As regular readers may know, in 2013 I was diagnosed with Prostate Cancer and in 2014 I had my prostate removed.  So far, so normal.

When I was released from the hospital the surgeon at Sheffield Hallamshire instructed that if my Prostate Specific Antigen (PSA) score ever went above 0.1 I was to be referred straight back to the Hospital.  In the years since I went from being tested every three months, to every six months, to once per year.

In September last year (2020) I went for my annual test at my local GP.  I was told that all was fine, but made the mistake of asking for the PSA score.  It was 0.2.  This meant that I would be sent back to the hospital, with Radiation Therapy and Chemotherapy being lined up.

Then the receptionist dropped a bombshell:  my score had been 0.2 in September 2019 as well.  They hadn’t worried about it as my local GP is subsidiary to Barnsley General and the Urologist at Barnsley General only asks for a referral if the score is 0.3 or above.  But, of course, I was treated at Sheffield.

This left me with a problem.  If my score had gone up, but had then remained stable at 0.2 for a year, what did that mean?  An online search found some interesting statistics.  Returning cancer should mean that the PSA score should double:  if it was cancer, every six months, but if it was an aggressive cancer, every three months.  My score had stayed at 0.2 for at least a year.  So was the cancer back, or what?  Confused isn’t the word.

Anyway, the doctor’s surgery referred me to Barnsley General.  After a long wait I had a ‘telephone appointment’ (this was in the middle of the Coronavirus Pandemic) where the Urologist at Barnsley explained that, if it was up to him, there was no problem, but as the surgeon had specifically stated a score of above 0.1 he had no choice but to refer me back to Sheffield.

There then followed another wait while the surgeon at Sheffield received the score and then sent me a letter for another telephone appointment.  Sure enough, when he rang he began talking about assessments and what treatment I would need to undergo.  I then pointed out to him that my score had been 0.2 in the previous year as well.  Cue the sound of some frantic page turning until he found that I had indeed had the same test score for a year.

To his credit, he immediately admitted that he was surprised and wasn’t sure what the score meant.  After all, if the cancer had really returned it should have doubled at least every six months.  After a year, the first score of 0.2 should have doubled twice to 0.8 if it was ‘normal’ cancer: to 3.2 if aggressive.  It was still 0.2.

The surgeon’s (understandable) response was to demand another test.  After yet another delay, where the hospital waited for me to get tested and I waited for the hospital to send me the forms needed, I eventually had yet another test.  A delay for the result to be processed, and the surgeon contacted me to tell me that the score was still 0.2.  His conclusion was that the cancer had NOT returned, and that the only explanation he could offer was that he had left a tiny piece of prostate behind and that this was causing the changing result.  However, as this was all unexpected, he asked that I have another test in around six months’ time as confirmation.  It was now April 2021, so I suggested that in September (5 months) I would go for what had been my usual annual test.  This was agreed, so began yet another wait without knowing what was happening.

In early September this year, after a full year of worry and stress, I went for yet another test.  After a delay of less than a day (thank you, Christine!) I received the latest result.  0.17.  It had actually gone down!

So I am now waiting for the surgeon to contact me.  I am unsure what he is going to say, but as the score has not changed since 2019 I don’t think that the cancer has returned.

So what is my take away from this?  It’s that urologists around the country should come together and agree a standard routine for prostate cancer patients, with referrals on the same test results, rather than one hospital worrying at 0.1 and another at 0.3 (and I believe other urologists only worry at 0.4).  Having different urologists giving different advice is confusing for patients.

One other thing is frustrating me.  I decided upon September as the date for my repeat tests in the belief that, should the score go up, I’d find out what was going to happen before Christmas.  It’s now over a year since the first news that the score had increased, so that plan was obviously wrong.  Obviously, things have been thrown into turmoil by Coronavirus, but this wait has not been good for my mental health.

Still, at least the fact that the score as gone down means that I may not have to go through radiation/chemotherapy.  When I first found at that I had gone to 0.2 in 2019, but hadn’t been told, and that the GP had thus waited for over a year before referring me, I was upset.  However, on reflection, I’ve been lucky.  Had I been referred in 2019 it is possible that I would have been sent for extra therapy, whereas now I am almost confident that the cancer has not returned.  Perhaps I should stop worrying about events over the past year and just count my blessings.