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• Fundraising concert to break the bladder cancer stigma!

  Colin O’Sullivan is holding a charity concert for Fight Bladder Cancer and Colostomy UK

  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.

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• My stomas are a small price to pay for a second chance at life

  Laura MacKenzie's story

  Laura’s story begins 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. 

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• Foods to fuel the fight!

  How to eat sensibly, when nothing takes your fancy.

  Some people get really hungry when on cancer treatment, while others find it a struggle to eat. Either way, aiming for a healthy, balanced diet is the way to go.

  Here are some great tips for finding balance and maximising your nutrition from Carolyn Humphries, food writer and author, originally shared with us for Fight 13.

   

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• Why communication matters

  by Jane Blofield, Urology Oncology Clinical Nurse Specialist at Kent and Canterbury Hospital

  “To be given a bladder cancer diagnosis has a huge impact on life. Suddenly the control you have over your ‘everyday’ is impacted by this new, unwelcome intrusion, which no-one wants and no one invited to the party!” says Jane Blofield.

  We asked Jane, a Urology Oncology Clinical Nurse, to share some of the key actions that have helped her patients and their families over the years. She explains why communication matters with a bladder cancer diagnosis.

   

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• Teresa's Story

  Teresa Scott shares her story about being diagnosed with advanced, metastatic bladder cancer. The GP had treated her for several months for a UTI, giving her five sets of antibiotics, despite having other painful symptoms. 

  Her story highlights the all too common and worrying fact that women often face a worse prognosis when finally diagnosed with bladder cancer compared to men ((John et al., 2021. European Urology Focus, 7(2), 359-365). Misdiagnosis of bladder cancer should never go on for this long. 

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• Jane's Story

  Jane Pidcock is a bladder cancer survivor. Unfortunately, her story is a very familiar one for many women- her symptoms were misdiagnosed.  Since her diagnosis, Jane has thrown herself into fundraising for Fight Bladder Cancer.

   

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• Mary's Story

  To mark World Cancer Day, we spoke to Mary Lovett, a bladder cancer patient, who was finally diagnosed after a long and frustrating journey. Her story demonstrates how much work is needed to close the diagnosis gap for women so stories like hers become less common in the bladder cancer community.

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• Stewart's Story

  Bladder cancer receives just 1% of cancer research funding in the UK, despite being the 4th most common cancer in men in the UK. A lack of funding and knowledge of the condition means that often people with bladder cancer wait too long for a diagnosis.

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• Lack Of Specialist Staff Is Leading To Quality Of Life And Sexual Wellbeing Problems For Bladder Cancer Patients

  28 May 2021

  Extensive research project from charity Fight Bladder Cancer finds bladder cancer patients’ quality of life and sexual wellbeing is being impacted by a lack of specialist staff to provide them with the care and support they need

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• Bladder cancer maintenance treatment not recommended by NHS in England

  Thursday 6 May 2021

  As Bladder Cancer Awareness Month kicks off, the National Institute of Health and Care Excellence (NICE) has announced that it is not recommending avelumab (Bavencio) for use as a maintenance treatment for people with locally advanced or metastatic urothelial (bladder) cancer after chemotherapy. This is deeply disappointing, and we urge NICE and the manufacturer to continue discussions. There are currently no maintenance treatments - treatments that can slow the rate of cancer and stop it progressing - routinely available for these types of patients on the NHS. 

  Professor Alison Birtle, oncologist and trustee at Fight Bladder Cancer said “This is a plea to NICE and the manufacturer. Please continue your discussions and resolve your current uncertainties around cost-effectiveness. Patients are not numbers - this drug can give them good quality time and is the biggest change in bladder cancer management we have had in decades. This decision, if it stands, will be hugely disappointing to so many patients with bladder cancer, who could see their lives greatly extended if they had access to this drug. Whilst other cancers have seen life extending drugs funded time and again, bladder cancer survival has not improved over the last 20 years in the UK.”

  Although NICE agreed that “clinical trial evidence shows that if people take avelumab it takes longer for their cancer to get worse, and they live longer than if they have best supportive care”, NICE stated that “the most likely cost-effectiveness estimates are much higher than what NICE normally considers an acceptable use of NHS resources”. 

  read more here ...

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