One man's prostate cancer experience
This website does not give medical advice - it is a reference only. Please consult your health care practitioner.
Disclaimer: This is not an 'official' website, nor does it give medical advice.
I'm John. This website shares my experiences and opinions relating to prostate cancer. It is not intended to provide medical advice or replace consultation with qualified healthcare professionals.
The Bombshell
May 2025: I exchanged annual birthday emails with an old friend in the UK. He ran me through his year of fun, travels and grandchildren, and then mentioned 'the bombshell'.
Since we'd last spoken he'd been diagnosed with an aggressive prostate cancer and had his prostate removed. He was still recovering and training his pelvic floor muscles to regain some control of his bladder.
He urged me in big red capitals to get my PSA checked ASAP.
Elevated PSA result
and subsequent MRI and biopsy
I normally had an annual PSA test along with a round of other blood tests connected with my statin prescription, and generally being an old geezer of 68.
However I had missed one or two tests due to a changeover of doctors. And my complacency in not chasing things up. I hadn't had any blood tests for a couple of years and thought nothing of it.
I got a new doctor and she sent me for blood tests straight-away. My PSA was over 5 where normally it was around 3. My doctor treated this with urgency and made a physical examination immediately. Apparently my prostate felt normal and was a normal size. She said I should have an MRI scan, and in consultation with my doctor I requested to go privately for the MRI. I didn't know how long the NZ healthcare system would take so I went private in order to get onto it ASAP.
But first I needed a referral from a specialist, a urologist. I was subsequently contacted by a urologist to make an appointment. At this appointment I was physically examined again and then referred for an MRI. It was explained that it was unlikely that I had cancer.
So far this all happened fairly quickly - within a month of the elevated PSA result.
The MRI showed a PIRADS 3 Lesion in the left lateral mid gland. According to my urologist, a raised PSA and lesion showing on the MRI meant I had a 30% chance of prostate cancer.
The next step was a biopsy. Done in an afternoon at a private clinic.
As a footnote to this section: make sure you get an electronic copy of your MRI scan in case you need to get a second opinion or go overseas for treatment. More on that shortly.
You have prostate cancer
Active surveillance
At my next urologist meeting after the biopsy my wife and I were told I had prostate cancer, and were given options and more statistics.
From the perineal biopsy the histology showed ISUP group grade two in two of four cores over 6mm from the mid part of the prostate. It was explained to me that this is a favourable intermediate risk prostate cancer. Although I didn't see what was favourable.
My treatment options were a choice between active surveillance or treatment. The treatment that was explained to me was the choice between surgery or radiotherapy (inserting radioactive 'seeds' in the tumour/s). Both have the potential for significant side effects. Incontinence and / or impotence. Known in urological circles as QoL, Quality of Life. Radiation can also degrade bowel functionality after an initial period.
Active surveillance involves having three monthly PSA checks and a review in six months, and a repeat biopsy usually at about a year. After this period, MRIs and biopsies are interchanged as the follow up plan goes.
I was told that overall, of men who go on to active surveillance, one in three will come off active surveillance, either because of a change in the cancer or they can't cope with the 'psychological issues' related to 'having cancer'. That last point seemed a bit harsh.
Further statistics: of those who come off active surveillance, one in three probably would have been better to have had treatment earlier. Overall, 8 out of 9 men do very well or have no issues from the active surveillance. The numbers didn't really add up.
So surgery and radiotherapy seemed a bit premature as we didn't know at this stage whether the cancer was growing or sitting benignly in my prostate with no plans.
Given I was still in the 'rabbit in the headlights' early days of my cancer diagnosis I said I'd think about my options. The statistics I'd been given to do with the outcomes of active surveillance were all a bit mumbo jumbo. And given I had cancer when there was only a 30% chance of it meant that I was going to take these numbers with a pinch of salt.
My next PSA test and follow up meeting with the urologist was in three month's time.
Three months to think about my options
Focal therapy: HIFU (High Intensity Focussed Ultrasound)
Out of the blue we saw ex UK prime minister David Cameron in the media talking about having his prostate cancer completely removed by a focal therapy. We looked into it.
In a nutshell: Focal therapy for prostate cancer is a minimally invasive treatment that uses various types of energy (like heat and cold) to target and destroy tumour cells. Heat from high-frequency sound waves destroys tumour cells. HIFU (High Intensity Focussed Ultrasound) treatment is not available in New Zealand - hence not being offered the option by my urologist I guess. However, in hindsight we were surprised that the procedure wasn't even mentioned in passing as an option available overseas, if you can afford it or have or insurance (some insurance will cover it but not all).
The procedure aims to keep healthy tissue intact and can have fewer side effects than radiation or surgery. Cancer that hasn't spread outside your prostate and has a low risk of spreading might be treatable with focal therapy.
I have crudely summarised several explanations of focal treatment here into a couple of paragraphs - do not rely on what I say, please do the research yourself.
We researched the procedure and contacted several clinics in Australia, the nearest country where this procedure is available, that offer the HIFU procedure. One clinic responded immediately and the reply came directly from a urologist, rather than admin staff. Another clinic replied a week or so later, and the third never replied.
I forwarded my NZ urologist's report to the first respondent. I got an email back straight-away saying:
From the Urology reports you have a small cancer in the left mid posterior prostate with GS 3+4=7 on biopsy.
I will review your MRI images online when available, however you look very good for Focal HIFU ablation.
HIFU works very well for cancers like yours close to the rectum well within the focal range of HIFU.
I would treat the cancer you have now with minimal impact on your QoL, recovery in 2 weeks, then remain on Active Surveillance with your Urologist in NZ.
HIFU does not exclude you having surgery or radiotherapy later in life if ever needed, and gives you peace of mind the cancer you have now is not progressing.
I have treated a few men from NZ so I'm sure you can speak to one of them about their experience coming to Melbourne etc.
I subsequently emailed a link to my MRI files stored in the cloud.
Our initial impression of the urologist was of a very warm and friendly man. Full of empathy and experience. He gave me the number of a man in NZ (he was great - thanks!) that he'd treated over a year ago who would be pleased to talk to me about his experience.
We committed. The urologist emailed an estimate of charges for the whole package (urologist, hospital and anaesthetist) which was very approx $AU 22,000, and we paid by bank transfer just over a week before the due date of the operation. That price was just for the medical expenses - travel, subsistence and accommodation are additional.
During our research we heard that some men from New Zealand had been covered by their insurance for HIFU in Australia. You'll have to check with your own insurance provider.
There was a subsequent video call with the Australian urologist. This was extra to the package price.
Subsequent urologist meeting
At the end of the three months I had another PSA test (a tad lower at just over 5), and a visit to my urologist to talk about our decision that I should go to Melbourne for a HIFU procedure.
The harsh point I mentioned earlier is worth pondering. Knowing you have prostate cancer and wondering whether this is one you die with or die of is never far from your mind. The thought is there in the back of your mind all the time, and quite often comes to the fore. A friend described this as the elephant in the room.
In response to my saying that I was going to to Melbourne for HIFU treatment my urologist said:
"Yes they do that in Melbourne. It's a new unproven treatment." (It's not, it's been around since 2005) As we were leaving he said, "It won't get the other 5 or 6 spots of cancer that you have (that hadn't been mentioned in earlier meetings). You won't be able to have any other type of treatment after".
We were quite taken aback then, and still are, by what seemed like an unprofessional, school yard response. All that was missing was neeeener neeeener neeener.
The urologist thought I should stay on active surveillance. But HIFU isn't available in NZ, so of course active surveillance is better than operating or radiotherapy, given the potential for side effects, when the cancer is small and not looking aggressive.
If I stayed on active surveillance and suddenly the cancer got aggressive and spread, then there would only be the choice between the knife or radiotherapy. Anyway, decision made.
We drew the meeting to a close and (paid) and left. We talked about the meeting all the way home and wonder what we missed or whether we'd misunderstood or misinterpreted what was said.
Had I slipped up and said I was seeing a homeopathist in Australia instead of a urologist?
Final comments
and then off to Melbourne
In consideration of the four points made by my NZ urologist:
1) Indeed the procedure is offered in Melbourne, and lots of places. It's available on the NHS in some areas of the UK.
2) HIFU has been around for over 30 years. There's plenty of evidence to say that the therapy works. You'll need to look the data up for yourself, however here's a link to a report on the BBC News website to get you started:
Focal therapies Targeted prostate cancer treatment cuts risk of side effects, study suggests
3) The other 5 or 6 spots - that was big news to me. More on that later.
4) Yes other procedures are possible after HIFU, including a second round of HIFU if the need arises.
Again there is no medical advice being offered here, just the notes from my experience of dealing with my prostate cancer.
I did have a conversation with the New Zealander who had been treated by my Australian urologist before proceeding. He'd had the procedure nearly 14 months previously. His PSA was now down around 1. And he has a great quality of life. Yes one reference is hardly scientific but it was nice to hear how the treatment went for him, and to hear his experience and observations.