Overcoming Prostate Cancer: A survivor & his wife tell their story | Prostate cancer nurse expert advice | Podcast Interview Part 2
23rd August 2019
Listen to the 2nd 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.
If they’re not talking to their mates, I’m wanting to say, ‘Are you talking to your wife?’…We were still able to show one another physical care and appreciation for one another…People come to me to look at their options. They’re there for support…There’s no one answer.
Natalie: Hello and welcome to Navigate Prostate, providing information and insight for people affected by localized, 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’m now going to play the second part of a radio interview by Lez Hunt on Gippsland FM, which covers the topics about prostate cancer treatment side effects, any impact to personal relationships and words of advice from a prostate cancer nurse. If you haven’t already done so, I highly recommend you listening to part one of this interview, which is the episode just prior.
Les: Welcome back to ‘For your information’. Before the break we were going through some of the issues around prostate cancer operation. I’m joined in the studio by Alan White, who’s written this book called, ‘We’ve Lost My Prostate Mate and Life Goes On’, and his wife, Fiona, and the prostate cancer nurse from the Latrobe Regional Hospital, Leanne Prosser. We’ve just opened up so many sort of things when we talk about this. This is just a huge, huge topic. But one of the things that strike me Alan in your book was quite a profound emphasis. Or it seemed to me to be a profound emphasis on the very two issues that we touched on, before the break, and that is, I don’t know. Is it incontinence? Is that is that the right term or lack of control. And the impact on sexual activity? And well they’re the principal two themes through the book. Is that a fair comment?
Alan: That is. Yeah that’s a comment that also flows onto the relationship. If a man’s in a relationship, whatever that may be, the impacts are very heavy. I call it disenfranchised grief because it’s not like something you’re gonna walk around, pull up in the bar with your mates and start talking about it over a beer or a coffee. And it’s really weird because when I’ve talked to other men, discovered that three or four of his mates have all had prostate cancer yet no one spoke until the fourth bloke rocks up one day at the golf and says, ‘I just had my prostate out’ and ‘Oh, we all did too’. And no one had spoken about it. So if they’re not talking to their mates, I’m wanting to say, ‘Are you talking to your wife?’ because it impacts the relationship so deeply. In fact, it can flip the relationship. So if it’s not traveling really well, this is going to flip it even more so.
Les: So how do you feel about that, Fiona?
Fiona: What Alan said is absolutely true, and it’s been extremely difficult. But before we go any further, I would like to say that, look at it as a long term project. You’re in this for the long haul. You love your partner, you love him very much, and I think the most important thing is to keep up your affection. Showing him that he is still to you, a sexy, desirable man, regardless of his performance. And I think you have to bring back the laughter and the fun element because it will probably take some time, but I have to say that we’re now in 2019. It was 2011 when Alan was operated on, so we’re talking eight years down the line, and things are improving. There is some natural function returning. It has taken a long time, but that’s a really great sign. And I think that in many ways we probably have a better relationship now than we did.
Fiona: Yes, but I have to say I’ve seen a lot of situations where partners have decided that this was a great opportunity to say, ‘Ripper! No more sex’, which is such a sad thing.
Les: And potentially no more anything.
Fiona: That’s right. And there doesn’t seem to be a lot of discussion between the partners about what their needs and desires are going forward. So I feel really sorry for those particular men and their partners that they get into such a sad state.
Les: So Leanne, how important is the role of the partner in the discussions that you’ve had?
Leanne: Oh, very because they’re the ones that they have turned to just to get reassurance that everything’s going to be okay.
Les: Is it more basic than that? Is that, you know the farmer that we talked about, that won’t go and have the PSA or the blood test initially? Is it important that the spouse or the partner, or whatever the terms are these days!
Leanne: That’s right. You get that right. Women traditionally are more health literate. They are the ones that chase after health issues.
Les: Well it’s much easier, no. It seems to be much easier, much more acceptable to talk about breast cancer than it is about prostate cancer.
Leanne: That’s right. Yeah. So you know a lot of the drivers are the women that are saying you need to go and get this test done. So our awareness really sometimes could be going to the woman because she’s the one that’s going to, say ‘nag’ him to go and have his PSA done.
Les: I think that’s really important.
Leanne: Yeah, and you know, just keep at it you know, wear them out. Make sure they do what they’re told. I mean, if you’ve got if you’ve got a family history, a father or an uncle who’s had prostate cancer, then at the age of 40 you should start initiating the PSA testing. And even ovarian and breast cancer, which are hormone driven are also an indicator that you should be getting your PSA checked. If you’re a man over 50, because of the aging process that’s another reason to have your PSA. So that’s what we’re trying to tell men and asking women to try and enforce with their husbands.
Les: This is really sort of basic. I understand, and I might be wrong. My understanding is that mammograms are provided free of charge up until the age of 72.
Leanne: Yes, that’s about the age. I don’t know the actual years, but it’s about that. From the age of 50 you’re invited to come and have it.
Les: Let’s say it’s 72. Does that mean after 72 it’s not a problem?
Leanne: No, it still happens. I guess, I don’t know the actual reasons behind that. I guess that they’re more lucky to find it at an older age.
Les: I guess the point of my question, obviously is, in a prostate cancer sense, is there more likelihood at 40 or 50 than there is at 70 or does it not make any difference?
Leanne: Well, traditionally they say I’m over 65 you’re gonna be finding more prostate cancers. If you’ve got a family history of it, I mean, brother, uncle, father, then at 40 they suggest you start then.
Les: Okay, so if you’re over 70 maybe that’ll get you or maybe something else could get you.
Leanne: Well they do say it’s an old man’s disease. And as we age, you’re more likely to find that you got prostate cancer. And on biopsies they’ve done on autopsies or something like that, they usually find prostate cancer that they didn’t know was even there. So as you age, it’s more likely to be found.
Fiona: But more men now, older men, are actually having their prostates removed, which wasn’t so prevalent a few years back.
Leanne: Even if it’s metastatic, then it won’t be removed. But if it’s a young man who’s diagnosed with prostate cancer and it’s contained, then the urologist would prefer them to have an operation to have it removed.
Les: So let’s just talk about the two sort of, after effects or side effects or outcomes or whatever. Is it possible to generalize and sort of say well, you know, after 70, the sexual activity might not be as important as it is for someone who is 40 but the lack of urinary control, I mean, apart from being a bloody nuisance and all that stuff is a major issue?
Alan: It’s still for some men. There’s still couples who are sexually active in their seventies, and there are number ways to deal with that. Once the operation is, I guess, for some couples and I’ve read it and Fiona and I have come across couples just maintaining the intimacy whether it’s the cuddling or other ways of doing it. It doesn’t have to be sexual penetration. You know, it gets a bit annoying for me to hear, ‘Oh men are just worried about sex’. Some men just want that being that close to their partner and being able to hold them and finding other ways to be intimate and to give pleasure to each other. It’s a Heinz 57 sort of thing, there’s no one answer. Every couple will deal with this differently. So a couple’s journey in most cases, where men are in a relationship. Unfortunately, those who aren’t in a relationship which is even twice as hard. But what men don’t realize, ‘we’re 65, we’re 70, we’re not really worried about having sex’. Well, that’s okay. But you actually need to stimulate Percy to get the blood flowing and oxygen into him. Because that happens, overnight and what men may not realize that during the night, their body is having erections because it’s a way of the body keeping blood flow into their penis and keeping fresh oxygen into it. So the tissue stays healthy. You need to keep that up after the operation. In whatever way shape or form you do that.
Les: I love the analogy. Is it depressing?
Alan: Well look it can be yes. I would say yes. And I didn’t think it was depressing for me until, I got up towards about the end of 2011 around August and September and my background in counseling. I was thinking I could sort this out myself, and I come to the realization that I couldn’t and I wasn’t quite sure what to do next. So I took myself off the council. Luckily for me, well, otherwise I’m a Vietnam vet so there was free counseling through the Vietnam Veterans Council. So I had a number of sessions to work out what was going on in my head around my ability to deal with what my changes that occurred for me, not just sexually, but also the incontinence stuff. It took a bit long for me to get better, but also the relationship and how I function as a male. It took me a few sessions to get my head around that, and it still took me a year or two to keep unravelling. Some blokes just get on with it, you know. ‘Okay it’s out. I’m happy. I’m alive. Let’s get on with it.’ But everyone’s different, and men I don’t think you understand that that impacts deeply. So depressing, I think when I look back; I was probably slightly depressed in some respects. But some men are even more depressed, and it’s been found research that for older men who aren’t in relationships, that they’ll actually – suicide goes up. In fact, some men are diagnosed and there’s no good outcomes will commit suicide one way shape form now that we never hear about that. And of course, the suicide rate is higher for men within the Australian population.
Les: It is, and it’s not talked about. And it’s something that I’ve dealt with on a couple of occasions. Again, not talked about. What about for the female of the partnership? Is that depressing?
Fiona: What is really depressing is seeing your partner crying. That’s really hard.
Les: Can I just interrupt you, because that’s really important. But one of the other things that Alan said being, Vietnam vet, I’ve heard many stories of Vietnamese veterans or veterans of Vietnam doing the same thing in terms of being with partners. You know, I’ve talked to partners who’ve had to embrace a Vietnam vet in tears for whatever reason. Is it, I don’t even know what I’m trying to ask here. Is that different than dealing with the side effects of this depression? I mean, you’re saying that it’s, I don’t know what you’re saying is depressing for you or is really difficult to deal with.
Fiona: It’s difficult to deal with, I think because I didn’t find it depressing for me. I found it really upsetting, painful to observe. I spent a lot of time reassuring Alan that he had made the right choice and that performance did not need to be ‘the be all end all’ because so long as we had each other and we were still able to show one another physical care and appreciation for one another, that was the most important thing. And we needed to really focus on the affection side of things. So that was very important. Very important.
Les: How important was that for you Alan?
Alan: Yes, look it was. Because there was some part of me thinking about the…
Les: Well yeah it is.
Alan: I guess for me it was like, ‘Oh, God, we’re having a cuddle. Does that mean that we’re gonna have sex?’ It was this weird construct I had sitting in my brain. I had to really work on that. I mean and again, like I was saying, we are all different in this and Leanne probably comes across blokes like this unless they really speak up about it, that we all have different constructs about how we are intimate with their partner. So for me, I had to really relax and just go with the flow. And I do a lot of mental talk around that as well, which sounds a bit weird, but that’s how it was. That’s just how I functioned. I guess on the expectation on myself just to be able to you know just get up and running again. And it wasn’t gonna happen overnight. A magic blue pill, Viagra or Cialis isn’t always the magic blue pill. And then there’s injections or vacuum pumps, which I must say that men don’t realize the vacuum pump is very important in the early stages. What’s called penis rehabilitation is to get that blood flow and length happening. Because kept aside that’s not talked about is that when you have this operation, men lose length and girth and don’t get told about that. You wake up, you know, and all of the sudden Percy i.e Mr Penis, it’s shorter and smaller. And because of the nerve reaction and blood supply et cetera.
Les: Like just going for a swim in the cold water.
Fiona: It’s kind of purple. It’s kind of bluish purple. It looks really sad.
Les: Leanne, do you go through this sort of discussion?
Leanne: I do, yes. When I’m talking about the options, I talk about having the operation, I talk about radiotherapy and the brachytherapy and also active surveillance – if they’re in that category. I do tell them that there is medications and ways of sorting out the erection problem. But most of them don’t want to know about it. They just wanna get this disease under control first. But, you know, we also have to get to the fact that they’ve already had diminishing sexual function at that time, due to age. Their wife’s going through menopause. She’s not interested anymore. She’s in the background, shaking her head, ‘No, don’t talk about it. I don’t want to be bothered with that sort of stuff.’ So, you know, as you say it’s different to everybody. And the partner has to be also interested. They may not even want to be bothered with sex anymore, so I don’t push the issue. I say that we can come back and revisit that when you’re comfortable with that. And they go ‘No, we haven’t done it for ages already anyway’, so I don’t want to embarrass them to talk about it.
Les: I want to deal with it because, are people ‘happy’ to talk to you along those lines?
Leanne: I guess as we develop rapport over time, they will be. But on the initial visit, you know, they don’t know who I am, and I don’t know who they are. So I guess down the track is you get to know them, they’ll open up about it. But at that point, most just want to be cured. That’s what I’m finding.
Les: How important of the skill is it in a prostate nurse. I haven’t put any gender on that. How important is it as a skill to be able to talk cold bloodedly?
Leanne: Well, when I first started it was, as you called a ‘touchy subject’. But over the time they’re training in our development, the things that we go to, we learned to speak. And the more we talk about it, the more you get comfortable with it. But people outside who don’t talk about it – the older generation – who don’t like to talk about. It’s more uncomfortable for them. Then I might have to gauge by their reaction, and their look on their face and just be aware of what their reaction was.
Les: Would they be more inclined to talk to a male?
Leanne: I don’t think evidence-based things have shown that.
Les: Are there male prostate cancer nurses?
Leanne: Yes there is. And I haven’t had any of them say ‘Well it has made any difference’, because no, I don’t know. What do you think Alan?
Alan: Look, I think sometimes it depends on the age of the prostate cancer nurse.
Leanne: Yeah, that’s true.
Alan: If the younger ones I’ve heard anectodely go, ‘What does she know about this?’ Or you know, just seeing the sexual rehab nurse. It’s very blunt, ‘this is where you stick it’. And there’s no empathy. Not here, just around Melbourne. And that’s unfortunate. They’re doing their job, but they don’t understand the nuts and bolts of that job, and that’s very…
Fiona: It’s too clinical.
Alan: Yeah, a little bit too clinical on how they’ve done it, but not all of them are like that. But there’s been feedback provided about that and that’s annoying. And I don’t want to compare apples and oranges with regards the prostate and breast cancer, but I feel that, probably the breast cancer have got it all covered. There’s more empathy with the breast cancer nurses. And they seem to be doing a different way.
Les: And yet as a disease. If I’m right, prostate cancer kills more than breast cancer.
Alan: Oh yes, we’re a little bit higher, there about similar, but a little bit higher, and there’s all sorts of reasons. They depend on the region in Australia we’re talking about and all that sort of stuff.
Les: And the early diagnosis.
Alan: The early diagnosis is important, and it’s again, if I can harp again on this Navigate trial that it’s important to know that when men are invited to join the trial, they either go to the Navigate trial or they’ll go to the Prostate Cancer Foundation.
Les: Can I take you back and tell me what the Navigate trial is?
Alan: Yes, it’s a trial that’s being run out of Peter Mac, and we’re looking at men who have been diagnosed with low-risk prostate cancer and, I guess Navigate means is that you are attempting to navigate your way through your decision making. So the decision making either they go to the Navigate trial site for prostate cancer. Or they get sent to the Prostate Cancer Foundation website, which is public access and it’s all very much similar information. So no one’s being disadvantaged in available information.
Les: You said the Navigate trial that ‘we’ are running. Who’s ‘we’?
Alan: ‘Who’s we’ is the team. There’s a small team that’s sitting in Peter McCallum Cancer Centre being run by Professor Penny Scofield and Declan Murphy, now become a full professor and urologist. I’m the project advocate slash associate investigator. So I’ve been involved pretty much since 2012 when it was up and running.
Alan: Well, I was asked to join because of my involvement in men’s health education through veteran affairs and involved with the local prostate cancer support group. My name seemed to pop up and I said, ‘Yeah, why not ?’ Not realizing they have a lot of work in running the trial and, you know, getting it from the ground up. And again, I bring my experience, but also in talk to men in the community. I could bring their concerns into the trial and what would be advantageous to have in the trial as far as information. And we actually did what’s called lab tests about the early design of the online decision aid. So we had a heavy input from men who do and don’t have prostate cancer. So it’s easy to use and easy to understand.
Les: So I could join it just out of interest?
Alan: Not at this stage. But you could go to the Prostate Cancer Foundation website and look at the information around prostate cancer decision making. So that is accessible to everyone. So that’s already there. But again, not every man knows about that either.
Les: And that’s important. We’re just gonna run out of time. So, Leanne, can I give you the opportunity to do a bit of marketing or a bit of upfront advertising about your role and the sort of support mechanisms that are in place or where people can turn locally to get some up to date information.
Leanne: Sure, we’ve got a prostate nurse in the LaTrobe Regional hospital. There was one in Bairnsdale, and she had resigned, and I’ve been covering all of Gippsland. There’s been a new person employed there, but she won’t be on board until she’s learned some more. But people come to me, to look at their options. They’re there for support. I coordinate their care between doctors, Allied Health and things like that. I’m there for them to ask questions and direct them in the right place for further information if they need be. The one thing that I’d like to plug is the online community at PCFA, which you can get online.
Les: PCFA is?
Leanne: Prostate Cancer Foundation of Australia, it’s called https://onlinecommunity.pcfa.org.au/. And there you can read latest research, expert insights, living with cancer and sharing experiences. And people go on there, ask a question and it can be answered. People discuss it. They learn and connect with other people and share their experiences as well. And that can be very helpful to people who are a little bit lost as to where to go. Because as we talk about Dr Google, there’s so much unhelpful…
Leanne: Yes, and not evidence based information and that’s what you want. Evidence based information. That’s what I make sure I convey to patients before they make a decision. And any information I give needs to be evidence based.
Les: Guys I always think that it’s better to run at a time than it is to really struggle for stuff to talk about it. And we’ve done exactly that. And you know, the way I feel at the moment is that we could go for another hour and probably still not cover it all. So can I just express my gratitude for making the trip down. I think that’s really important. It’s obvious that the pair of you are dedicated to not just each other or the cause to identify how you can help others. Leanne, can I just say you know anything that we can do at the radio station to help your cause. Again I think I’ve got this problem in my head of a real need that’s under resourced and any sort of thing that we can say that might help that. So guys thanks very much for coming. Okay, now that’s ‘For your information’ again for today. I look forward to bringing you another session next week. Thanks for listening.
Natalie: Thank you Les Hunt and Gippsland FM for allowing us to reproduce this radio interview, which aired on 6th of May 2019. Also to those who were interviewed, which is Alan White, Fiona White and Leanne Prosser. 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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