It was four years ago – in June 2017 – that the first World Kidney Cancer Day was celebrated. The international campaign was developed by the International Kidney Cancer Coalition (IKCC), a network of more than 45 Affiliate Organisations, to raise awareness for the little-known type of cancer. In the beginning, we focused on the basics about kidney cancer – what causes it, how to prevent it, or why it’s on the rise.
While that campaign did a lot to raise the profile of kidney cancer, the incidence of the disease continues to increase globally. The most recent statistics estimate that 431,000 people will be diagnosed around the world each year.
The incidence of kidney cancer has been increasing since the 1970s, yet the worldwide mortality rate has been stable since the 1990s.  In the last 14 years, targeted and immunotherapies for metastatic kidney cancer have made living with kidney cancer an entirely different story, compared with the preceding treatment options, and localized tumors have also seen improved outcomes with robotic and nephron-sparing approaches.
Like most other cancers, kidney cancer is caused by mutations that occur over time in cells. However, several known factors can contribute to the risk of the disease, including smoking, being overweight or obese, high blood pressure, and having chronic kidney disease. Approximately 5-8% of kidney cancer cases are linked to family genetics.
Of the known genetic syndromes that have been connected to kidney cancer, the most common is called von Hippel-Lindau syndrome (VHL), and ‘accidental‘ mutations in the VHL gene are responsible for the vast majority of kidney cancers, familial or not. Studying the causes of kidney cancer, which has led to so much insight relevant for other cancers, as well as just the normal physiology of cells, was awarded 2019 Nobel Prize in Physiology and Medicine.
It is also known that men are twice as likely as women to be diagnosed with kidney cancer and it affects older people more – the average age at diagnosis is 55 years. The proportion of the world’s population continues to grow – the proportion of people over 60 years of age is expected to double by 2050  – and will impact oncology generally and kidney cancer specifically. Kidney cancer is among the top cancers whose incidence is accelerating the fastest.
What’s unique about kidney cancer is that the diagnosis all too often takes people by complete surprise. They aren’t even experiencing signs or symptoms that lead them to a series of tests. But instead, a CT scan of the lungs or other organs, for example, ‘accidentally‘ reveals the tumor on the kidney.
We have heard anecdotally that during COVID-19, there has been an increase in kidney cancer diagnoses because of lung scans related to coronavirus infections, but time will deliver hard numbers after the pandemic passes. This “surprise” cancer diagnosis can leave a patient psychologically caught off-guard.
Profound psychological effect
Kidney cancer can also have a profound psychological effect on patients’ lives, leaving them feeling overwhelmed, lonely, or even depressed. As learning more about the patient experience is a key priority, IKCC launched the first-ever Global Patient Survey in 2018 and found an overwhelming 96% of the roughly 2000 respondents experienced psychosocial issues. This included disease-related anxiety (60%), fear of cancer recurrence (50%), and fear of dying (44%).
Patients’ anxiety can also include their financial situations. A recent American-based study found that half do not feel in control of their financial situation and the majority of kidney cancer patients worry about covering the cost of their treatment. 
But the past year has been one like no other and the stressful consequences of the pandemic have compounded the psychosocial impacts of living with kidney cancer. Kidney cancer patients around the world have faced issues such as ongoing uncertainties about their treatment regimens and delayed surgeries, not to mention the general stress related to the challenges of living with cancer in a global pandemic.
The IKCC 2018 Global Patient Survey also found approximately half of respondents didn’t talk about their psychosocial issues with family, friends, or their health team. Moreover, the younger patients were, the less likely they were to address them. However, of the 50% of people who did speak to their doctor or close ones about these issues, 92% found those conversations helpful.
Collectively, as a community committed to supporting people living with kidney cancer, we need to break the silence and start talking about the psychological effects patients face.
So, we fast forward five years and we are pleased to share the World Kidney Cancer Campaign in 2021 is We need to talk about how we’re feeling. World Kidney Cancer Day will be celebrated worldwide on 17 June, however, we encourage conversations to begin sooner, because we can’t wait any longer to break down the stigma associated with psychosocial issues.
IKCC and local Affiliate Organisations will encourage kidney cancer patients to create their own Personalised Psychosocial Wellbeing Report by answering a short set of questions about their experience. The clinically vetted tool will help people better understand their own situation and start conversations with others, including healthcare professionals, about how they are feeling.
It’s important that patients talk about how they are feeling. With more open dialogue about concerns, fears, and impacts on daily living, they can better understand what to expect and learn about available resources, which can lead to overall improved quality of life. However, it is equally important for physicians and allied healthcare teams to consider patients’ psychological health, by evaluating and supporting treatment. If we want to make a change, a partnership is crucial.
IKCC’s mission is to reduce the global burden of kidney cancer. This means working to reduce the incidence, drive access to better treatments, and support patients and caregivers with the best information. But also, it means improving people’s quality of life and elevating the importance of their psychosocial well-being.
For more information and to join the World Kidney Cancer Day 2021 campaign, visit the website of World Kidney Cancer Day.
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Featured image: Human kidney cross-section. Photo courtesy: © 2016 – 2021 Fotolia/Adobe. Used with permission.