By Dr Rhys Leeming
It’s a devastating moment when, after all your initial treatment and painful recovery and a seemingly miraculous cancer cure, you realise your prostate cancer has actually come back! It happened to me in April 2022. This is about my experience tackling lifestyle changes to combat prostate cancer return.
After the initial rush of adrenaline from that shock result and its consequent sick feeling subsided, a chill wind blew over my heart. Once again I feared the worst and dreaded the journey. Yet, if I step right back and look at the totality of my life thus far, it’s perhaps not as bad as I initially thought. I’ve survived all sorts of accidents and near misses in my 64 years and been in generally good health all my life.
A few deep breaths! Fuck it! I’m not giving in.
If prostate cancer is going to come back to taunt me, torture me and try to kill me, I may as well make the most of what’s left. I’ve decided that a better diet and more exercise will give me better mental health, happiness and resilience – whatever lies ahead.
So what do you do when your PSA starts to rise again? I am making changes to my lifestyle to reduce the likelihood of cancer getting its grip on my body again.
For starters, PSA can be detected analytically at very low blood serum levels. Anywhere between 0.01 and 0.05 ng/ml is the given detection limit by pathology labs. But in Australia (and elsewhere) the health system won’t recognise you have a recurrence of cancer after radical prostatectomy until your PSA reaches 0.2-0.4 ng/ml. That’s because such small amounts may not be cancer. It’s also because follow up diagnostics like PSMA scans can’t detect any cancer below those higher levels. And you can’t treat what you can’t see with our current conventional treatments.
[Editor’s note: The above numbers refer to PSA after surgical removal of the prostate. The measurement of recurrence is different if you still have your prostate and had radiation and/or hormone therapy as your initial treatment]
So it’s not until my prostate cancer has had a chance to grow 10 times bigger that I might be thrown into the turbulent waters of our health system again. Pushed and pulled by treatment criteria, choices and availability. Literally bamboozled by so many options, all with potentially bad outcomes.
In the meantime there is a lot that I can do to improve my chances.
The first thing that helped my mental health after this second diagnosis was a determination to take as much control of my future as I could. I spent several days in frantic and often depressing research. Then my mind cleared enough to realise that if I improved my current health with better diet, more exercise and perhaps a few targeted supplements, I would
- Feel and be healthier,
- Be able to withstand any future treatments better,
- Most likely improve my mental health and happiness,
- And there was at least a remote chance I could slow or even stall the cancer growing in my belly again.
And if #4 didn’t work out, I’d still be better off than before.
What I didn’t expect was just how much better “overall” I would feel from eating better and consequently dropping some weight.
Why, oh why, didn’t I do this sooner?
Lifestyle changes: the strategy
I won’t bore you with too much detail, because it’s not rocket science. We all know what we should not be eating. And a just moderate amount of research soon indicates basically what things we’d be better off eating. Nevertheless, some of the salient points in my journey might just help someone else, so here goes with my lifestyle changes:
- More motivation
- Healthier diet
- More exercise
- A measured approach.
I felt my motivation was now existential. And that is a very powerful motivation. Not only do I not want to die just yet, but I don’t want to die without a real fight first. The better, more healthy I felt, the more that motivation was reinforced.
I also decided early on that the changes to my diet and lifestyle didn’t need to be undertaken in one fell swoop. Rather than think I could do everything all at once, I decided to make substantive but measured changes over months. Tracking weight, wellbeing and regular blood tests help optimise my lifestyle changes. This data dashboard also helps me accept these changes as permanent. It helps that I am now entitled in our health system to these tests, such as lipids, glucose, PSA etc.
I had cut out red meat from my diet and had eaten a pescatarian diet for nearly 12 months beforehand. See the photo for my self-caught fish. This was all thanks to my environmentally aware teenage son and girlfriend: they choose not to eat red meat. We were eating with them most nights. I got sick of cooking two separate meals so we just ate less and less red meat. I was already part of the way to healthier eating.
Controlling sugar intake definitely gives you the best bang for your buck. I immediately cut out all the free-and-easy sugar out of my diet, like chocolate milkshakes, sweet biscuits, ice cream etc. I cut down on frequency, portion size and type of other carbs. But this was not a radical change, just a partial reduction. Within 3-4 days I felt vastly better. A quick win!
I cut out dairy and switched to soy milk for coffee etc. This was my biggest wrench because I love cheese and dairy foods. I tried some non-dairy alternatives which were just complete shit and probably as bad for you with a different variety of saturated fat. So I have just opted to accept this particular sacrifice and instead to snack on different things. Now I eat olives, nuts, and non-dairy dips like hummus and pesto.
Next, I found a nutritionist to help me along with the finer points. There’s so much stuff on the internet………after all, with all the information on the net, what can you trust? And how much time are you prepared to spend validating what you come across? The nutritionist was able to quickly summarise what I needed to be doing. He also suggested a regime of supplements that might potentially be beneficial. A good example of his sensible advice was, “cut out dairy like milk, cream and cheese. But it’s not worth completely cutting out small quantities of butter and yogurt because they already have negligible amounts of the animal immunoglobulins that you want to avoid in milk and cheese”.
The common themes of a “cancer diet” are
- decrease your insulin resistance (common as you age and over indulge) by eating less sugar
- reduce inflammation throughout the body by getting your lipids into a better balance
- make sure you have plenty of vitamin D and other inflammation reducing herbs on board
- get plenty of exercise.
I slowly replaced more carb heavy foods with more protein enriched foods. Crackers made from seeds rather than flour are a good example. Eating hummus with papadums is another. Virtually no change in enjoyment, but shifting away from too many high glycemic carbs.
Increasing regular exercise
My nutritionist said,
“you can make all these dietary changes, but the very best thing you can do about your cancer is to exercise”.
I like exercise and have always done a fair bit. But it’s hard work as you get older and difficult to maintain high levels long term. But I felt it was just a case of prioritising this very important part of the strategy. So I set out to slowly double my “formal” exercise.
Walking has got to be the number one exercise. You might not burn as many calories, but you are much more likely to do it and also to enjoy it. Taking this quick win gets a health benefit that in turn leads to interest in other types of exercise. We walk our dogs for an hour 4-5 times a week up hill and down dale, in the dark, in the heat, the snow, the beach, whatever! Because of the hilly terrain near our house, we get a pretty good work out.
That’s the easy stuff. I also do 3-5 Bikram yoga sessions each week which take 90 minutes each and are conducted at 40 degrees Celsius, so these are actually a significant workout. Yoga of any sort is just incredibly good for your balance, strength, flexibility, cardio and sense of calm. I add in 2-3 x 1500m swims a week and a 45 minute round of AFL footy on a Friday. So I’m generally getting through more than 12 hours of good exercise every week and feeling pretty damn good as a result.
Whatever you can manage is better than nothing, that’s for sure.
Mental health and support
The dietary changes and all the exercise really underpin the potential for a better mental health space to make the return of prostate cancer just a little less likely.
And you still need to get your head in the right place and keep it there. When I was first diagnosed I had so little support. This time round I have found my support network is quite extensive and it’s an enormous help and comfort. I can’t emphasise enough how important this aspect is to coping with ongoing cancer.
And lastly, it’s a huge help to make the internal acknowledgment that “it is what it is.” That worrying about my cancer is a waste of time and effort. I could worry about it for years and then die of a stroke. What’s the point? So I am learning to just accept what is. And live life now, not next week or next month.
Doing what I can. Sharing experience
I hope all this doesn’t sound too sanctimonious. As I said at the start, I feel like this is an existential threat and I’m simply too shit-scared to do nothing. For me, a little control goes a long way. I hope my lifestyle changes do combat the return of prostate cancer. And I hope a little of my story inspires an increase in health and happiness for someone – no matter what the circumstances.
Hi Rhys. Sorry to hear about your PSA rising again. Thanks for this update and excellent record about how you’re working at beating it. The one thing you don’t mention is what your PSA has risen to? Can you tell us what it is now? Ross Handley. 4 years since my RP removal now. 😀
Hey Ross, Yeah, the detection limit for PSA down here in Hobart is 0.03 ng/ml (or ug/L), so up until April I was getting “below detection” results. In April it went into positive territory at 0.04 ng/ml and that’s when I started this new phase of my journey. Just had a 3 month follow-up PSA test in mid July and it was still 0.04 ng/ml. So I am encouraged by that…..not out of the woods at all, because 3 months is not very long, but encouraged. It does mean a couple of things. The initial pos result wasn’t machine error….the rise is real. But it also indicates that either my lifestyle intervention has helped suppress any rise (for now???) or that my cancer isn’t too aggressive. So either scenarios are positive outcomes. No choice but to soldier on, eh?
Hi Rhys, Thank you for your wisdom and advice on taking care to maintain our health as best we can to fight cancer or its recurrence. I’m very sorry to hear that your PSA has inched up a bit, but encouraged by your proactive fight to keep it in check.