Fighting Stage 4

It’s taken me some time to get to the place to share this.

When I wrote Managing Prostate Cancer as a Chronic condition – Fighting Stage 4 I was about to embark on a process of SABR radiotherapy on two metastatic spots of cancer growth that appeared to be progressing despite my Androgen Deprivation Therapy and Hormone therapy.

In short, it seemed that some of my cancer cells had become castrate resistant – i.e. evolved beyond hormone control.

That was always going to happen eventually, given my the aggressive nature of my cancer (Gleason 10), but it was disappointing to have developed within months of returning to work.

As part of my Above Average attempts (Can I get “above average” with Prostate Cancer? – Fighting Stage 4) I was also focusing on my physical condition, training for the London marathon and ticking off some of the cardio related goals.

So the plan became “whack-a-mole” – a metaphor that my Oncologist admitted was apt. But then she used a metaphor I didn’t like: this could just be the tip of the iceberg.

So we committed to a series of radiotherapy, on a spot in my spine, and a spot in my iliac wing. I am fortunate to have private medical as radiotherapy is not routinely done on these spots but there is a growing base of evidence that radiotherapy on metastatic spots can improve disease free survival. So I was due to have a series of focused beam therapy (SABR) on my spots.

There was a a slight hiccup when they targeted the wrong vertebrae, causing a little delay to my first ski holiday with the kids, but the treatment passed without relative hiccup.

So I felt positive.

But I had a routine blood test during the time of the treatment. My PSA continued to rise. From 1.38 to 2.73. Almost doubling, in a month.

There has been a lot of stuff in the press about the accuracy of PSA but in my condition, that rise is not good news. (Whatever you may read, a PSA test could still save your life if you get one early enough, so go for it, I say.)

Still, there was a hope that it would continue to fall once the radiotherapy kicked in.

It didn’t. Next test result was 2.73.

Building into the marathon I was hit by the triple whammy of meds related fatigue, radiotherapy fatigue, and the fact that my treatment and everything I was doing, just didn’t seem to be working.

Then Anna was struggling with a knee injury – wrong shoes at the beginning of training, which had been delayed due to family illness, leading to a connected injury, and eventually she was crying on even a short training run. Despite intensive physio, we took the decision that our dream of running the marathon together just wouldn’t be the same if she was in pain for 5-6 hours (if we could even manage in that with her hobbling).

I lost my way a little in those last few training runs until I realised I was beating myself up too much on a time – I was trying to beat a time I had set 15 years earlier to prove that I was beating cancer.

The hard truth is, I wasn’t beating it, and my mind was dwelling on that.

So I reminded myself what my goal had been – during chemo I couldn’t walk to the statue in Windsor Great Park. Now I had run around it. I had run to Windsor from Maidenhead and even made it to Marlow after one disastrous run where I hadn’t planned the route properly. I had improved, even if I couldn’t hit the milestone.

The marathon story is for another post.

The PSA continued to rise, up to 3.76 just before the marathon. Not the pep talk I needed, but I had already made my peace on the run.

So I went in for a CT PSMA scan – which identifies the activity of the cancer cells, a more focused report than the PSA look-out system.

It showed that the spots that had been hit were responding, but the oncologist (as is so depressingly the case) had been correct: I was heading into a larger ice-berg.

Unlike the Titanic, I was fortunate to have an early warning system – I get monthly PSA checks now as part of my medication, whereas on the NHS tests fall to 3 monthly.

But now we’re onto more systemic treatment. Looking for the next option: Lutetium 177 is the recommendation, apparently better quality of life than chemo, but it carries significant issues – required isolation from the kids, my whole reason for any life.

I’ll maybe write more on that soon.