Squeaky Bum Time: Monitoring My PSA Levels
Here in the UK a famous soccer manager, Sir Alex Ferguson, labeled the end of the soccer season “squeaky bum time:” that point in the season where everything was very tight and every match matters, while the players and fans nerves jangled.
Well, I’ve just been through my own squeaky bum time, and it never gets any easier!
I was diagnosed with stage 4 incurable prostate cancer in May 2017, aged 60. They think I’d had the cancer for 10 years, during which period I’d had no symptoms.
PSA levels well above normal
The prostate produces an antigen, prostate specific antigen (PSA), into the bloodstream, and the normal level for someone my age was 4. Mine was 129! I’ve since learned that higher-than-normal PSA levels are not necessarily an indicator of prostate cancer, and that a low level doesn’t mean that a man doesn’t have prostate cancer. Yes, it’s all very confusing, isn’t it?
I’ve also learned that monitoring PSA levels, aka squeaky bum time, is vitally important once you are in the prostate cancer club.
For men who have curative treatment, such as prostate removal, post-operative PSA levels increasing usually means that some rogue cancer cells have been left behind. That requires further treatment, such as salvage radiotherapy, to try to wipe out those cells.
For some men who’ve had curative treatment, regrettably, their cancer can return many years down the line, and this would usually be detected by rising PSA levels.
Watching for rising PSA levels
For those of us unlucky enough to have incurable prostate cancer, our lives are ruled by PSA tests, often every three months but sometimes at greater intervals. A rising level means that our current treatment lines are starting to fail, and that’s why I call these, in my case, three-monthly tests, my squeaky bum time.
Anxiety levels start to escalate from about a week before. Sleep patterns are disrupted. It’s hard to lead a normal life, such is the fear of cancer progression/treatment failure, knowing that there are not that many lines of treatment in the future at the moment.
Since my diagnosis I have been treated with Prostap androgen deprivation therapy, as well as Abiraterone. The two drugs between them basically stop testosterone being produced, starving the cancer of something to feed on.
You are warned at the outset that this cancer is a very crafty blighter, indeed, and there will be rogue cells lying dormant in your body that will eventually find a way of growing without testosterone, and then the cancer progresses. This is what squeaky bum time is testing for. Has the pesky PSA level started to rise because those rogue cells are feeding again and growing?
I’m pleased to say that I recently went through squeaky bum time, and my PSA level remains undetectable. You really can’t get better than that!
Looking toward the future
I had that difficult conversation with my oncologist about what my future trajectory looks like and got the stock answer, “I have no idea!” However, he did go on to say that most men on the same treatment had started to see progression within three years, and I was therefore doing very well. But, more importantly, the fact that I was doing so well on this treatment line means that I’m likely to do very well on future lines when this one fails, as it inevitably will. That was very comforting to hear.
Living life to the fullest
The most important message that I have to take and would advise other men to follow is to live life to the fullest while we are fit and well enough to do so. If we spend our lives panicking about squeaky bum time and live for many years, we will have wasted a good part of those years not living life to the fullest.
I heard a wonderful quote recently: “Where focus goes, energy flows.” If we focus on living, that will be our focus, and that’s where the energy will flow!
However, if any community members have any tips or advice about how to deal with anxiety levels in the days immediately before squeaky bum time, do please fire away. I’m all ears!
Do you feel heard and understood by your doctor?