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Kidney Cancer Patient Survey 2020 Report

by | Jan 29, 2021 | Patient Survey

New survey shows no improvement of late kidney cancer diagnosis in three years

Published 1st February 2021

Late-stage diagnosis rates must come down and save lives, say leading clinicians

Patient Survey 2020 #KCAW2021

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Key points from the *Kidney Cancer UK Patient Survey 2020 are:

  • 46% of patients diagnosed at late stages 3 & 4- (**2019 = 45%, 2018 = 47%)
  • 50% diagnosed following unrelated scans
  • 21% suffered initial misdiagnosis
  • 42% did not receive enough information
  • 56% waiting up to 8 weeks for scan results
  • 67% not offered any form of counselling
  • 21% of patients initially misdiagnosed

Released to highlight Kidney Cancer Awareness Week (1st – 5th February 2021), findings from a recent nationwide survey by leading cancer charity Kidney Cancer UK reveal 46% of respondents were diagnosed at stage 3 or stage 4, greatly reducing chance of a successful treatment. This statistic shows no improvement across the last **three annual surveys, which is 15% higher compared to 2017.
Kidney cancer’s reputation as a hidden killer is underpinned by the fourth most common symptom of the disease reported by respondents as: no symptoms. The top three were 1) pain in the back, flank or side, 2) blood in urine and 3) fatigue.
Around 75% of newly diagnosed patients have localised or locally advanced disease which can be potentially cured, yet there is a high recurrence rate of 40% after surgery for those diagnosed at stage 2 and 3. Unlike some other cancers, there are no effective adjuvant treatments to reduce this risk.
In contrast to many other types of cancer there is currently no test to detect kidney cancer in early stages. Over 60% of patients surveyed were diagnosed following tests, scans, or visits to A&E for treatments unrelated to kidney cancer. Over 21% of patients suffered an initial misdiagnosis with the most common of these being kidney stones, urine infection and irritable bowel syndrome, respectively.
These facts underline the importance of identifying and diagnosing kidney cancer at its early stage, a point where the chances of a successful outcome is high. To this end Kidney Cancer UK continue to call on the Government to fund research into a screening process for kidney cancer which is deliverable at surgery or clinic level. The charity will continue to highlight this call, fund research and will it be the theme for their annual Kidney Cancer Awareness Week from 1-5 February.

Dr Kate Fife

Dr Kate Fife, Consultant Oncologist at Addenbrooke’s Hospital, Cambridge said; “The importance of identifying kidney cancer at an early stage cannot be overemphasized. The finding in this survey that around 50% of patients are being diagnosed at stage 3 and 4 and with no improvement in that statistic in the last three years, is worrying. It is crucial that research into kidney cancer screening is made a priority so that a national screening program can be introduced. This will identify the disease earlier and at a more treatable point.”
Darren with Betsy

Darren Roberts

Stage 4 kidney cancer patient Darren Roberts who was diagnosed at stage 3 said; I am almost sure that if my kidney cancer had been diagnosed earlier my future would been a lot less uncertain. As it is, I am now incurable and heartbroken as mine was discovered by complete accident and now it would appear, too late. I was being scanned for a completely different cancer when my tumor was found. I was horrified, confused, and immediately thrown into a world of fear. This was in 2016, I have been fighting ever since.
Kidney cancer is particularly difficult to pick up in the early stages, but there are flags. Blood in your pee, long term lower back ache and fatigue. I definitely had all three at different stages, lower back ache being the most noticeable, but I was always very active and fit.
The fact the fourth most common symptom of kidney cancer in the survey was no symptom and 19% did not know what type of kidney cancer they have or had is deeply worrying. The message here is If you show any of the symptoms, please see your doctor, and ask questions, be insistent and ask questions. Hopefully, it will be nothing to worry about but well worth checking.” With hindsight I wish I could go back to the beginning of this horrendous journey and play it out again with what I know now – things may have worked out different for me.”
The survey also highlighted that kidney cancer consultants/treating teams are not embracing new therapies. For the second year, few people in the survey underwent less invasive, cost-effective treatments such as cryoablation or radio ablation. Though not suitable for all patients, only 3% respectively of respondents said they received these treatments which have vastly reduced recovery time and much shorter hospital stay. The most common treatments remained open, laparoscopic, or robotic surgery with 86% undergoing a full nephrectomy.
Michelle Greenwood

Michelle Greenwood

Michelle Greenwood, a CNS at St Bartholomew’s Hospital, London “Patients need to feel they are supported at this difficult time so, to see over 47% unhappy with the way they were told they had kidney cancer was disappointing. Patients should have a named clinical nurse specialist (CNS), yet 25% of patients in the survey did not receive one, it is unclear if they were allocated one but didn’t meet them or if not allocated at all. Support and information provided by a CNS is vital when receiving a cancer diagnosis. It is important they are linked to a CNS as soon as possible and are signposted to kidney cancer charities who can provide additional support and information. This can enhance their emotional wellbeing.”
Nick Turkentine, CEO Kidney Cancer UK

Nick Turkentine

Nick Turkentine, of Kidney Cancer UK said; “The centre of our existence is ensuring all patient’s journeys through kidney cancer are supported. They can take comfort in knowing there is someone there to help when they need it. The high level of late-stage diagnosis coupled with the lack of information given to patients are partly an illustration of the level of pressure the NHS is under as a result of COVID-19. But we have to remember that the survey results from years before the pandemic show similar findings. The Government stated, almost exactly two years ago, that “by 2028, 75% of people with cancer will be diagnosed at an early stage”, in those two years kidney cancer patients have seen no change. The charity has been working over the last 3 years to bring our comprehensive Kidney Cancer Accord to NHS Trusts and CCGs across the country. Our Accord aims to ensure a more joined up treatment pathway that enables quicker, effective diagnosis and treatments for patients everywhere. Less common cancers have clear government guidance, kidney cancer has none. It is time to make kidney cancer patients a priority.”

<a href="" target="_self">Malcolm Packer</a>

Malcolm Packer

Malcolm is Chief Executive Officer at Kidney Cancer UK and Kidney Cancer Scotland and has worked with the charity in various capacities for over 15 years.