The Harms of Late Diagnosis and Why Early, Informed Action Matters

By Tony Collier, Trustee and Vice Chair, Tackle Prostate Cancer

We often hear that PSA testing “does more harm than good.” But let’s be clear, it isn’t the PSA test that causes harm, it’s what sometimes happens next. Over-treatment, where men are treated unnecessarily or too aggressively, can cause significant side-effects, however, the latest diagnostic pathways have substantively reduced these harms.

Yet what we hear far less about are the harms of late diagnosis, the heartbreak, loss, and life-limiting consequences when prostate cancer is found too late.

I know this all too well.

At age 60, I was diagnosed with de novo stage 4 prostate cancer, incurable and already spread beyond the prostate. Looking back, my cancer had likely been developing for around 10 years. I had no symptoms until what seemed to be a simple runner’s “groin strain” in February 2017. Three months later, my life changed forever.

If only I had known about my right to ask for a PSA blood test at 50 and had one every year. My cancer might have been caught early, when it was still curable.

Hearing the words “you have cancer” is devastating. Hearing “it’s incurable” is indescribable, especially when you realise it might have been prevented.

A late diagnosis doesn’t just shorten lives; it changes everything about the life that remains. Treatment for advanced disease usually involves long-term hormone therapy, effectively chemical castration, with side-effects that can severely affect physical and emotional wellbeing. I spent the first 18 months after my diagnosis thinking so much about dying that I lost sight of living. It took professional help and the support of my family to bring me back from that dark place.

Relationships can suffer deeply too. Some couples find it hard to adjust to a sexless relationship. For single men, the emotional toll of trying to build intimacy while living with these side-effects can be overwhelming and isolating.

And then there are the families left behind, fathers, brothers, sons, partners missing graduations, weddings, and grandchildren. I’ve lost friends who were diagnosed after me and didn’t survive. The heartbreak for their loved ones is immense.

The financial cost of late diagnosis is also huge. Many men are unable to keep working. I sold my business and home to make the most of the time I have with my family, the right decision for us, but one that came at significant financial cost. My ongoing treatment has already exceeded £300,000, with more to come as treatments stop working. Some of the newer drugs, such as

Lutetium-177, aren’t available on the NHS, and paying privately can quickly wipe out a family’s savings.

Early diagnosis, in contrast, is both more effective and less costly, not only to the NHS but to families and society.

That’s why we must consider both sides of the coin in the debate about PSA testing and prostate cancer screening. Yes, we must avoid unnecessary treatment and protect men from harm, but we must also protect them from the equally devastating harms of finding cancer too late.

At Tackle Prostate Cancer, we recognise that every man’s experience is different. Some live with the consequences of late diagnosis, others with the side-effects of early treatment. All deserve understanding, informed choice, and support.

We stand alongside everyone affected, campaigning for earlier, smarter diagnosis, supporting men to make informed treatment decisions, and providing a network of peer-led support groups across the UK.

Finding that you need to talk about prostate cancer with someone who’s been through it? Find your nearest support group by clicking here.