So You’re Gonna discuss mental health in men with prostate cancer

Joseph Ischia: Hello. I’m Joseph Ischia and welcome to another episode of So You’re Gonna, a podcast from the team at Talking Urology where we are empowering doctors to develop a deeper understanding of the literature to ensure we apply the right evidence to the right patient. Today’s podcast, So you’re gonna address the psychological distress and mental health of men living with prostate cancer, while having a very long name, is also brought to you with the world class expertise of Professor Suzanne Chambers She is the Dean of the Faculty of Health at the University of Technology Sydney. She is a health psychologist and registered nurse and has worked as a practitioner and researcher in psychological support for people with cancer for over 30 years. Together we will arm you with all you need to know to help you and your patients deal with the psychological distress of prostate cancer. I hope you enjoy the podcast.

It’s a pleasure to be chatting to Suzanne Chambers and what we’re going to talk about today is mental health and prostate cancer. Now, discussing a new diagnosis of prostate cancer with a patient can be very stressful and obviously at times it can be very stressful for the patient as well. Now, heightened psychological distress cannot only be just with the diagnosis of prostate cancer but can also be related to the treatment-related symptoms. Now, we know that before and after prostate cancer treatment, up to 25% of men will experience anxiety and up to 20% report depression. Now, there is a great risk of suicide around the diagnosis of prostate cancer and the greatest risk had been in the first 6-12 months. We know that suicidal ideation has been reported by approximately 12% of men with prostate cancer and may persist for many years, so it’s not just in that initial phase when we’re really heightened to these sorts of concerns for our patients. Now, there are several factors that can increase the risk of suicide and it particularly tends to be men with locally advanced to a metastatic disease and also those that are single, divorced or widowed. So, having the wife there or partner is really an important part of the prostate cancer management. Now, prostate cancer diagnosis is not the only thing they worry about even when where you give them that, I’ve got a PSA of 0 and clear cancer, many men will experience a high fear of cancer recurrence and there’s not really a whole lot we can do to get rid of that and it’s just a matter of how do they deal with it and we know that the recognition and treatment of the negative psychological consequences of cancer is essential to survivorship care, so Suzanne it’s an absolute pleasure to have you join us and welcome to the Talking Medicine podcast. So let’s start with a little discussion around, at what stage of prostate cancer are men most likely to suffer psychological distress?

Suzanne Chambers: Well I guess the first point is that a diagnosis of any cancer is extremely distressing for most people, so prostate cancer is no different in that sense and the moment of greatest distress is that point of getting the news where I’m sure clinicians listening will recognize that the patient often goes into some sense of shock. No one’s ever expecting or wanting this news and so it can be quite shocking for them, and what tends to happen with most people is that over time is they work they way through treatment that will start to subside and most people will go back and most men will go back to their normal state of functioning that they had before they were diagnosed but that doesn’t happen for everyone. So it’s important to not assume that we’re months down the track now and you’ll just be fine. The other point to make I guess about the prostate cancer journey is that there will be incidents along this journey that will be more distressing, so for example, getting an extra test done, getting a new test result, having a change in your PSA, needing extra treatments, all of those things can spike up distress as well. So the first thing I would say is for clinicians to have an awareness that distress is normal, distress is common and it’s an ongoing experience for many.

Joseph: Excellent! Can I pick up on one thing you said there about that moment of shock when you first tell them, look you’ve got quite a bad cancer? We all are aware of that sort of the eyes roll back a little bit, what should we do in that exact moment? Should we keep talking? Should we wait? Do we look at the partner? What do you recommend is one of the best ways for us to give that bad news?

Suzanne: You know I think you do all of that and I guess a trick, a thing that I always do when I’m dealing with patients is I stop for a minute and I think what would I like to be done for me. So it’s about being compassionate, it’s about giving people time, not rushing them through the decision, letting them know that you’re there and you’re looking after them, you’re going to coordinate their care, you’re in it with them every step of the way, because it’s very frightening and if you don’t feel that your clinician is there with you that’s pretty scary. I think clinicians are really, my observation is they’re really good at this, giving people time, making eye contact, stopping regularly and saying I’m talking a lot of things to you, some of this is just going to go in one ear and out the other because this is a difficult time, we can come back to this and talk again, and really that’s just being kind and compassionate and understanding with the people that you’re with.

Joseph: Thank you. What are the risk factors for high levels of distress? I mentioned a few in the introduction. Are there any that I missed that you think we need to highlight for the audience?

Suzanne: Well the first thing would be is that if you’re working with a patient who has had a previous history of mental ill health, that obviously is a red flag for you to be aware that this person has a pre-existing psychological vulnerability and you want to be keeping a close track of that. Predictors of high levels of distress are being young in age and that makes sense if you think about it, if you’re young you don’t expect to get diagnosed with cancer, you’re at a more vulnerable life stage and so that’s going to be a bigger shock than if you’re an older man. Long-term predictors of poor outcomes from a psychological point of view being on androgen ablation therapy and obviously what’s in that is probably a mixture of the actual effects of the drugs itself in terms of mood disturbance plus if you’re being put on androgen ablation therapy it’s likely that your disease is a little more progressed. People who are of low socioeconomic status, so if you don’t have a lot of financial resources or social resources around you that makes it harder to cope. The more advanced your disease is obviously that makes sense again if you think that through. If you’ve got an illness that’s going to be able to be likely treated and result in a cure that’s easier to come to terms with than is something where the answer is we can’t cure you but we’re going to control this illness, control this disease, and the other thing would be the severity of the side effects. So if someone goes through their treatment and they really have been left with not substantial changes in their functioning, their sexual functioning or their bowel functioning or their urine functioning, if it hasn’t changed your life that dramatically that’s easier to come to terms with than if you’d been left with some serious side effects there, although I would add in we can’t assume we know what a serious side effect is from our point of view and there was a recent study we’ve just had published in Psycho-Oncology where we tracked men over 10 years and actually found that bowel symptoms were more influential in long-term distress than with sexual symptoms which was a surprise to me but then when I talked to clinicians about it, they have said yeah well, you know if you’re bowel function is affected that really affects your social functioning, there are feelings of disgust around that, and then that becomes an issue for men that really distresses them. So, taking in the whole picture, not making assumptions about what’s going to bother a particular person and inquiring with them about how they’re tracking.

Joseph: That’s some great points that they can flag that the patient is likely to be more distressed. Now you mentioned that you’ve published and we know that you’re incredibly well published and one of the things that you’ve done a great job of getting the message out is around this distress thermometer. Can you tell us more about that please?

Suzanne: Certainly. So, there’s an instrument, it’s a single item, visual analog scale called a distress thermometer and it was actually first developed at Memorial Sloan Kettering in New York by Andy Roth and Jimmie Holland many, many decades ago really and interestingly when it was first developed it was developed with men with prostate cancer. A small sample of just about 180 or something like that men. Now the distress thermometer is a simple scale where you just say to the patient, I’m just wanting to check how you’ve been feeling over the past week including today and how distressed do you feel on a scale of 0 – not at all distressed to 10 – extremely distressed, and the patient gives you a number. So, it takes about five seconds to ask that question and this scale has been widely validated. We validated ourselves with literally thousands of men with prostate cancer to get very clear about what the cut-off point is for concern, and it’s 4. So if you ask that question of men with prostate cancer, 0 to 10, where would you sit? I’ve administered this myself many times to men with prostate cancer and the way I introduce it which is just my own style, I’ll say to them I’m going to ask you a question that might seem a little strange but it’s to make sure that I’m really understanding how you’re feeling and how you’re getting on and a way for you to let me know, so if I was to ask you to think about on a scale of 0 – no distress to 10 – most distress you could get, what number would you be? If they tell you 4 or above that’s a risk indicator that this person could have anxiety and depression, so the sensitivity and specificity of this single scale with a cut-off of 4 is very good and it’s not everything but what it tells you is that the person right now is not tracking so well. It’s a little bit state-like. I mean obviously if someone’s just had some very bad news it’s going to be higher and the next day they might be better but it’s a start to get someone to have a conversation with you about how they’re feeling and so in the distress thermometer checklist, you ask that simple single question and then we have a list on the checklist of practical problems, physical problems, emotional problems that you can discuss with the patient just by saying let’s talk about what you think the problem is right now that’s distressing you the most. Because if the problem that’s distressing this person the most is that can’t pay their bills next week because of financial pressures, then the answer is to try and help them practically with that financial distress, but if the answer to their question is I can’t get an erection and that is driving me crazy I can’t stop worrying about it then the answer is to address that problem whereas if the person says something like I don’t know, I just can’t sleep, I’m feeling depressed, etc. then you know this is a psychological problem. So you’re trying to get a sense of you’re feeling distressed, let’s work out what’s the main causes of that, there may be more than one and then let’s direct you to the right person who could help you with that problem and then let’s check again in a couple of weeks and see how you’re tracking.

Joseph: Wonderful point because I heard you give that talk at I think it was ANZUP last year about the distress thermometer and the importance of the number 4 and so I said I’ll try it on a few of my patients. They come in, they’re smiling, they’re happy and I’ve started asking it now and they’re regularly 5 or 6, now that might just be me, but these seem like really happy patients. But when you ask them how distressed they are, you’d be surprised that and that really then leads to the next question of, oh really that’s actually pretty bad, oh you know I am pretty anxious. I think patients put on a really good show for us. They want to be seen to be happy for their doctors, so if you don’t ask you just can’t tell and it’s really made a big difference to, I admit Suzanne I don’t ask it every time but certainly the levels of distress are relatively high I think in these men who are undergoing, they’ve been told they’ve got cancer so it’s understandable.

Suzanne: Well that’s right and I think we’ve got to remember that with men too, it sounds like I’m stereotyping and I sort of am, but it’s pretty common for men to present a stoic face on things. We certainly in this country and I don’t think stoicism is a bad thing in particular, but we have very strong Australian values and particularly for men and some women have it too about stoicism and having the brave face and being self-reliant and those are extremely useful traits to have in many circumstances but they can stop you from asking for help. So, another study we did for example that we’ve just published was where we looked at a large sample, several hundred, and we had measured unmet needs for psychological help and we’d measured masculinity with a new measure that we’ve developed. It’s freely available if anyone’s interested in it and what we found was that if men had unmet needs for psychological support then they will less likely to have sort help for that if they were high on the particular subscale of emotional self-reliance which makes sense when you think it through because they go and I can deal with this, I can look after myself and they’re not seeking help. Now they may well be able to just work it out themselves but they could work it out quicker if they had some help I guess would be my point and I certainly talk to a lot of partners of men with prostate cancer who will be talking to me about their husbands or their partners levels of feelings of hopelessness or distress and it’s obviously upsetting the partner and then I’ll be working with the partner and saying, “Does the doctor know how your husband or your partner is feeling?” and they’ll say, “No” because he sits in front of the doctor and the doctor says, “How are you going?” and he says, “I’m just fine, thanks.”

Joseph: That’s a very common backward and forward.

Suzanne: It’s really common and as I said a lot of the time people will work it out themselves but you worry about when patients, we know that some patients do suicide and of course that’s not the norm. Suicide risk is increased in men with prostate cancer particularly men with advanced disease. It’s still not the norm. It’s still a small number but it’s very distressing to find out down the track that a patient has suicided and we haven’t picked it up and sometimes you can’t but we certainly are not going to pick it up if we don’t change.

Joseph: There are going to be urologists listening and other prostate cancer doctors and saying oh I just didn’t have time for this long discussion. How often should they ask this question in a year? Say you have got a patient, we regularly see them every three months with their PSA or whatever we’re following them for, how often do we need to ask?

Suzanne: Look I’d be asking it every time I saw them but you can use some common sense in this, I mean if it’s absolutely obvious to you because the patient is functioning really well they don’t have high symptom distress, they’re lively and engaged and talkative, and clearly doing really well then you can certainly make a sensible clinical decision that you might not ask that question but really it takes five seconds to ask that question and then if they are distressed, as a clinician you want to know why. They might have symptom there that you need to be managing that you’re unaware of.

Joseph: Okay.

Suzanne: Patients really often have this belief that the doctor’s busy, I need to not bother him, I don’t want to annoy him, I want him to think I’m a good patient and they will hide things and not tell you about them because they’re thinking, “Well, I’m just being a complainer and I don’t want to bother the doctor.” And I know from all the clinicians I worked with over the years that you guys are great at helping patients and you want to know these things but I think you’re making a potential error if you assume that they will tell you if they’ve got a big problem and the more depressed they are the less likely they are to tell you.

Joseph: That’s a great point Suzanne. I just wanted to go back to the distress. Now let’s assume that the urologist has not caused financial distress, let’s get on to the distress we can help with, the emotional stress, what are some simple methods that you would take? So, say, if we do refer them onto a psychologist such as yourself Suzanne? What are the top 2 or 3 things you would do for them, just so know where they’re going?

Suzanne: If they came to me, so the first thing I’d say just going back to the clinician is that there’s no point asking about distress if you don’t have a plan for what you’re going to do with their distress.

Joseph: Good point.

Suzanne: So, you want to have some multiple referral points for them. So, across the country, the Cancer Councils have 13 11 20, their helpline where they will connect people up and that costs nothing to contact the Cancer Council. There are prostate cancer support groups across the country, over 170 last time I checked. They’re run by the Prostate Cancer Foundation of Australia, so that’s another referral point for you. Within your own treatment center, if you’re in a public center there’ll be psychology social work services, if you’re private there’ll be services there, but if the service has a fee you need to be aware of that and what’s going to match your patient. So, there’s lots of different places you can get support and let’s not forget general practice. General practitioners manage people with anxiety and depression all the time and so having a good connection to your primary health care provider working as a team. So for me, as a psychologist, if someone gets referred to me what I do first of all is I just get to know their story and find out what are the things that are bothering the most and in a sense I do the same thing because if someone gets referred to me and their problem is actually about treatment, treatment decisions or needing a second opinion I’m going to be linking back to their clinician about that. They might not even had needed me. They might need something that’s available from their clinician, so I’d get a full picture from the person about what’s bothering them then I feed that back to them and to check, listening to you these appear to be the things that are bothering you most, do I have that right? Never assume you’ve got it right and then once I’m very clear about what the things are that are bothering this patient then I want to work with them on setting goals for them about what do they want to work on and what’s the way that we could do that. Always remembering to link back in with the clinician as we go. So, it’s pretty straightforward. If I thought the person needed medication, I’d be wanting the GP involved. If I thought that they had some serious psychiatric illnesses, I’d be wanting to refer them to a psychiatrist, so it’s really just the same approach of sort of checking the story, checking the patient’s narrative and coming to some hypothesis about what are the issues to work with, with this person and then putting that into action.

Joseph: That’s some great advice. Just knowing that there’s the PCFA and the Cancer Councils or the GPs and then the psychologists if necessary, I think they’re great avenues for us to use.

Suzanne: There are other sources around. What I found it’s harder in the regional areas because it’s often waitlists to get to see psychologists in regional areas and not so much available and sometimes you ring the helplines, sometimes it’s hard to get through, but we’ve really got to encourage and support people to access the resources that are around and don’t forget the self-help materials either. We’ve just produced a monograph on psychosocial care that’s freely downloadable from the PCFA website and it has at the end of that monograph, we’ve got the distress thermometer, we’ve got the national position statement on psychosocial care that we developed last year and we’ve also got a list of self help books. So there is actually a lot there if clinicians can find someone to help them get a hold of those or shoot me an email, I’ll get the piece or shoot the PCFA an email and say I want a copy of the monograph and then get someone in your practice to help pull those materials together for your patients.

Joseph: That is some great advice. I think we’ve covered most of the top issues and I usually finish off my podcast by asking my guests, what’s one of the biggest mistakes that you see doctors are making in your field of mental health obviously. I can see right now and I think it’s the old adage of more is missed by not asking than not knowing with regards to asking this distress thermometer question. Is there anything else if you could have one message to get across to urologists around Australia and the world that you would like them to do differently to improve the mental health of their patients?

Suzanne: Well, I think they would make a huge difference if they just did distress screening and then referral to proper services. I mean I give talks to the public all the time and every time I do this I have men with prostate cancer and partners in the audience who just put their hand up and say I was devastated, I was depressed, no one ever asked me how I was feeling, I suffered for a very long time before I finally pulled myself out of it. This is not an uncommon story that men tell me. So it’s really about remembering to not make assumptions that people are doing okay just because they’re not telling you that they are distressed. I’ve got this hypothesis that what happens sometimes a lot of urologists are men, most of the prostate cancer urologists I worked with are men, and so they have their own stereotypes about what’s a male behavior of coping and seeking support and I think that influences them as well, so just being aware of that. If you ask the distress screening question, what you’re telling your patient is you’re emotional distress is important to me and even if they’re not distressed what you’ve done is made this a possible point that we can discuss as a team or as if you never mentioned it then it becomes almost undiscussable and that becomes a barrier in itself. So just be relaxed about it, ask the question, have some referral points available. Patients don’t need you to have all the answers, but they just need to know that you’re interested in their emotional and psychological well-being.

Joseph: Thank you so much Suzanne. What we’ll do is we’ll put a link to your PCFA position statement and monograph in the show notes so people can access that which obviously includes the distress thermometer as well and we’ll put down some of those numbers and contacts from the Cancer Council as well. Thank you for joining today. It’s been absolutely wonderful. A real pleasure to have you on Talking Medicine.

Suzanne: Thank you. It’s been great. Thanks for your interest. Bye.

Joseph: See you later. Bye. Thank you, Suzanne.

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