Cancer: “Don’t Call Us Warriors,” Life of Women with Advanced Breast Cancer

The initiative, in 10 notes, the thoughts, emotions and daily life of patients to help them truly understand their world

“No, don’t call us warriors. We are women who face pain. And this one it is not a battle, it is a path in which everyone must find their own balance also thanks to the support of those close to us “. Women with advanced breast cancer reject the label of fighter.” There is a pain that splits life, feelings, everyday life. She faces each other with strength, but with ups and downs – says Anna Maria Mancuso, president of the Salute Donna Onlus association – And she weeps too, while the warriors never give up. Dealing with pain also means: sharing it and walking together on the same path. “There are about 37 thousand in Italy. What women with advanced breast cancer do not say – who they are, what they feel, what they dream about and how they live – has been blacked out. on white in 10 simple ‘Life Notes’, presented today during a meeting in Milan, in view of the National Day of Metastatic Breast Cancer (13 October).

“Not a vademecum, it is a gift to better face some difficult moments that we all meet “, point out the souls of the initiative that is proposed as a practical tool, born from the campaign promoted by Novartis Italia with Salute Donna Onlus, ‘It’s time for life’. It is a window on the world of these women, to understand in depth the moods, thoughts, emotions of those who live with such a diagnosis. What is really important to them. First point: stop the rhetoric of the ‘patient-soldier’. It is neither about winning nor about to defeat the tumor, but to walk, to live with the disease, and to live the present in a more intense way.There is the value of silence and the therapeutic value of time, which must be “quality”, assure the same specialists. The Notes of Life light up a beacon to guide those who intertwine their journey with that of a woman with advanced breast cancer, to help them understand which words and gestures are helpful and which are not.

And to understand, just look inside the numbers and statistics, and ask yourself a question: who are women with advanced breast cancer? “The average age of a diagnosis of metastatic breast cancer reaches 54 years – says Chiara Gnocchi, Head of Country Communications and Patient Engagement of Novartis Italy – 30% of women with metastatic breast cancer are under 45 years old. active women, with a working and family life, a life of relationships that they do not agree to give up. They are married, most have a child not yet of age. Research has allowed in recent years to give them time to live, being able to give and have perspective. I have learned from patients that disease changes life, but at the same time it gives the strength to face it. I have learned that they are not the disease and they demand not to be. They are people and in these people c ‘it is sexuality with one’s partner, the desire for a child with the theme of preserving fertility, there is nutrition, fitness and many other aspects. Priority is given to the important things “.

Notes of life is inspired by the thoughts and experiences of the patients of Salute Donna Onlus. The neglected aspects of the interior of a woman with advanced breast cancer are investigated. In addition to this tool that will be disseminated and made available through various channels, on 13 October the fifth and final appointment of the ‘Life Academy’ will also be published on the social pages of E ‘tempo di vita’, a sort of ‘living room’ in which to he confronts guided by the words of experts precisely on aspects of life and of the deep self of those who live with advanced disease. To act as a ‘guide’ on this journey is Stefania Andreoli, psychotherapist and scientific consultant of the project who explores the different phases of the disease, from change to acceptance, and addresses issues such as intimacy and the importance of the caregiver. Behind it is listening to the E ‘tempo di vita community, which has over 56,000 users on Facebook and Instagram. “In the living room of the Life Academy – says Andreoli – oncological opinion meets writing and mindfulness”.

Even the Notes of Life are born from listening. “They are like notes that we collect from patients. The roles must be reversed, because they are the ones who have to teach us and tell us something – continues Andreoli – And in fact they explain to us how this narration of the battle, of the war, of being soldiers of life , of the disease and the recovery, is actually a distortion, very out of focus. Let’s face it: who should have an inauspicious outcome of the disease then was not strenuous enough in his attempts? “. It is therefore also a “dangerous speech. We could have come to it by ourselves, but the patients themselves needed to tell us. And one of these notes strikes me, in particular: sometimes, it says, silence is more supportive than constantly asking how you are. Those who are carriers of the disease are sometimes put in the position of having to take on the anxieties and anxieties of those around them. I believe silence is unfairly underestimated, but it is profoundly communicative. There are very full and revealing silences “.

Restarting from authenticity is one of the messages. But there is also hope “among the words that weigh”, notes Michelino De Laurentiis, director of the Department of breast and thoraco-pulmonary oncology at the National Cancer Institute Irccs Pascale Foundation in Naples. “I would be optimistic and it is a message that I feel I can give to women with metastatic breast cancer: in a short time we have seen a complete revolution in our ability to manage this disease – he remarks – About 10-15 years ago, life expectancy was at a median of about 2 years. Today it is over 5 years old. It may seem little, but it is not: it means that half of our women will live longer, even 7-10 years and we do not even know it even longer than this, given that the new drugs are ‘in action’ by few years. It means being able to block the disease, make it chronic while maintaining the quality of life “.

In this way, the oncologist points out, we gain time, and this will allow women to have access to many new revolutionary drugs already on the horizon, which will arrive in this period. And then, why not, maybe within a maximum of 20 years – he says – we could also be able to heal metastatic breast cancer. I believe in it. “De Laurentiis takes the point of view of the white coat and explains the value of the alliance with the patient, sending a final message to the medical profession as well:” Sometimes we tend to believe that the alliance works when there is he is the friendly doctor, it is not necessarily like that – he reflects – Listening must be empathetic, respecting professionalism and different roles. But understanding the real needs of that single sick person in front of us is in my opinion half the path to achieving therapeutic success. Being a doctor is above all this “.

Unfortunately, he adds, “I have to admit that there are shortcomings on this front. There are extraordinary doctors who place themselves with excessive technicalism in front of the people they should take charge of at 360 degrees. Maybe they don’t look them in the eye, they coldly give information about disease. I think we need a fundamental cultural change on the part of doctors, I do a ‘mea culpa’. We must strongly proceed towards this new type of doctor-patient relationship, in oncology it is a fundamental step: learning to listen to the needs of the woman sitting in front of us. Needs that are never the same, each person is different even if they have the same type of disease and are given the same therapy. The management of this relationship requires a great willingness to get involved on the part of the doctor “.