how these two Belgians want to cure remission
365,000 Belgians have overcome a tumor in the past ten years. ©Adobe Stock
“You won’t live until Christmas.“The sentence falls. And then, the trees pass. And we stay alive. More and more people are surviving cancer now. That’s because more than 70,000 people are diagnosed with cancer each year. And this figure is increasing: Belgium is the fourth country in Europe in this area. But only the 19th in terms of death rate. “This means that the quality of care in Belgium is extraordinary. Overall 70% of people survive cancer after five years. For breast cancer, it is 90% of people affected against only 20% in the case of lung cancer. Survival is highly variable depending on the type and even the subtype of cancer“, details Véronique Le Ray of the Foundation against cancer. And they progress rapidly. Melanoma was a death sentence ten years ago. With immunotherapy, a recent therapeutic approach that acts on a patient’s immune system to fight against his disease, patients at very advanced stages survive. 365,000 people have survived in Belgium over the past ten years.
Until now, the medical profession had paid little attention to the “life after” of these survivors. Anne Rogiers and Bart Neyns did it and it’s a world first. She is head of clinic in psychiatry at CHU Brugmann, he is head of the medical oncology department at UZ Brussel. They form a couple somewhat like Pierre and Marie Curie. “I have seen in my practice as an oncologist that beyond the good news of a treatment that works well, there is still a lot to be done to reintegrate these people afterwards. When the disease is well controlled, and has sometimes disappeared, patients share their joy with their oncologist, Bart Neyns report. But these are people who were told they would never survive their disease. This can later lead to very severe psycho-emotional consequences.”
Cancer survival rate after 5 years
Post-traumatic symptoms
The oncologist notices that some patients find themselves in great difficulty during their second, sometimes third year of survival. “They had to reorient themselves in the perspective of a hope and a future.” To the point that some had suicidal thoughts, or even acted out. This dramatic reality concerns 10% of survivors. Bart Neyns, distraught, sent his patients to his wife who then conducted the research on this new reality.
“If you have metastases in the bones, the brain or the skin, it is generally believed that you will not be able to survive. Distress may arise when treatment is discontinued. There is like a void, a black hole, explains Anne Rogiers. We were held by the hand for a year, two years. We see the doctors regularly and we focus on surviving. And then, suddenly, they are told that they are healed. But they are left with a crippling fear that the cancer will return. It invades all memory and concentration abilities. This is a problem that is practically undetectable by the oncologist.“One out of two recovered patients presents post-traumatic symptoms linked to various stresses that can put their life in danger. Some experiences are truly terrifying like metastases growing on the trachea and preventing breathing. The anxiety that the disease will return can become irrational. According to work carried out by Anne Rogiers, five years after the end of treatment, long-term survivors who received ipilimumab (a monoclonal antibody used in the treatment of melanoma) thus continued to suffer from emotional and cognitive problems.
What, aren’t you happy?
The terror of living with a disease that could come back can be unbearable, reports Anne Rogiers for whom it is extremely important to put care in place. “These people present a mixture of anxiety disorder and mourning for their former life. It will never be like before because they have had all these treatments. It is an emotional work but also physical or material. Sometimes cancer has caused the loss of a job. They say: this disease came to me in an unfair way and now I am a little sidelined in society. And if they talk about it with those around them, they are told that they must be happy when they are not. It’s a taboo.”
All survivors are preoccupied day by day with the idea that the disease might return. All promote emotional fatigue. Some, after having had brain metastases, have neuro-cognitive problems. Concentration difficulties affect 80% of patients. It’s disabling because you can no longer manage the household, multitasking becomes impossible and it adds the feeling of not being together again after illness. “Physical therapy can help better manage fatigue and coordination. We can take care of the hygiene of life. You can help regain self-confidence and your memory abilities. It is important because the stress induced by the fact of believing that we are not going to succeed blocks all the capacities, explains Anne Rogiers. Rehabilitation is possible. And we can find positive after cancer. Little things can make you happy more easily. It is easier to find your priorities.”
Under the impetus of Bart Neyns and Anne Rogiers, a center to accommodate these survivors is now in the works. They could be systematically assessed regarding their psycho-emotional needs. “We would also like to give a place to speak if necessary to families, loved ones, partners who are a little deprived“, adds Anne Rogiers. It will be a different place from where they were treated for their cancer, which is very important. Bart Neyns:Patients do not describe the hospital where they received their diagnosis and treatment as the ideal place to build their future. That’s why we see a bright future for the Cancer Survivor Center in Green Energy Park.“The Green Energy Park was created by VUB and UZ Brussel in July 2019. It is a large-scale experimental laboratory located in Zellik. “We should invest to change mentalities and make it known that cancer can be cured. With additional care such as chemo or hormone therapy, we will have more and more survivors, who must regain their place in society.”