Antonio Pérez, a pediatrician and director of the CRIS Advanced Therapies Research Unit at the University Hospital of La Paz, says that it is not very common for adolescents who have had cancer to end up studying Medicine: only “brilliant students” enter the race and the treatments are The middle of the student period makes it very difficult for them to reach the cut-off grades. Lucía de la Torre and Jaime Fernández succeeded. Both of them, after being treated by Pérez himself, are studying the course with the aim of helping patients who go through their situation with a point of view that many doctors lack: that of those who suffered the disease in their own flesh.
In a classroom at the Autonomous University of Madrid, where Pérez teaches and Lucía receives them (Jaime studies at the Complutense University), the three of them reflect on what the disease means at the beginning of life and what it will mean to graduate. “They will be great professionals who have also lived through the disease. They will become researchers who will know the important needs that exist and they will truly be the great speakers and the ones who will give visibility to what we need”, says the doctor.
And what they need, Lucía adds, is more support for research so that one day a “100%” cure for cancers can be achieved. “Without investigation, I would be dead right now. If you see a traffic accident, people stop to help, but they don’t do it if they don’t know what’s happening, ”she says, requesting attention for foundations like CRIS against cancer, which she has had a lot to do with the treatment of she.
Childhood cancer is still a rare disease, which in Spain presents 14 out of every 100,000 children. But it is, at the same time, the greatest cause of mortality in childhood and adolescence (272 children under 19 years of age died of tumors in 2021, according to the INE). Leukemia represents approximately a third of the total and, although the five-year survival rate in Spain is 84%, according to the latest Report from the Spanish Registry of Childhood Tumors, the small percentage that relapses has a very poor prognosis: they only get over it. about half.
The leukemias suffered by Jaime and Lucía were “very, very aggressive”, in the words of their doctor. Jaime, who is now 20 years old, was diagnosed when he was 12, when he “was not yet very aware” of what such a disease meant. He had “Philadelphia positive” acute lymphoblastic leukemia, a subvariant that accounts for about 3% of cases of this disease. Although conventional therapy went well, two years ago he relapsed, for which he underwent a bone marrow transplant. He is now receiving third-line treatment (used when two have already failed).
Although the disease changed everything in his life, today he is optimistic. He is convinced that he will get ahead, although he has consequences that are already irreversible. “One of the things that I would like to improve is to monitor side effects more closely. I have necrosis of the hip and until I had the resonance and so on, maybe a year or more passed. I don’t know if something could have been done, but until you are diagnosed there is no possibility of changing it”.
Today Jaime can lead an almost normal life, but with limitations:
—I can’t do any kind of sport, but I can walk, although sometimes it flares up and I need crutches.
—When they put the hip replacement on you, you’ll be much better and the pain will subside, the doctor says.
Pérez acknowledges that there is a challenge with the sequelae of the treatments. Medicine bases its efforts on ensuring that children survive, and in this field there has been enormous progress in recent decades, but the price is usually secondary effects that accompany patients for the rest of their lives, which affect more women, and who often remain invisible by the statistics of remissions and survival.
Lucía, who is 22 years old, also considers the issue of the aftermath to be key. Probably because they directly affect her and prevent her from leading a life like any girl her age (she can’t play sports either, for example). Like Jaime, she was diagnosed with cancer at the age of 12: osteosarcoma of the right distal femur. Although the tumor disappeared with chemotherapy and surgery, the treatment produced a refractory secondary acute myeloblastic leukemia (which does not respond to conventional treatments) that appeared at the age of five.
She was saved by a bone marrow transplant from her brother. But then again, the aftermath came. She suffered what is known as “graft-versus-host disease”, common after this type of intervention. At first she had it acutely, with “constant diarrhea of blood, sores in the mouth and difficulty swallowing.” “She took a lot of corticosteroids, which make you hungry, but since she could hardly eat, she had a lot of anxiety,” she recounts. Then she manifested the same disease in a chronic form, with skin rashes. After several treatments she managed to control them with an experimental therapy. “Now I’m quite stable,” she says, fresh from an anatomy exam that went “very well.”
growing up with cancer
Both Lucía and Jaime were children with cancer, spent part of their adolescence in treatment and have begun their youth with relapses. What was previously seen by the pediatrician, at a given moment is treated by the oncologist (in Spain the specialty of pediatric oncology is not recognized).
At Hospital La Paz they are working on that transition, not only for cancer, but for other complex diseases. “We are generating more and more survivors, more kids who beat the disease and who, however, still need medical care or monitoring,” explains Pérez, who admits that this change from pediatricians to other types of doctors can be somewhat abrupt for the youngster . “Pediatricians are, I don’t know if it’s the word, but more affectionate.”
With connected teams, this transition is becoming more gradual in La Paz, which has a unit for adolescents with cancer that is halfway between the Disney-themed decorations of the children’s rooms and the cold plants of the adults. “We integrate psychologists, adult doctors, children, professionals from other areas, to work on that change. And we are constantly connected with the new doctors who treat what were our patients”, points out the pediatrician.
“It is a humanization that is part of the investigation. I always say that the best way to help Jaime and Lucía is to investigate and treat them with love. They will give the answers to the questions that we do not have today, because they have experienced this firsthand and they are very committed people, as well as brilliant”, defends Pérez.
They still have a long way to go. They are in the first and second years of Medicine, respectively, a few years behind what would correspond to them by age, since both have left many months on the road with the treatments. After so much time in the hospital, his vocation is to continue helping others. Lucía says that she has had it since before she got sick. “Later I even wondered if she was idealizing doctors and that’s why I wanted to study the career.” Jaime is clear that he has lost many things in his life due to cancer, but that without it he would not have followed the path he undertook.