Overcoming Prostate Cancer: A survivor & his wife tell their story | Prostate cancer nurse expert advice | Podcast Interview Part 1
20th August 2019
Listen to the 1st part of a Gippsland FM radio interview by Les Hunt who talks with Alan White, prostate cancer survivor. Alan shares his personal experience of being diagnosed with low risk – then later – intermediate risk prostate cancer. Alan is candid about his treatment and the side-effects including the impact on sexual function; and the challenges he has overcome. Alan’s wife, Fiona, shares her experience about the impact of the diagnosis and decision making. Leanne Prosser, prostate cancer specialist nurse also offers her insight and advice.
Of all the cancers, prostate cancer diagnosis – particularly low-risk – creates more anxiety around decision making… your money or your life sort of stuff…because as we talk about Dr Google, there’s so much unhelpful…dangerous…and not evidence-based information…and that’s what you want, evidence-based.
Natalie: Hello and welcome to Navigate Prostate, providing information and insights for people affected by localised low-risk prostate cancer, which is early stage and slow growing. Hi, my name is Natalie Richards. I’m a research nurse, at Peter McCallum Cancer Centre in Melbourne. Getting a cancer diagnosis can be really overwhelming, and it’s sometimes hard to work out what information you can trust and whether you are making the right decision. I would now like to share with you the first part of a radio interview by Les Hunt on Gippsland FM, who spoke with a member of our research team about his personal experience of being diagnosed with low-risk, then intermediate-risk prostate cancer, on what advice he would give to men faced in a similar situation. He talks in a very down to earth and easy to understand way. His wife is joined with him along with a prostate cancer nurse who offers her insight and advice.
Les: Good morning. Welcome to ‘For your information’. My name is Les Hunt. I’m joined in the studio by a survivor who’s written a book and his book’s called ‘We’ve Lost My Prostate Mate and Life Goes On’, and he’s Alan White, who joins me here this morning. Good morning, Alan
Les: How are ya.
Alan: I’m good.
Les: That’s good. Alan’s wife has also come along and I’m delighted to welcome Fiona. Morning, Fiona.
Fiona: Good Morning Les.
Les: And over behind the computer screen that I can’t see is Leanne Prosser, who’s the prostate cancer nurse from Latrobe Regional Hospital. Morning Leanne.
Leanne: Good morning, Les.
Les: What seems to be this theme that either men don’t want to know about it or don’t want to talk about it or don’t know and don’t seek out the diagnosis stage or the early stages. How did this all come about?
Alan: Well there is a bit of a story, as you know in the book, so my initial diagnosis was in 2000, I moved back to Melbourne. That time in 2000 like as soon as the prostate cancer diagnosis, out comes your prostate. And my initial reaction was ‘No, it’s not’. I need to think about this and deal with it and I was able to make changes in my diet and other things that I did. And eventually at the 11th hour, things turned around, things that were changing in the prostate, basically. So I went on to active surveillance, active management for 10 years. I was able to maintain it.
Les: And what did that mean?
Alan: What that means is you have regular blood tests to check for the Prostate Specific Antigen, which is a indicator that there is something going on in the prostate. And I think it’s important for men to realise that if this PSA goes up and down, happens through men’s life cycle for a number of reasons. So just because it’s high on a particular day and a blood test does not indicate you’ve got cancer, and Leann will probably jump here at some point about this. But it’s just an indication that the prostate is changing. And look, to be honest, you can have a higher PSA if you’ve got a larger than normal prostate size, because it’s bringing out more PSA. You may have had – Well, let’s say – Well, you could have been intimate with your wife or partner two nights before, so that will stimulate the prostate, that goes up. You may have an infection – that will push up the PSA. And sometimes and some of my men, some of the men in my group that I’m involved with have a higher than normal PSA, but everything else is okay. There’s no cancer per se. So it’s an unknown quantity.
Les: So it’s not a definitive test. It’s an indicative.
Alan: It’s an indicative test, and that creates a lot of angst in the stakeholders of men’s health who claim that you shouldn’t be doing it because you get false positives etcetera etectera. I get annoyed with that because it’s an indicator. There is something going on and it gets you to look after your health a bit more. It gives you a baseline to function from to operate. It’s like getting your cholesterol done every 12 months or your blood pressure or getting your glucose checked.
Les: So what happened in the 12 months? I mean, I understand under active surveillance, and so that means sort of constant monitoring and measurement. What happened in that 10 year period?
Alan: What happened in that 10 year period? Well, life stresses on the system. It was pretty low. The PSA had stayed very low. I’m talking about the 1.0. Sometimes it dropped below that, sometimes it went up a little bit. So with the PSA testing, I also saw my urologist, every 12 months. He did the digital rectal examination, which some blokes get a little very funny about. But the gland was always soft, so there was no other action. So besides that every 12 months and the blood test, that was my active surveillance and looking at my diet and health and wellbeing. Again, you know, it’s slip up here and there. And then, late 2010 around to see about my blood test the PSA was sitting at 1.9, which is not high for a man of 60. I think Leanne will confirm with that.
Alan: You know, most doctors go, you find off will go. Went and saw my urologist, he did the digital rectal examination and the gland was firm. So there’s something that happened in that 12 months. It was decided to have a biopsy in January of 2011 and the scores come back and it showed the cancer had returned. So I had what’s called the Gleason score. And this is a pathology report that determines the stage of cancer within the prostate. Now this is where it gets a bit confusing for men. I’ve come across men and then when you say ‘Do you know what your Gleason score is?’, And they go, “What you’re talking about?” I haven’t even had that explained which, you know, I find interesting. The confusion around the whole Gleason score is that it’s made up of numbers. So if someone has told you, “you gotta Gleason score of six”, that means the staging is a three plus three, that gets you a six.
Les: How do I get a score?
Alan: The score is what the pathology scores the stages of the prostate cells or the cancer cells within the tissue taken from the prostate.
Les: From a biopsy.
Alan: From a biopsy. And the pathologist has this grading, and if one ever sees it on a screen, you can see the actual shape of the cells change and that might become more aggressive.
Les: Okay, so you can’t get a Gleason score without a biopsy.
Alan: Correct. And some men, I know some men who won’t do that either because they don’t want to know or they’ve read all sorts of stuff on Dr Google, which is not a good idea. But as I would say to men, until you get that biopsy you cannot make in my opinion, a full decision about what to do next.
Les: Okay. There must be a reason for having a biopsy. So a combination of the PSA score, the digital examination, may could result in a recommendation that we do a biopsy.
Alan: Correct. And I think that’s important that men understand that if you have a high PSA, the next thing is to be rechecked in six weeks or so. If the medico’s on board, they’d say “okay, it is a bit high, come back in six weeks”. Which would you agree that Leann?
Leanne: Absolutely. And they’ll tell them what not to do beforehand. What we mentioned about infections, mention about catheters being in, sex 72 hours before tests. So those recommendations have to go so that we get a good, clear test on the PSA.
Les: So Leanne, what’s a high PSA? What’s a normal PSA?
Leanne: Well, there isn’t any. This is why it’s not a national scheme for detecting prostate cancer like your mammograms are, because it isn’t a score that will tell you ‘you have cancer’. It’s a baseline to start with. They follow it up and if they see an increase in a certain amount of time, they will say “well something’s happening here”, and then they will perhaps go off to a urologist for further diagnosis and assessment.
Les: So we’re sort of going down this path of making these decisions as we’re getting these signals. And then the biopsy comes back and you’ve gotta Gleason score of…
Alan: Well, I had a mixture because when the urologist takes the samples of tissues, always different samples of tissue that are being measured. Some of these scores was a six, which means hypothetically it’s low. Of the other scores were seven, this is where it gets tricky now, and the seven was made up with what’s called a 4+3. So there was more aggressive prostate cancer cells sitting there, plus three. If had been flipped around and have been 3+4, it’s an intermediate, but that’s a really grey area. Okay, so I’ve got it, but it’s not too aggressive, but it’s looking, not healthy. That becomes difficult for men to make a decision about what to do next with treatment.
Les: So I’ve got all his stuff in my head. You’ve got all this stuff in your head and I’m going to have to or you’re going have to make a decision. And what’s that decision? To have the prostate removed?
Alan: Yes, well, my Gleason was a six and also scores of sevens, but it was a four plus three, so it was aggressive looking. It was aggressive. So the short answer was no active surveillance because I don’t even know if what it’s gone walkabout now for want of a better, where no one microscopically gone outside the capsule. There’s no way of determining that because it’s just not possible to find this point. I considered radiotherapy but decided that wasn’t for me, and I felt I was between a rock and a hard place now. Ten years after and if I could just backtrack into this PSA testing slightly. Another aspect of this jigsaw is that if the men has what’s called a free to total PSA blood test done as well. That percentage usually sits around 23 to 25%. I think Leanne will agree with this. And that is another good indicator that if that free to total PSA is nice and high, often it’s less chance of being prostate cancer. I dropped the ball on that, getting checked over the years, and when I went back and looked at my blood tests, my free to total PSA had come down 12%. But the PSA was only 1.9. So there was a bit of an anomaly sitting there, which can happen with men again.
Les: But you’re faced with this issue of making this decision with, can I say, not very clear understanding of what the implications are?
Alan: Look, I was clear that I had to do something sooner rather than later.
Les: Okay. So what does doing something actually mean? Does it [mean] having the prostate removed?
Alan: Yes, that was my decision.
Les: Okay. And in doing that, maybe you can answer this Leanne, but what are the options, and I don’t know what I’m talking about so I don’t know how to ask the question. But my understanding is the prostate is contained within the body, and it can be removed as an operation. Or, and or, the cancer has spread beyond, is it called a sack that the prostate sits in?
Les: Capsule that it sits in and then that operation is bigger?
Leanne: No. If it’s extended outside of the capsule, they usually don’t do a prostatectomy. It’s pointless. They would do a staging, which is a CT, to see where it’s gone, if it’s gone anywhere. Also, a bone scan because prostate cancer tends to go to the bone and the lymph nodes. So, if it’s escaped the capsule and they call it metastatic prostate cancer, they’ll treat it with hormones to begin with.
Les: Does that mean that the prostate still has to come out?
Leanne: No, because if it’s escape, then that’s a pointless thing to do, really. They could go for radiotherapy to do lymph nodes. Bones, if that happens to be a pain issue there. But once it’s escaped the prostate, then it tends to be left there.
Les: Okay. Come back to you Alan on making this decision. You’ve made the decision, “I’m gonna have to have it out”. What’s in your head as to what that means?
Alan: Well, the first in major effects, side effects, of losing your prostate is that it affects your continence because within the prostate, there’s an automatic control system, there’s a sphincter that looks after your pass in urine, it closes off automatically generally. And the other major side effect is erectile dysfunction because the nerves that sit under the prostate are damaged. The surgeon may pull them off because they’re being affected by prostate cancer. Either way, those nerves are traumatised for one, a better word, and they affect the men’s ability to have an erection. Also the blood vessels that lead down into the penis are also affected.
Les: So are they, and I don’t want to sound trite here because, it’s not trite at all. But are they the two main issues? One loss of urinary control and sexual dysfunction?
Alan: They’re the two major ones that I think a third one that’s not talked about is just how deeply affected most men, and even when we’re all different, are affected in their sense of being a man.
Les: Yeah, that’s where I’m getting.
Alan: The sense of masculinity though gets knocked around a bit. I think the sense of being able to, two things control your urine flow, you just take it for granted. And I think most men take for granted, if they’re in a good relationship, they can have erections and have sex when they want to. All of a sudden that is knocked on the head overnight.
Les: And so that is potentially a major fear or driver, not to have the operation. Well, I’m asking the question. Is that a consideration? Knowing that if you make that decision, it’s not going to change the diagnosis or is not going to change the cancer. In fact, it could get worse.
Alan: Well, it is a major consideration. I guess, if men meet the criteria, they can have radiotherapy which Leanne will talk to men about. So if men meet certain criteria they might opt for radiotherapy, which forestalls the side-effects. But there are other side effects that run with radiotherapy, and eventually, and Leanne will correct me on this one, that eventually radiotherapy will cook the nerves at some point down the line and that can flow onto the erectile dysfunction so that maybe 2-3 years down the track where with the operation it’s overnight. It happens.
Leanne: I guess with the radiotherapy the other thing that goes with that is the hormone therapy that comes with that, so it’s the side effects of that. So you lose your libido, you lose your sex drive. The erections are affected there as well. So it’s not just the radiotherapy itself. Hormone therapy is used for metastatic as well and it has a great effect on a sexual function.
Les: So what’s brachytherapy?
Leanne: Okay, brachytherapy is when radioactive seeds are put into the prostate cancer themself and they remain in there for the rest of your life.
Les: Injected into the prostate?
Leanne: Yeah it’s done through a procedure that’s done in radiotherapy unit, in theatre in fact. And there are hundreds of seeds that are put into the prostate and stay there and work from the inside out.
Les: And is that going to fix the problem and alleviate these two major concerns that we’re talking about?
Leanne: It will fix the prostate cancer itself. There is some re-erectile dysfunction, just because of the seeds going in there, but it does come back. But once again the nerves can be affected because the radiotherapy. So either way you go with any of these treatment, sexual function is a big number one problem with prostate cancer.
Les: And we can have quite a separate discussion I guess as to whether you know that should be, you know, is that your money or your life sort of stuff. I mean I understand loss of manhood and all that stuff. But is that better than losing your life?
Alan: You got to find the funny side of things. When I was initially diagnosed in 2000, and yes I did Dr Google business, and at that time we’re talking about full open cut, full surgery because now we’ve got robotic surgery, laparoscopy et cetera. So at that time we were talking about full open cut, donating your own blood because there’s still blood loss or you could die on the table. I remember looking to go ‘dying on the table is my least concern. My concern is erectile dysfunction and incontinence’.
Les: Isn’t that amazing?
Alan: That was how I saw it.
Les: And I think that you are not alone.
Alan: I wouldn’t think so.
Les: And I think that that’s well, I don’t know, but maybe Leanne can guide us. We talk about prostate cancer rates in Gippsland as being higher or equally as high as other places. And I asked the question on Saturday, “Why is that so? Is it something in the air, or is it something that impacts on general health? Or is that an attitudinal thing? And it’s very easy to generalise, but the major issue, the major identification of the problem is a lack of decision-making ‘early’ to understand this. So that the levels are higher, potentially higher, these are in my words. But Leanne you might have a view, potentially higher in Gippsland, because people don’t talk about it or don’t go to the doctor.
Leanne: Correct. And that’s more the point. We have lots of men – farmers – a lot who just don’t have time to go to the doctor. They ignore the thing – they look after their animals, but they forget about themselves. So I think it’s more of they don’t want to know, they haven’t got time and it’s left so late. A lot of the prostate cancer, around here is metastatic because it’s been left so long. That’s more what we’re seeing in the numbers of people coming up with prostate cancer.
Les: Is that because we don’t do enough of what we’re doing?
Leanne: Awareness? We’re working on it definitely, and I’ve been in this position for two years. Prior to that, there was a nurse as well, and part of that job is about awareness, getting out there, doing this sort of thing. The Big Blokes Barbie, the football game that’s coming up on Saturday. And awareness that I’m actually there to help men make that decision making, not making the decision. I’m just giving them the options.
Les: But I understand, and this might be wrong, that you’re not funded for a full time job position.
Leanne: That’s correct. I’m funded by the Big Blokes Barbie.
Les: If this is so important, then why the hell aren’t we doing something more proactive? And you’re probably not in a position to comment on that question, but it’s really quite bizarre, isn’t it?
Leanne: It is, it’s about the funding too.
Alan: Yes, yes it is. I agree with Leanne and I think unfortunately there are hotspots around Australia. Gippsland is one of them, Mornington Peninsula is another one, around Geelong as well, where there seem to be a higher than average prostate cancer for a number of reasons. Look, I call it ‘50 shades of grey for prostate cancer’, for why men don’t get checked up. But they look after their farm animals, which is important. They look after machinery. The most important piece of machinery – you’re walking around in it, and if this goes pear shaped, you can’t go get another prostate. It’s your responsibility. The men’s responsible to look after themselves and this can happen in Melbourne Metropolitan. They don’t want to know about, too busy. I don’t want to know where to find out that there may or may not be something wrong. I’ve heard this horror story, but that is life. You could be waiting on a result for your cholesterol and could be awful high. Or you could be pre-diabetic. It’s your responsibility, the men’s responsible to look after themselves. That’s why it’s important that men get checked early, and it’s important that it ties in with the trial that’s run out of the Peter McCallum Cancer Centre called Navigate. This is designed as an online decision aid for men who were diagnosed with low risk prostate cancer. All online, don’t have to go for testing. So if these men have been diagnosed nice and early and they’ve spoken to Leanne and Leanne said, ‘Look, there’s this trial running out. Yours is localised, nice and low risk, you might be interested in this trial. So the men have followed up over six months with about three questionnaires to see how they’re tracking. Because of all the cancers, prostate cancer diagnosis, particularly low risk, creates more anxiety around decision making. You’ve got five decisions. I’m the sick one because I don’t want to do anything at all and just walk away. So for men to make a decision…
Les: What are the five?
Alan: Well, there’s laparoscopic. There’s robotic. There’s open cut, depend on the surgeon’s skill. There is radiotherapy, external beam. There’s the seed implant as Leanne has talked about and there’s active surveillance. So there’s six decisions to make. Not knowing A) probably they didn’t even know they had a prostate. B) How come I’ve got prostate cancer and where’s it come from? These three reasons and it’ll affect the family. It’ll affect the relationship, it impacts heavily on the couple’s relationship. So this Navigate trial is tracking men over six months. ‘How they are going?’, so it gives us a better understanding about how men come to decision making. And the beauty of this one is that the particular Navigate website has a series of questionnaires that men work their way through and their partners. And this is unique about this, is that the partner can be involved in this decision. And in the back of the computer system, the algorithms is working out where the man is heading to with regards of decision making. So at the end of the 19-20 questions it spits out an answer, ‘looks like you appear to be going for active surveillance’. The man might go, ‘No, no, I want to have surgery’. So you could go back and do the questions again with a better understand about the outcomes of each decision he is making so that it becomes a little clearer. And he doesn’t have to spend you know, two hours with Dr Google because the Navigate website has a heap of information, with current information, videos about men who’ve made their own decisions. The clinicians, etcetera.
Les: More like ‘It’s too hard. I don’t want to do anything about it.’
Natalie: You have just listened to part one of this radio interview. To continue listening, please go to the next episode where Les delves into the topics about treatment side effects, impacts to personal relationships, and advice from Leanne, a prostate cancer nurse. Thank you to Les Hunt and Gippsland FM for allowing us to reproduce this radio interview, which aired on the 6th of May 2019 and to the guests that were involved on the interview.
If you have recently been diagnosed with localised low-risk prostate cancer and are listening before June 2020 please consider joining our research trial to help navigate your treatment options. This podcast is part of an NHMRC funded project sponsored by Swinburne University and a collaboration with leading academic institutions, prostate cancer organisations and hospitals. Go to www.navigateprostate.com.au where you can check your eligibility and register. If you’ve got questions for us, we’d love to hear from you. Please email [email protected]. If you have any questions you need answered now, call Cancer Council 13 11 20 from anywhere in Australia and talk to a health professional for information and support. The stories and experiences contained within this podcast represent the views and opinions of the speakers. We recommend that you obtain independent advice specific to your circumstances from your health professional.
If you are reading this article before October 2020 and have recently been diagnosed with early-stage, low-risk prostate cancer, please consider joining our research trial www.navigateprostate.com.au to help navigate your treatment options.
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