Don’t Go Red, Go to a Doctor: We must break the stigma around ‘embarrassing’ bladder cancer symptoms to save lives!
May 2022
Bladder Cancer Awareness month is in May. This year, UK charity ‘Fight Bladder Cancer’ aims to break the stigma around symptoms deemed ‘embarrassing’ by patients to promote early diagnosis and save lives.
Common symptoms include the discovery of blood in the urine and the fact that this happens in intimate areas of the body, meaning that patients are often too embarrassed to talk about symptoms or seek a professional opinion.
21,181 people are diagnosed with invasive and non-invasive bladder cancer in the UK every year. (www.cancerdata.nhs.uk/getdataout/bladder). Bladder cancer is the 5th most common cancer in the western world. For men, it is the 4th most common.
Bladder cancer currently receives just 1% of cancer research funding in the UK despite the high number of people diagnosed.
A timely diagnosis offers a significant increase in the chance of long-term survival and quality of life.
Often deemed the ‘forgotten cancer,’ it is likely that the lack of awareness of how common the disease is, is part of the reason so many people feel embarrassed to talk about their symptoms and experiences.
We want to spark conversations that drive awareness around the disease during bladder cancer month by homing in on these symptoms and their problems. It is essential that people do not feel embarrassed to speak about them. Dialogue around bladder cancer and the issues that come with it will make a world of difference!
The main symptoms are blood in the urine, a reoccurring UTI which does not clear up, frequent urination or pain when urinating and abdominal lower back and pelvic pain.
Globally every year, over 570,000 people are diagnosed with bladder cancer, and 1.7m people find themselves living with the condition. It is the 10th most diagnosed cancer and the 13th cause of death from cancer globally.
By ensuring early diagnosis and seeking medical advice and care, the survival rate for bladder cancer can be up to 90%.
It is vital that people know bladder cancer symptoms and gets to their GP as soon as they appear. Early diagnosis is critical.
Fight Bladder Cancer is raising awareness this May to raise urgent awareness and funds, so we can continue to support and make a difference for people affected by bladder cancer.
Fight Bladder Cancer will soon be registering with the Office of the Scottish Charity Regulator.
About the ‘don’t go red, go to a doctor’ Global Campaign from the World Bladder Cancer Patient Coalition for Bladder Cancer Awareness Month 2022:
-‘Don’t Go Red. Go to a Doctor’ aims to raise awareness of bladder cancer – the 10th most common form of cancer in the world.
-One of the main barriers to diagnosis is mistaking symptoms of bladder cancer for non-threatening urinary conditions
-If diagnosed early, bladder cancer can have a 90 per cent survival rate[i]
-Around half of the patients hear about bladder cancer for the very first time at diagnosis[ii]
-The campaign encourages people to overcome their embarrassment and go to a doctor should they experience any symptoms
Useful Case Studies:
Danielle Marr, Scottish bladder cancer patient & Fight Bladder Cancer Trustee:
Danielle was 25 years old and half-way through her pregnancy when she became concerned by recurrent urinary tract infections and abdominal pain. “I had been prescribed several courses of antibiotics by my GP, but still my symptoms did not improve. I asked her if there was a chance that something more sinister could be going on, but I was told I was too young for bladder cancer and that some pregnant women are just unlucky.”
“The ‘don’t go red, go to a doctor’ campaign, for me, is also about not being embarrassed to ask for further investigation if you feel that something is not right with your own body. I don’t want anyone to feel silly or like they are being a nuisance; this was me and looking back, I should have asked more questions.”
Danielle’s cancer which turned out to be high-grade, was found by chance, during a pre-natal ultrasound scan just a few weeks later. High-grade cancer cells grow quickly and can spread more easily, so she went on to have surgical intervention to remove the tumours at around 6 months pregnant.
In November 2015, Danielle gave birth to a healthy baby girl named Zara who is now 6 years old, and she has been cancer free since. “I am so grateful to my amazing medical team for expediting everything so quickly, but I do believe that if I wasn’t pregnant, then I would not be in the same position as I am today.”
Laura MacKenzie, bladder cancer patient and Fight Bladder Cancer Patient Advocate:
“Bladder Cancer is particularly emotionally and physically invasive. Don’t get me wrong, all cancers are in their own way, but with bladder cancer, as symptoms related to urine and intimate areas of our body, it is natural to feel reluctant to speak out. Maybe even a reluctance to tell a partner, close family member or friend. Telling a doctor, for many, seems an impossible next step.
“Believe me when I say whatever you tell your doctor or show them, they have seen it before many times. To them, it is not weird or embarrassing. To them, it’s their job. They only can help you if you tell them what’s going on. The sooner you speak out, the sooner you can get any help or treatment you need. Leave it too long, and the available treatment options reduce in numbers. Blood in the urine is not always bladder cancer, but it absolutely shouldn’t be there. It may be a matter of reassuring you and treating what it is. Bladder Cancer is misdiagnosed as a UTI only too often, especially in women. Give your doctor and yourself a fighting chance.
Please “don’t go red; go to a doctor”.
Laura’s story began in August 2017, when she passed what she thought was blood but turned out to be faeces in her urine. This was due to a fistula caused by late-stage bladder cancer.
Initially, she was told she had just weeks to live. Fast forwards to 2022, and Laura is clear of cancer and now lives with two permanent stomas.
“This is a small price for a second chance at life, “she says.
Read Laura’s full story here: https://www.fightbladdercancer.co.uk/blog/%E2%80%9Cmy-stomas-are-small-p...
Colin O’Sullivan, Patient:
After battling bladder cancer last year, which could only be treated with life-changing surgery, Colin O’Sullivan was left with two stomas. He now wants to help make a difference for other patients and break the stigma behind topics perceived by many as embarrassing.
Colin will be holding a charity concert on the 19th of June 2022 to help raise vital awareness and funds for bladder cancer. Colin’s passion for raising awareness for bladder cancer comes from his own self-confessed “sheer lack of knowledge and the ignorance that comes from people’s reluctance to discuss subjects like 'wee' and 'poo' when it's something everyone does every day.”
“My ignorance and naivety amaze me even now!” he admits.
Read his story here:https://www.fightbladdercancer.co.uk/blog/fundraising-concert-break-blad...
Johnstone Shaw, Scottish bladder cancer patient and retired GP:
It all started on 29 January 2019. I was an extremely fit and healthy 64-year old still working (part-time) as a GP. After a highly vigorous spin-cycling class with the instructor shouting at us, I started passing blood in my urine (haematuria) when I got down to the changing room. It was so heavy that clots later stopped urine flow, and I thought I would have to be admitted. After quite a bit of water to flush the system through, it thankfully cleared. Being a doctor, I had diagnosed myself with bladder cancer by that time!
I saw my GP the following day. On 4 February, I had an ultrasound scan, and when I returned home that afternoon, the phone was ringing. My GP informed me that there was a lesion blocking the right ureter from my kidney. An appointment had been requested for an urgent urology appointment to have an outpatient cystoscopy and CT scan.
The outpatient cystoscope was on 18 February 2019, when bladder cancer was confirmed. It was a fairly horrendous experience, mainly on receiving the news that bladder cancer was approved and that there would be a 6-week wait for further investigation.
Eventually, my appointment came through for 1 April 2019 for my outpatient TURBT (general anaesthetic trans-urethral bladder tumour resection and biopsy of bladder tumour.) That is when I met my bladder cancer specialist. Before the surgery, he explained the procedure in great detail. He tried to reassure me that he thought we had caught it early (despite the doctor in me having already recognised the need for radical treatment as I had updated my reading of the most up-to-date Bladder Cancer Guidelines!)
The following day, he broke the news that the tumour looked like it was “muscle-invasive”, and radical surgery was required in the form of a radical cystoprostatectomy. After a pre-op CT scan a couple of weeks later, I had the surgery on 30 May 2019. So that was almost 17 weeks after my initial symptoms. Seventeen weeks of emotional torture but possibly quicker than in many other parts of the country. Fortunately, I needed no further treatment.
Who knows. My spin cycling coach may have saved my life? (As well as, of course, by my excellent bladder cancer surgeon!)
Three years on, I am back to living a reasonably everyday life and spin-cycling strenuously three times a week. Getting used to having a urostomy (my urine was delivered into a stoma bag) took a while getting used to. Living with the fear of recurrence rears its head when my regular CT scans happen, but I cope with that more easily than in the early days. Support from my cancer nurse specialists and Edinburgh “Maggie’s” has helped me live life to the full every day now and be positive rather than constantly thinking I’m about to die. That was not easy.
Kathleen McKenzie, Clinical Nurse Specialist, Urology Department, Raigmore Hospital, Inverness:
“Many people ignore the symptom of blood in the urine as they don’t think it is relevant. Many patients undergoing flexible cystoscopy can’t understand what all the fuss is about as they only saw blood in their urine once. This is not always due to embarrassment. It can be due to a combination of a genuine fear they are wasting everyone’s time, as well the intimate nature of things.”
Fight Bladder Cancer is raising awareness this May to raise urgent awareness and funds, so we can continue to support and make a difference for people affected by bladder cancer.
Dr Lydia Makaroff, CEO of Fight Bladder Cancer :
“Bladder cancer is more common than people think, and in many cases – patients hear of bladder cancer for the first time when they receive their diagnosis. Bladder cancer can no longer remain the forgotten cancer because delays in diagnosis and treatment cost a life.”
“Everyone who experiences these symptoms, especially if they see blood in their urine, should see a doctor.”
Shannon Boldon, Fight Bladder Cancer Policy Manager:
“Despite how common bladder cancer is, survival has not improved for patients in the last three decades, and public awareness for bladder cancer is low.”
Notes to Editors
Bladder cancer ranges from unaggressive and usually non-invasive tumours that recur and commit patients to long-term invasive surveillance to aggressive and invasive tumours with high disease-specific mortality.
[i]Cancer.org. Survival Rates for Bladder Cancer. Available online: https://www.cancer.org/cancer/bladder-cancer/detection-diagnosis-staging...
[ii] J. Elliott, R.Rotterud, A.Maddox-Smith, K.Bagshaw, L.E. Funk Cirefice, A.Knight, A. Necchi, A.Rek, A. Winterbottom, L.E. Makaroff, The bladder cancer patient survey: Global perspectives on awareness and treatment of bladder cancer, Journal of Cancer Policy, Volume 22, 2019, 100207, ISSN 2213-5383, https://doi.org/10.1016/j.jcpo.2019.100207.
(https://www.sciencedirect.com/science/article/pii/S2213538319300803)