Improved patient experience for men with prostate cancer

What is the patient experience?

It’s great to notice improvements in healthcare and medicine – new techniques, new equipment, new medications, in particular for prostate cancer.  It’s especially wonderful to see changes that focus on the patient and the “patient experience”.

Talk about “your healthcare team” has been around for quite a while.  Unfortunately, often it has only been talk for many men going on the prostate cancer journey (myself included).

Men might be referred to a continence physio, but not made aware of other support services when dealing with issues after their cancer treatment.  They also may not be fully informed of all potential side-effects of their chosen treatments.

I’ve recently witnessed two completely different models of patient care within the Victorian public health system.  One was fairly poor, but the other was genuinely inspiring.  In this post, I’m going to discuss the latter.

The Peter Mac model

I recently accompanied a friend to his first appointment at Peter MacCallum Cancer Centre, where I met with the Hospital’s Urology and Continence Nurse Consultant, Marc Diocera.

Marc kindly invited me to attend their next “Pre-Robotic Assisted Radical Prostatectomy (RARP)” Information Clinic, where I was allowed to have input as a prostate cancer survivor and thriver.  I was able to share info about my experience of the surgery, as well as some of the side-effects that they are likely to face.

At this Clinic, Marc introduced the new patients to their healthcare team – yes, an actual team of specialists, nurses, physiotherapists, counsellors, and more.

Hands on catheters

One particularly helpful aspect of the Clinic was when Marc showed the group what the catheter bag looked like.  He passed these around and had the group practise putting the bag on their legs.  The group also learned how to attach the overnight bag to the catheter.

I could definitely have used a session like this before my surgery!  Even though men are told they will wake up after the operation with a catheter, actually seeing a tube coming out of your penis (Percy) can still be an eye-opener.

It was also helpful for the men to be told that their abdominal muscles will be very sore after being cut through during the operation, so sitting up was likely to be difficult.  Knowing this kind of thing beforehand can help alleviate men’s concerns after their surgery.

Intimacy & sex

Another important topic for discussion at the Clinic was intimacy and sex.  For most men (if not all), these things will soon be very different.

Many men don’t know that prostate surgery usually leads to a shorter penis, as well as loss of thickness.

Other problems such as incontinence for a period of time and erectile dysfunction will affect men and their relationships.  The whole prostate cancer journey is very much a couple’s journey.

For single men, gay men, and those without any support, this can be a particularly difficult time.

The Peter Mac model provides assistance for all to access, so it’s really important that men make use of that help.

Additionally, if need be, approach a local Prostate Cancer Support Group to hear how others cope.

You are not alone and meeting others can relieve the stress and sense of isolation that can occur with such a diagnosis and subsequent treatment.

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