LAURE GUÉROULT-ACCOLAS – Tumorectomy, chemotherapy then mastectomy and radiotherapy in 2009

My name is Laure Guéroult-Accolas, I already had a biopsy when I was 25 years old, which had not revealed anything serious, and I kept the habit, as we moved around a lot, in France and then abroad, of having a gynecological check-up in France in the summer when I came back for the vacations.

That summer, the summer of my 39th birthday, as usual, I went to the gynecologist to check what was going on and finally I had to have a mammogram, which indicated that a biopsy was necessary. And I would say that at that time, it didn’t worry me more than that, because I had already had an experience of previous control. At the beginning of August – I learned at 9 o’clock in the morning with a doctor I didn’t know – it wasn’t my doctor because she was on vacation – that it was in fact breast cancer. Obviously, it was a shock, because at 39 years old, you don’t expect it, but at the same time I felt lucky to have found it early enough.

I realized right away that things were a little more serious than what I was initially told, and so I had chemotherapy, then a breast removal, and then radiation afterwards. And two years later, I made the choice of reconstruction.

My mom had breast cancer shortly before, so in the end she was kind of my “cancer coach”, because she had surgery, chemo… So, I had an example in front of me of the care pathway and how it could go, but Mom fell ill only when she was retired.

For me, we were in the middle of moving out, to a new country: so how do we organize ourselves? How do you manage the daily life? In the end, it was a lot of organization, a lot of anticipation, trying to know what I could do in France to take care of myself, and what I could do in Turkey to take care of myself and be close to my family, since we did not want to question our plans; it was very complicated and sincerely I was finally quite alone, supported by my family, but not so much by the medical team.

Treatment abroad

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, radiotherapy can be done in Turkey, they are just as well equipped as in our French centers, it is very standardized, there are no worries.

So, I was able to tell my care team in France that I wanted France to be the decision-maker for my entire treatment, but that I wanted to do as much chemo and radiation as possible in Turkey. In the end, I found that it was a bit complicated to set up because the medical teams in France are not very used to having to take a little, and not everything. They almost had the impression that I was questioning it, it wasn’t that, it was that I wanted to be with my family as much as possible. So I found that they had a little bit of a hard time letting go of me and letting me organize myself the way I wanted, but it was possible in the end.

In Turkey, what was difficult was the isolation because I could speak English – I am not a champion in English – with my doctors, a little with the nurses, but they were not always confortable with the language; I did not exchange much with the patients in Turkey, so it was a little sad to take a car, or a transport, and to go to my treatments and to be really all alone. That was not very cool.

My children and my illness

What was very complicated was that I was able to tell my children, who were quite young, that we were going to take care of this cancer, that like with grandma, it was going to go well, that I was going to have an operation, that afterwards we would have a few X-rays, and that it would be over. And then I had to tell them the truth again, but the truth was more annoying. So, it was complicated, it created a lot of anxiety because I went back to France to have my first chemo of each cycle – like many women, I had two types of chemo to take -, so it was complicated to go back and forth, to explain this to the children, who were disoriented by all these changes.

I had the impression that I was doing the best I could for them, and I realized that in fact it didn’t fit. And there too, we were very lucky: in the school where they were, an international school, there was a school psychologist, who was there full time, because for these children who move all over the world, there are still complicated moments of transition. And especially for the two youngest ones it was difficult, and one day, the school called me urgently saying: “Listen, you have to come, we have to talk, because your little girl is not well”.

At one point, she was crying a lot, she didn’t want to go to school anymore, she didn’t want to eat anymore, so it was still a concern. Working with this psychologist, we realized that she was very afraid that I would die or disappear while she was at school. So there was this idea that mom was leaving, and she didn’t know if I was going to come back, she was very afraid that I would disappear, and so she couldn’t tell me that she was afraid that I would die: that’s what I understood with the help of this psychologist, she was able to tell her, and as a result, it allowed us to simply set up a kind of deal with my little girl, between the psychologist, the school teacher and her, which was to say: “If you want to call mom, you always have the right to call, you can leave anytime, from class, from the activity, you go to the secretary’s office, and you can call mom to make sure she’s okay and talk to her.” And so she said, “Okay, we’ll do it this way,” “Okay, I’m going back to school. The first few days she called me a lot, and then the more it went on, the more confidence she gained: when she was at school, mom was doing things but mom was there and it was okay.

For me, I didn’t need a psychologist, I didn’t need support, I was 39 years old. In my family there were many health problems, I felt capable of coping, I was well supported in terms of organization, and in fact I didn’t understand what use it could be to call on the help of a psychologist, at least for the children and probably also for me, to understand that even if you love your family from the bottom of your heart, you are not always the best person to help them when you are ill yourself. And when, in the end, we cause them a certain number of problems with this situation, we are not the best person to help and accompany them, and love is not enough.

So, I learned a lot from it because it was extremely effective to be able to put things down with a professional and to put in place concrete solutions to help, in this case my little girl at that time, or to better understand my little boy who was a little older, who was 9 years old. He was extremely aggressive, normally he was cute and kind. So, she helped me to understand his feelings and why he reacted like that: and there in fact, this aggressiveness, he had it a lot towards me, but he also had it a lot at school, I think he spent an awful year.

There are many things that I didn’t know, that I learned years later and that touched me a lot, he was really unhappy. What the psychologist explained to me at that time was that this little boy who had arrived in a country where he spoke English quite well, but did not speak Turkish, he had no friends, he arrived in this new school, with no friends, with a mother who had a strange look on her face, who was tired, who could not do everything like the other mothers, who could not necessarily come, since I was in the hospital in surgery, for the meetings of the new school year etc… I had missed things that were a bit fundamental to the start of this school year, and so he was furious. He was ashamed of my look, in fact, he didn’t like it, it was too hard, so he was beating up on everyone, he was aggressive. I understood that it was really difficult, that he needed support, for example from his grandparents or other adults, and that it was not serious, that he needed to be given a little time to digest all this.

A new life project

When I returned to France, I was 42 years old. I had listened to a lot of conferences on the return to work of expatriates and sick people, and they often tell you: “You have to hide the holes, you mustn’t say that you left, that you stopped working, that you were sick”. In fact, I didn’t want that, I said to myself: “I was sick, of course, but I don’t see how that makes me less efficient, far from it in fact”. I didn’t feel like this kind of cheating, and I didn’t feel like taking too many “slaps” either. I didn’t want to be told that I was too old or something, when I think that we have long lives and that we can have many stages in life.

So, I met up with a friend from my class who had a health communication agency and it was while telling him what I had experienced, the needs I had felt, that we decided that there was something to be done in this world, in the digital world, in the world of patient support. We looked at what was happening in Canada and the United States, because in the English speaking world, there have been many more patient communities that carry a lot of weight and are well structured. We started from the model of social networks of this type by adding our own ideas, and that’s how we created the “my breast cancer network” project.