Breast cancer: Fondazione Onda photographed the experience and needs of women with Her2 disease+
Need to receive emotional support and greater information, attention to prevention and best organization of the diagnostic-therapeutic path are the main needs of patients with Her2+breast cancer, which emerged from the Onda Foundation investigation conducted by Elma Research “The experience of patients with cancer in the breast Her2+”presented today
After the diagnosis, one in 4 women stops working and giving up the possibility of having children (60 percent). The perception of time also changes: 37 percent from more value to small things and at the time in general (30 percent), but almost half declare that they are afraid for the future and to negatively perceive the time dedicated to the treatment of the disease (20 percent)
“I feel alone, I can’t move this mountain that does not show me the future”, “from the moment of the discovery of the disease the previous life is put on stand-by”, “only the present is thoughtable: the future creates anguish “,” I feel chained, I feel the victim of the disease “,” I always devoted myself to the family and to my work, now I have to stay at home, being able to do little or nothing and this destroys me “, these are some testimonies of women with cancer Seno Her2+ who participated in the qualitativeitative research “The experience of patients with Her2+ breast cancer” of Fondazione Onda – National Observatory on Women’s and Gender Health, created by the partner research institute Elma Research, with the non-conditioned contribution of Daiichi-Sankyo and Astrazeneca. The results of the investigation were presented today in Milan in space Leonardo, the multifunctional space of Leonardo Assicurazioni Company Benefit, with whom he has been collaborating for some time.
Investigate the most significant moments
The investigation had as its primary objective to investigate the most significant moments and the main critical issues of patients affected by a very aggressive tumor that represents 20 percent of all breast cancers, with an estimate of about 11.000 new cases a year2.
The qualitative part of the investigation was carried out through in -depth interviews with patients with Her2+ cancer in the locally advanced phase and in the metastatic phase, while the quantitative part involved 122 patients, coming from all over Italy with an average age of 53 years, for the More with stable partners (74 percent) and children (78 percent) which in 80 percent of the cases were in therapy, 2 percent of new diagnosis and 19 percent in the follow -up phase.
The investigation revealed four main critical issues for these women: the need to receive emotional support, the need for more information, the value and attention to prevention, the need for a better organization of the diagnostic-therapeutic path.
More in detail
More in detail, it was found that for 35 percent of the interviewees, a psychological support is needed, through the constant presence of the figure of the psychoncologist during the path of assistance; Also courses for the management of stress and relaxation techniques (23 percent) and discussion groups between patients (19 percent) can help to better face the disease. It is in fact a very complex disease, which involves renunciations and changes, just think that a quarter of women following the diagnosis stops working, 60 percent renounces their pregnancy project, change their vision of itself and the own external appearance (75 percent). Despite a great support from family and friends (61 percent) and thanks to the driving of doctors (55 percent), you feel sunny, not very comforted and confused.
The moment of diagnosis also marks a breaking point with previous life determining a change in the perception of time: patients declare to give more value to small things (37 percent) and at the time in general (30 percent). At the same time, almost half declare that it is afraid for the future and one in four perceives negatively all the time dedicated to the treatment of the disease.
Through the data collected with the investigation presented
“Through the data collected with the investigation presented, it emerged that from the moment of diagnosis there is a total upheaval in the life of patients on a physical and psychological level, since the woman is affected both in her femininity and in the prospects of the future, changing her life of couple, the family and the work “, comments Francesca Merzagora, president of Fondazione Onda. “The sense of disorientation and confusion that unites the experiences of these women, underlines the need to clearly frame the pathology and its path of care. The issues of prevention – is also of fundamental importance; In most of the patients interviewed, a poor sensitivity to prevention emerges – And information: there is a communicative gap on what revolves around therapy, assistance services, lifestyle, impact of the disease on daily life “.
An interviewee in three believes that, to help fill the sense of confusion and emptiness, a reference figure is necessary that can give a vision of the steps to follow, which provides a full knowledge of the different possible therapeutic options and the strategies that yes they can adopt that patients are informed and can play an active role in the conscious choice of the care path. Still, that better communication and collaboration between general practitioners and specialists who deal with breast cancer, would significantly improve the experience, facilitating the planning of visits, controls and follow -ups, optimizing the organization and decreasing waiting times. In fact, the survey emerged that the general practitioner is not considered a reference figure, but has a role only in the initial phase of diagnosis, in order to no longer be involved in monitoring symptoms or, more generally, of the state of women’s health between one control and another.
Aspects that are fundamental to lighten as far as possible access to the hospital and give support along a delicate path like this.
It is crucial to know how to listen and communicate
“It is crucial to know how to listen and communicate well both about the disease and to the therapeutic strategy. You are careful to live and you must not live to cure, so we need infrastructures to support the diagnostic and therapeutic path and the communication skills, “says Filippo de Braud, the full professor of the University of Milan and director of the Department and Division of medical oncology of the National Cancer Institute of Milan. “The enormous scientific and technological progress have not been accompanied by similar improvements in organizational processes and an example is that the investment on the cost of therapies has associated an equivalent effort to have more professional figures to guarantee assistance, such as nurses, houses Manager or doctors “.
“The disease involves the entire family and social system of the person. Conflicting thoughts and emotions afflict both the patient because the caregiver during the entire treatment process, often modifying the relational and communicative dynamics. It is therefore essential to provide for support programs aimed at all ‘the family ecosystem’ that can encourage adaptation to a reality in continuous transformation “, continues Chiara Marzorati, psychotherapist psychologist, division of psychoncology, European Institute of Oncology, Milan.
“ Europa Donna Italia is alongside women with breast cancer and anticipates the rights in all phases starting with the diagnostic one to intercept immediately familiarity and type of injury in order to intervene immediately also with Advocacy activities ” , adds Rosanna D’Antona, president of Europa Donna Italia. “With wave we have always carried out a strong and constant synergistic activity to bring out, as in this case, the needs of the patients, since we believe that listening to the needs related to the emotional sphere facilitate the work of assistance of the whole team. multidisciplinary that takes care of them in specialized centers of treatment ” concludes.