The diagnosis & the decision

Getting a diagnosis of prostate cancer is a surreal experience. You transition from a normal healthy person to a cancer patient in the space of a single phone call. You then get the gory details in a follow up visit to the urologist. 

In my case the diagnosis was 7 out of the 13 cores were cancerous, primarily in the anterior of front of my prostate.  This gave me a 'Gleeson score' of 7 (3+4). The Gleeson score is an odd one, apparently most prostate cancers contain two grade of cancer cells and so the Gleeson is a combined score.  The two numbers indicate the primary cancer grade and the secondary cancer grade, so a Gleeson of 4 + 3 is a little worse than a Gleeson of 3 + 4 as there is a greater percentage of more dangerous cells.   

The urologist told me that Gleeson was an old scoring system and that nowadays they use a newer grading system that starts at 1. With this methodology my cancer is an intermediate grade (2/5) cancer, but everyone else I have spoken to only refers to the Gleeson score anyway so I think this has yet to catch on.

I also underwent a PET scan, which is a Computer Tomography scan similar to an MRI but using different technology. For this one a radioactive tracer is injected and then you lay in a long tube whilst sensitive detectors pick up how the tracer material is moving through your body. It's not as spooky as an MRI as it's not a whole body insertion, but it does take longer as you need to let the tracer spread for an hour or so before being scanned. The good news was that the PET scan showed that the cancer was localised to my prostate and hadn't spread to the surrounding tissue. 

One of the odd things with intermediate grade prostate cancer is that you then have a choice. We've all heard stories about people going into hospital for a routine scan, a dark spot being noticed by an eagle eyed radiographer or doctor and then immediate surgery. But intermediate prostate cancer isn't like that - you get to choose how to approach it. The three major options are - 

• Active Surveillance. Just keep an eye (and finger) on it, do regular blood tests and rectal exams (every three months or so) and if the PSA levels start to rise then do something about it. This is generally the approach for Gleeson 6 cancers or for if the patient is old or infirm. 
  
  
• Radiation therapy. Use radiation beams (applied externally) or pellets (embedded close to the prostate) to kill of the cancer cells.
  
  
• Surgery (aka a Prostatectomy). Take out the prostate entirely, hopefully removing all traces of cancer with it.  

This choice is both good and bad as it leads to second guessing and a fear of making the wrong decision, and the waters are muddied further by some research which suggests that the latter two can have more damaging side effects than the cancer itself. 

There is a lot of info out there on what the best choice is but it is very dependent on your personal situation. I would suggest reading around and if your urologist is a surgeon, getting a second opinion with a radiation oncologist to look at the alternatives. I won't try to summarise the pros and cons of each option because (as you may have seen earlier) I am not a medical professional but the sad truth is that there are no great outcomes, in the short term at least. You will leak in unfortunate ways and some important things may no longer work. 

In my case the suggested outcome from both specialists was that surgery was by far the best option. This was because - 

• Active Surveillance would be difficult with an anterior tumour as it is harder to feel from behind, plus my PSA levels had jumped fairly suddenly which suggested a faster growing tumour. 
  
  
• Radiotherapy is generally not recommended for younger people as it does not remove the cancerous cells, just kills them off, and so there is a risk of later remission 
  
  
• I am relatively young and fit and so have the best chance of bouncing back from surgery. Plus it is over and done relatively quickly and once the prostate is gone, there is a much lower chance of the cancer returning.          

Incidentally I recommend getting a 'cancer notebook' when you start this journey as you get a lot of information in each visit and it can be hard to remember it all. I jot down key questions before I go in, make notes on those questions and then sit down with a coffee afterwards and rewrite the info in a more meaningful way for future reference. It won't make a difference to how you are treated but it is useful when you want to refer back or for those dark times where you start interrogating Dr Google.