On this page you will find some useful links to various websites containing a wealth of reliable information about kidney cancer and clinical trials. There are also links to other patient support groups, and organisations providing help and advice on legal, social welfare, and benefits for cancer patients.
If you come across any websites that you feel would be useful to have on this page and that would benefit other patients or their families, please feedback to us by email.
Information about kidney cancer
NHS Choices is the official website of the NHS in England, and the UK’s biggest health website providing an award winning, comprehensive health information service with thousands of articles, videos and tools. Information about kidney cancer can be found here.
Cancer Research UK is the world’s leading charity dedicated to beating cancer through research. The About Cancer section contains a wealth of information about lots of different types of cancer. Information about kidney cancer can be found here. Cancer Research UK also publishes a regular Cancer Statistics Newsletter, with a wealth of information about the incidence and risks of various types of cancer in the UK. Click here to take you to the page where you can sign up to receive this newsletter.
Macmillan Cancer Support provides a support service for cancer patients, with advice about money worries and getting back to work, and information about various cancers. Information about kidney cancer can be found here. Download a pdf of the latest Macmillan Understanding Kidney Cancer booklet here.
Kidney Cancer UK (previously James Whale Fund for Kidney Cancer) has some comprehensive information about kidney cancer on the website and provide a free Understanding Kidney Cancer booklet to patients upon request. Please click here to visit their website.
Urological Cancer Hub provides data and intelligence on urological cancers in England. It is aimed at a wide range of professionals working in the field, including NHS providers, commissioners, Cancer Networks, charities, urologists and other clinicians. It also provides information and links for patients and the general public who wish to understand more about urological cancers, including information about incidence and mortality, and past and current trends. Visit their website here.
Diet, Nutrition, Physical Activity and Kidney Cancer is a Continuous Update Project from the World Cancer Research Fund International, a not-for-profit organisation that leads and unifies a network of cancer charities with a global reach, dedicated to the prevention of cancer through diet, weight and physical activity. Read Diet, Nutrition, Physical Activity and Kidney Cancer here.
Genomics England is running the 100,000 Genome Project in 13 NHS Genomic Medicine Centres throughout England. The project is being run in collaboration with initiatives in Scotland, Wales and Northern Ireland, and the National Institute for Health Research (NIHR) BioResource BRIDGE studies. The project aims to sequence 100,000 genomes from patients with rare diseases and cancer, with the view to building a unique research database, which in turn will lead to better outcomes for patients. Read more about the 100,000 Genome Project on the Genomics England website.
European Association of Urology (EAU) provides a website especially for patients. The main purpose of this website is to provide reliable urology information, which is unbiased, comprehensive, and clear. All the materials published take into account existing scientific evidence, the experience of medical experts and nurse practitioners, as well as the views of patients. The EAU is an independent non-profit organisation, which works to advance the level of urological care in Europe. Please click here to visit their website. They also produce some useful kidney cancer leaflets, which can be accessed by clicking here.
10forIO website is a project of the International Kidney Cancer Coalition (ikcc.org). The purpose of this website is to provide a central resource for patient organisations to access information about immune-oncology (referred to as IO), specifically as it applies to renal cell carcinoma. Visit their website by clicking here.
NIH National Cancer Institute is an American organisation that publishes a fact sheet with some useful, clearly explained information about biological therapies for cancer, in particular immunotherapy. Visit their site here.
National Comprehensive Cancer Network (NCCN) is a not-for-profit alliance of 27 of the world’s leading cancer centres dedicated to improving the quality, efficiency, and effectiveness of care for patients with cancer. NCCN develops resources that present valuable information to patients and caregivers, as well as to clinicians and health care professionals. They have recently published guidelines for kidney cancer patients, which are easy-to-understand resources based on the same clinical practice guidelines used by health care professionals around the world to determine the best way to treat a patient with kidney cancer. Visit their website and download a copy of the guide here.
FutureLearn offers free online courses covering a variety of subjects, from The Science of Medicines to International Franchise Law. Courses last from 2 to 8 weeks, and learners are provided with a certificate when they complete the course. FutureLearn is owned by The Open University, and each course is accredited by a world-leading academic institution. Take a look at the variety of courses on offer here.
Genetics of kidney cancer The YouTube video below is a presentation by Dr Fuki Marie Hisama, M.D., from the University of Washington, who gave this presentation at the Kidney Cancer Association Patient and Survivor Conference in Northern California, July 2016. Dr Hisama is a Medical Geneticist. In this presentation she talks about:
- What is medical genetics?
- When should a kidney cancer patient see a genetics provider?
- What are the hereditary causes of kidney cancer?
- Direct to consumer genetic testing.
Practice Update – VHL Overview This video, produced by Practice Update, is a comprehensive overview of Von Hippel-Lindau (VHL) syndrome from Dr Eric Jonasch from the MD Anderson Cancer Centre in Houston, Texas. Watch the video here.
ESMO Patient Guide on Cancer Pain Management The European Society for Medical Oncology (ESMO) have produced a useful patient guide for the management of cancer pain. Pain can be due to the cancer itself, cancer treatment, or a combination of both. This patient guide discusses the many ways to manage different types of cancer-related pain. The pain relief offered depends upon the type and severity of the pain, as well as the patient’s general health and level of fitness. Patients should be fully informed and involved in decisions about treatment options. Download the guide from the ESMO website here.
ecancerpatient toolkit on Biosimilar Medicines Gives patients a complete overview of biosimilars and helps them separate fact from fiction. Earlier this year both the European Medicines Agency and the US Food and Drug Administration (FDA) approved the first bevacizumab biosimilar, Zirabev, which can be used for the treatment of kidney cancer. View the patient toolkit on the ecancerpatient website here.
ecancerpatient Life After Cancer videos A whole series of useful resources to help patients navigate their journey through treatment and beyond. View the videos on the ecancerpatient website here.
Decision aid resources for people with kidney cancer
1. Kidney Cancer Basics – an introduction to kidney cancer and a kidney cancer dictionary
2. My treatment My Choice – a decision aid for people with small renal masses
3. My treatment My Choice – a decision aid for patients with metastatic kidney cancer
The principle that patients should be involved in all the decisions about their own healthcare has been talked about for many years. We call this principle “shared decision making”.
Shared decision making is a process which ensures patients are supported to make decisions about their care and treatment which are right for them. It is a collaborative process and it starts with a conversation between the patient who is receiving care and the healthcare professional delivering the care. The conversation develops into a process in which they work in partnership to make the best possible decisions; bringing together the clinician’s expertise, treatment options, evidence, risks and benefits, and the patient’s individual preferences, personal circumstances, goals, values and beliefs.
One of KCSN’s core beliefs is that patients and their families have an essential role to play in healthcare decisions that affect their lives. Together with the International Kidney Cancer Coalition (IKCC), we have written a series of shared decision aids for people with kidney cancer, their caregivers and families. The booklets are written by a team of patients, patient advocates and medical professionals who between them have supported thousands of kidney cancer patients worldwide.
We hope you will find theses booklets helpful as you and your healthcare team navigate the decisions that lay ahead of you. To download or to print out a pdf copy of an IKCC shared decision making booklet, please click the the title above. The booklets are available in A5 format. If you wish to print on A4 pages, please use the layout option “2 pages per sheet” in the print options of your printer.
Please do get in touch with us if you have any comments and would like to share your experience of using the booklet. You can email us at firstname.lastname@example.org.
Paul Popham Fund, Renal Support Wales aims to improve the quality of life of renal patients in Wales. The Fund has been inspired by Paul Popham’s unrelenting optimism in the face of renal disease to raise funds and work with renal units/centres to develop initiatives and purchase items that help to improve the health, wellbeing and welfare of renal patients. Read more here.
Renal Cancer Research Scotland raises funds to invest in renal cancer research projects through various Green Ribbon Events. Funds have been used to help buy a cryotherapy machine for Gartnaval Hospital in Glasgow, provide financial support to the Cancer Research Team at Edinburgh University for the investigation of a potential treatment for renal cancer, and to the Kidney Cancer Support Network for the development of a clinical trials database. Find out about the work of the Renal Cancer Research Fund here.
International Kidney Cancer Coalition (IKCC) is an independent and democratic network of patient support and advocacy organisations established with the mission of improving the quality of life of patients and their families living with kidney cancer. IKCC provides information, support and assistance to national kidney cancer organisations. All organisations are welcome to participate. Read more about the IKCC here.
Smart Patients is an online community where patients and their families learn from each other. It is a worldwide community, but dominated by the Americans. Join the Smart Patients community here.
cancercaremap.org is an online directory that helps people find cancer care and support services in their local area. People with cancer, their friends and family can either search for a service or can browse the types of services available. It uses stories and videos to show how the services have benefited other people living with cancer and sign-posts services across the country whether they are charity funded, community based or NHS led. Click here to visit the cancercare.org website.
Samaritans provides confidential support to people in distress and offer a safe place to turn. They support anyone who needs them through their branches and via the telephone, at any time of day, every day of the year. They talk about difficult issues, and are not judgmental. Click here to find out more.
Bereavement Care understands the confusion and distress that can surround people when a loved one dies. They offer clear, concise information to make a stressful time more bearable. Find out more here.
Counselling Directory is a confidential service that encourages those in need to seek help. People can visit the website, enter their postcode and find a qualified counsellor or psychotherapist nearby who specialises in the area of need, such as bereavement, depression, stress, carer support and cancer. All counsellors are members of a relevant professional body. This site also serves as an information hub for people to read mental health-related articles and news, as well as to find local events. Visit Counselling Directory here.
Kidney Cancer Canada have published a list of useful questions to ask your doctor before you have surgery for kidney cancer, and questions to ask as you learn more about kidney cancer. Visit their website here.
Dog Owner has a very interesting blog on their website titled ‘How dogs can help with mental health – Mind boosting benefits of dog ownership’. This guide informs readers of the incredible benefits of owning a dog. Read the blog here.
Living Well UK are offering free talking therapies for people within the Birmingham and Solihull Clinical Commissioning Group (CCG) locality. Patients need to be referred by their GP for this service. Living Well offers qualified practitioners who offer talking therapy to support patients who are suffering anxiety and or depression as a result of their long term condition. Visit their website here.
The International Kidney Cancer Coalition (IKCC) has developed a guide to help people make decisions about their healthcare. This decision aid has been written for people diagnosed with a type of kidney cancer called metastatic renal cell carcinoma (RCC); cancer that has spread from where it started, or recurrent RCC; cancer that has come back after treatment.
There are different types of treatment for people who have metastatic or recurrent RCC. You will probably have many appointments with your healthcare team and receive a lot of information about your treatment options.
You will be faced with new challenges, concerns and questions, and you will need to make some personal decisions about your treatment and living with this condition.
This decision aid aims to help guide you through your conversations with your healthcare team. It is also a tool to help you make treatment choices that will deliver the best quality of life for you according to your personal goals.
- Information about the treatment options available
- Details about the possible benefits and risks of each option
- Advice on how to make a decision that will best suit your values and goals
- Questions you may want to ask your healthcare team
- A list of resources where you can find further information.
Having metastatic or recurrent RCC can be overwhelming. However, learning about the disease and treatment options can empower you to become an advocate in your own treatment and care. You are the most important and powerful person involved in your own healthcare. Only you understand the impact of choices on your life.
Download version 2 of the decision aid here: My Treatment, My Choice Version 2 April 2018
NIHR Clinical Research Network (CRN) provides an infrastructure that allows high-quality clinical research to take place in the NHS, so that patients can benefit from new and better treatments. There is a web page dedicated to help for patients, carers and the public, with a lot of information about clinical research. Visit the CRN website here.
National Cancer Research Institute (NCRI) is a partnership of UK cancer research funders, which provide financial support for clinical trials coordinated through the NCRI Clinical Studies Groups (CSG). Visit the NCRI website here and the NCRI Clinical Studies Groups website here.
Information about the kidneys and urinary tract
Pacific Medical Training produce patient-friendly information about the structure and function of the kidney and the urinary tract, including common disorders of the urinary tract, and how to maintain a healthy urinary system. Visit The Urinary Excretory System page on their website here.
Beat Kidney Stones promotes and protects the health of sufferers of kidney stones through the provision of financial assistance, support, education and practical advice and to advance knowledge in all areas relating to kidney stones by funding research into kidney stones. Visit the Beat Kidney Stones website here.
Legal and social welfare advice
Citizens Advice offers advice on various social welfare and legal issues, such as benefits, money and debt management, pensions, housing, consumer, relationships, tax, healthcare and discrimination. Links to Citizens Advice websites in England, Scotland, Wales and Northern Ireland can be accessed from the main site here.
AdviceUK is an independent legal and social welfare advice network, providing free advice on benefits, housing, money and debt management, legal issues, disabilities and medical, immigration and drugs and alcohol. See more here.
Department for Work and Pensions (DWP) provides information about employment, benefits and state pensions. Visit their website here.
BenefitsGuide.co.uk is a free to use resource which provides clear and comprehensive information on all available UK welfare benefits, as well as guidance on benefit applications, appeals, emergency assistance and legal help. Visit their website here.
UK Benefits Guide is a comprehensive and easy to understand guide to benefits in the UK. Read the latest version of the guide here.
Turn2us is a national charity that helps people in financial hardship gain access to welfare benefits, charitable grants and support services. Visit their website here.
Disability Action Alliance is a cross sector network of organisations committed to making a difference to the lives of disabled people. See more here.
Motability provides advice and help with car, scooter and powered wheelchairs for disabled people. Visit their site here.
Healthcare and prescription costs
NHS Prescription Services provides the NHS with a range of drug, financial and prescribing information. Read more here.
NHS Specialist Pharmacy Service (SPS) is an NHS website providing professional medicines advice and services to pharmacists, GPs and clinicians to improve the use of medicines to help people live longer, fuller lives. The SPS supports medicines optimisation across the NHS. Key areas of interest to the SPS are high-cost, complex and innovative medicines and medicines-related services. Visit their website here.