What to do
The experience
[When I got the news], I was told to go and speak to the local urologist. I had an appointment a week or so later.
He confirmed [with a DRE] that there was a tumour. He said, “I need to do a biopsy”. What sort, I asked. “I go in through the rectum and take samples through the wall of the bowel.” How safe is that, I asked. “There is a risk of infection,” he admitted. Where would you do it? At the local hospital.
My wife and I exchanged glances. We came home and talked about it. “What did you make of him?” I asked. “He’s old,” I said. “And how many of these does he do? And is he au fait with the latest techniques? I’m not comfortable with him. I think we should look at options.”
So we went online. Within minutes, we had a range of specialists in Melbourne. The one we chose was an Associate Professor at the Monash Medical Centre. There was a picture. He is a man in his late 40s, who had graduated with top honours and trained overseas. He was a specialist in robotics.
We booked an appointment. In person, he was charming and considerate. He explained that we would need a biopsy, but it would be a trans perineal technique, to minimise bleeding and possibly infection.
The biopsy confirmed a Gleason 7. Within a short while we had booked in for a radical nerve-sparing prostatectomy.
Some years down the track, I am convinced that ‘going up the tree as high as possible’ was the best way to deal with the challenge. You don’t want to take the first cab. Choose carefully.
(Rob)
What to do immediately after diagnosis
Your first reaction may well be horror. One man I know was “shattered”. He was 40 years old at the time, with a wife and three kids.
Expect to be shattered, regardless of your age.
There are two dimensions to a man’s situation at this stage:
- Working out what to do next in terms of the medical options
- Coping with the fear of knowing you have a potentially lethal disease
Find a counsellor. This will depend on a man’s personality and prior experience, but it is highly recommended.
As to the medical course of action, let’s look at that now. When you know there is a significant cancer, it’s important to do so something. But what?
When cancer is detected, and it is a serious and immediate threat to life, a man (and his partner) have to make some critical decisions. The most important of these is who to consult.
Your doctor may have referred you to a specialist – hopefully an experienced urologist or surgeon. But proceed slowly. Much will depend on who is going to attempt to cure the cancer.
The cancer will not kill you in days or weeks. As a top professor in the field has said, it has probably been there for months or even years. But you need to take it seriously.
My best advice is, as Rob says (the box to the right), to go up the tree as high as you can. You need someone who deals with prostate cancer on a daily basis. If he’s a professor, even better (he will be absolutely up to date with all the latest techniques).
Don’t trust in your local guy, who might do one of these twice a year. He’s a generalist. He doesn’t know enough. Get the best.
And while you’re waiting, make sure you exercise daily. And try meditation or yoga. You need to keep as calm as you can, while make all these vital decisions.
Sam, in his own words, on his experience with prostate cancer
In March 2018, I turned 40. My wife is a nurse. And she recommended that I have a ‘roadworthy’ – a medical roadworthy – cholesterol and blood pressure and all those sorts of things. I didn’t ask for a PSA test. The doctor did that off her own bat – she’s quite a proactive GP. We did the tests and everything was fine. But the PSA test came back with high figures … 4.66. She asked me a number of questions, like did I do a lot of cycling? I didn’t. She said, “Let’s do another PSA test, because it might just be an error in the reporting.” We did that. And it came back high again.
She referred me to the same person who had done my vasectomy. We had a conversation. There was no apparent reason [for the high score]. I had absolutely no symptoms at all. Then I spoke to a urologist. He did the [digital exam] check. He couldn’t find anything either. He sent me for an MRI. Unfortunately that came back with [signs of] a growth in the prostate.
This was just before Christmas 2018. The urologist called me. I remember I was in a bookshop in Melbourne. I came out onto the street and he told me the news. [Were you shocked?] Completely bowled over.
I saw him the next day, the 24th of December. He talked me through the options. Surgery seemed the most obvious thing for us to do. We did explore other things – we explored less invasive methods [such as radiation or brachytherapy]. One specialist at the Alfred [Royal Alfred Hospital] was doing a lot of studies around brachytherapy, but [the results seemed to be inconclusive].
We wanted to make sure we were getting one of the best surgeons we could. And certainly one using robotics [which we knew about as a good technique]. So on Christmas Eve, 2018, we were Googling people [to use]. And [our contact email] was picked up by [Professor] L in Melbourne.
Obviously one of the downsides of surgery is that it can impact sexual function, but Professor L was pretty confident, based on my age, that there wouldn’t be serious complications. And the likely effect [in our minds] of not removing it at this stage of my life was that that was a greater risk than any impact on sexual function. If we’d left it we were going to have months of not knowing [what was happening] – a really stressful period of time. But what’s more important – being alive or sexual function? I think being alive is more important. And it [erectile function] comes back – it’s not as bad as I had imagined.
So we made the decision. We saw Professor L on the fourth or fifth of January and I had surgery about the 17th or 18th. It took place at a big teaching hospital, with a [highly recommended] surgeon and [the use of the latest technique] robotics. He had done a huge number of [these procedures]. That was really a key factor for us! We pushed to have it done quickly.
It was removed, and it was removed cleanly. [The tumour] hadn’t left the prostate, fortunately. But it was a fast growing one. A Gleason score of 7. The tumour index of 7 – there were two of them.
[Sam’s wife:] From the outset, with Sam’s high PSA, everyone kept saying, oh, you know, it can be inaccurate [trying to caution us]. But the scary thing for us was that our normal GP had moved to another practice. Her view was there’s no way she would do a PSA on a man under the age of 50. So if we hadn’t have had that switch of GP no one would have asked for a PSA test.
So I had the surgery. In hospital for 48 hours, then back here [home] for a couple of weeks. I think I was only off work for probably three weeks.
Then I had my two to three years of regular PSA tests. It was every three months in the first year, then in the second year every six months. I was anxious for those first few and then after a time I became less anxious. They’ve all been negligible scores.
[After the op, how did you feel?]
The catheter thing was fine [but] having the catheter out was a bit of a challenge [minor discomfort]. Then I had to have pads, though that didn’t last long. You have scalable pads … to start with a really thick pad, then they get smaller and smaller. Just pads, not briefs.
Beforehand one of the things Professor L made sure I did was exercises – Kegel exercises. They were really good – strange to do [because you don’t normally think about pelvic squeezes] – but really beneficial to prepare you for what you need to do afterwards. A lot of urologists don’t recommend physio – they think well, my job is the surgery. Whereas Professor L was more holistic in his approach. The physio [work] was really useful.
My expectation was that post op the incontinence and sexual function thing [ED] would be a lot worse than it was. It [erectile function] came back pretty quickly. I think that’s mainly because of my age. I think it’s a very different experience to someone who is an old bloke. When I went into hospital and said I was born in 1978, one of the nurses said, “We normally have people that are 78, not people born in 78. I think because I’m young, my body could heal a bit quicker.
[And with the sexual function that came back within …?]
It might have been six months or so. I remember one of the things I got prescribed was Viagra. The response came quite quickly, but it wasn’t a useable response. But look, everything was a lot easier than I thought it would be.
[Sam’s wife:] I would say probably by 12 months, you were needing Viagra far less. It was surprising how you were getting a response [erectile function] without it. But it was really 12 months where we happily said we don’t need any more scripts [for Viagra]. I would say it was six months, by which time you had good erectile function. But in terms of actually been able to sustain it, it was probably 12 months where we were confident that we didn’t need it.
[So looking back over the whole experience, what would you say to anyone who read this account?]
There’s this big question mark about when you do PSA tests. It’s only when you get to 50 though, they consider doing PSAs. And even then it’s only if you have symptoms. I understand that it’s a risk-versus-cost decision that governments make. But if I hadn’t had a GP who had given me a PSA test, then what? … I had no symptoms at all. And I would probably have been too ill for simple surgery by the time I did have any symptoms. So I guess my story is – I think there should be a change in mentality – the PSA tests need to be considered for people who are younger … for people in their 40s.
Another recommendation is to be proactive about this stuff. There’s a lot of passive acceptance that what a doctor says is …it’s like he’s God. No, you can ask for second opinions and you should get the doctor you want and the specialist you want. You need to spend time on it to make sure you get the people that are right for you. People don’t understand the medical world. So they get overwhelmed by it. They just accept whatever they’re told. Be super proactive. Don’t take the advice you’re given [without thinking it through].