How Combining Treatments Helped Me With Advanced Prostate Cancer

The progress with treatments since I was diagnosed with stage 4, incurable (advanced) prostate cancer in May 2017 has been remarkable. But I was lucky to be right at the vanguard of one of them.

My initial treatment pathway

Initially, I had 28 days of bicalutamide, which was entirely standard care and used to prevent a testosterone flare. At the halfway mark of that 28 days, I started hormone therapy with a one-month injection of Prostap Androgen Deprivation Therapy (ADT). I then moved on to injections every 12 weeks.

At the time, I knew nothing about treatment options and just followed the pathway decided upon by my oncologist. That pathway was to add in docetaxel chemotherapy in August 2017. I now know that this is known as doublet therapy (ADT + chemotherapy).

I wasn’t scared of chemo, but it dictated how open I was about my diagnosis. I hated the thought of people seeing me bald and gaunt and having to explain again and again what was going on. So I made my diagnosis completely public.

How combining therapies led my PSA to plummet

Being a runner with running friends all over the world then resulted in a dramatic change of direction. My friends started bombarding me with messages about this new drug, abiraterone (Zytiga), a type of hormone therapy. It had shown great efficacy in a clinical trial called the STAMPEDE trial, which focused on people with locally advanced or metastatic prostate cancer. The trial found that adding abiraterone and prednisolone (a corticosteroid) to ADT could improve survival, compared to just using ADT alone.¹

I asked my oncologist about abiraterone. He thought it would be good for me and persuaded my private medical insurers to fund it. I'm glad I self-advocated for this, as abiraterone didn’t become available to a wider group of prostate cancer patients on the NHS until at least November 2025!

While still on ADT, I started on abiraterone plus prednisolone in June 2017. Over the next six months, my PSA plummeted from 129 to undetectable, where it has stayed ever since. As of my writing this, I am still on abiraterone plus prednisolone and ADT.

The anxiety of wondering if the treatment is still working

Anxiety and "scanxiety" became a horrible routine. Every 12 weeks for nine years, you go through the emotional roller coaster of being tested to see if the treatment has stopped working. This could mean the start of the end phase. I got so uptight about it. I couldn’t sleep, used alcohol as a mental crutch (don’t do that!), and basically fell apart about two to three weeks before each test.

Thankfully, the passage of time with zero progression has made things a bit easier, but it’s still tough.

What side effects I have experienced

The first major issue with abiraterone is that it can play havoc with liver function, which meant blood tests every two or three weeks. This caused huge anxiety. My liver AST count rose inexorably to 340, when the top end of the normal range is 40. This meant coming off the drug - which was working brilliantly on bringing my PSA down - for a few weeks at a time, and then going back on a lower dose.

Things finally settled down after a horrible four months and on a half dose. But it was an awful period in our lives. The other thing about abiraterone is that you take a steroid with it, which can have side effects of increased appetite, weight gain (not a surprise given the appetite), and moon face.

The physical and mental toll of side effects

Treatment side effects are awful to live with. I've dealt with a lot: losing body image, masculinity, the ability to perform sexually, libido, bone density, muscle mass, and body hair. Plus all my athletic ability as a good standard club runner. And then gaining man boobs, hot sweats, a ring of visceral fat around my middle, mood swings, and poorer mental health.

The side effects have been a real challenge, but not just for me. The impact on my wife and family has also been huge.

Then there’s the massive financial impact from selling business assets and property at the worst possible time for me. Plus an 80% fall in income when costs are going up. We’ve been forced to downsize our house because we couldn’t afford to keep or run the previous house anymore.

Reflecting on the importance of care standards

I don’t think being on multiple therapies has had a significant impact on me compared to ADT alone. But it has kept me alive and living quite well, and I’ll take that.

Advocating for my own care has become incredibly tiresome. I feel for those who are less able to do so, as they won’t get the best care.

The main thing I’ve learned in nearly nine years is that triplet therapy is now considered to be the standard of care, and it’s incredibly alarming that some men with polymetastatic prostate cancer are still not getting that quality of care!