Read real patient stories about their bladder cancer and treatment.
Caroline Raw, 51, was diagnosed with bladder cancer after noticing small amounts of blood in her urine.
She went to see her GP with her concerns, but says that if she hadn’t been persistent with her worries she may have been diagnosed at a much later stage and her cancer could have been more difficult to treat.
Men are three times more likely to be diagnosed with bladder cancer than women, and more than half of bladder cancers are diagnosed in people aged 75 and over.
However, women are more likely to be diagnosed through emergency routes, such as A&E or emergency GP referral. Patients diagnosed with cancer through an emergency route are more likely to be diagnosed at a late stage, which can mean that treatment options are limited and chances of survival are lower. Symptoms of bladder cancer in younger women can often be mistakenly associated with menstruation, the menopause or infections such as cystitis.
Caroline, who has two grown-up children and now helps care for her partner Jonny’s teenage son, said: “I first noticed something in the middle of May this year. There were two tiny spots of blood, the size of a pin head, on the paper. I’d had an operation to remove the lining of my womb two years before, so I just thought it might be related to that and didn’t think anything more of it.
“A couple of weeks later, when I was out with friends during the Bank Holiday weekend, I went to the toilet and noticed blood on the paper again, along with a streak of blood in my urine.”
Caroline went to see her doctor straight away and gave a urine sample so that it could be tested for blood, but it came back clear. She was also given a physical examination, but her doctor told her that the symptoms were probably related to her operation and she was asked to monitor her symptoms for three months to see if they formed a pattern.
Just two days later, Caroline noticed blood again, so she went back to the practice and saw another doctor. A second urine sample came back clear, so she was asked to monitor her symptoms for a month. Over the next four weeks Caroline noticed very small amounts of blood on two occasions. When she returned to her doctors, a third urine sample again showed no sign of blood.
In the meantime, Caroline was referred to a gynaecologist through private healthcare. She was sent for an ultrasound and it was then that an abnormal growth on the lining of her bladder, known as a polyp, was discovered.
Following a cystoscopy – a medical procedure that uses a light and camera attached to a thin fibre optic tube that is inserted into the body to examine the bladder – and CT scan, doctors confirmed that the growth was cancerous. Caroline underwent a procedure known as a transurethral resection of a bladder tumour (TURBT) to remove the polyp in August.
She said: “My consultant originally told me he believed it was a very early stage cancer but when the results came back after the TURBT I was told it was grade 3 and aggressive. I was devastated. Jonny had gone away for the weekend as we’d been told all along that it was nothing to worry about.
“We were really shocked. I had none of the risk factors. I’d never smoked or drank excessively, I’d always eaten healthily and I wasn’t overweight. I’d also never worked with chemicals, which is one of the known causes of bladder cancer.”
Caroline was seen by bladder cancer specialist Mr Sunjay Jain, who told her she had ‘high risk’ non-muscle-invasive bladder cancer. She was given a choice of two further treatment options – bladder removal, called a radical cystectomy, or a three year course of an immunotherapy drug called BCG. Caroline chose to have her bladder removed, and her operation was carried out at the end of September. She was one of the first patients to undergo pioneering robotic surgery led by consultant surgeons Sanjeev Kotwal and Stephen Prescott at St James’s University Hospital, Leeds. She stayed in hospital just four nights.
Caroline said: “I didn’t think I could stand the anxiety of having treatment for three years and not knowing if it was working. I wouldn’t have been able to move on, I’d always be wondering what was happening inside me. I just thought ‘let’s get rid of it and move on.’ I told the doctors I intend to live until I’m in my 90s – I’m not going anywhere, so do whatever you need to do to make me better.”
As well as having her bladder removed, Caroline underwent a urostomy, a procedure that means her urine is now drained via an artificial opening called a stoma, which is connected to a bag on the outside of her body.
The surgeons also performed a radical hysterectomy, which involves removing the womb, cervix, fallopian tubes and ovaries, to help minimise the chance of the cancer returning. This meant that Caroline experienced early menopause, and part of her recovery has been learning to cope with symptoms including hot flushes, night sweats and mood changes.
Caroline said: “Having the bag is nothing like as bad as I thought it might be. It’s been the least of my worries. It just takes a bit of getting used to. It took me a while to find bags that didn’t show through my clothes, but I’m now back in my skinny jeans and I’m determined that it won’t stop me from doing anything I want to.
“I think more consideration should be given to women who have had their bladders removed – everything seems to be aimed at men, who find it easier to cover up their bags. Women don’t want to feel they can’t wear the same clothes as they did before.”
Caroline’s positive attitude throughout her experience with cancer has been partly influenced by her upcoming wedding to Jonny, which will take place in April. The couple were engaged on Valentine’s Day 2015 and had been busy putting the final touches to their plans when Caroline was diagnosed.
She said: “The wedding has been hugely motivational. I kept saying to everyone that I was getting married in April and I needed to be ready – that no matter what I would be walking down the aisle. The only downside is that I’d already bought my wedding dress and I may need a different one to hide my bag, but I’ll deal with that if and when it happens.
“My dad has also been hugely inspirational to me. He’s 79 and has been living with Parkinson’s disease for a few years now, but it doesn’t stop him from doing anything. There’s no point in being miserable. Life’s too short. I always think that there are people who have to deal with much worse things. As a family, we just have a laugh about it and make jokes. We don’t get upset.”
Caroline is planning to return to her job at Leeds Building Society in January. She also recently joined a bladder cancer support group funded by the charities Yorkshire Cancer Research and Action Bladder Cancer UK, and is keen to raise awareness of symptoms among women and encourage them to trust their instincts if they think something is wrong.
She added: “As a woman, you get used to bleeding. I hadn’t had any pain and I didn’t lose weight. Everything else was normal. So many women, particularly my age, would have done nothing. They would have taken the doctor’s advice and left it three months to see if there was a pattern. That’s what you want to be told so you believe it. "I want to tell women not to accept symptoms as gynaecological. The chances are that it won’t be cancer, but if you can catch it early, it can be treated more easily. Cancer is scary, but the thought of getting it is probably more scary than dealing with it.”
Caroline is now married to Jonny and is back at work.
Meetings of the Bladder Cancer Support Group run by Action Bladder Cancer UK and Yorkshire Cancer Research take place monthly at the Wellcome Trust Brenner Building, St James’s University Hospital. For more information, please see the listings on the Patient Support Group page of our website.