Advocating for Yourself During Prostate Cancer

Colin Ashley Reed (Ashley) is a prostate cancer survivor, an eternal optimist, and an advocate for other men experiencing prostate and incontinence issues.

This is his story.

Ashley had an enlarged prostate which he successfully managed with medication for over 10 years before he had to have an operation where they remove excess tissue from the prostate (transurethral resection of the prostate or TURP) to allow free flow of urine (wee) from his bladder. During his surgery, it was discovered that Ashley had prostate cancer (tumour on the prostate).

What is prostate? The prostate is a gland that sits directly below your bladder and is part of the male reproductive system. The tube your wee comes out of (urethra) runs through it, which is why it can cause continence issues for men with an enlarged prostate or prostate cancer.
     

Prostate Cancer Treatment and Incontinence

“To treat the cancer, I considered both radiation and surgery to remove the prostate," Ashley told Bridge. "Whilst both can have similar risks of side effects such as incontinence and erectile dysfunction, I had also heard of possible additional risks of faecal incontinence with radiation. After much research and asking a lot of questions at my medical appointments, I decided on surgery.” In 2023, Ashley had a robot-assisted radical prostatectomy (a procedure where the surgeon uses robotic tools to assist them to remove the prostate, which is less invasive than traditional surgical methods).

“For about 6 months after the surgery I had to wear continence pads because of frequent urinary leakage. I tried to plan ahead and have nappy bags with me in case there was no bin in the men’s toilet. I would just roll the pad in the plastic bag and put it in my pocket or my bag. I still keep a spare pair of undies in the car with me just in case. It has become a habit.”

After regaining his continence during the day, Ashley still struggled with nocturia (weeing at night) but has found the trick for him is to stay very well hydrated during the day and then stop fluids from around 7pm. This means he can get a full night’s rest, only waking once in the night to wee. “I actually saw the tip about stopping fluids on TikTok, of all places! The only thing is, you have to drink enough during the day so you don’t get dehydrated, because concentrated urine is a bladder irritant and can make you wee more often,” said Ashley.

"My continence is at around 95% at present and I am therefore one of the luckier prostate cancer patients in this regard (at least to date anyway). I currently have only very occasional and minor leaks and have no real need for pads other than occasionally wearing a small 'panty-liner' if I am having a big day out or attending an event. Erectile function has also been a challenge to date but is improving with time. Despite these issues, overall, I am happy to be cancer free at the moment and be enjoying my retirement. I recently took a 6-week trip to Europe with my wife and have begun taking part in sports and fitness activities again."

 “I attribute my continence success to an excellent surgeon (urologist) and following all pelvic floor physiotherapy instructions religiously including doing pelvic floor exercises 3 times a day and now maintaining by doing them 3 times a week between weightlifting reps at the gym."

 "I also think my very strong fitness level prior to prostate surgery and ongoing exercise and fitness regime since (including a long and painful rehabilitation from broken femur resulting from a cycling accident 6 months into my prostate surgery recovery process!) has helped a lot."

 "I have been a long-time endurance athlete and competed in 11 Ironman Triathlons, 26 Marathons and numerous other challenges including mountain climbing adventures on Ben Nevis Mountain (Scotland) and The Matterhorn Mountain (Switzerland). The wonderful support of my wife, Elizabeth, and friends and family and my local men’s prostate cancer support group has also assisted in my recovery."
     

 Education and Advocacy

Ashley thinks another key aspect to his successful treatment was taking full ownership of his prostate cancer journey and doing a lot of research, asking his health care team lots of questions, and not just following what he was being told without fully understanding the ramifications of decisions at each step of the way. “I don’t mind things going badly if I know I have done the research and tried my best to make the right choices, but I would be annoyed with myself if the treatment didn’t go as planned and I hadn’t been fully involved and advocated for myself during the process," Ashley tells Bridge.

 "For me, it was all about taking ownership and self-managing my care and recovery..."

 "I was very lucky to have a highly skilled and experienced urologist and surgeon, in whom I placed my faith and trust during the journey, and he was very good at answering my (many!) questions and clarifying options."

“I have met a lot of men with prostate cancer who don’t seem empowered to ask questions about their care or do their own research. I think perhaps some people just have their head in the sand and don’t want to accept that they are sick. I think personality also comes into it and how confident you are to speak up, as well as what you do for work. If you deal with highly-qualified professionals in your day job, you are used to questioning their decision making, but if you aren’t it could be very intimidating to question your doctors' or specialists’ decisions. It also probably depends on your level of health literacy (understanding of your health care options) and how much you have been involved in medical settings before. If you have never had any illness or cared for a loved one with an illness, this might be your first experience in a hospital setting, which could make people anxious.”

“I think this is where support groups play an important role. You can meet people who are on a similar journey, or have already been through it, see what questions they asked, or listen to their lived experience of different treatment options and perhaps use these ideas to go back to your health care team with questions.”

“For me, it was all about taking ownership and self-managing my care and recovery, rather than leaving it in the hands of someone else. I believe this is how you will get the best results and enjoy the healthiest body and mind you can. It is all about being positive.”
     

 Mental Health

The support of medical teams, family and friends is important for the mental health of those affected by incontinence or other side-effects of prostate cancer. The challenges can be distressing and cause anxiety and depression. Ashley has experienced both during his journey and worked through them by maintaining strong self-awareness and seeking help when he needed it.

“I have joined Continence Health Australia's Continence Consumer Network and the Prostate Cancer Foundation of Australia. Both organisations offer great support, contacts and resources including advice on mental health aspects," says Ashley. "The fact that I have joined up to participate in consumer support initiatives for these organisations and have this year been accepted into the Peter MacCallum Cancer Centre (Victoria) Consumer Register means that I am not only ‘giving back’, but I have created a positive out of a negative in relation to my experiences.”

Box Hill Prostate Cancer Support Group

Ashley joined the Box Hill (Victoria) Prostate Cancer Support Group 2 years ago and found the group very helpful. Although he is currently in remission from prostate cancer, Ashley likes to engage with the group, mentor other men and encourage them to fully partake in their treatment and recovery.

Ashley is pragmatic and knows the possibility of his cancer coming back or spreading to other parts of the body. Like him, many members of the group have experienced side effects from prostate cancer treatments, including incontinence. He likes to listen to other men’s stories in the group and the various experiences and treatments they have undergone so he knows what to do should he be in that position in the future. He also likes that the group seeks to spread awareness of prostate cancer and assist and advise affected men through their journey.
     

Looking to the Future with a Positive Attitude

 “I continue to listen and learn, to research and to be informed and to maintain a very positive and proactive approach to my cancer-related challenges," Ashley tells Bridge. "At the same time, I am focused on getting on with all the other things life has to offer!”.

Have Questions About Your Prostate? Call the National Continence Helpline 1800 33 00 66 MON-FRI 8am-8pm AEST.