Doctor Steve Allen  Presentation -  July 23 2020: 

'What has changed 10 years on from my diagnosis, and treatment pathways'

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Tackle Patient Representative

I was diagnosed with prostate cancer at the age of 59.  I could have been diagnosed earlier, but I had studiously ignored my classic urinary symptoms for nearly 2 years.  My PSA had consistently been at the upper limit of normal for around 6 years before I decided to go and get some advice.  It came as a great shock that, instead of my expected diagnosis of benign prostate enlargement, I was told I had a cancer.  I felt extremely guilty that I had potentially left things until it was too late.  My decision to undergo surgery was a ‘no brainer’ – “I have a cancer, let’s just get rid of it!”  The long term outcome has been good in that my PSA levels remain consistently low.  However I have been plagued by virtual total incontinence of urine and severe sexual dysfunction.  The former has been helped by surgery; the latter has improved somewhat with time.

To my great embarrassment, I am also a retired doctor.  At the time of my diagnosis I was a consultant anaesthetist who had worked alongside the urologists in my hospital for over 25 years.  I, indeed, should have known better but I can understand why many men at times are reticent to go and seek help.  Being a doctor obviously helped as I could understand the ‘long medical words’ but in no way prepared me for the experience of being a patient with prostate cancer.

By today’s standards I have probably been over-treated.  To be regretful or angry about this is totally non-productive.  I am now closely involved as a volunteer with Tackle and with Prostate Cancer UK.  I see working with both charities as being a symbiotic relationship and certainly not competitive.  Both have the same objectives for men and their families affected by prostate cancer. Through my work with them I have gained a huge amount of knowledge and understanding from the experiences that many people have shared with me over the past years.

A year ago I was asked to take on a role as a patient representative for Tackle, including involvement with such national bodies as NICE and the National Prostate Cancer Audit.  It can, at times, be a daunting task.  At one end of the spectrum is a need to understand the often complex and frustrating ways in which government bodies and the pharmaceutical industry work.  However, my most important objective will always be to ensure that the voice of the patient is both heard and taken notice of.  I may not always be able to speak from personal involvement concerning a particular drug or treatment but can always reflect the experience and opinions of those men with whom I have already met and will continue to meet in the future.  It is a role which carries a significant degree of responsibility but also one which can result in huge rewards for the people I try to represent.