Damien Bolton Feature

In this episode of Simplify Cancer Podcast, we are talking to Damien Bolton, a clinical professor at the University of Melbourne and head of Austin Urology Unit here in Australia.

Damien is passionate about improving quality of life and the outcomes for patients with prostate cancer, and here is what we cover in our discussion today:

  • The big misconception about prostate cancer
  • How to recognise your own support needs when living with cancer
  • Removing emotion from decision making
  • Why support is crucial through cancer
  • and much, much more!


Full episode transcript (PDF)

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Episode Transcript:

Joe:                             Damien, I was really struck by the significance of this paper that you wrote called: Not all prostate cancer is the same.  Even the name alone: Not all prostate cancer is the same, Damien, what does it mean to you?

Damien:                    I think there’s a key message in there that’s apparent in the title.  Prostate cancer probably more than most cancers varies enormously in terms of its aggression.  The vast majority of prostate cancers of course are the types of tumours that we can just keep an eye on and observe and that won’t need aggressive treatment.  The small number that do in turn give that group a bit of a bad name.  Most men who get diagnosed with prostate cancer will have early curable treatment and treatment that doesn’t need intervention at all.  There is this small number that present with widely advanced disseminated disease that will be fatal to them.  Our message is to try and bring that group forward in the diagnosis to when the tumour is either easily treatable or can just be followed expectedly with the understanding that men will not die of the cancer if it’s identified at that point.

Joe:                             Exactly.  It seems like there’s a lot of misunderstanding from what you’re saying around this prostate cancer.  Damien, what is the most misunderstood belief around prostate cancer?

Damien:                    That misunderstanding is definitely true, and you are forever influenced by the people you know who’ve had prostate cancer.  Traditionally, we’ve seen old men die a painful death, have a long and infirm course with their prostate cancer.  It’s probably the recognition of these men that gives rise to this main misconception.  I think the main misconception of prostate cancer is that if you’re diagnosed with it, you’re going to have a painful death from secondary disease in your bones, or alternatively, you’re going to have requirement for radiation or surgery that will leave you incontinent or impotent.  In fact, those are absolute misconceptions.  The vast majority of men diagnosed with prostate cancer will need either no treatment or will need treatment that gives them very little in the way of side-effects.

Joe:                             Yes, that is incredibly eye-opening, Damien.  I think it certainly takes probably a lot of people aback because of this lack of awareness and understanding of prostate cancer, it can really mean that it’s diagnosed at a later stage, which can really dramatically affect the outcome of your treatment and not only that, the quality of life.  Damien, what are the common symptoms of someone who’s been newly diagnosed and how does that differ from a patient whose disease might be more advanced?

Damien:                    That is a very key point in prostate cancer diagnosis.  The vast majority of men diagnosed with prostate cancer have no symptoms at all.  Indeed, if you can have it diagnosed on the basis of a simple PSA blood test and a subsequent MRI scan of the prostate, then nearly all people identified with tumour that is confined to the prostate at that time can expect to have a curative outcome from their surgery or their radiation if it’s required.  Most men with prostate cancer that’s at a curable stage won’t have any symptoms.  By the time people have got to having symptoms of backpain or hip pain or the like, by that time, the tumour has spread.  We do have very good treatments available for them, but we would encourage all men to come forward and be blood tested to make sure that no prostate cancer is diagnosed at that advanced stage.

In its own way, every prostate cancer death is preventable if you can identify it at an organ confined time and treat it accordingly.  When you’ve had a career in dealing with prostate cancer, you’re always influenced by remembering the number of men that came along with advanced disease that it spread to their bones or spread to their pelvic bones, spread to their spine and spread to their hips and they’ve required radiation and ongoing advanced treatment to provide pain relief.  It’s the recognition of the difficult clinical course that those men have faced that I think drives most medical practitioners to get men to have their PSA tests done regularly and their prostate cancer diagnosed early.

Joe:                             Yes, absolutely.  It sounds like symptoms also play a key part in hopefully picking up things early, even if some people may not be getting symptoms at all.  In your opinion, are there any symptoms that are commonly missed by patients?

Damien:                    By the time men are in the age range where they’re at risk of prostate cancer, they’re often at an age in their lives where they’re starting to get urinary symptoms related to benign enlargement of the prostate more often.  By the time someone is noticing that their urinary stream might be slowing, that they might be having to void more frequently, that they might be having to get up to pass urine overnight.  At that stage, they’re definitely in the age range where they should have their prostate cancer risk evaluated with a blood test.  More often than not, the symptoms that are experienced will not be directly consequential upon the presence of a prostate cancer, which can be particularly small and still produce a PSA change that’s detectable in the blood test.

Joe:                             Damien, I was intrigued to finally see the proof that we actually don’t remember the information received during stressful times.  For example, when you might be receiving diagnosis or discussing potential.  What is your advice for people around how to really best manage this?

Damien:                    In the current society that we live in, we are all very time poor.  We like to do things very quickly and efficiently.  For the vast majority of us, if you are given a cancer diagnosis, you can’t process the full ramifications of that immediately.  The best advice for patients is to stop and think.  To reflect on what they’ve been told and to go back and speak again to their clinician and ask for more information to clarify any questions they have.  Very quickly, the most appropriate management course will become apparent because there are very standard best practice algorithms that most clinicians will operate by.  It’s very hard to process it straight away.  It’s understandably a distressing time with implications for your family, implications for work, implications for other plans you might have.  I would encourage most men to think deeply about this before they embark on treatment.  The vast majority of men if they’re given appropriate treatment will find that their tumour is totally cured either by surgery or radiation and that they’ll have a normal life expectancy that they would have had even if they didn’t have the diagnosis of prostate cancer.

Joe:                             Yes, Damien, I think it’s such a vital point that you raise in terms of having to stop and think and having to process it all and come back for more questions.  I know that when I got my cancer diagnosis, I completely forgot everything that was discussed in probably the first appointment.  Just completely flew out of my mind.  Thank you for recognizing the voice of the patient and the different needs that we all have.  Damien, for a person that’s living with cancer, what advice do you have on how they really best recognize their own needs for information and for support and where should they turn for that?

Damien:                    It’s extremely intimidating to be given a cancer diagnosis.  It impacts on yourself in so many ways.  Emotionally in terms of your relationships with others, in terms of the recognition that you’re going to need ongoing interaction with different people in the healthcare sector.  The most important bit of advice you can give to someone in that circumstance is to slowly go through and recognize all of these changes that might need to be made or might need to be either just recognized with the realization that you might not need to adjust your life because those things are not going to be relevant to you.  For the sake of example, someone who will get a diagnosis of prostate cancer, the first thing they might think of is that they’re going to need extensive chemotherapy.  When, in fact, that is not the case for the vast majority of men with prostate cancer who were diagnosed hopefully at an early stage.

It’s often important to write a list, even not just itemising the changes or the different treatments that are going to be required, but how they’ll impact upon the hobbies you might have, plans for travel, plans for meeting up with friends in terms of other commitments you might have for your family.  Your relationships with extended family or children who might need to be made aware that you have this diagnosis if there’s a strong family history of it.  It’s important just to be methodical and sensible and deal with these in a fashion that takes the emotion out of it because the truth is, with appropriate treatment, most men will be cured from it, and dealing with all of these other aspects of it is just a component of that holistic care that should provide the best outcome.

Joe:                             This is such a great point that you make, Damien, I love it.  Writing things out on paper, it might seem weird or something that you wouldn’t normally do, but I think if you get things out on paper, it’s out of your head and you can look at it and be able to see what’s really going on, like you say, without emotion, right?

Damien:                    I’m a big one for having a list of things and ticking them all off and knowing that the obligations you have, have been fulfilled.  Very quickly for someone with cancer diagnosis when it’s early prostate tumour specifically, they’ll see that, yes, I can deal with this problem, I can deal with the next problem.  For the sake of example, if that person is having surgery as their primary mode of treatment, they’ll be an emphasis on them learning pelvic floor exercises, which they can gain proficiency in very quickly.  People then derive some confidence and comfort for the fact that they are dealing with each of the issues that must be faced rather than the whole cancer diagnosis and treatment following them up as it’s just too much of a big problem to be dealt with.

Joe:                             Yes, exactly.  It’s what the whole key theme I found in the paper that you wrote that not all prostate cancer is the same.  It’s really the empowerment of the patients.  Damien, what are the things that you wish that your patient would share more with you during the consultation?

Damien:                    The key thing is for patients to have an understanding of the disease that they’re dealing with.  That’s a simple thing.  They should understand whether the disease is confined to the prostate or whether it’s advanced beyond the prostate, whether the disease is low-grade, that it may not need treatment or intermediate grade or higher, where it will need treatment.  Then they should know the different options that are available to them and the likelihood that those options are going to return them back to their normal life with the most minimal number of side-effects.  It’s also then important for patients to understand the emotional impacts on this, that they might need to rely on a partner for support during their treatment process.  It might also be important for them to understand the financial impact of it.  If someone is having treatment by radiation, for sake of example, where they might need to go along and have treatment each day for several weeks, that can have a big implication on their ability to return to work.

Similarly, although, there’s less time off work associated with surgery, particularly the more minimally invasive laparoscopic robot-assisted operations, there will be time that they need away from their employment, particularly if they do heavy work or manual work, rather than office work.  The financial impact upon men who do those more labour-intensive jobs is disproportionately high in the diagnosis of prostate cancer.  It’s important that people recognize all of these issues and deal with them in a methodical fashion so that they understand the process that they’ll go through and there’s no surprises for them part of way through their course of treatment.

Joe:                             Exactly.  Also, for a person with cancer, as you know, it can be really weird or even intimidating to talk about symptoms and worries directly with the medical specialist and nurse.  Even their partner, for some of us, it really doesn’t come naturally.  What advice do you have for those of us that find ourselves in that position?

Damien:                    The first thing will be not to be overwhelmed by it.  To realize that numerous men have been down this path and the vast majority of them return to a normal life with very little implications of the diagnosis and treatment of prostate cancer, provided this is found at an early stage, which a simple blood test will facilitate.  Secondarily, it’s going to be important that they understand what their treatment physician is advising them to do.  For sake of example, if their doctor is advising them to undergo scanning to make sure there’s no metastatic disease that has spread to the bones or other organs.  The treatment doctor is probably doing this to dot the Is and cross the Ts of their treatment plan, not because they suspect that they will have advanced disease, which is usually uncommon at diagnosis of prostate cancer that’s PSA testing based.

Similarly, when their treating physician might refer them to a pelvic floor physiotherapist to optimize their pelvic floor strength prior to treatment by surgery or radiation, it’s important that the patient really understand wat’s involved and make a commitment to practice and leave their pelvic floor exercises because your return to a normal quality of life will be much faster and much more easily facilitated by taking advantage of that education.  Then thirdly to recognize that there is no downside in asking more question and seeking more assistance.  I’m a big fan of patients seeing a counsellor if they want to discuss the implications that might happen to their family from any tumour diagnosis.  Support groups, friends who might have been diagnosed with prostate cancer.  Pretty much most men in their 50s know someone who’s been diagnosed with it.  I think the majority of men who have been treated successfully for it are very happy to be of assistance to other guys in a similar circumstance.

Joe:                             Yes, that’s a powerful comment you make again about empowering people to speak up about the struggle, about their worries.  When it comes to really negative emotions that come up for you when you’re diagnosed with cancer, as a man who is really forced to confront those worries and then changes to their daily life.  To have that level of control taken away, what sort of support should you seek?

Damien:                    I think a key thing is to have the support of a trusted friend or partner who you can express your concerns to and with whom you can identify a plan for dealing with them.  Often, if you’ve got questions specifically for your treating doctor, it helps a good deal to go through them and verbalise them and write them down and have them ready to deal with as a consequence of conversation with you support person for when you see the specialist again next.  That might be questions about how this is going to potentially interfere with continence?  How it might interfere with work?  How it might interfere with fertility?  All of those things are questions that pretty much every specialist will have dealt with repeatedly.  It’s a key component to recognise the individuality of those circumstances and how they’ll affect the specific instance of yourself as a patient and writing those things down and putting them forward to your treating doctor can be a great source of relief because there’s usually a very straightforward and simple explanation for the way about and way around any of these problems.

Joe:                             Great.  Damien, you touched on some of the types of questions that you want people to be asking you, but really when it comes to seeing men who are just newly diagnosed with prostate cancer, what are some of the specific questions that you really hope that they would be asking you or their own doctor?

Damien:                    The key points in the early diagnosis of prostate cancer are, can this tumour quite reasonably be expected to be cured by surgery or radiation because it’s organ confined?  Indeed, for most men that’s the case.  Secondarily, the key thing is how they’ll undergo a return to normal activities of life after such treatment.  That might involve education with regard to exercise generally, weight loss, pelvic floor strength, medical adjustments otherwise because people might need assistance with catheter management very briefly afterwards.  That’s a novel and new thing for most men when they’re having prostate cancer treatment.  Most of those issues will usually be well addressed by a urology nurse who is usually freely available through all of the different practices and hospitals where people would usually undertake treatment for prostate cancer.

Joe:                             Absolutely.  This is incredible.  I just want to give a shoutout to all oncology nurses.  Just how helpful they are to all of us who are going through an incredibly difficult time.  Damien, I know from personal experience that it can be so hard to take that first step, to make a phone call to a helpline or to book an appointment with a specialist or to bring up a concern that you have with your doctor.  You don’t really know what to expect.  What advice do you have around dealing with the emotional aspect of cancer?

Damien:                    Your point is very well-taken.  The vast majority of men in this circumstance will do well from discussing their emotional and their general needs with as many people as they can.  It’s a very good idea to discuss these with your specialist, most of whom will be very receptive to dealing with them and will have deal with these sorts of issues on numerous occasions.  Secondly, it’s often very valuable to deal with your general practitioner who will also have had experience.  It’s never a problem to get a second opinion if questions still remain unanswered.  The value of patient support groups can’t be understated.

Particularly for men who might have a more advanced disease and who are going to have a requirement for ongoing therapy with hormone therapy or the like, where they’ll find numerous other men in a similar situation all living productive and fulfilling lives and where they’ll gain a lot of general support.  Similarly, there are multiple websites, particularly those from very well-respected organizations that are prostate cancer advocacy groups and the major universities, both in Australia and abroad that can provide very good information that will be extremely reassuring for lots of men with a diagnosis of prostate cancer.

Joe:                             Yes, these are some incredible points that you make, Damien, I will come back to the information in a second, I just want to really come back to the support groups, I know we touched on this before already.  I’m a huge fan of it, going to online supports groups have helped me tremendously because it’s really filled with people who know exactly what it’s like and it really gives you that other perspective.  It’s fantastic obviously to have the connection with your specialist, your nurse, but also having to hear from someone who’s been in that place before and they know what it’s like, it just can give you that extra layer of comfort.

Damien:                    Absolutely, men who participate in face-to-face or online support groups very clearly identify that they are not alone in their journey.  That other men have been through this on numerous occasions.  That other men are coping well with it and live a life that is very similar if not identical to how they did prior to a cancer diagnosis.  That can be tremendously empowering for me.

Joe:                             Absolutely.  Going back to the information, you touched on solid evidence-based websites, it’s so hugely important in the age that we live in right now where fake news and snake oil salesmen are really making it harder to find real evidence-based advice.  Damian, how do you go about separating misinformation from the truth?

Damien:                    That’s a really good topic to talk about.  Its significance is demonstrated by an occurrence that I noticed.  About five years ago, my colleagues Nathan Larenchuck and John Yaksley and I wrote an article that addressed this, which I think we called: Fake news and clickbait in urology.  We had it published in the British Journal of Urology more as the thought piece we were putting out there that identified this as a problem.  It was one of the five most downloaded articles for the year from that journal.  Demonstrating that this is a problem that so many clinicians recognise.  I would just encourage all patients to recognise that information that is obtained from reputable sites is much more reliable than someone who’s offering a quick solution that doesn’t seem to be supported by evidence.  If it’s put forward as an easy cure for prostate cancer and it sounds too good to be true, then the truth is, it probably is too good to be true.  Most men who have prostate cancer will be able to be treated well and cured without resort to fringe treatments that have very little in the way of long-term benefit proven for them.

Joe:                             Damien, when it comes to dealing with information and separating myth from fact, how has that changed do you think from the perspective of the Covid-19 Pandemic?

Damien:                    Covid-19 has been a huge earthquake I think in healthcare, but the consequent affect on cancer care during the Covid time I think will be the aftershock that leaves a lot of damage, as well.  It’s important for men to realize that just because someone else in the community might have Covid-19, that your prostate cancer won’t stop growing.  All men must continue to be aware of the importance of having PSA testing and following through in a methodical fashion with their treatment for prostate cancer.  Indeed, not just men with prostate cancer, this applies to people with kidney tumours, bladder tumours, women with breast cancer.  The Covid-19 of course will have a huge impact, but we’re fortunate to live in a world and in a system in Australia and indeed, in most of Asia where good treatment for cancer care is available in spite of the presence of Covid 19 in the background.

Joe:                             Yes, Damien, as a medical specialist, you are so deeply involved in cancer treatment and follow-ups and research and clinical trial, what impact have you seen from the pandemic right now?

Damien:                    When the Covid-19 Pandemic started, most of our clinical trials with regard to cancer and indeed a lot of laboratory work was put on hold.  At that time, there was even a freeze on applications for non-Covid 19 related research through different ethics committees.  Now that we’re getting back to full functioning of these areas and indeed, I think the understanding of the implication of Covid-19, which will be around with us for a long time, upon cancer care is something that’s going to be valuable for patients being treated for prostate cancer and other cancers in the future.  There’s no doubt that now we have a much better understanding of how we need to prioritise cancer treatment in the setting of Covid-19 being identifiable in the greater population.  In spite of Covid-19, most men are still going on to get quite appropriate prostate cancer treatment and indeed, treatment for all other cancers at the current time.

Joe:                             Damien, have the guidelines for treatment changed with the pandemic?

Damien:                    Not so much the whole guidelines for treatment, although, we tend to be quite specific and personalized in certain circumstances.  For sake of experience, we’re encouraging patients to have less time in hospital if at all possible.  That has involved a transition to more minimally invasive surgery, such as with robotic and laparoscopic prostatectomy rather than with open surgery.  Similarly, we’ve been encouraging people to have more in the way of short-term admission radiation therapyrather than having to turn up every day for six wees for extended external beam radiation therapy.

Joe:                             Absolutely.  Damien, lastly, are the cancer survivors or maybe those living with cancer, are they more likely to be impacted by Covid-19, is there anything we need to pay particular attention to?

Damien:                    Fortunately, the vast majority of men who’ve had their prostate cancer identified at an early time will be cured as a consequence of their surgery or radiation, if required, or they won’t need additional treatment other than just monitoring with PSA tests.  These people probably are not going to be impacted substantially by Covid-19 more than any other member of the community.  The group that we’re particularly concerned about is those men who’ve got advanced disease.  Those men who might have disease that’s spread and have required hormonal therapy or might have required chemotherapy.  For that group, we’re trying very hard to shield them from anyone who might have been in contact with someone with Covid-19.  That group does have an increased risk and to that end, we re-double our efforts to try and identify prostate cancer at an early, organ confined and curable stage.

Joe:                             Which is more so important now than ever before.  Thank you so much, Damien, I really appreciate you time.


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7 Day Challenge to Take Your Life Back After Cancer!

People expect you to bounce back after cancer, but it’s not easy – you’ve got to deal with changes, fatigue and worry that it might come back… Over seven days, I am sharing practical ideas that helped me get the life I want after cancer – sign up free today:

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