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Kidney Cancer Awareness Week 3-7 February 2020

3-7 February 2020
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20 years of Kidney Cancer UK

Kidney cancer landscape over
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Living With Kidney Cancer Days 2020

Check the dates for our free Living With Kidney Cancer days for 2020.
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  • Kidney Cancer Awareness Week header 2020

    Kidney Cancer Awareness Week 3-7 February 2020

    14 Jan 2020

    Monday 3rd to Friday 7th February is our annual Kidney Cancer Awareness Week 2020 across the United Kingdom and Northern Ireland, culminating with Green Friday on 7th February.

    Use the hashtag #KCAW2020 and instantly join the online conversation.

    Now in its fifth year, Kidney Cancer Awareness Week’s goal is to get people talking about kidney cancer, highlight the many shortfalls in the route of diagnosis used across the UK, the availability of drugs and novel treatments and the care of patients throughout their cancer. It is also important to raise the overall profile of the disease within the UK government’s agenda and lift the profile of the disease across the national media. Cancers with less impact on loss of lives are given higher priority when it comes to screening programmes and awareness campaigns. And, whilst we don’t want to see any reduction in support for other cancers, the criteria needs to be clearer and the financial support scales must be evenly balanced. The disease is notoriously difficult to identify in its early stage with over 59% of patients in our  Kidney Cancer UK Patient Survey 2019 (publication 3rd February 2020) saying their diagnosis was an incidental finding, or identified during a visit to A&E. This should not be an excuse for not investing in a national screening programme, it should be the reason.

    Our key message for Kidney Cancer Awareness Week 2020 is to highlight the unacceptable level of late diagnosis of kidney cancer occurring too frequently across the UK. Of the 331 patients that took part in our survey over 45% were diagnosed at late stage 3 or 4

    Nick Turkentine – CEO Kidney Cancer UK said; “We are calling on policy makers, healthcare professionals and charities to come together right now, to improve the outcomes of kidney cancer services in the UK and adopting a clear kidney cancer treatment pathway to ensure diagnosis is delivered in early stages. Too many lives are being lost to late diagnosis and we need to see an action to stem the tide.”

    Awareness Week Plant a Seed for Research 2020

    Kidney Cancer UK and Kidney Cancer Scotland are supporting research into a national kidney cancer screening programme, we receive no government funding an rely on the generosity of the public for funding. You can help us and show your support by joining in our ‘Plant a Seed for Research’ campaign.

    Kidney Cancer UK and Kidney Cancer Scotland are supporting research into a national kidney cancer screening programme. We receive no government funding and rely on the generosity of the public for funding.

    For a minimum donation of £5.00 we will send you a pack of Sunflower seeds to plant, from which hope and new life will grow through the research we support.100% of the profit from your donation will go to research into kidney cancer.  You can join in ‘Plant a Seed for Research’ by clicking HERE. Once your seeds start to bloom in the summer you can share pictures of your lovely flowers via our Facebook page.

    Kidney Cancer Awareness Week 2020 culminates with Green Friday (7th February) when we ask everyone to wear as much green as possible to show their support for all kidney cancer patients, their families and carers. We want to drive conversations and move kidney cancer in the general awareness, so the public are aware and GP’s, consultants and all medical specialists have kidney cancer high on their radar when talking to patients. On Green Friday we would love for you to share your pictures via our Facebook page.

    Despite being the seventh most common cancer in the UK: the fifth most common in men and the tenth in women, kidney cancer remains relatively unheard of, but together we can change that. Each year in the UK 12,500 people are diagnosed with kidney cancer, and it accounts for three per cent of all new diagnoses. 42% of kidney cancer cases are linked to major lifestyle factors; including smoking and obesity.

    We will continue to highlight findings of our Kidney Cancer Patient Survey 2019 with the objective of increasing the nation’s awareness and improving conditions, and consequently offering a brighter future for those with kidney cancer.

    It is important to always talk about kidney cancer and the importance of early diagnosis which promotes awareness of this silent killer. We simply do not know who it will strike next. Be aware of the 10 signs of kidney cancer:

    1. Blood in the urine
    2. Persistent low back pain
    3. Pain in the side, between the ribs and hipbone
    4. A lump or mass in the area of the kidneys
    5. Persistent high temperature
    6. Night sweats
    7. Persistent cough
    8. Tiredness
    9. Weight loss
    10. Loss of appetite

    Kidney Cancer Patient Survey 2019

    Coming 3rd February

    Read the report from our Kidney Cancer UK Patient Survey 2019 here, from 3rd February:

     

    As well as the highlighting of the survey, an online social media campaign will run in the weeks leading up to, and on the day with special messaging using the hashtag #KCAW2019 so everyone can instantly join the online conversation.

    JOIN THE CONVERSATION, SPREAD THE WORD!

    With this Kidney Cancer Awareness Week, we want everyone to unite in the fight against kidney cancer. Start a conversation and keep talking and ask the question; What will you do to ‘Make some noise about kidney cancer’ in Kidney Cancer Awareness Week 2020?

    Use the hashtag across all social media platforms #KCAW2020

    Through this simple act we can make a difference and save lives.

  • Kidney Cancer UK Accord

    Kidney Cancer Accord: Consensus Statement

    13 Jan 2020
    Kidney Cancer UK Accord

    Click to read or download

    The ‘Kidney Cancer UK Accord: Consensus Statement’ seeks to establish a common pathway for all patients across England and Wales.

    Kidney cancer is the 7th most common cancer in the UK. Of the six cancers that are more common than kidney cancer, only lung cancer is more difficult to treat successfully.

    As such, kidney cancer is a significant cancer in an important organ within the body. However, there is a low level of awareness of kidney cancer and the symptoms that patients may present with. Also, although there are pockets of excellence, there is significantly less research and funding for research into this cancer compared to other cancers – particularly in the area of non-metastatic disease. These factors are reflected in the lack of an agreed quality framework around key aspects of the patient pathway.

    This Consensus Statement aims to develop the key elements of good quality in kidney cancer care across England and Wales. In due course this will be supported by a set of Quality Performance Indicators. The aim is the development of an overarching NICE Clinical Guideline for kidney cancer, similar to the other existing NICE guidelines for many comparable conditions

    Click to download

    A useful companion to our document is the paper ‘Overcoming Equality: Achieving Better Outcomes for Kidney Cancer’ published late 2019 by pharmaceutical company Bristol-Myers Squibb and endorsed by Kidney Cancer UK. You can download and read a copy of this report by clicking the image to the right.

  • living with kidney cancer days 2020

    Living With Kidney Cancer Days 2020

    11 Dec 2019

    Following our successful Living with Kidney Cancer days 2019, we are looking forward to 2020

    We are hosting more Living With Kidney Cancer days around the UK in 2020. These days are designed to be relaxed, informal and offer you the opportunity to become more informed through presentations from health professionals on a variety of topics relevant to your condition. These will include surgery options, oncological treatments, dealing with side-effects as well as the opportunity to meet with, and share your experiences with, other patients and their loved ones.

    Once confirmed and available you can view the agenda for a specific day, click the link below for the day you wish to attend. A PDF of the agenda (when available) will open when you click the corresponding link below your selected venue. You can then view and close or download the agenda to keep.

    All Living With Kidney Cancer Days are free to attend, lunch and refreshments are provided and reasonable travel expenses may be available. Please contact us for more information before committing to any travel plans. If you have any special dietary requirements (vegetarian, vegan, any allergies etc.) please let us know at the time of booking your ticket.

    Once the location has been confirmed you will be able to book your place by clicking on the ‘BOOK TICKETS FOR…’ date you would like to attend and a link will open. ALL DAYS ARE FREE TO ATTEND.

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

    AM, Plymouth 2019; “Very informative day”

    RT, Plymouth 2019; “The day was good to access information from medical professionals and other patients.”

    JT, London 2018; “They gave me information that the hospital didn’t”

    Anonymous, Birmingham 2018; “The most informative point of the process I have had, far more than the NHS.”

    Living with Kidney Cancer days for 2020:

    Leeds – 7th February 2020 (Green Friday)                                                BOOK YOUR FREE TICKET
    Hilton Leeds City, Neville Street, Leeds, LS14 BX                                                      Click to read Agenda

    Cambridge – TBC

    Manchester – TBC

    Scotland – location TBC

    South West – location TBC

    PAST Living with Kidney Cancer days

    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:

  • Plastic container with urine

    Non-invasive test that can detect kidney cancer

    28 Nov 2019

    Renal cell carcinoma (RCC) has poor survival prognosis because it is asymptomatic at an early, more curative stage. Recently, urine perilipin-2 (PLIN-2) was demonstrated to be a sensitive and specific biomarker for the noninvasive, early detection of RCC and an indispensable indicator to distinguish cancer from a benign renal mass.

    However, current Western blot or ELISA PLIN-2 assays are complicated, expensive, time-consuming or insensitive, making them unsuitable for routine analysis in clinical settings. Here we developed a plasmonic biosensor based on the high refractive index sensitivity of gold nanorattles for the rapid detection of PLIN-2 in patient urine.

    biopalsmic test for kidney cancerThe paper-based plasmonic assay is highly sensitive and has a dynamic range of 50 pg/ml to 5 μg/ml PLIN-2. The assay is not compromised by variations in urine pH or high concentrations of interfering proteins such as albumin and hemoglobin, making it an excellent candidate for routine clinical applications. The urine PLIN-2 assay readily distinguished patients with pathologically proven clear cell carcinomas of various size, stage and grade (55.9 [39.5, 75.8] ng/ml, median [1st and 3rd quartile]) from age-matched controls (0.3 [0.3, 0.5] ng/ml), patients with bladder cancer (0.5 [0.4, 0.6] ng/ml) and patients with diabetic nephropathy (0.6 [0.4, 0.7] ng/ml). Urine PLIN-2 concentrations were roughly proportional to tumor size (Pearson coefficient 0.59).

    Thus, this cost-effective and label-free method represents a novel approach to conduct a non-invasive population screen or rapid differential diagnosis of imaged renal masses, significantly facilitating the early detection and diagnosis of RCC.

    read the full article and detail on Kidney International Click HERE

  • folic acid

    Folic acid reduces mucositis in mRCC

    19 Nov 2019

    With the introduction of tyrosine kinase inhibitors (TKI) and mTOR-inhibitors a decade ago, many metastatic RCC patients have received their treatment as tablets on a daily basis and life-long. Since the treatment is continuous, tolerability is crucial. Adverse events may require dose reduction, discontinuation, or shift of treatment, leading to a situation in which available drugs are depleted in a short time. In this single-center study, we report the effect of folic acid on mucositis in patients with mRCC treated with continuous therapy.

    folic acidThe primary aim of this study was to evaluate the effect of folic acid on mucositis. A secondary aim was to characterize patient outcome with the current standard of care in patients with mRCC. The study cohort comprised data of 77 mRCC patients, who experienced CTCAE Grade ≥2 mucositis (nasal, oral, pharyngeal, anal, or genital) from systemic therapy, and were treated with folic acid in order to reduce the mucosal toxicity.

    Patients reported an effect of folic acid within days to a few weeks. Patients reached full effect of the folic acid supplementation in 31 days (median). Daily folic acid significantly reduced mucositis, mean CTCAE grade 0.88 (95% confidence interval [CI], 0.74-1.03) versus 2.38 (95% CI, 2.26-2.54; P < .0001).

    Patient outcomes were not deteriorated with the use of folic acid. Median PFS for all patients was 14 months (95% CI, 1-76 months). Median OS for all patients was 31 months (95% CI, 1-114 months), which is equal to or even better than expected for the studied patient cohort.

    The present study represents, to our knowledge, the first documentation of specific therapy to reduce mucositis in mRCC patients receiving continuous therapy. To date, only supportive care to alleviate mucosal irritation has been reported, such as saltwater or sodium bicarbonate oral rinses, sucking ice, use of a soft toothbrush, steroids, and smoking cessation. Moreover, avoidance of hot, sour, salty, acidic, hard, and crunchy food, as well as avoidance of alcohol and agents that contain hydrogen peroxide are encouraged. However, these restrictions are linked with poor daily quality of life for many patients and their families.

    *Please take advice from your mediacal team before acting on any information in this article. 

    To read the full article on UroToday CLICK HERE

  • steve wilson feat image

    From Patient to Marathon Man

    19 Nov 2019

    Well where do I start; at the beginning I suppose would be a good point.

    steve wilsonSo, in May 2018, I went to the doctors as I’d found a lump, which he didn’t seem to bothered about but, to be on the safe side, he decided to send me for an ultrasound. I had it on 17th June 2019, and was told to phone up the next day for the results, I guess that should have set alarm bells ringing. It was Wednesday when I finally managed to telephoned my Doctor, to be told I had a large mass on my kidney and an appointment was made for the next day for me to see the urologist at the local hospital.

    My first question was; “how do I tell my wife?.” It took me until 9:00pm that night to tell her which resulted in neither of us getting much sleep.

    The next day was a bit of a blur until the appointment with the urologist at 3:00pm. We were told that the mass was almost certain to be cancerous and was between 7/8cm. The good news was that it looked like it was contained within the kidney but, I needed an urgent scan. I had the scan on the 29th June (which was actually the day we should have gone on holiday!) and was back for the results the following week. The scan showed an 8cm tumour and the treatment was a full nephrectomy, which was booked for Thursday 9th August.

    Steve Wilson in Hospital

    The operation date came and to be honest, there’s not a great deal I remember about the day, though I’m sure it was a lot harder for my wife.

    I’ve got to admit after I was moved from Intensive Care, the aftercare I received was totally shocking and I was so glad when I finally went home on the Sunday afternoon. I saw the urologist for my results and was basically told they had got it all out and to go off and enjoy my life. My wife asked for the histology report and that really wasn’t the case as it was a T3a (had just started to invade the perirenal fat) so I would be getting 6 monthly scans for the first 2 years and then yearly after that. I won’t bore you with the details of the scans, but needless to say the NHS have let me down and I am now under the excellent care of the Spires Little Aston hospital and have recently had my 2nd scan and at this moment in time, I am all clear. My wife is on the Kidney Cancer UK Facebook page, but at the moment that’s not my thing as we all have our own different ways of coping with things.

    So how and why did I enter the ballot for the charity place allocated to Kidney Cancer UK for the London Marathon in 2020. Honestly, I don’t like running and the only running I’ve done is to support my wife. My daughter entered the ballot and after an evening which contained large amounts of alcohol, I said I would also enter, especially as my wife said I didn’t stand any chance of getting the place! A few days later I entered and gave it no more thought. You can imagine the shock when I was told the place was mine. Straight away hotel rooms were booked, and I’ll have a large crowd of supporters cheering me on my way on the 26th April 2020.

    Steve Wilson 1

    One month before my diagnosis

    For me it isn’t about the running, as I know a lot of people enter the ballot for charity places just to run London. For me it’s all about raising awareness of the charity and also kidney cancer as its very personal to me.

    I’ve just returned from a 2-week holiday so now the training really does start. I’ve joined a local running club (my wife’s over the moon as she’s a member and has been bugging me for ages to join) and am looking forward to training with them.

    I’m not a man of many words or emotions but this is undoubtedly going to be my biggest challenge ever and I will be giving it my all…and more. Everyone asks me “what time I want run it in” but I don’t have a target in mind, I just want to get round and put Kidney Cancer UK on the map and make everyone proud, especially as cases of kidney cancer seem to be on the up so more awareness is needed.

    You can support Steve on his JustGiving page by CLICKING HERE

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