As someone who has had to live with a diagnosis of prostate cancer and its after-effects for the last 7 years, I have now reached the point where my frustration with the system has finally reached a tipping point.

To bring everyone up to date, in 2013 I was diagnosed with prostate cancer and in 2014 had a radical prostatectomy (complete removal of the prostate).  In 2015 I was released by Sheffield Hallamshire, but was told that if my PSA score exceeded 0.1 I would be referred back to the hospital.

So far, so straight-forward. 

Since then, I have had regular tests and have been given the ‘all clear’ until September this year (2020 –  a wonderful year all round).  I was informed that my score was now 0.2.  Naturally, I was devastated by this.  However, I was then informed that it had been 0.2 in 2019, but as Barnsley do not act until the score reaches 0.3 no action had been taken:  obviously, after 5 years the surgeon’s notes had slipped from peoples’ minds.

Confused, I asked what action – if any – needed to be taken, and it was agreed that the result would be referred to Barnsley.  Consequently, I received a letter informing me that, given the current health crisis, I would be receiving a phone call from the hospital. 

I had the call this morning, and it has reinforced my anger and frustration with the system regarding men and prostate cancer.

The urologist stated that as the surgeon had asked for me to be referred back to him if the score exceeded 0.1 he had no option but to refer me back to Sheffield.  

This would not be a problem, except that he also informed me that personally he would not take action until the score was at least 0.4. This was especially the case as my score had not increased from 0.2 for over a year. It is the ‘doubling rate’ that is most important in these cases: if the score doubles in 6 months, there are probably going to be problems, if in 3 months there are definitely going to be problems.

But the urologist’s reaction brings me to the core of my anger and frustration.

For obvious reasons I do not know what the system is like for women who have been diagnosed with breast cancer, but for men with prostate cancer the system is terrible.  My surgeon at Sheffield wants to see me for a score exceeding 0.1.  I know that for other hospitals the score has to be 0.3.  For Barnsley, apparently, the score is 04.

As a man suffering from cancer, the lack of consistency between hospitals/surgeons/urologists means that we are left confused and wondering where we stand.

I know that in some respects my situation is odd:  I was one of the first to go through the surgery at Sheffield and it is likely that in some respects I am a ‘guinea pig’.  In that case, my recall with such a ‘low’ score makes sense.  But I have never been informed of this level of investigation and am now left in the air yet again:  after a wait of nearly a month to find out what Barnsley wanted me to do, I now have yet another wait – of unknown duration – to find out if the surgeon at Sheffield is expecting me to go through further procedures or not.

I would humbly suggest that for anyone diagnosed with cancer such a situation is not conducive to mental health, instead resulting in confusion and worry.

As such, my message to the medical community with regards to prostate cancer diagnosis, treatment and testing is as follows:

On behalf of all men who have been/will be diagnosed and treated for prostate cancer, please get your heads together and come up with a system that is consistent across the country.  I accept that there will be special cases, but for these the patient needs to be updated and informed of any differences in his treatment and/or testing.  Having different parameters based upon post code/location is confusing, worrying and downright wrong.  It is hard enough to deal with what we know, never mind what we don’t know/aren’t told.  Consistency would at least help us to know where we stand and surely is the least that is necessary!

As it is, I now have a wait of unknown duration to find out what is going to happen to me. Bugger.