"For the patient's daily life, there is no one," Fabrice Rodenburger told AFP, exhausted by a year of "permanent combat" to have his father, suffering from fulminating lung cancer, diagnosed and supported, denouncing inequalities in care.
"When Dad was in pain at home, vomiting and having trouble breathing, I would call the emergency services from 8 p.m. In one year, I had to call 5 or 6 times for a doctor to come and see him in the evening," he recalls.
Collected by the League against Cancer, his testimony will feed into a Manifesto which will alert in early 2025, on shortcomings in patient care: remaining costs and financial difficulties, delays in accessing care, lack of support.
The general states of cancer patients organized by the League in 1998 were followed by three successive Cancer Plans and a ten-year fight strategy (2021-2030).
In the summer of 2022, Jean-Claude Rodenburger, 77, who lives in a village near Sens (Yonne), is admitted to the emergency room for a pleural effusion and is released after a scan and reassuring words, with antibiotic treatment. But seeing him weaken and lose 20 kg in a month, his son struggles "to find a pulmonologist".
"Impossible: the two specialists in Sens were not taking new patients, there were none at the hospital." Fabrice, who lives 120 km from his parents, drives his father "to an appointment made in Auxerre, 60 km" from his home.
"A real bombshell of medical demography in the short term", Yonne has nearly 4 senior doctors for every young doctor, according to the Atlas of medical demography published by the Order of Physicians.
Announced "without consideration", the diagnosis of lung cancer falls after two months: Fabrice then tries to get his father's chemotherapy to take place closer to home. He "feels abandoned" before being helped by a doctor from the intensive care unit.
"From one day to the next", he had to organise his father's care at home. "You will be taking in a dad who is permanently bedridden, who can't walk anymore, who needs to be held seated for showers. I desperately asked for home hospitalisation" - he would get it just a month before his father died, treated with chemotherapy in Chalons-en-Champagne.
According to an Ipsos survey for the Ligue contre le cancer published on Thursday, more than one in four patients (28%) has already suffered treatment interruptions due to the unavailability of health professionals or medication.
In a recent report, the National Academy of Medicine warns of territorial inequalities "throughout the care pathway" in cancerology and recommends "an active prevention policy" for patients who have been cured but are at high risk of complications and early death.
– “Odds” –
Although he "came across some wonderful caregivers", Fabrice Rodenburger deplores the fact that the caregiver must "throw all their strength into the battle to seek and coordinate care" in order to soothe a "loved one in permanent suffering".
After a year of "way of the cross", he suffered a burnout.
Another factor of inequality in the care of people with cancer: the non-reimbursement of accompanying care: dietary advice, adapted physical activities, psychological support, hygiene and aesthetic care, etc.
“From a financial point of view, you need to have some savings,” says Aurelie Gil, 48, a child protection educator in Belfort, diagnosed with breast cancer in 2020.
“From the start of the illness, we need lots of things that are not reimbursed: creams against vaginal dryness, nail polish so that our nails don’t fall off during chemo, psychological follow-up, etc.,” she lists.
For her breast reconstruction, she decided to take out a consumer loan of 2,000 euros to finance the excess fees.
Cancers remain the leading cause of premature death in France among men, the second among women, and their frequency has doubled in around thirty years, with more than 433,000 new cases in mainland France in 2023.
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