Prostate cancer needs specialist nurses – not a jack of all trades

Dear Minister Butler,

I’m writing as a bloke who has actually had to use the prostate cancer system — not as a politician, health professional or policy expert, but as a hairy-arsed, working-class contractor who doesn’t understand all the big medical words.

I understand the Government’s position is that the Commonwealth-funded prostate cancer nursing positions will continue under the McGrath Foundation and that the nurses will remain prostate cancer specialists. I genuinely hope that is exactly what happens.

But this is where I struggle to understand the logic of moving away from the PCFA model.

I was diagnosed with Gleason 9 prostate cancer at just 45 years old.

I’ve had surgery, radiation, recurrence, hormone therapy and more treatment than I ever imagined I'd need. Five years later, I’m still here — and I absolutely credit the treatment and the people around me with helping to keep me alive.

But surviving prostate cancer isn't the end of the story.

Since my surgery, I have lost the ability to have a natural erection.

That's not an easy sentence for a 45-year-old man to hear.

And here's the thing: these are conversations that can be incredibly difficult to have.

We're talking about penises, erections, ejaculation, masturbation, sex, relationships, continence and what your body is going to be like for the rest of your life.

Let's be honest — not every nurse is going to be comfortable sitting down with a bloke and talking openly about his willy and his sex life.

But a good prostate cancer specialist nurse is.

They don't make it weird.

They understand that this is part of prostate cancer.

They can talk a man through erectile dysfunction, treatment options and even practical things like how to use penile injections when that's appropriate.

That's not some minor side issue.

For a 45-year-old bloke being told that his natural erections may never return, that can be a massive psychological and emotional hit.

And then there's hormone therapy.

Imagine taking a bloke who has spent his entire adult life with testosterone running through his veins and suddenly shutting that system down.

The hot-headed bloke you've always been can become an emotional, exhausted, sometimes bloody quivering wreck.

Your libido disappears.

Your body changes.

Your confidence can change.

Your relationship can change.

And sometimes you don't even recognise yourself.

Yes, there are psychologists, counsellors and other specialists who can help — and they are incredibly important.

But there is something different about sitting across from a prostate cancer specialist nurse who can say:

"Yep. I know exactly what you're talking about. This happens. Let's work through it."

That specialist knowledge matters.

To put it in terms that a bloke like me understands:

It’s like saying, “NRL and AFL are both football, so let's get an NRL referee to officiate an AFL game.”

Yes, they're both football.

Yes, they both have a ball and players.

But they're completely different games.

Cancer is the same.

Prostate cancer, breast cancer, bowel cancer and lung cancer are all cancer, but they aren't the same disease. They don't affect the same people in the same way, and they don't involve the same treatments, side effects, sexual health issues, continence issues, hormonal treatments, recurrence patterns or long-term consequences.

You can't be a jack of all trades and expect to have the same depth of knowledge as someone who lives and breathes one particular cancer.

We need specialist nurses who understand the whole prostate cancer journey — not just the cancer itself, but what happens to the man afterwards.

I don't want to see the expertise and trust that has been built through the Prostate Cancer Foundation of Australia simply diluted or lost.

Give breast cancer the specialists it needs.

Give bowel cancer the specialists it needs.

Give lung cancer the specialists it needs.

And give prostate cancer the specialists it needs.

I'm not asking for special treatment for prostate cancer.

I'm asking for specialist care for a specialist disease.

Because keeping a man alive is obviously the first goal.

But helping that man learn how to live again afterwards is pretty bloody important too.

Please reconsider the decision to move the PCFA Specialist Nursing Service away from PCFA, and listen to the men, families, nurses and clinicians who rely on it.

I'm one of those men.

And I'd really like the next 45-year-old bloke who hears the words "You've got prostate cancer" to have the same access to specialist support that has helped me get this far.

Kind regards,
Neil Dickinson

Big love, Neil. We’ll always be in your corner, mate.

Join the action > fundraise.pcfa.org.au/dayofaction