Over 20 Years of Kidney Cancer UK

For the over 20 years Kidney Cancer UK has been a consistent, prominent and influential name working to support patients through the approval of drugs for kidney cancer patients, better treatments and a clear treatment pathway.

No matter who the faces are behind the name, the main thrust and driver of the charity has always been the welfare of patients, their carers and their families; we are here to listen, inform and support.

With an increasing number of people developing kidney cancer, treatment options have improved significantly in the last two decades, offering better survival rates worldwide. But, five-year survival rates in the UK lag behind Europe.

Twenty years on we look through the archives and back up to 2020 and look at what has changed in and for the care of kidney cancer patients.

Over 20 years of kidney cancer treatment and support in the UK

Despite increasing numbers of people developing kidney cancer (an 87% increase since the early 1980s) and a prediction for this to continue rising, the awareness of kidney cancer is not as high as that of other less common conditions and the UK has a markedly lower survival rates than the average across Europe.

James with his late wife Melinda who was also a trustee of the James Whale MBE Fund

2020 marked 20 years since the creation of the name Kidney Cancer UK, a name that has become synonymous with excellence in supporting people affected by kidney cancer, their carers and families. We carry on in this name with a cause as clear and more urgent than ever. Our mission is to reduce the harm caused by kidney cancer, now the seventh most common cancer in the UK.

Your support is more important than ever to enable us to continue spreading the word about simple lifestyle changes that can reduce risk factors for kidney cancer. Also, highlighting the signs to look out for in recognising the disease at an early stage to patients and health professionals alike. In recognition of the past 20 years we’re taking a look back through the archives at the changes in incidence, the progression in treatment and as a consequence of people’s outlook, as well as the people your support has enabled us to help.

Founded by patients for patients

Keith Taylor a co-founder of KCUK in 2000

Kidney Cancer UK was established in 2000 by Keith Taylor and Dick Williams, two men with kidney cancer who were committed and determined to help other people going through the same experiences as themselves. Sadly, both were diagnosed at a late stage, as is predominantly the case with kidney cancer even up to today, and eventually lost their lives.

Nick Turkentine CEO

In the same year that Kidney Cancer UK was formed, the broadcaster James Whale MBE had a kidney removed due to kidney cancer. His experiences and frustration with the lack of information about the disease also drove him to help others; leading to the formation of the James Whale MBE Fund for Kidney Cancer in 2006 with Nick Turkentine as CEO. Nine years later, in 2015, having realised the strength that one united charity can offer people affected by kidney cancer and in raising the awareness of this often-forgotten and yet relatively common cancer, the two charities merged. In February 2016 the name of Kidney Cancer UK was relaunched and embarked on a new era.

How we help the kidney cancer community

A committed charity, today Kidney Cancer UK helps patients, carers and families affected by kidney cancer through:

• operating a telephone Careline that provides support, information and encouragement for patients, their carers and families.
• hosting a closed Facebook group where over 1,000 patient, carers and their families can support each other by sharing knowledge and first-hand experiences.
• offering patient support grants to ease economic hardship caused by additional costs as a result of a diagnosis.
• introducing the UK’s first and only nurse-training programme dedicated solely to kidney cancer.
• providing Living with Kidney Cancer educational days and local support groups across the UK to help all those touched by kidney cancer. By raising the awareness of kidney cancer with the general public, we aim to help with prevention, as well as with the identification of symptoms and with policymakers to help represent the needs of people with kidney cancer.
• we offer the Uk’s only free kidney cancer Counselling service
• we initiated and are owners of the UK’s first Kidney Cancer Awareness Week
• runs the UK’s only dedicated annual kidney cancer patient surveys to help understand the patient journey from diagnosis through to treatments (2019 results will be published towards the end of January)
• we have a very active team of Kidney Cancer UK and Kidney Cancer Scotland Health Professionals connecting with patients, hospitals, medical professionals, NICE and the SMC. Making a real difference to the kidney cancer landscape across the UK

Twenty years on: what changes have we seen in kidney cancer?

Over the twenty years, Kidney Cancer UK has been helping those touched by kidney cancer, there have been significant changes in the incidence, treatments and outlook for kidney cancer patients.

Incidence has risen significantly and kidney cancer is now the UK’s seventh most common cancer with the number of people diagnosed predicted to grow by more than a quarter between 2014 and 2035. This increase is thought to be due, in part, to the increased use of medical imaging, resulting in the detection of a somewhat asymptomatic disease. Our surveys with patients routinely show that kidney cancer is often found accidentally, during tests carried out for other reasons, or following admission to A&E for an unrelated illness.

Yet, despite it now being one of the most common cancers in the UK, public awareness of kidney cancer is not as high as that of other less common conditions. The UK, although having improved survival rates over recent years, is markedly lower than the average across Europe: Scotland and England have the third and fourth worst five-year survival rates for the disease in Europe.

These statistics can’t be ignored which is why prevention and education is the foundation of our work. Clearly, some risk factors for kidney cancer can’t be changed, such as family history and genetic conditions, but by constantly working to raise the awareness of simple lifestyle factors that we can all implement and are known to help reduce our risk, we can help future generations. Simple ways to reduce our risk include maintaining a healthy weight, a healthy blood pressure and by not smoking.

One of the most significant factors in the success of kidney cancer treatment is early diagnosis, which improves the chances of a successful outcome for patients. Sadly, however, the often non-specific symptoms of kidney cancer can lead to difficulties in diagnosis so raising the awareness of signs and symptoms, with clinicians and the general public, is pivotal in our work. The most common symptoms, according to our 2019 patient survey, include:

• persistent pain in the lower back or side just below the ribs
• blood in urine
• fatigue
• night sweats
• raised blood pressure
• a lump or swelling in the side (although kidney cancer is often too small to feel)

What did a kidney cancer diagnosis mean 20 years ago?

Twenty years ago, the outlook following a diagnosis of kidney cancer was relatively bleak. If the cancer was caught early enough, surgery to remove the kidney and tumour may have been sufficient treatment, but anything beyond complete removal rarely had a good prognosis. Thankfully, since then, we have seen huge developments in the treatment of kidney cancer and today even if the cancer has spread, treatment can sometimes help keep it under control. Current treatments include:

• Surgery to remove part or all of the affected kidney
• Cryotherapy or radiofrequency ablation, where the cancerous cells are destroyed by freezing or heating
• Biological therapies, where medications help stop the cancer growing or spreading
• Embolisation, a procedure to cut off the blood supply to the cancer
• Radiotherapy, using high energy rays to target cancer cells and relieve symptoms

A snapshot of the history, treatment and support for people
with kidney cancer since the year 2000

2000

Kidney Cancer UK founded, by patients Keith Taylor and Dick Williams for patients, to help support people going through a diagnosis of kidney cancer

2004

The first robot-assisted laparoscopic partial nephrectomy introduced

2006

James Whale MBE Fund for Kidney Cancer (JWF) is founded by journalist/ broadcaster James Whale MBE and Charity executive Nick Turkentine.

The European Medicines Agency (EMA) approved Sorafenib (brand name Nexavar) a targeted cancer drug called a cancer growth blocker. Cancer Growth Blockers block the growth factors that trigger cancer cells to divide and grow. Overall survival: 17.8 months

The EMA also gave conditional approval to Sunitinib (brand name Sutent), a targeted cancer drug called a protein kinase inhibitor. Protein Kinase is an enzyme that plays a part in the growth of cancer cells. Sunitinib blocks the protein kinase to stop the growth of a tumour or to shrink it. 26.4 months overall survival

2007

Bevacizumab (brand name Avastin) given approval by the EMA. An angiogenesis treatment, this targets a cell protein called vascular endothelial growth factors (VEGF) which help cancers grow blood vessels. Bevacizumab blocks the protein to stop the cancer from growing blood vessels. 23.3 months overall survival

2008

James Whale MBE Fund for Kidney Cancer launch Kidney Cancer Scotland

2009

Everolimus (brand name Afinitor) approved by the EMA. This is a type of cancer growth blocker which works by reducing the blood supply to the cancer and slowing down its growth. 14.8 months overall survival.

2010

Pazopanib (brand name Votrient), an angiogenesis treatment, approved by the EMA. Pazopanib is a tyrosine kinase inhibitor (TKI). Tyrosine kinases are proteins which act as enzymes in cells to stimulate cancer cells to grow. Pazopanib blocks a number of these proteins and is called a multi TKI. It stops cancer cells forming blood vessels that they need to grow. 22.9 months overall survival.

James Whale MBE Fund for Kidney Cancer hold their first set of patient days in England

2011

James Whale MBE Fund launch the UK’s first free to call dedicated kidney cancer Careline

The Scottish Medicines Consortium approves Pazopanib for first-line treatment of advanced RCC

2012

Axitinib (brand name Inlyta) approved by the EMA. Axitinib is a TKI, a cancer growth blocker. TKIs work by blocking certain proteins called tyrosine kinases from acting on cells. Tyrosine kinases signal to cancer cells to grow. 20.1 months overall survival.

2013

The Scottish Medicines Consortium (SMC) recommends Axitinib (Inlyta) for use within NHS Scotland for second-line kidney cancer treatment

Kidney Cancer Scotland hold their first kidney cancer patient day

2014

NICE recommend Axitinib for second-line treatment of kidney cancer

James Whale MBE Fund for Kidney Cancer launches the first UK and kidney cancer-focused patient survey. From this point it is as an annual event

2015

The James Whale Fund for Kidney Cancer and Kidney Cancer UK merged to provide patients and clinicians with one united kidney cancer charity, called Kidney Cancer UK

2016

Nivolumab (brand name Opdivo) approved by the European Commission for the treatment of patients with advanced melanoma and previously treated RCC.

Cabozantinib (brand name Cabometyx and Cometriq), a TKI, was approved by the EMA as a second-line treatment for kidney cancer that has spread to other parts of the body (advanced kidney cancer). It works by blocking the signals inside cancer cells that make them grow and divide.

Lenvatinib (brand name Kisplyx) approved by the EMA for use in combination with Everolimus

Kidney Cancer UK recruit its first in-house Health Professional

Kidney Cancer UK and Kidney Cancer Scotland launch the UK’s first Kidney Cancer Awareness Day, now an annual event

2017

Cabozantinib and Everolimus individually approved by NICE in England and Wales for advanced kidney cancer

Cabozantinib approved by the Scottish Medicines Consortium

Tivozanib (brand name Fotivda), a TKI, was approved by the EMA  for advanced kidney cancer.

2018

Kidney Cancer UK and Kidney Cancer Scotland launch the UK’s first free dedicated Counselling service for patients and those touched by kidney cancer

The Scottish Medicines Consortium approves Tivozanib for first-line treatment of advanced RCC

2019

The Scottish Medicines Consortium approves Nivolumab + Ipilimumab and Lenvatinib + Everolimus combination therapy’s for first-line treatment of patients with advanced kidney cancer who have a risk of progression.

Kidney Cancer UK and Kidney Cancer Scotland launch the ‘Melinda Whale Memorial Award’ for outstanding care in nursing. An award to recognise the contributions of an outstanding nurse who has improved the care of kidney cancer patients in the UK. The inaugural winner was Anneliese Peach for her compassion and care for patients in Leeds and Yorkshire.

2020

Recognising 20 year of the name Kidney Cancer UK being synonymous with supporting patients as the leading kidney cancer charity across the UK

THE FUTURE

Looking forward to the future, Kidney Cancer UK and Kidney Cancer Scotland look to develop an even deeper understanding of treatments and grow even further as part of the answer patients are looking for following diagnosis. Not only becoming a key funder in the development of groundbreaking research but, in strengthening the continued support we give to patients, their families and carers every day of the year through support groups, information packs, patient grants and services and research to name but a few.

With your support we can work to help patients everywhere across the UK.

Working to help you live a full life; 
with, through and past kidney cancer; far into the future.