Laure GUÉROULT ACCOLAS – “My Breast Cancer Network”
Interview in October 2018
I was treated between France and Turkey. At the beginning it was a real questioning. My friends in France told me: “But you can’t go to Turkey for treatment” as if to say “it’s the third world, it’s not possible”. And in fact, what reassured me was that I was lucky enough to have an uncle who was a radiotherapist and who had had the opportunity to travel a lot and work with international teams, and who told me: “but you know, there is no problem, you can have radiotherapy in Turkey, they are just as well equipped as in our French centers, it is very standardized, there are no worries.
It was when I returned to France that I realized that my situation was very similar to that of women who live in the suburbs, in the countryside, in small towns, and that this isolation, this difficulty in finding support close to home, is something that many of us experience, and that’s why we launched this project, “my breast cancer network”.
What is the purpose of “My Breast Cancer Network”?
Many of us say to ourselves: if I had known, I would have gone there, I would have done this or that, I would have gone for this or that treatment, or this or that thing that would have helped me. It goes from maybe having a dermo-pigmentation to have a nice look, to keep a profile of eyebrow, to discovering associations that do cafés, sophrology, that allow discussion groups or things like that.
So, we said to ourselves: “but we have to do something to facilitate access to this concrete information, because there are too many of us who don’t have it”. And the other thing that I really felt was the fact that sharing with other patients who are a little further along in the process, who have gone back to work, who may have changed things in their lives, but who are smiling and doing well, gives a lot of hope to those who are in the midst of treatment and who are still very disoriented by the reality of this disease, which inevitably disrupts your plans.
Between patients, we understand each other, we don’t need to explain that we have breast cancer: we all have breast cancer. And we can talk about everything without taboos. About our fears, our questionings, about work, our children, our spouse, how to deal with fatigue, certain side effects, certain moments when you hate yourself, other moments when you are gentle with yourself. We are sometimes very hard with ourselves in fact. For example, it is also very difficult to ask for help, we are often in the middle of the action of our life, and generally we face a lot of things, and suddenly we feel a little helpless and we are not necessarily used to ask for help for ourselves, and to be able to exchange with others who lived the same thing, who have said “yes, you can take a break, ask for support for this or that”, that can really be useful.
So there is the treatment period, which is obviously an important entry point, but there is also the so-called “post-cancer” period, when you lose the exceptional support of the care teams, with whom you have often built strong ties, At this point, you feel a little out of step with everyone else, necessarily, further away from the care team, not in phase with your family, friends and colleagues, because in fact you have the after-effects, a bit of a boomerang effect, and you don’t really know what you want, where you want to go and at what pace. There is a gap in your feelings, the people close to you tell you “Now it’s champagne”, “we’re going back to the way we were before, it’s over, you’re cured”, and in fact you realize that you have three hairs on your head, scars, no more breast, or a piece of breast… You don’t know if you still love yourself, you don’t even know if you’re in tune with your spouse, you don’t know what you want to do as a job, if you have the energy to do it again.
So we need to accompany this period more, and this is starting to happen, with programs for example of physical activities, of accompaniment in all that is dietetics nutrition, we will talk about all the benefits, for example to move, to start physical activity, even if we feel tired: it is very easy to say but it is extremely difficult to implement, it is complicated to find this energy, to say to oneself: I am going to get up from my couch, I am going to go to this famous activity class, or to this Nordic walking, or to this Qi-Kong or to another activity that I knew nothing about before having gone through the disease.
“My Breast Cancer Network”, for which users?
On “My Breast Cancer Network” we have just over 5,500 people who have registered to date, who use the network. Almost 90% of them are patients who have registered, but you can also register as a relative – the idea at the time was to be able to help – either the children of an older patient, or a friend, to accompany the sick person. So, to help them, no matter where they live, to find information or useful contacts for the patient. The relatives are often distressed by the disease, and we must help them to help us.
How does “My Breast Cancer Network” work?
It is by thinking about the needs we had in our daily life that we said to ourselves: “what we need to do is a dedicated social network, which allows to keep, if people wish, their anonymity completely, we browse under a nickname, it is separated from other social networks because for people, for example, who work, they do not want to “stain” in quotes their cyber-activities with the disease; so for many women, it is very important to be able to put their disease somewhere without it interfering with their other social and professional activities.
And then, it allows a virtual exchange, it also allows to meet at events, to have coffee, to create specific bounds since we can exchange in the community but also in sub-groups, according to particular themes or problems, and also in private messages. So, beyond the social side of the social network, there is a whole series of information files, a directory, and a calendar of events dedicated to patients.
The mobile application
About two years after the launch of “my breast cancer network” in 2014, we launched the website’s mobile app in October 2016. This was already a first revolution in the use of this social network, because we gained in proximity in a considerable way, that is to say that the app could to be with the patient in her pocket, when she wants, it could be during a period of hospitalization, during a chemo but also the first vacations, the spa treatment, a nice moment shared with family or friends. So, this social network side has developed a lot, the proximity side, exchange of photos, good news, a lot of encouragement. The application has really become the first vector of use of the social network.
Vik, a virtual companion
In 2017 we met with a start-up that was launching the first virtual companion in cancer, “Vik”: we brought our experience, our expertise and our patient needs through focus groups and tests of network users, to the little companion called “Vik breast”. The interest of this project is that it responds to different needs of the social network. Here, I am not going to exchange with other patients, I am going to ask my questions to an artificial intelligence, to a virtual companion, it is a conversation system, I do not need to create an account, it is just another friend on Facebook Messenger. And it’s factual, it can be periods for example at the beginning of the diagnosis, I don’t necessarily want to talk with other patients at the beginning, there is often a time to digest the news, but on the other hand I need information.
And there is another period in the life stage of patients where it seemed that a social network did not meet all expectations, it is the metastatic disease. In this case, the patient have a lifelong, chronic disease, and so it will have to take a place in her life, but not an important one because I put myself in brackets to take care of myself with my medical team for one or two years, but I will have to give this cancer the smallest place possible, and for as long as possible of course, And so the little virtual companion can answer all the questions about what medications to take, what a “cementoplasty” is, how to take your medication, there are many very practical things, and it helps to support people, even if they want their disease to be just a little dot on the agenda.
An interface with physicians
To our knowledge, we are the only social network created by patients for patients, with patients who are trained moderators, which are called experts today, with the support of an amazing scientific committee, which really allows us to discuss as well. What is very interesting with this collaboration with caregivers is that doctors tell us: “We would like our patients to be able to find this or that information, we waste too much time, we don’t have time for consultations, it would be useful to find such and such information.
Typically, on breast reconstruction, it is a process that requires thinking, there are many techniques, it is complicated, it is not in one consultation that we can understand everything, so finding videos, films, testimonies, it allows the person to have an idea. And in another sense, it allows us to bring up concerns from the field to our scientific committee, and to gradually enrich the network with content that corresponds to these concerns.
And also to be in a dialogue, to be at the interface, and that is exciting, to have the chance to communicate and work with everyone. This is one of the reasons why we chose to be an association of patients and relatives, because it allows us to be close to the patients, but also to be able to talk with the caregivers and the professionals.
An active network in society
By developing, by working with different health care structures, other associations and so on, we are led to finally enter the discussion of health in a democracy, to get involved, to participate. For example, we give a voice: more than half of the patients in our network live outside of Paris. We never hear from these women. Having surveys that give a voice to people who live in much more isolated places, who are not necessarily in large specialized centers, is useful. We are part of the associations that have taken action to launch the National Metastatic Breast Cancer Day, saying: “it is not normal that we do not know how many women are concerned by metastatic disease, who live with this disease”.
We are given the number of new cases and the number of deaths, and we don’t really know if there are 50, 60, 80,000 women living with metastatic breast cancer today, and we need to listen to them better, because their care paths are very different. Generally, they have oral therapies for a long time, they live with all these ambulatory treatments far from their care centers and they are very alone, and they have particular social and professional needs. So, there’s a lot of advocacies to be done.
We are beginning to enter the debate and to meet with some members of parliament and perhaps to participate in the debate, but our idea is really rather to echo the daily life of patients and to participate with others who already have networks, certainly not to do it alone, that does not make sense.