Wed 14, Jun 2023 , Bridge Magazine
“It’s so important to talk about incontinence and 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.
Anyone dealing with incontinence for the first time will know how challenging it can be, including feeling self-conscious when shopping for incontinence pads. When his local chemist advertised incontinence pads at half price, John decided to stock up but felt awkward and embarrassed. Trying to cover this up with humour he said to the mature age woman at the counter, “isn’t it terrible it’s come to this?” Her unexpected response was, “darling, the good thing is these are available for all of us to use.” John understood, she was probably speaking from a lived perspective herself. “It was a very positive experience,” says John, “as I went from feeling terrible, to being told it was actually okay.”
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.” When he next saw his doctor, John asked him to go over the results again, so that he had a clear understanding of what was going on. 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 wasn’t 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 wasn’t a good look,” he says. “It was awful having accidents because you just want to go home without anyone noticing and quietly withdraw. So, I was very cautious about going out for a long time. Sometimes just being in a car, and even getting in and out of a car, were 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 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. When they removed the prostate, they rejoined the two ends of the urethra and in my case that changed my penis length. It was all very challenging, especially being at work. I just wanted to yell at people because my life had changed with cancer.”
When John’s urology nurse asked him to reduce his continence pad down a size in absorbency, he felt very challenged and anxious about wetting himself. However, she insisted it was time to retrain both his body and mind to get things working in synchronicity. The next step after that was to not wear a pad at all with the aim of reducing his dependence on them long term. After having had a couple of accidents, this was again unnerving for John. For security he initially chose to wear double underwear instead and black tracksuit pants became his favoured choice of clothing.
However, John found his incontinence improved significantly and relatively quickly. He can still experience leakage if he coughs or is on a tram which veers suddenly but hasn’t worn a pad for some time. He wears underwear with an inbuilt continence pad that is washable which he recommends to his prostate cancer peer support group. Not one to miss out on a bargain, John noticed there was a special discounted price on this underwear at his local Kmart and says he bought the lot. He distributed them amongst his peer support group, also offering them to his work colleagues, many of whom discreetly took him up on his kindness. John is continually motivated to help others. With what he’s experienced, he is full of ideas, tips and tricks to improve his own quality of life and that of those around him.
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 works at Thorne Harbour Health (previously known as the Victorian AIDS Council) where he says there are sanitary pad disposal bins in every toilet. He asked if men’s incontinence pads could potentially be put into these bins as well and the answer was yes. John provided that important feedback to the Occupational Health and Safety team who now also provide sanitary and incontinence pads in both their male and female toilets.
John says “I am consistently surprised by the ignorance and lack of knowledge many men have around their health and even knowing what the prostate gland does. When I try to talk to my male friends about PSA, prostate cancer or incontinence none of them want to know. When I ask them about their health checks, they can be quite dismissive and reluctant to talk about their health.”
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. Each person updates where they are at on their journey, what treatments they are having and how they are feeling in a safe, confidential environment.
Not uncommon amongst those who’ve had cancer is the fear of recurrence. John says the medical staff he dealt with were frank about this, warning him that once you’ve had cancer every ache or pain will make you wonder if the cancer has returned. He has been reassured this is a normal way to think but often it’s not the case that cancer is returning. “It’s easy to overthink things which is perfectly understandable,” says John.
John describes his current situation as living with cancer while the specialist deals with the “hot spots” and the spread through the lymphatic system. “It’s inspiring to see some of the other men who do the physiotherapy classes who 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 and just live each day as well as I can,” he says.
“I’m still very aware of what I need to do and how I 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 but is wary it can still occasionally happen when sneezing or coughing. “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 that and the issues with self-esteem and confidence is challenging but I’m here to tell people it does get better.”
John’s key messages to all men include regular health checks, especially 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.
Phone: 0412 106 441; 0422 566 862
The Prostate Pride group is recognised by the Prostate Cancer Foundation of Australia (PCFA). They have more resources and information on their website. You can also contact the PCFA to find support groups in other states.
The Australian Prostate Centre has information and referrals.
Prostate Cancer Foundation of Australia website - https://www.pcfa.org.au/
What is PSA?
Prostate Specific Antigen or PSA is a protein produced by normal, as well as cancerous cells of the prostate gland. The PSA test measures the level of PSA in the blood. The blood level of PSA is often higher in people with prostate cancer, but also with other prostate conditions such as benign prostatic hyperplasia (BPH) or enlargement of the prostate and prostatitis (inflammation of the prostate).
What is a Gleason Score?
The Gleason scoring system is used to show how abnormal or different the cancer tissue is, when compared with normal tissue. The two most common patterns of growth seen in the biopsy sample are each given a number from 1 to 5, and then these two numbers are added together to give the Gleason Score (e.g., 4+3=7). The greater the difference from the normal tissue pattern, the higher the Gleason Score, the more aggressive the cancer is in the body.
Information provided with permission from the Prostate Foundation of Australia - https://www.pcfa.org.au/media/430563/Diagnosis.pdf
What is a CT scan?
A CT (or CAT) scan is a medical imaging technique which takes x-ray images of what is happening inside the body. It is used to diagnose tumours or check for internal injuries, tissue damage or bleeding.
What is a PET scan?
A PET (positron emission tomography) scan is an imaging test that uses radioactive material to detect diseases, in particular cancer and the evaluation of cancer treatment.
What is the lymphatic system?
The lymphatic system helps to balance the fluid levels in the body and supports the immune response to infection or disease.