The UK’s foremost kidney cancer charity has issued a stark warning regarding “highly restrictive” health guidelines, which it says are leading to one in five patients being diagnosed at the most advanced stage of the disease.

Recent statistics from Kidney Cancer UK reveal that 20% of kidney cancer patients receive a stage 4 diagnosis. At this stage, the likelihood of surviving beyond five years diminishes sharply.

Traditionally, the guidelines set forth by the National Institute for Health and Care Excellence (NICE) have been quite limiting, focusing solely on the presence of blood in the urine as the primary symptom of suspected kidney cancer.

However, the charity’s annual survey consistently highlights that the range of symptoms is much broader and more complex than previously acknowledged.

The 12th annual patient survey conducted by Kidney Cancer UK indicates that about 75% of those diagnosed with stage 3 kidney cancer live for at least five years.

In stark contrast, for patients diagnosed at stage 4—when the cancer has metastasized to other organs—the five-year survival rate plummets to approximately 10–15%.

The five-year survival rates in the UK are among the lowest in Europe.  

Kidney cancer now ranks as the UK’s sixth most common cancer, with almost 14,000 Britons diagnosed every year, with 4,700 deaths, amounting to about 13 deaths per day.

New data from Kidney Cancer UK found that one in five kidney cancer patients are being diagnosed at stage 4, the most advanced stage of the disease

Cases are also climbing sharply in younger adults.

People born in 1990 are up to three times more likely to develop the disease than those born in the 1950s – a trend doctors say is partly driven by rising obesity and high blood pressure.   

One of the biggest challenges with kidney cancer is that early-stage disease (stages one and two) is almost entirely symptom-free. 

As a result, there are often no warning signs to indicate cancer is present unless investigations are carried out for an unrelated reason.

When looking at the time from first feeling unwell and seeking medical advice to receiving a diagnosis, the survey results show that almost a third of patients waited more than three months.

In the period before referral for diagnosis, more than one in four patients are initially diagnosed with a different condition, adding to the overall time it takes for a diagnosis to be made.

The survey also found that in patients diagnosed at stages 1-3, the most common symptoms reported were pain in the back/flank/side, blood in urine and fatigue. However, notably, 29 per cent reported no symptoms at all.

In patients diagnosed at stage 4, the most common symptoms reported were pain in the back/flank/side, fatigue, blood in urine and weight loss. Of these patients, 15 per cent still reported no symptoms at all.

Patients report feeling ‘dismissed’ when symptoms are attributed to benign causes – commonly conditions such as kidney stones or UTIs – only to later discover kidney cancer, contributing to the percentage of late-stage diagnoses.

While the survey reveals the high percentage of kidney cancer patients diagnosed at stage 4, it also reveals that over a quarter are diagnosed at stage 3.

There has also been no improvement in last year’s results in the occurrence of patients being diagnosed by chance, with over half of patients being diagnosed incidentally during scans for unrelated conditions.

The survey has also highlighted the increased anxiety and fear of recurrence among those living with and beyond kidney cancer, with more than two-fifths reporting feeling scared of the cancer reoccurring.

The charity is calling for a clear and government-funded research strategy to develop a simple, inexpensive test for use in primary care. 

Currently, there is no simple blood test or easy method of early detection. 

Within the next three years, the charity hopes to see a much more focused and strategic effort around research into early-stage kidney cancer – particularly into identifying biomarkers that could be measured easily.

Prof. Grant Stewart, Professor of Surgical Oncology at the University of Cambridge and Consultant Urologist at Addenbrooke’s Hospital, Cambridge, says: ‘The finding that just over 20 per cent of patients are now being diagnosed with stage 4 kidney cancer represents a concerning year-on-year increase. 

‘Kidney cancer often presents with non-specific or subtle symptoms, which can be overlooked or misattributed, leading to delays in diagnosis. These delays can significantly limit treatment options and adversely affect patient outcomes.’

‘As clinicians, we have a responsibility not only to diagnose and treat, but also to direct patients to trusted organisations such as Kidney Cancer UK, which provide high-quality information and essential support to help patients and their families navigate the physical and emotional challenges of a kidney cancer diagnosis.’

Malcolm Packer, chief executive officer at Kidney Cancer UK, says: ‘These findings highlight a stark and urgent reality: there are too many people are being diagnosed with kidney cancer at stage 3 and 4. 

‘This isn’t just a clinical issue – it’s a human one, with devastating consequences for treatment options, quality of life, and survival. 

‘Because symptoms are often vague or entirely absent, patients can feel dismissed or overlooked long before they receive the care they need. That must change.

‘Once the NICE guidelines we worked so hard to bring to fruition are published, the healthcare professional community at all levels should embrace them and work together to make them work and improve patients’ pathways, quality of life and improve survival chances.’