Tony has worked in clinical diagnostics for 20 years.  He navigated CCL through COVID-19 testing and in the past year has been central in pioneering CCL’s cancer detection testing, particularly focusing on improving prostate cancer diagnostics in the UK.  Last month, Tony received the shocking news that he himself has prostate cancer.

What made you take the Proclarix test?

I am 67 years old and post-COVID I made some promises to myself (and my family!) to do various things for my health.  First on the list was to fix my knee – the replacement was done last year.  Second on the list was to check my PSA.   I had never been offered a PSA test by my GP.  I had no symptoms.  I did a low-cost self-test kit ordered online and a CCL PSA laboratory test, so I could compare.  Both indicated that my PSA was around the normal range for my age. However, the crux of our prostate cancer diagnostics at CCL is the inaccuracy of PSA for prostate cancer, so I did one of our biomarker screening tests, Proclarix.  The result was completely unexpected - I had a 42.3% chance of having high-grade prostate cancer.  Based on PSA alone, my prostate cancer would not have been detected.

“Based on PSA alone, my prostate cancer would not have been detected.”

What were the next steps after receiving your Proclarix test?

I took my Proclarix result to my GP.  These tests are not yet in use by the NHS, so they weren’t obligated to do anything.  My GP did another PSA test, and the result was still within normal range.  Under the NICE guidelines, I would be classed as low risk and recommended to do another PSA test next year.  Luckily, my GP had heard of Proclarix and understood the validity of these tests, so he referred me for an MRI at Addenbrookes Hospital.  I got to have an mpMRI scan within a couple of weeks.  I am lucky to have had this experience – if my GP had not made this referral I would have had to pay for a private MRI.

What did your MRI result show?

The mpMRI revealed that I have two M5 “very suspicious” prostate lesions which needed further investigation, which was worrying.  I immediately agreed to a prostate biopsy.

What were the results of your biopsy?

I was preparing for stage 3 or 4, given that the MRI showed two lesions.  After anxious wait for my results, the diagnosis was better than I anticipated – stage 2.  It has been caught early and has not spread.  I also have a Gleason Score of 6 which means it’s a low-risk Group.  

Do you need to undergo treatment?

It essentially boils down to what I want to do.  At stage 2, I could just do nothing and hope it never develops further.  I can also go onto an active surveillance programme, where I’ll have regular PSA tests and MRIs/biopsies to monitor the development.  I could also have surgery and treatment.  I need to talk to a few people to get their views and also weigh the options for treatment and possible side effects.

A lot of men worry about having a prostate biopsy which may put them off prostate screening.  Can you outline what happens and how you found it?

Everything is explained beforehand, so you know what to expect.  The first part is a Digital Rectal Examination (DRE), where the consultant inspects your prostate to feel how enlarged it is.  You must get over the embarrassment factor – it’s nothing to worry about.  The next part is injecting the anaesthetic.  This is a little painful, a bit like when you have work at the dentist, but the pain very quickly passes.   The chair is like a birthing one with leg supports and it reclines.  At this point everything is on show, but you must remember why you are doing this – it could save your life.  The ultrasound probe to guide the biopsy is inserted into your bum – it’s about the size of a carrot and greased, so no pain.  The biopsy tool is horrible to look at, but didn’t hurt at all!  It clicks loudly when the core is taken, but the surgeon explains all this.  This part of the procedure takes about 20 minutes. I have had far more painful root canal work, but generally you have your clothes on for that!  The worst part of the whole procedure was having the adhesive film removed that was used to hold my scrotum out the way – the “wax” was free!  

The truth of the whole event is that of course you wouldn’t choose to have the biopsy undertaken if you didn’t need to, but it’s potentially going to save your life, so there is no choice.

How did you find the diagnostic pathway within the NHS? 

My GP was excellent, and I am lucky that they made the referral.  Other men might not be so lucky – we need NICE/NHS to recognise new tests sooner, so referrals can be made, and prostate cancer can be detected earlier.  My MRI was booked in quickly which was good.  After the biopsy, I was told that it will take 3-6 weeks to get the biopsy results (normally 2-3 weeks but it’s summer holiday time, so low staff).  I knew that if it was stage 1-3 my survival statistics would be good, but if it was stage 4 then it could just be months to live if it was aggressive.  I was very anxious waiting for the result.  Having to wait weeks for a result when I know it should only take about 5 days to get histopathology done is downright cruel and needs to be improved.

What changes do you think need to happen within NICE/NHS for prostate cancer?  

Despite prostate cancer receiving plenty of publicity recently, with Nick Owen, Bill Turnbull and Stephen Fry speaking out, the principles of testing haven’t advanced that much over the past decade.  There is no prostate screening program in the UK. You don’t get a PSA routinely through the NHS and you may still find it difficult to get one through your GP if you are asymptomatic and younger than 70. I also recently listened to a spokesperson from prostate Cancer UK say that PSA was still the best way to detect prostate cancer and that there weren’t any better tests available yet.  This is simply not true- we have found them and we supply them.  However, the NHS have not yet adopted them. In the UK, the average age for the detection of prostate cancer is 70.  This is much lower in the USA, which means we are simply catching it too late and things need to change.

Firstly, people with a family history of aggressive prostate cancer need to have genetic predisposition testing which will put them onto a regular screening programme from an earlier age.   

Secondly, there needs to be a national screening programme where men from 50 onwards have PSA testing plus other early detection tests which assess further biomarkers and give a better indication of risk, such as Proclarix or Stockholm3.   With better triage we can more effectively and efficiently utilise resources for mpMRI and prostate biopsy.  

The overall aim should be to drive down the age of prostate cancer detection into the 60’s and radically improve the number detected at stages 1-3 rather than 4, and so improve the survival rates.  

How can we make biomarker screening financially accessible if the NHS haven’t undertaken the tests?

CCL are working closely with the Graham Fulford charity, who regularly hold PSA testing clinics within hard-to-reach communities.  They have made excellent progress encouraging men to get tested, and this year they will undertake around 60,000 PSA tests.  We have been working with them to also offer Proclarix to men whose PSA is between 2-10ng/ml (the grey zone).  In the trial, Proclarix already identified one man with prostate cancer whose PSA was normal, so we are keen to implement it in all their clinics.  I have set up a Just Giving page “No Waiting – Time To Act” for the Graham Fulford Trust,  to help them provide subsidised Proclarix testing to men who need it.  The link for this is here:

https://www.justgiving.com/page/anthony-cooke-1693398127324

What message do you want to give to men? 

I want men to read this and if you are over 50, especially if you have a family history of prostate cancer, get checked!  No waiting - Time To Act! Don't just wait for your GP to invite you for a PSA test - it's up to you to get tested now! It could save your life.   If you can, please book in for a biomarker test.  Without Proclarix, my prostate cancer would not have been detected and by the time my PSA had elevated, it may have been too late.  

Take your health into your own hands.  No waiting – Time To Act!