Health professionals who are experts in cancer and patient representatives gathered at the XVI Journalists Seminar ‘Cure and care in Oncology’, organized one more year by the Spanish Society of Medical Oncology (SEOM) and the biomedical company MSD, have highlighted the need to improve the quality of life and guarantee the social and work reintegration of long-term cancer survivors through the review of health protocols.

Under the title “Present and future of the long-term cancer survivor patient: Discovering new horizons for addressing their clinical and social needs,” Experts have analyzed the situation of the long survivors. “At present, the concept of long survivor has undergone a change with respect to what we considered until now in Oncology. There is no such rigid concept, we understand that it is a continuous process in which there are early survivors, others who are in transition after having completed treatment and, in addition, there are long survivors, who we generally consider after five years free. of illness”, has detailed the Dr. César A. Rodríguez, president of SEOM.

“In addition,” he adds, “we must take into account another type of uncured long survivor with advanced disease who can remain for very long periods of time with good control of the disease and excellent quality of life and who, like the rest, has a series of needs that require be addressed effectively.”

It is calculated, as reported by the Dr. Ruth Vera, coordinator of the SEOM Group of Long-Term Cancer Survivorsthat in Spain there are about two million people considered long-term survivors, although it has recognized the need for studies to be carried out to identify and quantify exactly how many there are.

The importance of involving Primary Care

Currently, the tumor with the highest number of long survivors is breast cancer due, as explained by Dr. Vera, to the fact that this cancer was the first in which screening programs were incorporated and for which the most follow-up strategies have been implemented. done.

It is in this area that the multidisciplinary approach including Primary Care doctors plays an essential role. “Caring for long-term survivors is a job that cannot be carried out only from a specialist or a hospital, but involves different professionals, both doctors and nurses, psychologists, social workers, as well as various levels of care such as Primary or Specialized Care. ”, added Dr. Vera.

In the same line, Pedro Ferrer, medical manager of the breast cancer and gynecological tumors area of ​​MSD in Spain, has indicated that “patients need a comprehensive and multidisciplinary approach to address the needs they may have in the long term, as well as continuous health monitoring”, and has pointed out the “Company’s commitment to research and develop therapeutic solutions that allow increasing the long-term survival rates and quality of life of patients.

“Shared management is the ideal model of care for long-term cancer survivors. Furthermore, this management should be sequential in the different evolutionary stages of the disease, from diagnosis and treatment to the follow-up phase, so that the weight of care will fall to a greater or lesser extent on Primary or Hospital Care depending on the phase in which the patient is, the priorities and/or needs for assistance at all times,” commented the Dr. Rosario Vidal, medical oncologist at the Salamanca University Care Complex.

In this sense, Dr. Vidal has explained the model of care for long-term cancer survivors implemented in her hospital that, based on SEOM recommendations, guarantees shared management between the Medical Oncology and Primary Care services with specialists from other medical areas involved in the long-term follow-up of these patients and their health needs.

“Coordination between levels and different social agents is the basis for the best health care and attention for all people who need it at any time in their lives, and especially the long-surviving patient,” added the Dr. Yolanda Ginés, member of the Cancer Working Group of the Spanish Society of Family and Community Medicine (semFYC), who has suggested the possibility that in Primary Care there may be a system of direct connection with the hospital doctor in charge and the reference oncologist. Along the same lines, Dr. Ginés has highlighted the importance of collaboration with the Administration and other agents in the socio-health environment to have the appropriate knowledge and resources to develop and coordinate these initiatives.

Medical and psychosocial needs of long-term survivors

And, according to various experts, people considered long-term cancer survivors have various medical and psychosocial needs that must be attended to and addressed effectively to guarantee an adequate quality of life. Specifically, from a medical point of view, oncological treatments can cause various toxicities and side effects such as metabolic syndrome, cardiovascular problems, hypertension, osteoporosis or obesity.

“Some chronic toxicities imply that the patient maintains permanent symptoms that prevent him from leading a completely normal life (and/or similar to the previous one he had) once the oncological treatment has finished, and even taking some treatment for that side effect chronic”, has indicated the Dr. Elena Brozos, medical oncologist at the A Coruña University Hospital Complex (CHUAC).

Likewise, from a psychosocial point of view, long-term cancer survivors may suffer from self-esteem, sexuality, and even fertility problems. For this reason, Dr. Brozos has stressed the importance of training all healthcare personnel, as well as the patients themselves, so that they are aware of the toxicities and psychosocial problems that may appear.

“The needs of a long-term cancer survivor, especially if they have been diagnosed at an early age, are very broad and affect both an organic, psychosocial and neurocognitive level. “This is a burden that they will have to carry for many years and that unfortunately the health system does not adequately cover, with a great lack of assistance protocols for this group,” detailed the Dr. J. Alejandro Pérez-Fidalgo, medical oncologist at the University Clinical Hospital of Valencia and researcher at Incliva.

In this sense, Dr. Vidal adds that, in order to implement an effective care model for long-term survivors in a hospital center, a series of requirements must be met. These characteristics include guaranteeing adequate communication between care levels; establish and define the population targeted by the assistance plan; create the figure of the ‘liaison oncologist’ for the coordination and organization of the model; and promote the continuous training of health professionals as well as the information provided to patients.

On the other hand, during the meeting, oncological forgetfulness was mentioned, a right included in Royal Decree 5/2023, approved on June 28, 2023, which has meant, as Dr. Brozos, a recognition of a situation of “social injustice” that prevented long-term cancer survivors from living a normal life.

“It has been a measure of support for this group to achieve personal and social goals that allow them to lead a fuller life after having overcome the disease. Long-term survivors have to face the performance of roles previously lost in the diagnosis of cancer, and the Royal Decree has helped them achieve many goals such as, for example, economic independence or access to home ownership,” explained Dr. Elena Brozos.

Dr. Pérez-Fidalgo has spoken in the same way, adding that this right has been made effective thanks to the scientific evidence that exists regarding long survivors and the fact that, depending on the stage of the tumor, the age of diagnosis and the time spent without illness, the probability of suffering from cancer drops to levels almost identical to those of the general population.

“We have a lot of scientific evidence that some tumors have a minimal probability of relapse when the disease has not been detected for years. For this reason, the approval of the right to be forgotten oncologically was essential for many long-term cancer survivors,” he emphasized.

Besides, Natalia Díaz Santín, long-term cancer survivor and member of the Association of Families with Lynch Syndrome (AFALynch), has highlighted the legal loophole that exists around people who carry a genetic mutation because, even if they have suffered one cancer (or more), they may never suffer one again, which is why they have asked that they be included the time to guarantee the right to be forgotten oncologically. On the other hand, he has highlighted the key role of language around long-term survivors, “romanticizing some aspects surrounding the disease does not usually help us,” he pointed out, “we must normalize the use of language, and explain reality, with its lights and shadows,” he commented.

Finally, Clara Rosàs, manager of the Catalan Federation of Entities against Cancer (FECEC) and representative of the Association of European Cancer Leagues, explained that for the labor reintegration of long-term survivors, it is necessary to observe “the possible short and medium-term consequences of the treatments, the need for labor agreements that allow flexibility in reintegration into work, or the stigma and prejudices associated with the disease.” Rosàs has also highlighted the need to “provide guides and tools to manage the impact of cancer on organizations accompanied of measures to promote labor reintegration, which can be implemented in small and medium-sized companies.”