Some may have heard of prostate cancer and the signs and symptoms. However, fewer may know about kidney, bladder, penile and testicular cancers.
UK statistics show that every 2 minutes, someone is diagnosed with cancer. However, early diagnosis can improve prognosis, so it is key that we all watch out for the signs and symptoms.
During this September, Urology Awareness Month, take an opportunity to learn about urological cancers and for patients already diagnosed with cancer-where to seek support and further information.
Here are some charities for urological cancers including bladder, kidney, prostate, penile and testicular cancer.
General Urology
1. The Urology Foundation
The Urology Foundation (TUF) is a UK-wide charity committed to improving the lives of patients with urological conditions by funding critical research, training and education of urology professionals.
One in two Brits will be affected by a urological condition during their lifetime.
Diseases and cancers of the kidneys, bladder, prostate and male reproductive organs are becoming more prevalent and devastating the lives of thousands of men, women and children.
TUF is committed to finding better treatments and cures and has invested millions in urology research programmes as well as providing professional training grants and bespoke education courses. Recently TUF-funded scholars were involved with the UK’s first robotic kidney transplants.
This September TUF is running Urology Awareness Month, a campaign dedicated to increasing knowledge and awareness about urological conditions and focusing on prevention, treatment and management.
Research by the charity suggests a quarter of UK residents would not seek medical advice for a urological condition because of embarrassment and that 20 per cent of people who are suffering from, or know someone suffering from, a urological condition, feel ashamed.
Urology Awareness Month is targeted at ending the taboo and silence surrounding urology conditions and urging men and women to see their GP.
The Urology Foundation has produced ‘Need to Pee’ cards to help people gain quick access to a toilet and is running the Big 5 challenge (#TUFBig5) and asking people to help beat the big five urological cancers through fundraising activities.
TUF receives no government or NHS funding.
- Website: www.theurologyfoundation.org
2. The Urological Cancer Charity
UCAN is a cancer charity based in the North East of Scotland established in 2005. Since that time it has helped to deliver world class cancer care to people in the North East of Scotland with urological cancers (prostate, bladder, kidney and testis).
A major success has been the opening of the UCAN Care Centre that has seen almost 19,000 drop in visitors since opening in January 2008. The centre was the first of its kind in Scotland also hosts the peer to peer buddy mentoring service that UCAN established .
UCAN has funded the development of nurse specialists and a drop in centre that provides support and information to patients and their families and was responsible for bringing the first robotic surgical system to Scotland.
UCAN has also funded major ongoing research into urological cancers particularly around information giving to patients, increasing patient involvement and establishing the cancer outcomes that are most important to patients.
UCAN continues to raise funds and awareness about urological cancers across the North East of Scotland and plans to expand this successful service even further afield in the near future.
- Website: www.ucanaberdeen.com
Bladder Cancer
3. Action Bladder Cancer UK
Bladder cancer is not rare. It’s the 7th most common cancer in the UK – the 4th most common in men. Over 10,500 people in the UK are diagnosed each year – half of these will die.
It has the highest recurrence rate of any known cancer but few available treatments, low public awareness and a need for better understanding by health professionals.
ABC UK is often told by bladder cancer patients they feel overlooked and question why such a serious and common condition is so neglected. They tell us it’s difficult to get information about their condition and, sometimes, to access best treatment or services. They are shocked by the lack of treatment choices and support available to them and their families.
Bladder cancer is common, expensive to treat, shows little improvement in outcomes, has a poor patient experience level with significant challenges for both patients and health professionals – a forgotten or ‘Cinderella’ cancer. If bladder cancer was given the investment and attention demanded by incidence, improvements in outcomes could match that of other cancers. These facts drive our work at Action Bladder Cancer UK.
We work to turn the spotlight on bladder cancer – it needs to be recognised as a common cancer, and receive the acknowledgement, public awareness, improvements in treatments and research investment which it merits – and which those with bladder cancer deserve.
Current priorities:
- Patient information & support & new patient support groups
- Research: the 2nd ABCUK Improving Outcomes for Patients Programme 2018 grants round launches soon
- Improving early diagnosis by working with GPs
- Resources to help patients access services and information
- Website: www.actionbladdercanceruk.org
4. Fight Bladder Cancer
UK-based bladder cancer charity founded and run by bladder cancer patients and their loved ones, we support ALL those affected by bladder cancer, with the support of many of the UK’s top urologists, oncologists and specialist nurses.
As well as support services, we work to raise awareness, support medical research and campaign to affect policy at the highest levels, all to bring about change in bladder cancer treatment. Our aim is to achieve better outcomes and quality of life for all those affected.
Our website, www.fightbladdercancer.co.uk, is the gateway to all our services, whether you are a patient, carer or friend of someone diagnosed with bladder cancer, a clinician looking for the best place to signpost your patients, a researcher looking to communicate with the bladder cancer community, or someone who wants to join us in our campaigning.
Fight Bladder Cancer is making a real difference. Get in touch for information, support and to get involved.
Kidney Cancer
6. Kidney Cancer UK
Kidney Cancer UK and sister charity Kidney Cancer Scotland are the UK’s leading specialist kidney cancer charity.
We seek to reduce the harm caused by kidney cancer by increasing knowledge and awareness, providing patient information and by supporting research into the causes, prevention and treatment of the disease.
Typical signs and symptoms of kidney cancer are:
- Blood in the urine, also called haematuria
- Persistent low back pain or pain in the side between the ribs and hipbone
- A lump or mass in the area of the kidneys
- Abnormal red blood cell counts
- High blood pressure or hypertension
- Thickening of the blood (polycythaemia)
- Tiredness
- Weight loss and/or loss of appetite
- Running a persistent temperature and sweating heavily, especially at night
We depend primarily on voluntary donations and have published a definitive guide to understanding kidney cancer, set up a closed Facebook Patient Support Group and free to call Kidney Cancer Careline (0800 -002-9002). We have provided an online renal nurse training to help raise understanding of kidney cancer to the medical profession, funded research programmes and campaigned for access to life extending drugs for NHS kidney cancer patients across the UK.
We also run a series of patients led events across the UK every year including Walk for a Cure (October), a number of Kidney Cancer Information Days through October/ November and Kidney Cancer Awareness Week culminating in Green Friday (3rd-9th February 2018), along with highlighting Urology Awareness.
- Website: www.kcuk.org.uk
5. Kidney Cancer Support Network
Kidney Cancer Support Network (KCSN) is the UK’s largest and most active patient-led kidney cancer charity offering a very special type of patient support to people across the UK whose lives have been affected by kidney cancer.
Whether you are a kidney cancer patient, carer or relative of someone who has kidney cancer, the KCSN offers a caring and knowledgeable community of people who, because we are cancer patients ourselves, truly understand your feelings. We have been providing information and guidance to support patients through their kidney cancer journey since 2006.
We know that kidney cancer patients hold a treasure chest of information about how they cope with kidney cancer on a day to day basis; we encourage everyone who is part of KCSN to share their practical knowledge to help and inform other patients and the hospital teams who look after them. Many hundreds of patients & carers share their personal experiences within our confidential Facebook Group 24 hrs a day, responding to questions and offering emotional support, insights and information to their fellow patients and making sure no-one ever feels they have to face kidney cancer alone.
At KCSN we also have an experienced team of expert patients and patient advocates. Our guiding principle has always been the empowerment of patients to become active participants in their own healthcare through informed shared decision-making. We work collaboratively with the NHS, Regulatory Authorities, research establishments, clinicians, other patient groups and industry to provide a strong patient voice on behalf of the UK kidney cancer community advocating for improvements in access to treatments, patient centred care and improved outcomes for all kidney cancer patients.
- Website: www.kcsn.org.uk
Prostate, Penile and Testicular Cancers
7. Orchid-Fighting Male Cancer
Orchid is the UK’s leading charity working on behalf of anyone affected by or interested in male cancer – prostate, testicular and penile cancer.
Orchid exists to save men’s lives from male cancer through a range of support services, education and awareness campaigns and a pioneering research programme.
Every year over 50,000 men in the UK will be diagnosed with prostate, testicular and penile cancer.
Testicular cancer most commonly affects men between the ages of 15-45. If caught early enough it has a cure rate of over 98%. Orchid campaign to raise awareness of testicular self-examination and have developed a professional school’s education pack and deliver outreach events all over the country.
Penile cancer is rare but incidence has increased by 25% since the late 1970s. It is most often diagnosed in men over 60 however younger men can also be affected. Orchid is developing an e-learning tool, for healthcare professionals to use, helping to aid earlier diagnosis.
Prostate cancer most commonly affects men over the age of 50. Incidence is much greater for men of African-Caribbean descent so Orchid has partnered with Cancer Black Care to deliver a three-year Big Lottery Funded project to deliver specialist community outreach events, tailored information and advice guides, specific support groups and specialist nurse advice.
To find out more: Those who have concerns relating to male cancers can seek specialist advice and support from a team of male cancer information nurse specialists on freephone 0808 802 0010
- Website: www.orchid-cancer.org
8. Prostate Scotland
Prostate disease and cancer are unfortunately more prevalent than many people may realise.
Nearly one in two men in Scotland is likely to get prostate disease at some stage in their lives, and one in ten may develop prostate cancer – which is the most common cancer in men in Scotland.
Prostate Scotland is Scotland’s prostate disease charity (charity no: SC037494). Our activities include:
- Providing men and their families in Scotland with information and support about prostate cancer and disease;
- Holding events and developing awareness materials about prostate cancer and disease;
- Promoting research and treatment developments on prostate issues across Scotland.
We have developed:
- An award-winning website providing information for men and their families in Scotland about the range of prostate diseases including prostate cancer;
- An award-winning range of information booklets and guides about prostate cancer and disease and their treatments;
- A successful fundraising appeal to help bring about the introduction of robot assisted surgery programmes for prostate cancer in the east and west of Scotland;
- An awareness and a workplace initiative across Scotland
With prostate cancer in Scotland projected to increase over the next ten years we are working hard to inform, support and advance care on prostate cancer and disease in Scotland.
- Website: www.prostatescotland.org.uk
