Neil from Jersey

Low risk doesn’t mean no risk. We must prioritise awareness and timely screening for prostate cancer to save lives and alleviate suffering.

In 2008, as a 53-year-old white man with no family history of prostate cancer, I was considered low risk for developing the disease. At that time, the advice from the National Screening Committee was not to screen low-risk individuals like me for prostate cancer. Had I followed this guideline and not received a PSA test from my GP, I likely would have presented with stage 4 disease, where survival rates drop dramatically. For context, the five-year survival rate for stage 4 metastatic prostate cancer is around 50%, while it is nearly 100% for stages 1 and 2, and 95% for stage 3. The statistic is alarming: about 12,000 men die from prostate cancer in the UK each year, often due to late-stage diagnosis, which is much harder to treat.

As a gynaecologist, I have advocated for a Women’s Health Strategy, but I also recognize the urgent need for a Men’s Health Strategy. Early detection of prostate cancer could save countless men from fatal diagnoses. Why must we wait several years before trials like the Transform Trial can provide clear data supporting screening? If the more predictive Stockholm 3 test were implemented, with a cost of approximately £116 per test, the screening program would be cost-neutral and could save many lives. Until those trials report we should look after ourselves.

My personal experience with prostate cancer illustrates these points and offers crucial lessons. After my initial PSA test of 1.4 ng/ml during a “Well Man check” in 2008, I was reassured that everything looked fine. Subsequently, I didn’t have another PSA test until five years later since I had no symptoms indicative of a prostate issue. By then, my levels had risen to 3.8 ng/ml. My GP suggested a repeat test, which showed an increase to 4.92 ng/ml, leading to a referral to a urology department.

An MRI and transperineal biopsies confirmed high-grade prostate cancer (Gleason 4+4) but seemed contained within the prostate. After consulting with oncologists and surgeons, I opted for robotic surgery in January 2014. The surgery confirmed high-grade cancer, but thankfully, the tumor margins were clear, and there was no lymph node involvement. I was optimistic, believing the cancer had been caught early.

For two years following the surgery, I diligently focused on my rehabilitation. My PSA levels remained low, below 0.01 ng/ml. However, amidst work and the distractions of the COVID-19 pandemic, I became complacent about my follow-up PSA tests. This negligence was compounded when I learned from a friend that he had to return for radiotherapy due to a rising PSA level of 0.25 ng/ml. I decided to check my own levels and was shocked to discover that mine had been increasing over four years without being flagged as abnormal. Despite the laboratory reporting these results, they neglected to contextualize them properly, which misled my healthcare team into thinking I was still within a safe range.

Confronted with these alarming developments, I underwent an MRI and PSMA PET scan, which regrettably revealed the recurrence of my cancer. A subsequent summer in London involved six and a half weeks of radiation therapy and two years of Androgen Deprivation Therapy, leaving me drained and frustrated at both the healthcare system and myself for not advocating more vigorously for my health.

During my time in London, I shared my story with Prostate UK. They informed me that I was the third man to relate a similar experience in just three months. This prompted Prostate UK to conduct a national audit of prostate cancer follow-ups, which has been submitted for publication. I presented my case at the Association for Laboratory Medicine’s National Audit Day in November 2025, where I urged laboratory professionals to improve how they report test results. For instance, having a clear indication of whether the patient has a prostate or has undergone treatment could significantly affect interpretation and management.

The primary care team revised their practices, implementing in-house training. They are now acutely aware that any patient with two consecutive increases greater than 0.1 ng/ml, or any three consecutive rises in PSA levels, should receive urgent attention. A PSA level above 0.2 ng/ml after surgery indicates biochemical recurrence necessitating further investigation.

Regrettably, many laboratories in the UK have yet to revise their reporting methods for PSA levels post-treatment. This issue persists even in places like Jersey, and there is a collective effort to encourage change.

Cancer can be likened to a house on fire; if caught early, it’s easier to extinguish. Early detection and targeted treatment are vital for improving outcomes. We must prioritize awareness and timely screening for prostate cancer to save lives and alleviate suffering.