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Health Professional | FAQ | Kidney Cancer Scotland
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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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#LWKC Webinars 2020

Join us online
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Coronavirus (Covid-19) Information Page

NHS & Government Guidelines, FAQ and useful links UPDATED September 2020 - Scotland updated September 2020
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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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  • #LWKC Webinar

    #LWKC Webinars 2020

    28 Sep 2020

    During Covid-19 and social distancing requirements, we are disappointed not to be able to hold our hugely popular Living With Kidney Cancer Days. So, we have reinvented them as #LWKC Webinars and they are going online through 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 topics you’ll experience and be looking for support and advice in, including finance, insurance, grant applications, speakers that will really help inform you. 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.

  • SMC approves combination therapy for patients in Scotland

    07 Sep 2020

    Kidney Cancer Scotland add their voice to those praising the Scottish Medicine Consortium’s (SMC) approval of the therapy Keytruda (pembrolizumab) in combination with Inlyta (axitinib) for kidney cancer patients in Scotland. Following positive trials results, the news of this approval offers patient’s better treatment options and outcomes with an improved quality of life.

    Maureen (Mo) Johnson

    Kidney Cancer Scotland’s health professional nurse Maureen Johnson said: “We are delighted the combination of pembrolizumab and axitinib has been approved by the SMC. This is excellent news for kidney cancer patients in Scotland as trials showed significant improvement in survival and plays an important role in the treatment of kidney cancer. Our community has been closely watching developments in the USA and Europe and have been pleased to see approvals being given. Now, all people in Scotland diagnosed with metastatic disease will have access to the most effective treatment earlier.

    “We hope the rest of the UK follows Scotland’s positive lead as we were extremely disappointed for patients in England and Wales when NICE rejected this same combination recently. We look forward to this recommendation being reviewed and reversed as soon as possible.”

    Paul Dornan, a Stage 4 patient living in Scotland with chromophobe, a rare form of kidney cancer, said; “I am more than delighted to hear the SMC have approve Pembrolizumab and Axitinib for patients in Scotland. I am living proof of its effectiveness. After three years of fighting metastatic kidney cancer, I was further diagnosed in May 2020 with new metastases in my brain, almost unknown with chromophobe kidney cancer. My oncologist suggested the best course of treatment would be a to join the trial for this combination therapy. I started my treatment at the end of May and to everyone’s delight, my scan in August showed a reduction in the size of all my tumours. This was the first positive news I had received since my diagnoses in 2017. I am in touch with patients in the USA who are on this therapy and like me, many have seen reduction in the size of their tumours.”

  • #greenstackkidneycanceruk

    #GreenStackforKidneyCancerUK Challenge

    03 Sep 2020

    Amina Makele wants to get the Instagram community to join her in her #Greenstackforkidneycanceruk challenge by stacking up green books, snapping them and posting the pictures on social media in aid of Kidney Cancer UK.

    On the 11th August, Amina posted her challenge to her Instagram account (@aminasbookshelf) and here she explains how this challenge came about: “A while ago @teawithalmondmilk tagged me in this challenge#GreenStackforKidneyCancer which was started by @mama_bookshark in America who donated $1 for every picture posted of ‘stacks of orange books’ in July to the cancer hospital near her home. So, as I’m a bit late to the game, I am tagging some UK ‘bookstagrammers’ to join in and I’ll donate £2 per ‘Orange Stack’, posted by 31 August (including my own), to Kidney Cancer UK . Anyone can  join in and I just ask, ‘please use the hashtag #orangestackforkidneycanceruk and tag me in your posts to make sure I see them’!”

    Why Kidney Cancer UK, Amina? “Well, after reading a bit about this UK charity, I believe it’s a great cause and although I have not personally been affected by kidney cancer (my family has been affected by other types of cancers, though), this is a little opportunity to do some small good in the world.”

    On the 31st August Amina followed up her post saying how in awe she was of the amount of people sharing pictures of  their stacks. Moreover, she was moved by the number of personal stories posted by people affected by kidney cancer, and many other types of cancer. This drove home the importance of her joining the challenge even more. To date she has personally donated £400 to Kidney Cancer UK through this challenge.

    Amina continues: “I never expected this fundraiser to work so well and I’m absolutely astounded by the power, kindness and compassion of the ‘bookstagram’ community.”

    In her post on the 31st August, Amina flipped the original idea from America. She explains: “Shortly after posting my challenge Kidney Cancer UK informed me that orange is the colour for the fight against kidney cancer in the U.S.A, whereas the UK colour is green. As the challenge was already in motion, I’ve thought of an idea to address this. If you took part (or want to take part) in this fundraising initiative, it would be fantastic if you could post a green book stack on your main feed or story and tagging @kidneycanceruk. You are in NO WAY obligated to do this and I know many of you have already donated. However, this would be a lovely, final push to show our appreciation for the charity’.”

    #GreenStackforKidneyCancerWe would love to see more #greenstackforkidneycancer posts and start with ours here, get posting today….

    Here is a draft post to use if you’d like to take part on any social media platform; Facebook, Twitter or the original on Instagram:

    The #Bookstagram community on Instagram started #orangestackforkidneycancer and so far, raised has over £400. I’m turning Green to support a fantastic charity and encourage as many people as possible to post a #greenstackforkidneycanceruk and contribute individually by texting ‘KCUK 2’ to 70085 to donate £2. #greenstackforkidneycanceruk #charitystack #bookstagram #orangestackforkidneycanceruk #orangestackforkidneycancer #orangestacksforkidneycancer #kidneycancerawareness #bookblogger

    We want to say a massive thank you to Amina for choosing to build on the foundations of the original challenge and pledge towards us. We are also overwhelmed with the amount of Instagram users that have taken part and tagged us. This continues to be a fantastic challenge to raise vital awareness of kidney cancer across the bookstagram community and far beyond at the same time as raising funds to support our work. We are sincerely thankful and grateful to everyone that has taken part!

  • pembrolizumab with axitinib Feat image

    NICE rejects pembro+axitinib therapy for aRCC

    27 Aug 2020

    Kidney cancer community strongly disagrees with NICE decision not to approve pembrolizumab with axitinib therapy

    Kidney Cancer UK, the UK’s largest kidney cancer charity is adding its voice of disappointment to the news that NICE have not approved the use of pembrolizumab with axitinib for untreated advanced renal cell carcinoma.

    Professor Thomas Powles, Consultant Medical Oncologist at St Bartholomew’s Hospital, London said; “axitinib and pembrolizumab improves survival significantly and has an important role to play in the treatment of kidney cancer. Rejecting the most active cancer treatments is disappointing for patients.

    Mike Lee, a kidney cancer patient with aggressive mRCC who was part of the drug trial, said; “I strongly disagree with NICE’s decision not to approve this combination therapy as a first line treatment as it has been shown to be very effective for many patients. My personal experience was extremely positive. After being on the trial my first scan at 12 weeks showed my tumours had shrunk by 60 per cent, I experienced no significant adverse side effects and my quality of life was unaffected. This combination has been accepted in other countries, including the USA, and I’m sure like me kidney cancer patients in England and Wales are left wondering; ‘why not us?’”

    Susanna Smith, Kidney Cancer UK’s Health Professional nurse, concluded; “The decision by NICE concerning axitinib and pembrolizumab is extremely disappointing for the kidney cancer community. This is a combination which is showed great results in the clinical trial and has been very well tolerated by people. The combination has been used widely in the USA to great success since its approval in April 2019 so unfortunately this decision will be leave us lagging behind in proving affective, cutting edge treatment options for patients in England and Wales.”

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