On her body, Nadia Mahituku has three tattoos. But in the shower, it's the most discreet one that catches her attention: four small black dots surround her right breast. These markers were drawn at the end of 2022 in permanent ink, at the start of her radiotherapy, a ray treatment aimed at eliminating the last cancer cells lodged in her breast. “It’s like a permanent reminder,” says the forty-year-old.
Despite the years that pass, Nadia Mahituku retains a certain bitterness about these indelible marks. "I was presented with radiotherapy as an obligatory phase of my treatment protocol, without asking my opinion. In hindsight, I think I did well to do it, I am happy to have lasted until the end, she recalls. On the other hand, I was not told that I would keep these tattoo points. I realized afterwards that there were other non-permanent methods. If I had known, I would have preferred not to keep them."
“The patient must understand their care”
Like her, many cancer patients regret not having been more involved in their care protocol. Half of them (50.6%) say that their opinion was not sought regarding their radiotherapy treatment, according to a study carried out by the League against cancer on this type of treatment, to which franceinfo had exclusive access, Sunday September 13. Among the 3,669 patients questioned, more than a quarter (28.5%) assured that their consent was not requested regarding radiotherapy, one of the most used methods to treat this type of illness. In 2024, 231,000 patients were treated by radiation, according to the National Cancer Institute.
Although there has been progress in recent years, "there is still a gap in the radiotherapy care pathway: it is the understanding of the treatment", observes Catherine Simonin, president of the society and health policy commission at the League against cancer. “Normally, the essential rights of patients must be ensured, that is to say that the patient must understand their care, know the side effects and the supportive care to which they are entitled”, such as sessions with the psychologist or a dietician, or support for the patient in their social, family and professional life. “However, our study shows that 24% of patients have not discussed these subjects with any member of the medical teams,” she emphasizes.
In addition, these figures reveal strong gender inequalities, since 37.3% of women say that their consent was not requested regarding their radiotherapy treatment compared to 17.1% of men. In total, 64% of them say that they have not been asked for their opinion on their treatment (compared to 33% of men).
Eléonore, diagnosed with breast cancer at the end of 2021, remembers her care protocol as a succession of “directives, without real consent”. “Faced with a doctor, who is a caregiver and a knowledgeable person, I do not feel up to his intellectual standard,” explains the forty-year-old, who followed 33 radiation sessions at the beginning of 2022. He has knowledge and power, so it is necessarily more difficult to ask questions, even more difficult to challenge or question him. I think they sometimes forget that.
Radiotherapy, often a necessary step
However, the patient's opinion and consent are essential. Otherwise, this can cause "increased suffering, the patient needs to be the subject of his care and not to suffer it as an object, points out Florence Barruel, psychologist specializing in oncology. To recover well and bear the after-effects, we need to feel like we are an actor in our journey."
This is the case of Jacques, diagnosed in 2023 with ENT cancer, located in the throat. Three years later, he still considers that he did not begin his treatments with full knowledge of the facts. “It's unbearable, as a patient, to see that my choice was stolen from me,” says the septuagenarian. Even if, in hindsight, I do not regret having followed this treatment, because it is thanks to it that I am alive and that I can still enjoy my grandchildren.
"I'm still angry. It's not normal to put patients through all these ordeals without preparing them."
“Radiotherapy is a very important treatment, for which the benefit-risk balance clearly leans towards effectiveness,” explains Sylvie Negrier, oncologist and president of Sofom, a learned society dedicated to cancer treatments.
Furthermore, treatment is often the only solution available to the patient. “In the case of breast cancer in particular, the passage through surgery and radiotherapy is inevitable,” explains the oncologist. “For the medical team, the priority is to eradicate the cancer, just like the patients, who are very willing even if they know that there are side effects. It is often only afterwards, with hindsight, that they feel regrets.” However, she recognizes that progress is essential. “When we present the surgery to the patient, we do not discuss the treatment. From the moment they come to the appointment to honor the treatment, it is implicit consent,” develops Sylvie Negrier.
In its report, the League against Cancer also deplores that 27% of those questioned were not informed of the possible side effects, as well as the risks involved in radiotherapy. And this, while 88% of patients report having experienced at least one adverse effect during their treatment (fatigue, burns, digestive disorders, oral and dental problems, etc.). “Radiation therapists often arrive as second or third line in the care pathway. They consider that the patient has already been informed before their consultation, observes Catherine Simonin. However, it is a specialty in its own right, with very specific information.”
An observation shared by Jacques. "My radiotherapist told me that I had TX N1 M0 cancer, a term he did not explain to me, and that I was going to have 33 sessions of radiation, barely touching on the side effects, he recalls. I was given a booklet to tell you what radiotherapy was, a prescription for food supplements because I was at risk of losing weight, and then they told me: 'See you in a month!' I came out of there a little stunned but not particularly worried, telling myself that it would be a difficult time to go through but that it would be okay because I was taken care of."
Side effects sometimes minimized
This “difficult moment” turned into “a terrible life test”. Claustrophobic, Jacques initially believed that he would not be able to undergo a single radiotherapy session. Hanging on a table, the patient must pass through a closed machine, which sends out the rays. This method can be taxing for those who are afraid of enclosed spaces. "I had not been informed of this aspect, regrets Jacques. After several attempts, I said that I could not continue. Despite adaptations and hypnosis sessions, I only had my first session ten days later, with a lot of difficulty."
At the same time, his state of health deteriorated, to the point of being hospitalized several times. “I did not receive any serious preparation for the adverse effects I encountered,” he laments. “I was told: salivation problems, altered taste... But all that does not mean not eating anything! I could no longer swallow anything, I was intubated for several months. With the fatigue, lack of sleep and pain, I came to want to fuck myself up.”
Even today, Jacques can no longer enjoy his slices of buttered bread for breakfast: “The bread tastes like moldy flour and the butter seems rancid to me.” This former Marseille executive, who held positions of responsibility, is hesitant to take on associative responsibilities. "Cognitively, I have aged ten years. I do not consider myself reliable. I do stupid things, the slightest complexity puts me in panic and in stressful situations, I no longer know how to manage."
Post-cancer treatment little addressed by medical teams
Like Jacques, nearly one in four patients (24.4%) said they remained without information about post-treatment, even though adverse effects may persist. In total, 83% of people questioned by the League Against Cancer say they continue to undergo it, despite stopping radiotherapy. In Tarbes, almost ten years after her treatment for brain cancer, Stéphanie still discovers new side effects. “One day, I was told that they were going to do a more in-depth MRI to check that I didn't have a ruptured aneurysm, because the rays could have caused it. I learned about it eight years later, during a medical examination,” regrets this former brain cancer patient.
For Eléonore, this post-breast cancer was “more difficult to live with” than the treatment phase, although trying. "After 33 sessions, I was told: 'Goodbye, see you in six months'. I felt completely abandoned. Each week, I had a protocol, a schedule to respect, but once finished, nothing more. I didn't know that I would be released into the wild without a check-up examination. For me, there was necessarily a check-up mammogram, but in fact no. I had to go find this answer myself," she regrets.
Since her cancer, Eléonore has adopted new habits: she goes to each consultation with a post-it filled with all her questions to ask the doctors. The way for her to have an opinion on any new treatment. Whether requested or not.
