EFE / Antonio Cotrim
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They have offered their testimony to the doctors and oncologists enrolled in the 13 International Symposium of the GEICAM Group in breast cancer research, a benchmark in Spain with more than eight hundred associates from more than two hundred hospital centers and institutions.
Pilar Fernandez you don’t know what it is to live without cancer, you have had them of various types, today you have metastatic cancer and “if before I was fighting to heal myself, today I am doing it to scratch time” and also to fight from the association that presides over in investing more in research.
Ana Isabel Iglesias, early breast cancer, qualifies as a whirlwind the turnaround that the diagnosis meant in his life and appeals to the need to make use of the technology of the Big Data so that both patients, doctors and families have a 360-degree vision when facing this ailment.
Màrius Soler, patient and president of the only association in Spain of male breast cancer (INVI), fights to make the invisible “visible” and against the exclusion, stigma and isolation produced by “a man – as many say – has a woman’s disease.”
All three consider that if the patient demands it, because there are some who prefer to know little so as not to sink into fear and stress, the doctor must report everything clearly, truthfully and without sugarcoating reality.
They also point to the need to end inequity when it comes to accessing diagnoses and treatments, closely linked to the place where you live, and the importance of comprehensive care, which includes a psychological, nutritional, physiological, family perspective….
The three do have in common that they struggle to adapt to their new situation, overcome their fears and assume the reality that they have had to live each day.
The incorporation of the opinion and perception of people with breast cancer in the design and development of clinical trials takes on greater prominence, as it offers a more complete perspective and the opportunity to contribute to clinical research to improve their quality of life and the reduction of toxicities of cancer treatments.
This has been shown by professionals in this congress.
Breast cancer: the voice of patients
At the special conference, the doctor Fabrice André, of the Department of Medical Oncology of the Instituto Gustave Roussy, in Villejuif (France), has indicated as a priority in clinical research in breast cancer the integration of the results reported by the patients (Patient Reported Outcomes [PRO]).
To argue this, he has presented the results of a study coordinated by himself, CANTO (of CAN-cer TOxicidades), in which 12,000 women with localized breast cancer assisted in 26 French centers participated.
The objective was to describe the toxicities associated with the treatments, identify the populations susceptible to developing them and adapt the treatments to guarantee a better quality of life.
Through the PROs, premenopausal patients reported a very negative perception of the cognitive impairment caused by chemotherapy.
According to the doctor André, this information should direct the advance of research towards the development of therapies that reduce the cognitive deterioration caused by chemotherapy.
Along the same lines, postmenopausal patients reported the negative impact of endocrine therapy on their quality of life.
As in the previous case, these results indicate that the scientific community should work on projects that avoid this decreased quality of life of patients.
That the voice of patients should be taken into account more in clinical trials has been an aspect also highlighted by another of the speakers, Dr. Eva Carrasco, scientific director of GEICAM.
The physician has presented results of a focus group in which the perspective of patients with breast cancer on de-escalation study designs was analyzed, which seek to reduce treatments, their doses or duration, or even their elimination, in order to reduce toxicities maintaining efficiency.
In his opinion, it is very important to have the opinion of patients before conducting a de-escalation study of treatment.
This type of studies, he explained, are carried out in highly selected populations in which the standard treatment works well enough, although with some ‘but’, such as the existence of side effects (which are intended to reduce), or the cost of the therapies.
Also inconveniences such as, for example, having to lose work hours to go to the hospital to receive certain treatments.
Charging…-–
