Urological health Campaign 2017

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SEPTEMBER 2017

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Urological Health

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20 MILLION OF US SUFFER FROM INCONTINENCE

Why are we embarrassed by it? P6

Belsize rugby club check their urological health WATCH ONLINE

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Intuitive Surgical proudly supports Urology Awareness Month. We commend the vital work of urological organisations and clinicians who champion quality of life for their patients. PN 1041292 Rev A 9/17


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IN THIS ISSUE

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Is IVF always the answer? Or are we ignoring 50 per cent of the issue?

Will bladder cancer always be ignored? Three experts give their insight.

Professor Allan Pacey argues falling sperm count is the new norm.

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ONLINE EXCLUSIVE

Urological disorders: timely check is vital

Urology may not have a high profile, but many patients suffer from chronic urological conditions, which require timely diagnosis and treatment, according to Professor Chris Chapple of the European Association of Urology.

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eople of various ages suffer from chronic and malignant urological conditions affecting the kidney, prostate, bladder and other vital organs in the urinary tract that significantly impair their quality of life. Not only in Europe but across the globe, the number of complaints directly linked to urological disorders has risen in recent years due to an ageing population, but also better screening tools and improved public awareness on healthy lifestyles has led to an increased diagnosis of urological conditions. Urological diseases range from cancers, urinary tract infections, incontinence, stones, voiding disorders, overactive bladder, erectile dysfunction, ureteral injury, female prolapse and paediatric conditions, to

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name a few. Urologic disorders also occur from early stages in development through the end of life. Fortunately, there are better surgical and medical therapies, for instance, in prostate and kidney cancers compared to 10 or 20 years ago when survival rates were lower. A timely check with a urologist can make a big difference in preventing malignant diseases reach a level of crisis when treatment becomes more difficult and expensive. Initiatives from patient advocate groups are equally important and to complement these programmes, professional medical groups have drawn up long-term activities to promote public awareness. With the internet often serving as an open but unmoderated resource, patients are well-served to consult professionally

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Professor Chris Chapple Consultant Urological Surgeon, Royal Hallamshire Hospital and Secretary General, European Association of Urology

Read more on the EAU’s patientdedicated website patients.uroweb.org

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managed websites where they can find basic but relevant information regarding urological diseases and the corresponding surgical and medical therapies. During this week in September, we aspire to start relevant discussions and share experiences about topics that are often still considered “awkward”. By breaking these taboos, we want to educate women, men, and children to regularly check their bodies for symptoms. Prevention is better than cure. Prevention can save lives. A well-informed patient is central to functioning healthcare, and the readiness of people to seek specialist advice cannot be underestimated. Today, we have more options, but timely actions on health conditions are crucial for healthcare professionals to deliver optimal care.

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INSPIRATION COLUMN

Talk Health Stress Incontinence – Myths Busted Stress incontinence is quite common and often experienced by women over the age of 40, with as many as one in five women over this age having some degree of the condition.

Myth 1 - Small bladders lead to problems Truth: Everyone’s bladder is about the same size (unless you’ve had surgery to reduce the size of your bladder), so size doesn’t come into it. Leakage of urine will be down to muscle weakness, an infection or can even be due to some sort of neurological condition. Myth 2 - If you drink less it will help Truth: Cutting back on fluids can just lead to dehydration. Try drinking more (when you have access to a toilet!) but avoid or reduce caffeine, fizzy drinks, fruit juices, herbal teas and alcohol. Myth 3 - Holding on and not going for a wee can cause continence issues Truth: If you do have incontinence problems, holding on for a wee can in fact train the bladder to work more efficiently! Myth 4 - Pelvic floor exercises only work for women Truth: Pelvic floor exercises are recommended for men and women. They can be done anywhere: standing, squatting sitting or lying down. Myth 5 - You just have to learn to live with stress continence Truth: If the non-surgical treatments available don’t work, there are options to have a surgical procedure.

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The Urology Foundation – leading the fight against urology disease The Urology Foundation 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.

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rological conditions (diseases and cancers of the kidneys, bladder, prostate and male reproductive organs) are becoming more prevalent, and are devastating the lives of millions of men, women and children. One in two Brits will be affected by a urological condition during their lifetime. One of the most common urological conditions is incontinence.

Suffering in silence

Louise de Winter Chief Executive, The Urology Foundation

Research commissioned by The Urology Foundation suggests that one in three Brits and more than 40 per cent of women surveyed had experienced incontinence, with many suffering from embarrassment, depression, relationship problems, debt or financial problems as a result.

Incontinence – the involuntary passing of urine – is a condition on the rise in the UK. It predominantly affects women, although both sexes and all ages can suffer. It costs the NHS £1.8 billion each year.

Nobody likes to talk about their bladder, but when things are wrong, talking to someone with knowledge and understanding is exactly what you need. Here at Bladder Health UK, we have been offering patients help and advice for the past 20 years. Over that time, we have helped thousands of people manage their condition. Confidential Advice Line: 0121-702-0820

www.bladderhealthuk.org


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COLUMN Almost 1 in 3 British adults have had urinary incontinence

2 in 5 women have developed incontinence after giving birth. 30% of these women said their condition has impacted on their mental health, sex life and even their ability to leave their home

People aged 18-24 were most likely to have given up work or suffered career problems due to urinary incontinence

30% of people over 55 felt that a lack of access to public lavatories was their biggest fear in relation to urinary incontinence

Our survey found that 30% of Brits admit embarrassment is what has, or would stop them from, seeking help for a urological condition.

Almost half of people aged 18-24 would be too embarrassed to seek help for a urological condition

The survey suggests there are nearly 20 million people in the UK suffer from the condition yet one in five avoid seeking help from their GP, largely due to embarrassment. The Urology Foundation is raising awareness about incontinence, and all urological conditions, through a national campaign Urology Awareness Month - this September. Anyone experiencing incontinence should see their GP so they can access treatment and regain quality of life. Roland Morley, Trustee of The Urology Foundation and Consultant Urologist at Imperial College Healthcare, said: “Almost half the adult population (between 42 and 46 per cent) will suffer incontinence at some point, and for 25 per cent it will be a chronic problem. But there are treatments available if people seek help.”

Urinary Tract Infection (UTI)

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What is a urinary tract infection (UTI)? A UTI is a bacterial infection of the urinary tract, most commonly the bladder but occasionally the kidneys (also known as, pyelonephritis).

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How common is a UTI? UTIs are common; over 50 per cent of women are likely to suffer at least one UTI during their life. Men may also suffer but less commonly.

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What causes a UTI? The most common cause of UTI is dehydration. Other risk factors are increasing age, being sexually active, diabetes and passing urine infrequently.

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How will I know if I have a UTI? Most UTIs present with symptoms of urinary frequency, urgency and painful urination. In severe cases, patients may pass blood or develop a temperature, loin pain or shivering attacks, (known as rigors).

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How can a UTI be treated? UTIs are treated with pain relief and antibiotics for between three and five days and in more severe cases 7 to 14 days. It is best to increase fluid intake.

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Can a UTI be avoided? The risk of a UTI can be reduced by increasing fluid intake, showering rather than bathing, wiping front to back and passing urine before and after sex.

Source: The Urology Foundation

Louise de Winter, Chief Executive of The Urology Foundation, said: “By raising awareness of incontinence, we can break the stigma and encourage people to seek advice and see their GP.”

Helping to improve lives The Urology Foundation has produced ‘Need to Pee’ cards, which can be discreetly produced in shops and stores to help obtain quick access to a toilet. They are also running the Big 5 Challenge (#TUFBig5) and asking people to help beat the big five urological cancers through fundraising activities. To find out more go to theurologyfoundation.org or call 0207 713 9538

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INSPIRATION

Infertility: Is IVF really always the answer? London-based Urologist, Jonathan Ramsay, argues that treating cases of poor quality sperm instead of going straight to IVF could go a long way to improving infertility outcomes. By Tree Elven

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he UK discovery of in vitro fertilisation (IVF) in the 1970s, led the way for our current system. IVF (also known by the blanket term “Assisted Reproductive Technology” or ART), tends to be the first and only treatment offered to couples in cases of involuntary infertility, says Imperial College Consultant Urologist, Jonathan Ramsay. “The male is seldom considered in his own right”. This is a situation that is finally beginning to change, he says, partly because of more awareness around the issue. There is emerging research evidence that male fertility levels are declining and, whether couples have access to NHS-funded IVF, go private or do a mix, money is increasingly an issue at both individual and national levels. “Couples can be paying between £4,000 and £15,000 per cycle of IVF, with a success rate of about 30 per cent. If we run the entire known battery of male tests it’s not going to be more than £1,500,” says Ramsay. Most of his patients have undergone at least three IVF cycles, but that trend is beginning to change. “Now, couples are beginning to come to a urologist with specialist male fertility knowledge, before undergoing IVF.”

How did the dominance of IVF develop? The technique of intra-cytoplasmic sperm injection (ICSI) was discovered almost by mistake, when somebody injected an egg with a sperm in the early 1990s. It was then realised that men with only a very few sperm could undergo this process of ICSI (clearly a refinement of the IVF process), “and that reinforced the idea that ICSI was the only treatment for such men”, says Ramsay.

Undoubtedly, our colleagues in reproductive gynaecology did a huge service, together with the embryologists, in finding a procedure that allowed many more infertile men to have children, but clearly this process, although sometimes a solution to the problem, was not really a ‘treatment’. “The agenda was set by gynaecologists who suddenly had the answer to infertility and, through nobody’s fault, this just became a selffulfilling prophecy”.

“If you want to prepare for pregnancy, stop smoking, reduce caffeine intake, and lose weight (if you’re overweight) - both of you.” However, this means that IVF, and ART in general, is the only area in medicine “where we do not even attempt a diagnosis of 50 per cent of the issue, which could be the malefactor”, he says. “If we can identify that 50 per cent and manage it with accurate diagnosis, specific treatments and lifestyle changes, then we might reduce the need for IVF and ART. By improving sperm quality, we could improve natural conception rates and also IVF outcomes, which would mean savings to the public purse”.

Poor sperm quality - the usual suspects Factors like smoking, stress, obesity, poor diet, drugs, steroids, infection, over-heated testicles, or abnormal hormones in the male are not taken sufficiently seriously, says

Jonathan Ramsay Consultant Urologist

Ramsay. It is unusual for a man even to have a simple physical examination in the IVF clinic. The message is that if you have poor sperm quality, there is very little you can do – a GP will recognise a low sperm count, and refer the couple for IVF. The female partner is usually reassured that, despite the low sperm count (even when the sperm is a bit ‘dodgy’), the solution is to inject the sperm by the ICSI technique. The man’s role in this is merely to produce specimens, often in difficult circumstances, only to be told that his efforts have only been rewarded with sub-optimal sperm, which may negatively impact the outcome. Jonathan believes that many of the issues affecting sperm quality can be identified and treated with lifestyle changes over a three-month period. “A typical case for us might be a big, heavy-drinking, 32-year-old trader who works in the City and eats on the hoof. Three months of cutting back on the alcohol and improving his lifestyle can double the quality of his sperm, just in those few weeks. I can say this, and I know we can make men better, because we do see a lot of people who are beginning to make their way to urologists before they go to the IVF clinic”. An increasingly common reason

for poor quality sperm are microorganisms, says Ramsay. “These might be bacteria that we have yet to discover, or an undetected but diagnosable infection. These may not be producing any symptoms but they will show up on specialised tests and can usually be improved with a short course of antibiotics”. Other factors can include overheated or undescended testicles. “Over-heated testicles are a common side-effect of modern life, ‘competitive’ commuting on bicycles and tightly fitting sports-wear, but approximately 12 per cent of men do have the equivalent of varicose veins around one of their testicles, which has a heating effect. Undescended testicles may be present in many men with poor sperm counts, and prevalence is increasing. When I started in the profession, it was very rare to see a man with undescended testes because there were regular school medicals”.

Advice for couples? Before rushing into IVF, if you’ve been unable to get pregnant for a couple of years, Ramsay advises couples to be aware of the issues that can affect the male and to approach their GP for a referral to a urologist for basic tests. “Patients need to lobby. It’s been hard to get evidence of male factors, because sperm count varies from one day to the next and because IVF and/or ICSI has become the single treatment for infertility. If you want to prepare for pregnancy, stop smoking, reduce alcohol and caffeine intake, and lose weight (if you’re overweight) - both of you. “And men, stop all this mad spinning on bikes in the gym - your testicles are up inside you, getting too hot for too long,” says Ramsay.


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www.healthawareness.co.uk


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INSPIRATION

Home sperm testing kits: what are they and why would you use one? “Finally, men have tools to help them monitor their fertility potential” reproductive endocrinologist Dr Kenan Omurtag explains the value of home sperm testing kits. By Tree Elven

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ather of three, Dr Omurtag, is fascinated by the fusion between technology and reproduction. He’s particularly impressed with innovations that mean you can test your sperm at home using your mobile phone. “As a reproductive endocrinologist, I must have seen sperm under a microscope thousands of times, but there is still something really neat about seeing it moving on a screen.” Since up to 50 per cent of infertility issues could be due to a male factor, “it’s important that men have accurate, easy-to-understand tools, in the same way that women have ovulation prediction kits,” says Dr Omurtag. Over the past five years, home sperm testing kits have become

Users should bear in mind, though, that “a home kit is a screening and does not replace formal sperm tests, which look at other aspects such as the shape of the sperm, which is very important.”

available, and he says we’re now seeing a second generation of kits, which provide more information as well as a more accurate sperm count.

What can a home test show me? The first generation of home testing kits didn’t include ‘motility’ as a key measure. Now, “newer kits look at the question of motility, telling you whether you have a good concentration of sperm that’s moving - and you need it to be moving forward.” “A total motile count of six million or higher is probably adequate for spontaneous conception,” says Dr Omurtag. “But remember, there may still be other factors involved, such as the female’s fertility, or the sperm’s ability to interact with the egg.

What’s the benefit of testing at home? Dr Kenan Omurtag Assistant Professor, Board Certified Reproductive Endocrinology and Infertility, Washington University School of Medicine, St Louis MO

Read more on healthawareness.co.uk

“Men don’t want to enter the healthcare system unless there is something drastically wrong; it’s much more routine for women. Now, home testing kits have finally given men the tools to help monitor their fertility potential.” Men going for a lab test may be stressed thinking, ‘Am I going to be masturbating in a cupboard?’ “It’s easier for men who are reluctant to, or simply cannot, get to the lab for testing, and reduces the


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COLUMN

Why testicles should be kept cool

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anxiety that can be associated with trying to get pregnant - there can be a ‘manliness’ factor, which causes stress”, but with a home kit, you’re taking action in your own time and at your own convenience in the security of your own home; it’s empowering. Time-saving is another big plus: in the worst case, explains Dr Omurtag, a couple might spend three years trying for a baby only to find, at that point, that there’s a male factor hitch, and they’ve lost that time rather than getting into appropriate treatment.

I’m young, in good health and not looking to start a family – do I still need to take a test? “Sperm motility and shape both decline with age, so an older man

in a new relationship with a younger partner may want to run a check if pregnancy is the goal. Though many people using the kits will be keen to get pregnant, there are also more general implications for men’s health”, says Dr Omurtag. “The information can be helpful if you do not want pregnancy, or have erectile dysfunction or low libido”. “Men taking testosterone - for example, to treat male pattern baldness – may be interested to do a test as testosterone can lower your sperm count. Cancer patients banking sperm before undergoing chemotherapy may also find the tests helpful further down the line. If the test shows little to no sperm, I’d advise seeing a urologist to check there are no lesions or other issues.”

Male infertility affects approximately one in seven couples and 40 to 50 per cent of cases are thought to be due to male factors alone. One of the possible causes of male factor infertility is that of heat damage to the testicles, which can occur due to a variety of reasons. There are a number of causes of heat damage to the testes, such as undescended testis. The longer the testicles are left undescended, the worse the effects on fertility. It is thought that the heat damage of the testicle being within the abdomen results in impaired sperm production. Exposure of the testis to heat, for example using a sauna, has been shown cause problems in sperm production but is reversible. Equally, hot baths may also reduce fertility potential. Using a laptop in close proximity to the genital area, for example in the seated position, may result in increased scrotal temperatures of up to 2.1°C. Cycling has also been argued to increase the temperature in the sitting position, but the evidence for cycling impairing sperm production is limited. Men in certain occupations, such as welders or bakers who are exposed to increased heat stress, may also have fertility issues. Perhaps one of the most common causes of heat damage associated with fertility problems and sperm production are varicoceles or varicose veins of the testicles. Fixing varicoceles may improve the sperm quality and quantity. It can also reduce the damage to the sperm DNA, possibly improving outcomes from natural pregnancy and assisted reproductive technology such as IVF/ICSI. It is very important to examine all men who have fertility issues or abnormal sperm tests so that these problems can be dealt with and excluded. While more robust studies are needed to assess the role of heat damage to the testis, there is enough evidence to suggest that excessive heat should be avoided to prevent damage to the testicles. Read more on healthawareness.co.uk


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PANEL OF EXPERTS

Will bladder cancer always be one of the most common cancers? Three experts share their thoughts on the future of bladder cancer research; what it means and why it matters

Let’s talk about bladder cancer Why is such a common cancer ignored?

B Julia Taylor Consultant Nurse Urology , President British Association of Urological Nurses

ladder cancer is a forgotten or little-known-about cancer, even with intermittent campaigns like ‘blood in your pee’, launched to raise public awareness. Add to that the persistent confusion that can occur at the primary care level of bladder cancer symptoms, – such as those of urinary tract infections – diagnosis is an especially urgent issue for women, among whom survival outcomes are significantly worse. Disappointingly, the National Cancer Patient Experience Survey (NCPES) – designed to monitor national progress on cancer care – currently does not even capture detailed specific experiences of bladder cancer patients.

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Alison Birtle Consultant Clinical Oncologist and Honorary Senior Lecturer, Co Chair NIHR Bladder/renal cancer clinical study group. MRCP FRCR MD

ladder cancer is the fourth most common cancer in men in the UK, but because symptoms can be similar to a urinary infection (i.e. blood in urine or needing to go to the toilet often) symptoms can get overlooked, especially because patients can be embarrassed. If we could diagnose earlier, patients would stand a much better chance. Blood in the urine should be reported to a GP. Bladder cancer survival has not improved over 20 years due to delay in diagnosis, lack of public awareness of bladder cancer and comparatively little publicity or research funding than some other cancers.

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James Catto Professor of Urological Surgery, University of Sheffield and Editor in Chief of European Urology

everal reasons. Firstly, there is a lack of public figures as advocates. A celebrity ambassador is very important in raising awareness of the disease and the need for research funding. Secondly, typical patients are men in their 70s who having worked in heavy industry or driving. These patients are fantastic to care for but often do not engage in social media or in lobbying. Finally, some treatments involve bladder removal and creating a urinary stoma. This can be socially embarrassing and so many patients prefer to keep quiet about their disease.

What can be done to support bladder cancer patients?

How can we build a future without bladder cancer?

The NCPES in England and national cancer nursing census demonstrates that patients with cancer, who have access to a clinical nurse specialist (CNS), report better experiences and better understanding of the disease. However, access to bladder specific CNSs is less commonplace for patients with very rare cancers. There is an urgent need to undertake a workforce study and develop greater numbers of CNSs trained to specialise in bladder cancer. There is also urgent need to separately report on the specific perspectives of bladder cancer patients in order to measure their experiences.

Significant investment is needed to develop new, prolonged and sustained public awareness campaigns to, firstly, enable earlier diagnosis and secondly, to facilitate bladder cancer research to increase effective treatment options, reducing variation and improve consistent practice. Finally, increased availability of CNSs (as part of multidisciplinary teams) should be coupled with development of inter-professional learning for specialist training in bladder cancer. This will ensure signposting to high-quality information, support and education while highlighting patients’ non-medical needs to ensure that ‘no decision about me without me’ becomes a reality.

We need much better access to information. The online support group, Fight Bladder Cancer Support, is a fantastic resource for patients and their carer/relative/family. However, we need all UK urology clinics to highlight its existence. Support groups, called ‘Fight Clubs’ exist in several hospitals, but what is really needed is more bladder cancer specific urology nurses. Currently, many urology nurses are also stretched across prostate, kidney and testicular cancer care.

Bladder cancer research is under-resourced, with less than one per cent of research funding in the UK going towards bladder cancer trials. Patient participation in well-designed trials of chemotherapy, surgery, radiotherapy and immunotherapy can provide much needed insight to the development and causes of bladder cancer. Only though research to find improvements in survival and reductions in side effects of treatment can we move forward. Smoking is associated with bladder cancer even more than with lung cancer, so reducing the number of people who smoke will reduce the incidence.

The two main charities, ‘Fight Bladder Cancer’ and ‘Action on Bladder Cancer’, are creating support networks and online resources. Better support is key. Many patients with bladder cancer can be cured and enjoy an excellent quality of life; diagnosis should not be feared. Secondly, better awareness of symptoms (commonly, blood in the urine or urine infections that keep coming back and don’t settle with antibiotics) is imperative. I see many patients who have delayed seeing their GP as they were scared of the symptoms or did not understand their importance.

I think that we need more funding into bladder cancer care to develop better tests and treatments for the disease. Recent advances are offering new hope, but the last major breakthrough was many years ago. The main funding bodies (such as Cancer Research UK) spend relatively little on bladder cancer when compared to rarer cancers. This would change if public opinion highlighted the importance of the cancer. Finally, I think there be could be better working between patients and clinicians, and between clinicians themselves.


“I FELT SO ALONE WITH MY CANCER THAT I FELT LIKE GIVING UP … BUT FINDING FIGHT BLADDER CANCER WAS MY LIFELINE, THEY HAVE BEEN THERE FOR ME AT EVERY STEP.” DARREN ROBERTS AGED 50 (image left)

HERE TO MAKE A DIFFERENCE Many people with bladder cancer are alone, isolated and afraid. You can help them today by supporting Fight Bladder Cancer to build a community that helps patients and carers fight this disease together. Do you know someone affected by bladder cancer? Your support can make all the difference. To donate or volunteer, please follow the link below. If you are a health care professional, make sure you signpost your patients to us so that we can work with you to help support your patients.

In 2017 alone, we expect a further 10,000 people in the UK to receive a bladder cancer diagnosis. There is much to be done and we urgently need your help.

www.fightbladdercancer.co.uk/Get-Involved or call 01844 351621

bladder

CANCER Registered charity number 1157763

Fight Bladder Cancer has received financial contributions from the above sponsors in support of this advertisement.


Urology Awareness Month Where Can I Find Out More? Some may have heard of prostate cancer and the signs and symptoms. However, fewer may know about kidney, bladder, penile and testicular cancers. To gain more information about urological cancers visit the websites of the charities listed below.

Charities:

The Urology Foundation

The Urological Cancer Charity

Fight Bladder Cancer

Leading the fight against urology disease theurologyfoundation.org

Working to make life better for everyone affected by urological cancer ucanaberdeen.com

Awareness I Support I Research I Change fightbladdercancer.co.uk/ Get-Involved

Action Bladder Cancer UK

Kidney Cancer UK

Kidney Cancer Support Network

Raising awareness, supporting patients, improving early diagnosis and supporting research actionbladdercanceruk.org

Here to listen, inform and support kcuk.org.uk

Empowering patients and carers through advocacy, information and peer support kcsn.org.uk

Orchid

Prostate Scotland

Orchid exists to save men’s lives from testicular, prostate and penile cancers. orchid-cancer.org.uk

Prostate Scotland – informing, supporting and advancing on prostate disease in Scotland prostatescotland.org.uk

Sponsored by Intuitive Surgical, who proudly support Urology Awareness Month. We commend the vital work of urological organisations and clinicians who champion quality of life for their patients.


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