With Florence Maponga
Meet Kevin, a 58-year-old who navigated the challenges of a Bladder Cancer diagnosis in 2020.
INTRODUCTION
It was back in September 2022 that I first noticed that my urine was a little stained; I remember feeling puzzled and concerned, especially since I was diligent about my water intake. I was away in the Peak District on holiday then and had a beetroot earlier that day, so I thought it was from that. There was nothing in the following weeks; then, I noticed what looked like flakes come out while urinating. It was at this stage I decided to see my doctor, which led to a series of tests culminating in the diagnosis of bladder cancer. Like many, their initial thought was prostate-related. The blood test was done along with the internal examination, and all went well, so my prostate was ok. After going for a cystoscopy, they found 5 tumours in my bladder, and soon after, I went in for a TURBT.
Note from Florence: Transurethral Resection of Bladder Tumor (TURBT) is a surgical procedure to diagnose bladder cancer and take a biopsy. It is always carried out under an aesthetic, either a general or a regional (such as an epidural or spinal injection that numbs you from the waist down). Learn more.
DIAGNOSIS
Following surgery, there was a short break before I started BCG treatment. I managed to have the first initial 6 procedures with no problems or side effects, apart from feeling knackered as each week passed. Then, 2 weeks after finishing the first session of treatment, I woke up one morning and could hardly walk. After asking various doctors, who looked at me as if I was mad, I did something I said I would never do and Googled my problem. To my amazement, the words “Reactive arthritis” appeared. I told the doctors about this, who still looked a little bewildered. I eventually had the chance to speak with my urologist, who confirmed this diagnosis.
Note from Florence: BCG treatment is given to patients with high-risk, non-muscle-invasive bladder cancer or carcinoma in situ (CIS). The treatment involves placing a liquid solution of BCG directly into your bladder using a catheter. The solution will be kept in your bladder for one or two hours before being drained away. It is an immunotherapy treatment. BCG stands for Bacillus Calmette-Guerin. It stimulates the immune system to target and destroy any remaining cancer cells. Learn more.
The condition attacked my knees, and I was reduced to using a walking stick at first; after a week or two, I thought it was a walker I needed “like a Zimmer frame”. It lasted for about 3 months and gradually got better during that time. Reactive arthritis is a rare side effect of BCG; I was just unlucky. I had to stop the following BCG sessions because of it, and two days ago, I went in for my second cystoscopy check; sadly, 2 tumours have returned. I am currently waiting for another TURBT to remove them, and according to my urologist, I will now have to have warm mitomycin treatments to hopefully avoid having a repeat episode of reactive arthritis.
Note from Florence: Mitomycin C is a chemotherapy drug. For non-muscle invasive bladder cancer, it is usually put straight into the bladder via a catheter. The solution will be kept in your bladder for one or two hours before being drained away. It is a chemotherapy treatment. Learn more.
Although very worried, I am coping surprisingly well with it all; I have put my faith in the wonderful doctors and nurses who have helped me so far. My mind is refusing to give up the fight, and I am hopeful that it will eventually bugger off for good; please excuse my choice of words.
TREATMENT
Since writing my story, I have now been advised that the best course of action would probably be a radical cystectomy. My next TURBT is due imminently, so the biopsy results from that will give us the information I need to decide on further treatment.
POSITIVE EXPERIENCES
Although the initial diagnosis was shocking and very upsetting, I soon realised that using the available support offered there was very beneficial to my mental well-being. My work colleagues (in a GP surgery) were wonderful, understanding, and supportive. The unwavering support from my colleagues at GP surgery was a beacon of hope. Their understanding and empathy were instrumental in my mental health and well-being during this challenging time.
KEVIN’S WORDS OF WISDOM
I have just come across this website and am thrilled about it. Seeing others going through the same thing is somewhat comforting—well done to the team for such an informative site. This has been brilliant. Fight Bladder Cancer helped me with all the information you need on one site, and it spurred me to ask questions about things I wouldn’t have been aware of before.
Note from Florence: We urge you, our readers, to share your own stories, seek family support or consult our resources. Kevin’s journey might echo your own experiences with bladder cancer. We warmly encourage you to share your story with us – your insights could be a source of comfort and strength to others in our community. Read more patient stories.