of conceiving children later, as has happened with other patients. At the moment, the young woman does not know if she wants to be a mother.
Along with fertility, sexual relationships can also be affected by the cancer footprint
A study in which 105 young people between 15 and 29 years old who overcame the pathology in their childhood participated showed that they had a higher prevalence of sexual or gonadal dysfunctions (in the ovaries and in the testicles).
As for brain tumors and those that need high doses of neuro-toxic treatment, they have been associated with lower rates of psychosexual development in youth and in adulthood.
In addition, specialists remind that, with physical problems, the mental can also make cause damage several years after the healing. "Many survivors believe that cancer does not have much impact on their day to day, but there are patients who will need additional psychological support," says Victoria Willard, member of the Department of Psychology at St. Jude Children's Research Hospital (USA) to Sinc.
That is one of the conclusions of a work directed by the psychologist, who has analyzed how more than 3,000 adults who overcame cancer as a child perceived the disease,” Willard emphasizes.
A girl receives treatment against cancer. / Fotolia
Emotional distress affects many of these adults, the result of the chronic disorders they experience after oncological treatment in childhood. According to research conducted in more than 5,000 cured patients, endocrine and pulmonary pathologies are associated with depression, while cardiac and pulmonary pathologies are associated with anxiety.
On the other hand, the treatment related to these ailments is related to symptoms of post-traumatic stress. In the face of psychological problems of this type, there has been an increase in the prescription of antidepressants in this segment of the population.
Be it physical or mental, "about 75% of childhood cancer survivors experience some late consequences and 25% of them are severe or life-threatening," warns Natalie Bradford, a researcher at the Queensland (Australia) Youth Cancer Service. After analyzing 17 studies on the effects of this disease in adulthood, Bradford is committed to a case by case evaluation.
"Long-term follow-up is needed to monitor the complications of treatment and a second cancer. Each case requires attention and individual referral to the appropriate specialist," the researcher declares.
A request shared by patients and their associations. In Spain, pediatric oncology reference units monitor up to 10 years after the end of treatment.
"After that period, complete tests are performed and the final discharge is made. If there is a sequel as a result of cancer or the treatment received, the child or adolescent is referred to the corresponding specialist," explain sources from the Spanish Federation of Parents of Children with Cancer. "Otherwise, once the discharge is obtained, there is no long-term follow-up protocol", they complain.
Catalina Márquez, coordinator of the Pediatric Oncology Unit of the Virgen del Rocío University Hospital (Seville), recalls that there are international guidelines for long-term surveillance that are adapted and translated into Spanish. Its design depends on scientific societies.
"Work is being done to harmonize care worldwide so that all adolescents and young adults who have overcome childhood cancer have the same opportunities to access an individualized follow-up program," says the oncologist. The system will include the risk of developing long-term side effects due to illness or treatment.
With this same philosophy, the survivor's passport was created, an electronic and paper document that is given to the patient once the medication is finished and that includes all the information related to his / her clinical history. It also describes the type of tumor, its clinical and biological characteristics, the treatment and the surgical interventions performed.
Based on these data, the passport provides guidance on possible side effects and gives recommendations. In Spain, its paper version is beginning to be extended, but the digital version is still lacking, which will be accessible from other European countries.
"If the survivor has a passport, his family doctor can easily refer him / her to the corresponding specialist when necessary, since that document will establish personalized guidelines for long-term follow-up," they staff of the Spanish Federation of Parents of Children with Cancer points out.
In case of not having the passport, the patient should also go to the family doctor, but since the complete data of the oncological treatment do not appear, it will be more difficult to identify the side effects.
"The barriers that these doctors find are the difficult access to the clinical histories and, therefore, the scarce information about the disease and its treatments, in addition to feeling unprepared to evaluate or manage the late effects", adduces Márquez.
Vanessa, at the moment, lacks her survivor's passport. When she was discharged at the age of 21, the passport had not yet been launched. Although at the moment she does not see any symptoms in her organism, she is the first to ask for a long-term follow-up. The young woman is very aware of the effects she may have in the not so distant future.
Along with the physical and psychological sequels, childhood cancer also affects the academic performance of children. Although now the education system is better adapted to these situations, Vanessa Pérez recalls that she did not pass several subjects in her 2nd and 3rd ESO year because she could not attend the exams. In those days, in her hospital there was only one teacher, who gave her Sudoku or divisions to complete, without a syllabus. "Now they adapt it. The teachers are talked to and the exams are done at home and in the hospital. The same as they do in class," she says.
After the academic stage, the professional also suffers. A study of 1,506 Swiss adults who had overcome the disease in childhood revealed that their income was lower than that of their siblings.
"The survival of childhood cancer is associated with a considerable economic burden," says Gery Guy, an economist specializing in health at the Centers for Disease Control and Prevention (USA). After comparing data of survivors and people who had not suffered cancer, Guy and other experts concluded that the loss of annual productivity of the former is about 7,500 Euros per person per year, a figure much higher than the 2,830 Euros of annual losses who has not suffered the disease.
"People who have suffered cancer are more likely to have worse health," says Guy, which can lead certain limitations when it comes to performing a certain task or losing more days of work.
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