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Patient Survey Results Autumn 2018

Almost half of kidney cancer patients suffer initial misdiagnosis

Kidney Cancer UK calls for government to support national kidney cancer screening programme.

Kidney Cancer UK, the UK’s leading kidney cancer charity, has highlighted worrying concerns at the difficulty of identifying the disease as *45% of patients received treatment for unrelated illnesses before kidney cancer was diagnosed. Data from the charity’s latest patient survey released today revealed the most common of these initial misdiagnoses was urine infection, kidney stones and respiratory problems (asthma, cough, short of breath). The importance of swift action when treating any form of cancer is imperative and in many cases a misdiagnosis has proven fatal and as such Kidney Cancer UK is calling for the Government to support their research into a national kidney cancer screening programme.

Local GP Dr. Juliet Usher-Smith said; “The finding that, of those surveyed, almost half of patients had no symptoms before diagnosis really shows how difficult it is to diagnose kidney cancer and the urgent need for better ways of identifying this silent killer earlier.”

The survey, which is the UK’s only kidney cancer focused annual survey, received 270 patient responses, exposing some startling facts: almost half (48%) were diagnosed at the most life-threatening stages, 3 and 4, where the prognosis is much worse. Furthermore, 73% of those surveyed showed no signs of the disease before diagnosis, highlighting the difficulty in recognising and rapidly diagnosing the UK’s seventh most common cancer. The reason is that kidney cancer symptoms are often difficult to detect in its early stages and that the common symptoms can often be misread as other ailments. Patients most commonly present at GP level with fatigue (39%), pains in the back, side & flank (38%) and blood in urine (36%).

At this year’s Conservative Party Conference, Prime Minister Theresa May announced a new cancer strategy aimed at increasing the number of people whose cancer is diagnosed early from the current figure of 1-in-2 to 3-in-4 people by 2028. She pledged new diagnostic facilities.

Mr Grant Stewart of the University of Cambridge and Addenbrooke’s Hospital, Cambridge

Mr Grant Stewart

Kidney cancer surgeon, Mr Grant Stewart of the University of Cambridge and Addenbrooke’s Hospital, Cambridge said: “These statistics, along with the Prime Minister’s announcement of an earlier diagnosis strategy stand as a stark reminder of the continued elusiveness of diagnosing kidney cancer at an early stage where surgery would be curative. Kidney Cancer UK has an active working party developing a Kidney Cancer Accord which we will present to NICE and the NHS recommending steps towards making improvement in quality of services and consistent pathways for patient treatment.”

CEO of Kidney Cancer UK, Nick Turkentine

Nick Turkentine CEO, Kidney Cancer UK

Chief Executive of Kidney Cancer UK, Nick Turkentine, welcomed this new ambition, but pointed out: “Hi-tech, diagnostic testing is only part of the answer. In the case of kidney cancer, we urgently need clear quality standards and performance indicators to support clinicians to help them identify at-risk patients, until a simple test to detect kidney cancer can be developed. It is important that we as a charity can help GPs identify symptoms of kidney cancer through sustained and penetrative awareness campaigns to both the public and GPs.”

 

Hollyann Prince was 23 when she first went through a series of misdiagnosis and tragically lost her brave battle in June 2018. As heartbreaking as Hollyann’s story is, her parents selflessly want people to hear what she had to say and have allowed us to use Hollyann’s video to highlight the importance of early diagnosis, and the consequences of it being overlooked, to everyone. In this video, recorded late 2017, she talks honestly and openly about the her tough journey. Hollyann was a wonderful person and is deeply missed by all.

Words from Hollyann’s blog she wrote for us:

So, I guess as much as I despise you kidney cancer, I have to thank you for making me live a little more, for making me accept my body more, for giving me that extra boost to spend yet more money on clothes and to make me want to see more of the world. I have to thank you for strengthening certain relationships, for making me realise how little awareness there is around you and for quite frankly, keeping me on my toes. However, in all honesty, kidney cancer you truly suck, and I sincerely hope (like all other cancers) that you sod off and never return.

Linzi Atkinson, Patient quote:

I was misdiagnosis in early 2017 even though I presented to my GP with the classic symptom of kidney cancer, blood in my pee. As soon as I notice it I went to the doctor who treated me for a possible urinary infection with little or no further investigation and I was sent home with just antibiotics. I would have thought no more, and the cancer would have continued to grow inside of me, but I continued to see blood and I just didn’t feel right. Many weeks later the kidney cancer was picked up and in 2017 my whole kidney had to be removed along with the tumour. The importance of a national kidney cancer screening programme is vital to tackling this silent killer and it can be picked up by a simple ultrasound scan. Also, raising awareness to the medical profession so as when a patient tells their doctor they have blood in their pee one the first thing that should be check for every time is kidney cancer. Although I had a very tough time, I consider myself to be one of the lucky 45 per cent that survived an initial misdiagnosed, tragically, I have met people that were not.

John Griffin, Patient quote:

The importance of an early diagnosis with kidney cancer is essential. I passed blood, I was in severe pain, I passed solids through the urinary tract and diagnosed as having kidney stones. The key indicators pointed to kidney stones, but this was a misdiagnosis. This was no fault of the hospital but there should be a screening programme for kidney cancer because a misdiagnosis can have catastrophic and fatal results. I was one of the lucky ones and count my blessings every day. We need a kidney cancer national screening programme to detect this silent killer before it is too late.

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