Abandoned to yourself, confused and afraid of planning your future. This is how women with breast cancer often feel, and in particular those with the positive HER2 type, which represents 20% of all breast cancers and which every year in Italy has about 11,000 new cases. Yet, compared to the past, increasingly innovative therapies have led to a decrease in both the risk of disease progression and mortality.
What is wrong then? And why do so many patients still put their lives on standby after diagnosis? To understand this, the Onda Foundation – National Observatory on Women’s and Gender Health – asked 132 women living with this disease directly, carrying out a qualitative-quantitative survey in collaboration with the partner institute ELMA Research.
The investigation
The research was conducted with a clear objective: to focus on the still unmet needs of patients, to identify both the areas in which to intervene and the most effective solutions to give them concrete answers. The sample consisted of women with different disease histories, mostly in active treatment (79%), 2% newly diagnosed and 19% in the follow-up phase; with an average age of 53, mostly with stable partners (74%) and children (78%).
Work, the perception of oneself and one’s external appearance, the sexual sphere, social and couple relationships are the areas that are most affected by the disease. Suffice it to say that a quarter of the women interviewed, especially if in the metastatic phase, had to give up their professional activity, or in any case downsize their duties. In fact, 44% of working patients often have to ask for hours of leave to undergo treatments; 35% feel not very productive and one in 4 does not perceive the workplace as inclusive, also because breast cancer is in many cases an “invisible” disease. Social interactions also become less frequent, due to fatigue and fragility, more complicated couple intimacy, and some projects for the future that are more difficult to carry out: in 60% of cases, for example, the disease has led to postponement the idea of having children.
The diagnosis: the breaking point
It is the phase of diagnosis that marks a real breaking point with the previous life, causing a change in the perception of time. We begin to give more value to “little things” (for 37% of the sample) and to time in general (for 30%). One in four patients perceive all the time devoted to treating the disease in a negative way and almost half are afraid of what may happen or the possibility of a worsening but, more generally, also to plan long-term commitments: one lives alone, constantly, in the present and with a poor perception of ‘tomorrow’. “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 her prospects for the future, changing the couple’s, family and working life” – she explains. Francesca Merzagora, President of the Onda Foundation. “The sense of disorientation and confusion that unites the experiences of these patients underlines the need to clearly frame the pathology and its treatment path”.
The most critical moments and those of “reaction”
The start of the therapeutic path is considered in many cases the most critical point, the most troubled, with moments of ’emptiness’ and without a real overview of what the process to be faced will be; for this reason it is often difficult to reconstruct the sequence and type of examinations and checks carried out, returning the photograph of an extremely confused and chaotic period. The surgery, however invasive, represents one of the moments in which one reacts in a concrete way to the disease and begins to live the present again, leaving a glimmer of tomorrow. The follow-ups, later, often return to be a cause of great concern for the possibility of relapses, which could mark a step back from the goal of recovery. Even the end of therapies is experienced with difficulty, because there is the perception of being again at the mercy of uncertainty.
The “guide” figure is missing
One interviewee out of three believes that to help fill the sense of confusion and emptiness, a reference figure is needed who can give an overview of the steps to follow, of the different possible therapeutic options. In this way, we would have more organized diagnostic-therapeutic paths, we would feel more involved and we would have a more active role in the conscious choice of the treatment plan. In addition to this, in order to metabolize coexistence with the disease and all that it entails, 35% of patients would like the continuous support of a psycho-oncologist, or a psychologist with specific training and professional experience in the oncological field, able to support the patients and their families throughout the course of the disease. “Conflicting thoughts and emotions afflict both the patient and the caregiver, often modifying the relational and communicative dynamics – he explains Chiara Marzoratipsychologist and psychotherapist at the Psycho-Oncology Division of the European Institute of Oncology in Milan – It is therefore essential to provide support programs aimed at the whole ‘family ecosystem’, which can favor adaptation to a constantly changing reality: for example moments of psycho-education in all emotional and cognitive aspects “.
Communication as a cure
Communication between doctor and patient, between doctors and between patients is an aspect on which there is still a lot to work on: still too often, women say, diagnoses are communicated in a detached and not very empathetic way, making the experience of more traumatic disease. Not surprisingly, more and more university courses in medicine and surgery are introducing hours of training dedicated to communication management, in which the moment of relationship with the patient is considered to all intents and purposes a moment of care. Better communication and collaboration between general practitioners and specialists, on the other hand, would facilitate the planning of visits, checks and follow-ups, optimizing the organization and reducing waiting times. While discussion groups between patients, managed by specialized personnel, would help to share the experiences of the disease and to develop a sense of community.
More information on the disease and treatments
Having more complete and up-to-date information is also another unmet need. There are many questions that patients ask themselves regarding the different phases of the disease and its impact on daily life, the therapeutic treatments available, the surgical and reconstruction interventions, and what will be the step-by-step treatment path. Nonetheless, they feel the need to have more information on the progress of scientific research, and on how to access trials or new drugs. The answers are often searched online or on social media.
“Healing to live, and not living to heal”
“Until recently, Her2 positive cancer was considered the tumor with the worst prognosis among women with breast cancer,” she explains. Filippo de Braud, full professor at the University of Milan and Director of the Department and Division of Medical Oncology of the National Cancer Institute of Milan – today it is the one that can be better treated, because there are more therapeutic options capable of bringing effective results, even in patients in advanced stages of the disease. However – continues de Braud – these scientific and technological advances have not been accompanied by improvements in organizational, information and communication processes. On the one hand, it is necessary to clearly define the treatment path and on the other hand to help patients to adhere to it – he concludes – by investing in structures that help them manage their time with less effort, helping them to heal themselves to live rather than live to heal themselves “.