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Recently Diagnosed

Welcome to Kidney Cancer UK. Here you will find information to help you if you are newly
diagnosed, undergoing or following treatment on a wide range of subject relating to
including Symptoms, treatments, living with kidney cancer and information videos

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Support & Wellbeing

If you need support and would like to talk to one of our Health Professional team
running our free Careline and Counselling service, want a copy of our Living With Kidney
Cancer booklets, or maybe view our wide range of information, exercise, dietary videos,
this is the area for you.....We do more than holding hands

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Phase 3

Clinical Trials & Research

Here you will find a programme to help you find a clinical trial to suit you, information relating
to research programmes we are funding ad how you can apply for such fund along
with information on our Peer Review process.

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Fundraise

Every pound you fundraise or donate and every minute of your time makes a
difference to people with, or those effected by, kidney cancer. Here you will find the
many ways to fundraise, easily donate or set up standing order which helps us to help
others.

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Kidney Cancer Patient Survey 2020

Click below to take our 7th annual patient survey today and make a difference
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Coronavirus (Covid-19) Information Page

NHS & Government Guidelines, information, FAQ and useful links
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Coffee, cake & chat

Join us and other kidney cancer patients for a online get together.
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Kidney Cancer Accord: Consensus Statement

A pathway for kidney cancer patients
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Latest News

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  • rate-my-plate

    Join our Rate My Plate Competition

    15 Oct 2020

    COMPETITION TIME

    Inspired by National Curry Week, we invite you to join in our cooking competition. Why not have your own family curry party in the comfort of your own home?

    Here’s how it works:

    • Cook your favourite curry recipe, and take a picture
    • Post your picture on our Facebook, using the hashtag #bbcp2020
    • Go to https://kcuk.enthuse.com/cf/rate-my-plate-compeition and donate £2.50 to enter
    • The winner will receive a 3-month subscription with The Spicery Tag the spicery in post
    • Closing Date is Tuesday 20th of October at midnight, the winner will be announced on Thursday 22nd of October.

    Warm your cockles us with one of these delicious recipes: –

    Red Thai Prawn Curry 

    Chinese Chicken Curry

    Sweet Potato Katsu Curry

    Fragrant Prawn Curry by Ken Hom

    Italian Chicken Curry by Gino D’Campo

    Pork, apple and tomato quick curry by Bryan Turner

  • patient survey 2020 feat image 4

    Kidney Cancer Patient Survey 2020

    15 Oct 2020

    Thank you for taking our 7th annual national Kidney Cancer Patient Survey 2020.

    This is the only UK focused kidney cancer patient survey now in its 7th year. With your support we are building real-time, big picture knowledge of the disease across Great Britain.

    2020 is an important year and it is vital that we receive as many completed surveys as possible to continue to build a clearer picture of the kidney cancer patient landscape. Through our survey and research, we look forward to a day when kidney cancer is seen as a chronic disease and a fully survivable cancer for all.

    If you are having trouble taking this survey from here please CLICK HERE to use a direct link

    The Kidney Cancer Patient Survey 2020 should only be completed by, or on behalf of, UK treated kidney cancer patients.

    Thank you.

    Please share this survey on your social media by clicking one of the icons in ‘Share post’ below. The more people that complete this, the more knowledge is shared, the more we can listen, inform and support.

    To view previous surveys, please click here

  • nivolumab.

    Cabo+Tecentriq combo shows promise in advanced ccRCC

    06 Oct 2020

    Treatment with Cabometyx (cabozantinib) in combination with Tecentriq (atezolizumab) demonstrated promising clinical activity in patients with advanced clear cell renal cell carcinoma (ccRCC), according to results from the phase 1b COSMIC-021 study presented at the 2020 ESMO Virtual Congress.

    You may find reading our Glossary of Terms when reading this article useful.

    “The combination of cabozantinib (Cabometyx) and atezolizumab (Tecentriq) demonstrated encouraging clinical activity in previously untreated patients with advanced ccRCC,” Dr. Sumanta Kumar Pal, co-director of the Kidney Cancer Program at City of Hope in California, said during a presentation of the ccRCC cohort at the virtual Congress.

    Objective response rates (ORRs) per investigator by RECIST v1.1 were 53% in the 40-mg cohort and 58% in the 60-mg cohort. Complete responses were observed in one patient in the 40-mg group and four patients in the 60-mg group; while 17 partial responses in each cohort were also seen. Fourteen patients in the 40-mg group and 12 patients in the 60-mg group experienced stable disease. Moreover, only two patients in each group had progressive disease.

    Results on Cabometyx
    In the trial, the initial cohort of patients received 40 mg of Cabometyx, while an expansion cohort was administered 60 mg. Median follow-up for the 40- and 60-mg dose groups were 25.8 months and 15.3 months, respectively.

    The 40-mg group demonstrated a disease control rate (DCR) of 94%, while the 60-mg group showed a DCR of 92%. Duration of response has not been reached in the 40-mg cohort, while the 60-mg group’s DOR was 15.4 months.

    The time to objective response in the 40- and 60-mg groups were 1.4 months and 1.5 months, respectively.

    Cabometyx administered at 40 mg induced a median progression-free survival (PFS) of 19.5 months, while the 60-mg dose showed a median PFS of 15.1 months.

    Any reduction in tumor target lesions occurred in 94% of the 40-mg cohort and 92% of the 60-mg group. “Many patients with sarcomatoid features had a large target reduction,” Pal added.

    The researchers also evaluated baseline tumor PD-L1 and CD8 T-cell status to determine lesion change and response. They found that baseline PD-L1-positive status and CD8-positive T cells were associated with greater tumor lesion reductions and with overall response. In addition, T cell rich tumors (CD68high and CD8high) were associated with greater tumor shrinkage from baseline and higher overall response, with 10 of 13 patients who responded to treatment with Cabometyx (77%). “The status of the pretreatment tumor with respect to the immune cell population may contribute to tumor susceptibility to study treatment and warrants further investigation,” Pal said.

    At data cutoff, 14 and 18 patients, respectively, in the 40- and 60-mg cohorts remained on treatment with Cabometyx in combination with Tecentriq.

    In total, 19 adverse events in the 40-mg group and 31 in the 60-mg group led to Cabometyx dose reductions. Seven and 11 patients, respectively, discontinued treatment due to radiographic progression. In addition, 24% and 19% of patients discontinued treatment due to treatment-related adverse events (TRAEs) from Cabometyx and/or Tecentriq.

    Almost all patients experienced TRAEs, which included, but were not limited to, diarrhea, fatigue, nausea, hypertension, decreased appetite, and decreased weight.

    “Cabozantinib (Cabometyx) inhibits tyrosine kinases, including MET, VEGF receptors, and TAM family of kinases,” Pal explained. “It promotes an immune-permissive environment that may enhance response to immune checkpoint inhibitors.”

    The agent has shown promising activity in combination with immune checkpoint inhibitors in tumor types including renal cell carcinoma, urothelial carcinoma, prostate cancer, lung cancer, and hepatocellular carcinoma.

    The phase 1b COSMIC-021 study was designed to evaluate Cabometyx in combination with Tecentriq in patients with solid tumors.

    To be eligible for the study, patients must have been diagnosed with advanced or metastatic ccRCC, received no prior systemic therapy for RCC, had measurable disease per RECIST v1.1, and had an ECOG performance score of 0 or 1.

    The initial cohort of patients in the trial received 40 mg of Cabometyx oral once daily and 1200 mg of Tecentriq intravenously (IV) every three weeks (34 patients). Subsequently, in the expansion cohort, additional patients received 60 mg of Cabometyx oral once daily with the same Tecentriq regimen (36 patients) to evaluate the safety and efficacy of the higher dose.

    ORR by the investigator per RECIST v1.1 served as the primary end point of the expansion phase of the study. Safety served as the secondary end point, while exploratory end points included PFS and correlations of biomarkers with outcomes.

    Ten patients with ccRCC (four at the dose level of 40 mg and six at the dose level of 60 mg) were included in the presentation at the virtual Congress. Data were presented for all 70 patients with ccRCC at the data cutoff of July 21, 2020.

    Median age was 68 years in the 40-mg dose group and 60 years in the 60-mg dose group. In both groups, most patients were male (79% vs 72%, respectively), and had an ECOG score of 0 (79% vs 69%), prior nephrectomy (85% vs 89%), and metastases in the lung (79% vs 75%).

    To read the full article on Cure Today CLICK HERE.

  • #LWKC Webinar

    #LWKC Webinars 2020

    28 Sep 2020

    During COVID-19 and the requirements to socially distance, we are disappointed that we are not able to hold our hugely popular Living With Kidney Cancer Days. So, we have reinvented them as #LWKC Webinars and they are going online via Zoom. To join any of our webinars (all free) please email hello@kcuk.org.uk stating the name and date of the webinar you would like to join and we will send you the log in details. You will not be able to join without the details so, please email early.

    To adjust to these difficult times we have already successfully established our very popular ‘Coffee Cake & Chat’ online groups, where we welcome one-and-all to join us in these informal and relaxed groups. We are now delighted to launch our newly focused #LWKC Webinars which will feature key topics, important to patients, carers and their families right across the UK for each of the events. We will be welcoming key speakers from all areas of kidney cancer treatments and support including world-renowned consultants, surgeons, radiologists and CNS’s to help inform and answer any questions.

    We will present #LWKC Webinars on a range of relevant topics you maybe interested in and be looking for support and advice on, including surgery, treatment, side effects, clinical trials, work and finance. All of our webinars will be delivered by expert speakers who will really help inform you, including people speaking about their own experience of treatment and living with and beyond kidney cancer.

    All dates and details of our #LWKC Webinars and our Coffee, Cake and Chat meetings will be promoted across all our social media platforms on Kidney Cancer UK Facebook, Kidney Cancer Scotland Facebook. Please look at the ‘Events’ section or click the link next to the event you would like to attend, but please, make sure you book your place as this is invitation only.

    #LWKC Webinars for 2020

    • Cancer & Money #LWKC Webinar

    Tuesday 29th September 10:00-11:00

    Our next online webinar is about benefits and what might you be entitled too. Join us and Claire Farrell from Benefits Advice Shop. Please email hello@kcuk.org.uk to receive you personal invite including the Zoom log in details. Please also include any questions you might like to ask in the webinar within your email.

    #LWKC Webinar 2909

     

     

     

     

    ______________________________________________________

    • Treating Small Kidney Tumours – an overview of surgery and cryoablation

    Friday 9th October 10:00 – 11:00

    This #LWKC Webinar will focus on an overview of cryoablation and surgical treatment and feature guest speakers including Dr Des Alcorn and Mr Grenville Oades, with patient story from Mike Tunstall. Please email hello@kcuk.org.uk to receive your personal invite including the Zoom log in details. Please also please include any questions you might like to ask in the webinar within your email.

     

    ______________________________________________________

     

     

     

    PAST Living with Kidney Cancer days

    What attendees have said about our past Living with Kidney Cancer days:

    AM, Plymouth ; “Very informative day”

    RT, Plymouth ; “The day was good to access information from medical professionals and other patients.”

    JT, London ; “They gave me information that the hospital didn’t”

    Anonymous, Birmingham ; “The most informative point of the process I have had, far more than the NHS.”

    2020

    Leeds – 7th February 2020 (Green Friday)                                                                                          Click to read Agenda

    2019

    Glasgow – 20th November – Hilton Grosvenor, 1-9 Grosvenor Terrace, Glasgow                                                                              

    Liverpool – 15th November – Marriott Hotel, One Queen Square, Liverpool, L1 1RH                                                                            

    Swansea – Friday 18th October – The Dragon Hotel, 39 The Kingsway, Swansea, SA1 5LS

    Birmingham – Thursday 19th September  – Novotel, 70 Broad Street, Birmingham

    Ashford (Kent) –  Thursday 20th June – The Holiday Inn, Canterbury Road, Ashford, Kent, TN24 8QQ

    Plymouth – Thursday, February 7th – The Crowne Plaza Hotel, Armada Way, Plymouth, PL1 2HJ

    • Click for agenda                          COMMENTS FROM ATTENDEES:
    • “Very informative day”
      A M, Plymouth 2019;
    • “The day was good to access information from medical professionals and other patients.”
      R T, Plymouth 2019;

    Newcastle-Upon-Tyne – Wednesday 1st May – Copthorne Hotel, The Close, Quayside, Newcastle upon Tyne NE1 3RT

    • Click for agenda                     COMMENTS FROM ATTENDEES:
    • “Reassured that my doubts and fears were well addressed during the day by both the medical staff and patients.”
      RS, Newcastle
    • “(the) day was wonderful, I didn’t feel alone when here”
      Anonymous, Newcastle
    • “A very informative day, and it was good to meet other people who have had the same condition.”
      C, Leeds

    2018

    London: 7th June 11:45am – 15:00pm – Keats House, Keats Grove, Hampstead, London, NW3 2RR

    • Click for London Agenda                                COMMENTS FROM LONDON ATTENDEES:
      “As always, come away feeling more informed, positive and not alone in this journey.”
      Rose Killick, London 2018
    • “They gave me information that the hospital didn’t!”
      John Taylor, London 2018

    Exeter: 11th July 9:45am – 15:30-2pm Buckerall Lodge –Topsham Road, Exeter EX2 4SQ

    Click for Exeter Agenda                                      COMMENTS FROM EXETER ATTENDEES:

    • “Very comprehensive informative presentations”
      Ian Pring, Exeter 2018
    • “An excellent, informative day which would help all renal cancer patients (and professionals)”
      Stephen Driscoll, Exeter 2018

    Aberdeen:  30th August 9.45am- 15.30pm DoubleTree by Hilton, Aberdeen City Centre AB24 5EF

    Click for Aberdeen Agenda (Subject to change)

    Birmingham: 13th September 9:45am -15:00pm Novotel Birmingham Centre hotel, 70 Broad Street, Birmingham

    Click for Birmingham Agenda (Subject to change)    COMMENTS FROM BIRMINGHAM ATTENDEES:

    • “The information day has helped me realise that I am not alone and that there are people positively dealing with the same issues as me.”
      Nathan Kennedy, Brighton 2018
    • “The most informative point of the process I have had far more than the NHS.”
      Anonymous, Brighton 2018

    Brighton:  17th October 9:45 – 3:00 The American Express Community Stadium Village Way, Brighton BN1 9BL

    Click for Brighton Agenda (Subject to change)          COMMENTS FROM BRIGHTON ATTENDEES:

    • “Kidney Cancer UK is such an amazing charity and today has been so beneficial due to the information and presentations given.”
      Peter Wynn, Brighton 2018
    • ‘Great help gave me better understanding of kidney cancer.’
      John Mence, Brighton 2018

    Stirling:  7th November 9.45am- 15.30pm Colessio Hotel Stirling FK8 1DX

    Click for Stirling Agenda 

    Manchester: 22nd November , 9:45am  – 15:00pm    The Lowry, Pier 8, Salford Quays, M50 3AZ

    Click for Manchester Agenda                                COMMENTS FROM MANCHESTER ATTENDEES:

    • “Very helpful and illuminating day.”
      Jeffrey Wynn Davies, Manchester 2018
    • “A very informative day, and it is good to meet and talk to other people who also have this illness.”
      Carol Ives, Manchester 2018
    • “Bringing people together in similar situations helps widen support and understanding.”
      Ross Mallett, Manchester 2018

     

    *All details are correct at time of publication and all agendas are subject to change without notice.

     

     

    The following companies have supported the 2019 events with an unrestricted educational grant:

  • every-penny-counts-landscape

    Every Penny Counts

    28 Sep 2020

    Like everyone we have faced much adversity over the last 6 months. As a charity our team have shown incredible resilience to ensure longevity and the continuation of support that we provide to patients or those diagnosed with kidney cancer. We do not receive any government funding and rely on the generosity of the public through donations and community collections in high streets and supermarkets.

    Due to restrictions during the pandemic we have lost a significant amount of fundraising income which goes towards the cost of the vital services we provide to patients, cares and family members living with kidney cancer.

    We have incredible supporters in our community who raise funds and awareness for us. Without their support we couldn’t continue to listen, inform and support the patients, carers and their families across the nation.

    How can you help?

    Now more than ever we need volunteers, donations, and support as we move forward from COVID-19.

    Ring us on 01223 870008 to discuss further or email hello@kcuk.org.uk

  • Screening

    Kidney Cancer UK funded screening research update

    10 Sep 2020

    Current evidence on screening for renal cancer

    Juliet Usher-Smith, Rebecca K. Simmons, Sabrina H. Rossi and Grant D. Stewart

    Renal cell carcinoma (RCC) rates are increasing worldwide, with high mortality and a high proportion of patients asymptomatic at diagnosis – so should we be screening for RCC?

    screeningPatients with kidney cancer, their caregivers, and clinicians alike define the study of early detection and treatment of RCC as one of their top research priorities. The societal increase in risk factors for RCC (which include older age, smoking, hypertension and obesity) is likely related to the rising incidence of RCC. With 60 percent of RCC patients asymptomatic at diagnosis, many cases are detected late and over a quarter of patients have evidence of metastases at diagnoses. This makes RCC the most lethal urological malignancy; 50 percent of all patients developing the disease will eventually die from it. The increasing incidence, high proportion of asymptomatic patients, and high mortality rate mean that RCC meets some of the criteria for suitability for screening.

    Grant Stewart Screening

    Professor Grant Stewart

    In a recently published Nature Reviews Urology paper, Kidney Cancer UK trustee Professor Grant Stewart of the University of Cambridge, and his co-authors, review the evidence for RCC screening, making a case that further research is necessary to begin the development of a clinical trial for a screening programme. The authors identify some key considerations for an RCC screening programme: the need for a better understanding of whether screening will lead to better patient outcomes and not just length- or lead-time biases; what screening methods would be most suitable for accurate diagnosis; how to effectively target screening for public benefit and cost-effectiveness; and how to balance the need for early diagnosis with the potential harm of overdiagnosis. Using their own unpublished data, from work funded by Kidney Cancer UK, and data from the charity’s annual survey, the paper authors also highlight the public appetite for a screening programme among individuals both with and without a history of RCC.

    Professor Stewart said: “Although Kidney Cancer UK data show that there is appetite for an RCC screening programme, there is research still to be done in order to design an effective programme for clinical trial. As examples, we need to test the best screening methods, determine the prevalence of silent kidney cancers in the community and better understand the natural history of small kidney cancers in order to avoid overtreatment of these lesions which will be identified in the screening process”.

    ‘Current evidence on screening for renal cancer’ is available to read behind a paywall at Nature Reviews Urology.

    To help us in this and the many research projects we fund and support, please donate here.

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