Over 20 Years of KCUK

No matter who the faces are behind the name, the main thrust and driver of the Kidney Cancer UK has always been the welfare of patients, their carers and 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 not only in the UK, but worldwide, though five-year survival rates in the UK lag behind Europe.

Twenty years on we look through the archives from 2000 up to 2020 and at what has developed and changed in the treatments and 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.

Founded by patients for patients

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.

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:

• our website recieves around 150,000 visits each year
• our open Facebook page reaches around 10,000 each month
• operating a free telephone Support Line that provides support and information for patients, their carers and families.
• hosting four closed Facebook groups where over 2,300 patient, carers and their families support each other by sharing knowledge and first-hand experiences.
• introducing the UK’s first and only healthcare professional 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 supporting over 400 clients each year
• we initiated and are owners of the UK’s first Kidney Cancer Awareness Week now in it’s 10th year
• carry out the UK’s only dedicated annual kidney cancer patient surveys to help understand the patient journey from diagnosis through to treatments now in its 11th year
• we have our own active team of Kidney Cancer UK 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
• fatigue
• blood in urine
• 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