Data are from research conducted by the Oncoguia Institute with patients; June 20 is World Kidney Cancer Day
Kidney cancer is almost always diagnosed “by chance” due to the absence of clear and specific signs and symptoms and the lack of screening protocols. Therefore, the International Kidney Cancer Coalition (IKCC), of which the Oncoguia Institute is a member, celebrates World Kidney Cancer Day on June 20th to bring more information and guidance about the disease. In Brazil, the national Cancer institute (inCa) estimates that 6,270 new cases would be registered in 2018, 3,760 men and 2,510 women.
“The kidney cancer scenario in Brazil is complex and developing. Much has been achieved in terms of knowledge and treatments for the various stages of the disease. However, if on the one hand we observe this advance in medicine, on the other hand this reality is not yet available for the entire Brazilian population”, emphasizes Luciana Holtz, president of Oncoguia.
In 2018, the institute conducted an exclusive survey on the journey of the patient with the disease in Brazil, which indicated that 100% of those interviewed had had the cancer diagnosed incidentally and over a long period of time. In addition, everyone considers that the doctors’ own ignorance about the disease hindered the discovery of the disease.
Still, of the 64% of patients who knew nothing about the disease before having it, 12% still know very little even after diagnosis and 22% cannot tell precisely what kind of kidney cancer they have.
Although the scenario shows the need for more information, doctors’ opinion is divided when it comes to prevention: 46% believe that kidney cancer could be prevented if it reduces its risk factors and 46% think that further prevention efforts are not necessary because it is a low incidence cancer in the population.
The diagnosis of kidney cancer is one of the most challenging times for patients. Because it is a silent disease, cancer is usually discovered during research for other health problems. This difficulty is revealed in the research: for 63% of the interviewees, the diagnosis was one of the most relevant problems in their journeys as patients.
With an average age of 45 at the time of diagnosis, 26% of research participants have already discovered advanced stage cancer and more than 20% are already metastatic. Today, 36% of them are metastasized.
SUS x private
For SUS patients, the challenges are even greater. So much so that many patients pay for private exams to have the diagnosis completed and then migrate to SUS at the time of treatment. In addition, the time between diagnosis and start of treatment usually takes more than two months.
For the physicians interviewed, 5% agree that early diagnosis is difficult in the private system (private and health insurance) and 76% agree that diagnosis is difficult in SUS. But for them, the main difference between SUS and the private system is access to more specific treatments.
Initially, a quantitative cross-sectional study was conducted with 73 patients and/or family members and another one with 42 physicians from all over the country through an online survey service. The questionnaire contained profile data, sociodemographic and perception evaluation of the patient’s journey in relation to knowledge, diagnosis, treatment and impacts of the disease on life. In the second stage, of qualitative nature, in-depth interviews were carried out with 11 patients and their families and with five physicians specialized in kidney cancer, 93% being oncologists and 5% urologists.
About the Oncoguia Institute
The Oncoguia Institute is a non-profit civil association founded in 2009 whose mission is to help cancer patients live better, through actions of education, awareness, support and defense of rights.
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