19 June 2023
This week during World Continence Week (June 19 – 23), we have teamed up with Continence Foundation of Australia to share Johns Story about his journey with prostate cancer, and his valuable contribution to the PCFA Prostate Pride Cancer Support Group.
“It’s so important to talk about incontinence because it helps to raise awareness, acceptance and understanding,” says John who experienced incontinence for the first time after prostate cancer surgery. Whilst he doesn’t deny it was a shock, he wants to talk openly in the interest of supporting others. “If we talk about it, it’s easier for others to understand the issue and remove the barriers to seeking help,” he observes.
At the time, John was experiencing what he describes as vague bladder symptoms, such as not finishing urinating properly and some bowel symptoms. When it came to regular health checks and awareness, John said he was always ahead of the game as his father died from prostate cancer at the age of 68. Additionally, with breast cancer affecting most of the women on his mother’s side, John always had a strong awareness of his genetic cancer risk. However, when COVID-19 struck, and everything moved to digital and telehealth, he was one of the many people not able to access regular physical check-ups and blood tests.
When John was finally able to see his doctor in person and have the necessary tests, the outcome was not good. His doctor said, “I’ve got your results, you’ve got high prostate specific antigen (PSA), an enlarged prostate and various growths on your kidneys.”. From there things moved very swiftly. John’s doctor gave him the names of three urologists and advised him to see the first one who was available. He saw a urologist within the next fortnight and more tests including ultrasounds and computed tomography (CT) scans were done. The urologist identified there were growths on both of John’s kidneys he was concerned about and a large shadow over the prostate gland which was most likely a tumour.
A digital examination revealed the prostate was significantly enlarged and it was necessary to do a biopsy. The next day the urologist rang and said, “it’s not good news, John. You have a very aggressive form of prostate cancer.” John says, “I was knocked for six and asked what about my kidneys?” The surgeon said the urgent priority was the prostate cancer and with a Gleason score of 9, it needed to be dealt with immediately. The decision to proceed with surgery depended on the results of a PET scan to determine whether the cancer had spread to other organs in the body. Fortunately, the cancer was contained, and the surgery was scheduled to proceed. Additionally, the growths seen on John’s kidneys turned out to be benign.
John says it all happened so quickly he was not prepared for what to expect. The surgery to remove his prostate was complicated and took six hours. It was found that instead of being the usual walnut size, his prostate gland was about the size of an orange and was attached to and putting pressure on his bowel. John woke up in the hospital’s Intensive Care Unit and had a catheter in for the next two weeks.
John says there was so much to deal with in such a short space of time and it was overwhelming. He was grateful to have been shown how to do pelvic floor muscle exercises correctly prior to surgery and was keen to continue afterwards, working with both a urology nurse and pelvic health physiotherapist. However, he found he needed to wear continence pads for the next four months. “That took a lot to get my head around and you feel like you’re never going to stop wetting yourself,” he says. “It just felt like a never-ending road.”
The mental and physical toll
“When you’re confronted with something like this, it affects your confidence and self-esteem and your levels of anxiety go up. I withdrew socially to a significant extent,” says John.
In the early days after his surgery, John didn’t go out much at all and was always anxious when he did, even when wearing incontinence pads. “Once I had an accident and wasn’t even aware I was wetting myself until I felt it going down my leg. I was wearing blue jeans at the time, and it was not a good look,” he says “Just getting in and out of a car, was initially challenging because I could easily leak. I was paranoid about being in so many situations where this could happen, and I was always worried that I might smell.”
John mentions that everything he has been through has had a big psychological impact, especially experiencing being both incontinent and impotent as many men do. “I was in shock for months.”
With time and support John found his incontinence started to improve significantly and relatively quickly. He can still experience leakage if he coughs or whilst on a tram which veers suddenly, but he hasn’t worn a pad for some time.
John says many men experiencing incontinence tend to withdraw socially and are hesitant to go out. “I didn’t want to embarrass myself publicly so I would wear pads and take extra ones with me, as well as zip lock bags to put the used ones in as most male toilets in public places did not have a disposal bin, even the ones in the hospital where I saw my urologist which really surprised me,” he says. “I think BINS4Blokes is such an important campaign and I’ve lobbied in my workplace to make something similar happen,” he says.
John is a dedicated member of Prostate Pride, a cancer peer support group for the LGBTQI+ community impacted by prostate cancer, which is affiliated with the Prostate Cancer Foundation of Australia. John says the group provides a forum for people to share their experiences and raise awareness of prostate cancer.
John identifies his current situation as living with cancer whist his specialist deals with the “hot spots” and the spread through the lymphatic system. “It’s inspiring to see some of the other men who attend the physiotherapy classes and were diagnosed many years ago, some over ten years ago, and they’re still boxing on. I need to see that. I can be knocked around if I hear of someone dying, but I try to pick myself up and not dwell on my situation. I like to live each day as well as I can,” he says.
“I’m still very aware of what I need to do and how to manage things, including doing my pelvic floor exercises to keep on top of it,” says John. He no longer lives with the unpredictability of accidental leakage. “One of the men in my peer support group is still struggling with being incontinent and his confidence has been shattered. I asked him how he was going the other day and he just burst into tears. I told him it will get better. It may take time, but you are doing the right things and you need to keep going and ask for the support that is there,” says John.
John wants to strongly reinforce the key message that help and support are available. “People need to know there is information out there and how to find it easily, but I do think the stigma of incontinence restricts people from seeking help and advice,” he says. “It’s a big deal to say, ‘I’m incontinent or I’ve got an issue with continence.’ Overcoming all the issues associated with self-esteem and confidence is challenging but I am here to tell people it does get better.”
John’s key messages to all men includes, maintaining regular health checks, getting your PSA checked regularly, asking for the results, and requesting any medical tests or examinations you think you need, if you have any concerns at all. He also encourages men to seek out the support and information that is available.
The Prostate Pride – Cancer Peer Support Group meets monthly in Abbotsford, Melbourne.
Email: prostatepride@gmail.com
Phone: 0412 106 441; 0422 566 862
Prostate Cancer Foundation of Australia
The Prostate Pride group is recognised by the Prostate Cancer Foundation of Australia (PCFA). Visit www.pcfa.org.au or phone 1800 22 00 99 for resources and information, and to find a support group in your local area.
National Continence Helpline 1800 33 00 66
The National Continence Helpline is staffed by nurse continence specialists who offer free and confidential information, advice, and support to people affected by incontinence. They also provide a wide range of continence-related resources and referrals to local services. The Helpline can also be accessed via the Telephone Interpreter Service on 131 450. It operates 8am to 8pm AEST, Monday to Friday.
The Continence Foundation of Australia is a not-for-profit organisation and the national peak body for incontinence prevention, management, education, awareness, information and advocacy. For more information go to continence.org.au
