Simplify Cancer

Today, I’m talking to Christoffer, he’s an expert in psychosocial cancer research and we take a plunge into the deep and murky waters of the psychology of cancer, the psychological repercussions of cancer on you and those you love. Here is what we cover:

Christoffer Johansen’s Research Profile

Episode 007: How To Use Your Inner Resources To Better Deal With Cancer

Episode 016: Your Survivorship Blueprint

Joe:                 Hey, this is Joe Bakhmoutski, and welcome to Simplify Cancer Podcast.

Joe:                 Christoffer, you know cancer changes the way other people see you.  That can have a huge negative impact on how you see yourself.  What’s your perspective on that?

Christoffer:       I think that most of the reasons why other people are changing their point of view on a person who has been diagnosed and treated for cancer, is that it raises fears about dying and you are suddenly close to a person who you know is undergoing a really severe treatment, which is life threatening, and you are mirroring yourself in this person.  Therefore, you are actually getting afraid, not that you are going around with an epidemic, speaking on an infectious disease that you in some ways feel the vulnerability of this person.  It’s in a way transferred to yourself.  Therefore, you think that is the reason why, or that is some of the reason why there is a change in the interaction between the people that are dying from cancer and their close relatives and friends and colleagues and so on.

Joe:                 You think it’s they are afraid of dying themselves?

Christoffer:       In a way, their fear of dying, which is a constant issue that we’re talking with is becoming more realistic, so to speak, in a cancer patient, but it is also mirroring out or spreading out in the closes surroundings as a phenomenon.  One of many phenomena that is close to cancer disease.

Joe:                 Yes, absolutely, Christoffer.  What about the self-image?  What about how the people see themselves?  Do you notice that people who are cancer patients and cancer survivors, do they start to see themselves in a different way and perceive themselves to be different and behave in a different way, the way they are out in the world?

Christoffer:       We know from some of the scientific studies, that there is some degree of self-stigmatization that’s coming along with a cancer diagnosis.  First of all, you can imagine that those patients having a cancer, which we know is closely related to lifestyle, for example.  Let’s say, lung cancer is associated with smoking, we may feel guilt, ascribe the guilt to their own behaviour.  Therefore, feel that they are the reason why they have cancer.

I know that there are several places where people who have lifestyle associated cancers are asking for treatment time slots, which is in the early morning or late afternoon, not to meet other patients and to tell them which diagnosis they have and what they are treated for, because they are afraid and do not feel that they can stand up for the diagnosis that they have, because it’s clearly mostly associated with lifestyle.  For that reason, that is an example of change.

There are also these diseases where you hardly lose control with some of the vital functions.  Let’s say you get a colostomy or you get a prostate cancer, so you don’t control your urination as well as you did beforehand.  Then these diseases, you also see a kind of a social self-isolation because it’s difficult to do down to the supermarket or be in company with other friends or conduct activities that you could do beforehand.  In many ways, there are some candidacies, where you see these changes in behaviour caused by the cancer or the treatment.  Of course, it’s also a change to yourself because you have another perspective of life when you are having a diagnosis of cancer.

Joe:                 That makes so much sense, Christoffer.  I know that you did a study that has categorically proven that stress, your personality traits, and depression do not cause cancer.  I believe that’s incredibly important, Christoffer, because it means that you can’t blame yourself for cancer, as some people do.  What’s your view on that?

Christoffer:       Well, we set out on this investigation because it was a quite prevalent point of view in the late 60s and 70s, and in the last century, that stress is a major risk factor for severe disease.  If you ask people today, I think you would get the response that stress can cause many of the severe chronic diseases.  Don’t forget that people believe when you’ve got ventricular ulcers from stress, they also thought that tuberculosis was caused by stress, asthma, this disease and so on, was in the beginning diseases where you thought that this was caused by exposures in your surroundings that alerted you.

We have a large population base, using nationwide data and access to almost complete follow-up information.  Not been able to confirm this hypothesis enough, it’s close to now 20 large-scale studies.  That is, of course, a very interesting thing because it’s a fortification of the idea that the factors you mentioned before, personality traits, depression and stress can cause cancer.  I think it’s very important to inform people that you cannot blame yourself, with regards to these factors.

Of course, you can blame, to some extent, yourself for other factors, but all the biologists that I worked together with here, they always say it’s a lottery.  It’s by random that you achieve cancer, you cannot very often ascribe the entire disease to yourself, because, as you know there are many people who can tolerate smoking.  Many people can drink enormously amounts of alcohol and never get any disease.  We don’t really know who the ones at risk are.

Joe:                 Yes, that’s certainly great news, Christoffer, because like I said, we don’t really have to feel guilty anymore.  On the flipside of that, some people believe that having a positive attitude, a positive psychological approach can help deal with cancer in a better way.  Is there any evidence, do you think, to say that it’s true?

Christoffer:       I don’t think there’s sufficient evidence that if you behave in certain ways, or you are very positive, have a positive-mindset, that you have a better survival chance.  What changes if you have this attitude is, of course, that you will probably change your behaviour.  Therefore, you could say that behavioural changes may play a major role.  In some ways, what I’m saying is not the mind factor in itself probably cannot change the prognosis of the cancer disease, but what is coming in the aftermath of that, can of course have some impact.

The starting point of this, what is done is from a UK-based group, Steven Greer’s group, who in in the late 80s published a paper that showed that fighting spirit in cancer patients was superior compared to helplessness or hopelessness in surviving cancer.  This was a way of putting words on the entire concept of coping with a cancer disease.  The same group, ten years after published a follow-up study, in which they now had information about dramatic factors related to the disease and couldn’t confirm their prior results.

Which, of course, was a relief, because what about all those cancer patients who hadn’t been positive all the way through, with negative days or bad days, should they then blame themselves that they were not coping with life entirely positively.  Therefore, in a way, also could blame themselves that they didn’t survive the cancer disease.

I think my take on all of this is that, of course, you can say that mindset plays a role because it influences the risk factors we know.  Today, we are saying that cancer patients should have a lifestyle which is the same as people keep to or stick to, if they want to avoid cancer.  The impact of a psychological intervention is that you probably will have a better life, in terms of a quality of life, a better understanding of your situation.  The secondary effect could be that it influences your prognosis.  That’s not because you have a better mindset, but because it can potentially have a better opportunity to change your behaviour.

What we also see is, of course, that those that can afford to go to a psychologist will be more affluent, have a lot more education and be living in marital relationships.  At this point, the fact that social inequality probably is of much more importance when we talk about survival.  Even in the Scandinavian countries, where you have a public health system, which means that you have free access to all kinds of medical services, from the GP to the highly specialised oncology ward.  In each country, we have up to 20 percent difference in survival when you look at any social marker and for any cancer disease.  This is across all cancer diseases.

Joe:                 Wow.  What role does it paly?  How does it work?

Christoffer:       It works, I think, in the way that people with short education, living alone, having competency of data and information of their cancer will potentially have more capability when they’re diagnosed.  They will be diagnosed at a later stage.  Probably their compliance to the treatment will be lower.  Also, the resources they have at hand when they leave the treatment situation are fewer.  Therefore, they are not in the same situation, so to speak, to start off the life as a cancer survival.

Joe:                 Well, Christoffer, that’s certainly an eye-opening finding.  I never would have thought of that.  What do you think can be done about it, for us as a society, what can we do to change that?

Christoffer:       Well, most of our modern industrial societies, of course, there are variations, but that’s builds on a contract where you expect that if you pay tax, you will have a uniform homogeneous return from government in the form of public pensions, free schools, the highway should be nice, we will have green parks and clean beaches.  We expect that our children could go to a school that would give them a basic education.  All of that said, which I think is a meaningful qualitive idea, and it’s very well-developed, as you know in the Scandinavian countries.  Still producing equality.

That calls, in my mind, for inequal treatment.  What happens today is that we give all cancer patients, in principle, the same treatment, the same package.  Now, if we really were taking the evidence seriously, we would understand that we would make inequal treatment to achieve the equality.  It would be achieving homogeneity in survival, we cannot do that by having heterogeneity in the way we treat patients.  That means that the well-educated, affluent citizen diagnosed with prostate cancer, will not have the same follow-up, the same support from nurses, the same intervention, the same surveillance as the cancer patient with prostate cancer coming from a poorer condition.  That’s very much against the whole system because we do not expect that people would be willing to pay tax and support the society, if they wouldn’t get some kind of return on their investment, so to speak.  How would me make a policy where we then have citizens that accept to pay more than they gain?

This is all the case now because most of them that are paying to the public system, they have, in parallel, private pensions, or private health insurances.  They have all kinds of private or union-based or pension situation-based things that are running.  This means that it’s also a societal discussion because you could carry on this thinking in relation to: Should I then have the pension from the government?

Well, maybe not?  Should we have free kindergarten?  Well, I should not have that.  Maybe I should pay some more for it, or should I pay a little bit for the university because I can afford it?  This is a big thing, so to speak, to talk about.

Joe:                 Absolutely.  Christoffer, sleep problems are common during and after treatment, what do you recommend some of the ways to deal with that?

Christoffer:       Well, there are now just coming out of another Danish group, a very interested web-based Stem program that I did see, coming out in the journal of the national cancer institute, which was a study where they showed a web-based application actually significantly helped patients with sleep disturbances.  There are also many discussions ongoing about the combination of cognitive models, cognitive approaches and physical training.  You combine various interventions in order to achieve some kind of an effect with regard to sleep.

What we don’t know so much about is, of course, how much is caused by the cancer disease?  How much is caused by the fear of having the cancer, the fear of recurrence?  How much is caused by the treatment?  Or, how much is simply at play because you are now not 18 years old and can sleep forever?  You are 65 or 70 and you are an old person, an elderly citizen, who is expected to have some kind of sleep problem, so to speak.  Which means shorter sleep periods, irregular sleep, you wake up maybe one or two times at night and then you start sleeping again.

Whereas, if you are below the age of 20, you can sleep continuously for many hours.  Then that’s not the case for citizens that old, therefore, we are in a way also a little bit stepping around and not really knowing, not the severity, but the true incidents of this phenomenon.  Although, today, we would say that that is one of the big three late effects across all cancer diseases: Fatigue, depression, and consistent pain problem.  They’re probably the big three.

Joe:                 Just to go back to that, so the big three problems around cancer are…?

Christoffer:       Depression.

Joe:                 Depression.

Christoffer:       Pain.

Joe:                 Pain.

Christoffer:       Fatigue.

Joe:                 Fatigue.  Okay.  Is the depression that we’re talking about, is this different, this is clinical depression?  Is it?

Christoffer:       Right, yes.

Joe:                 Yes, wow.

Christoffer:       Yes, this is not different from the so-called ordinary, if you can talk about that, depression.  This is a regular depression that fulfils criteria for depression in accordance with transformation system of diseases.

Joe:                 Yes, wow.

Christoffer:       We say that 20 percent of cancer cases will experience a clinical depressive episode during the first five years after diagnosis.

Joe:                 Wow, those are staggering statistics.  One in five cancer survivors will get depression?

Christoffer:       Within the first five years after they were diagnosed.

Joe:                 Within the first five years?

Christoffer:       Yes.

Joe:                 Wow.  What are the factors that you believe are responsible for that?  If we think about cancer survivors, I guess cancer is gone, you’re trying to live a normal life.  Obviously, some you might have something inside the facts, you might have the fear of the cancer coming back.  What are the biggest factors behind this depression?

Christoffer:       Of course, it plays a role.  Social factors and age probably plays an age.  It’s difficult to say because we do not have large-scale studies in which we have investigated across different cancer diseases.  There are, of course, you could say that there are vulnerable patients, and these are mostly outliers, meaning that if you are having difficulties in your economic condition or your resources.  If you have had a complicated disease situation during your treatment, or if your tumour is difficult to find.  For example, systemic therapy that responds to it, that is playing a role in the cancer treatment you can provide to this patient.  All of these factors that I mentioned here are factors that play a role.  Most importantly, it is that we do not have, in any country, a systematic screening for depression.

We don’t know how we should do it, when, and how often?  That needs to be much more clarified because we have shown in a couple of large studies, that if you have depression, you actually die earlier.  Mostly because you are not following the protocol of treatment that you should.  Either because you are, when you’re depressed, not able to do it, or it’s difficult for you, or because you’re not provided this treatment because you, as a depressed patient, behave differently in the out-patient clinic, or you don’t comply with the issue that’s there, with the conversation or the diagnosed workout and so on.

There are many reasons.  What I’m trying to show you is this complicated puzzle of reasons and risk-factors for that system.  I want to point at it because it is, in my mind, overseen and overlooked, an overlooked issue.

Joe:                 Absolutely.  Christoffer, mindfulness has gained a lot of attention lately, as a tool that can help to deal with anxiety and depression.  How does that translate into dealing with cancer?

Christoffer:       Well, first of all, don’t forget that mindfulness is a Tipton practice.  One of my colleagues, who is a professor in psychology at the university of Copenhagen, went out to Tippet and showed them the questionnaire we are using in the western world to find out if people are mindful.  Then he translate it back, this question, to Tipton, he has then made a short documentary in which these monks are laughing for half an hour because the questions we put to say if you’re mindful is so stupid and doesn’t have anything to do with being mindful.

What we’ve done is, we’ve taken a technique, we love the Asian mysterious sitting in the Chorister somewhere, deep into the Tipton Mountains living on Yak milk and eating dried meat and different mushrooms of mindset qualities, and all that mysterious way of living we love to transform into the western world.  Going back to the late 60s, where all this idea about meditation, yoga, Buddhism, all these eastern philosophies are a big thing in our mindset because we think that is more original than our own way of living.  That’s also kind of a huge, collective placebo in the entire aspect of mindfulness.  On the other hand, I think it’s remarkable that many studies have shown actually an effect in the psychological function of people that went through this course.  We tried it out also ourselves in a randomized trial.  We found significantly an effect on depression and anxiety.

I believe that there is an effect.  I’m not sure whether it’s the mindfulness in itself, so to say, but it is something within that package, which I think is linked to these exercises which are truly connected to being present in the moment and being aware of what’s going on and being, as a citizen, living in a world full of distracting mobile phones and media things going on, on different platforms.  Of course, we are in a way in desperate need for originality, which is being who we are, and that need is extremely challenged when you are diagnosed with cancer.

Therefore, it has really a message and appeal to cancer patients.  I think you could say that it does play a role but also, I love to remind you that there’s also a collective placebo function going on, because we have enormous adoption going on around all of this eastern world life philosophy, because we have this imagination that they are thinking more original and clever than we are.  I’m not quite sure this is the case.

Joe:                 That’s good to know, Christoffer.  We know our way around it, as well.  Christoffer, if mindfulness can help, what do you think is a good resource for someone who wanted, if someone had cancer, and wanted to help them deal with the whole mental side of it and they wanted to explore mindfulness, what would be a good recourse?  Is there a book or an online intervention that you can recommend?

Christoffer:       I cannot go straight into recommendations because I simply don’t know the market good enough, but I could say that I’m always very keen to advise you in these matters that you have to go to professionals.  That means that, in my mind, that one of the things that is a little bit challenging in the world of cancer is, of course, that there are so many people who see the business opportunity in patients, because they are so vulnerable and open-minded because they’re in desperate need of taking action themselves, to become editor in their own life, because having a cancer is the ultimate loss of control.

Therefore, you feel that you are – yes, you want to gain that control again and hear such techniques as mindfulness, which is one way.  There are various techniques which are offered, and people are willing to pay whatever it costs to gain that control again, if they could gain some kind of control.  I cannot, Joe, come up with a specific choice I would do.  What I would definitely go for the most professional, that people that are attracted to the university environment, or connected with hospitals, or the medical profession is, in my mind, some kind of a quality signature that you need in these cases.

Not in this situation, where you are looking for help, for example, mindfulness, diet, physical exercise, how do I reduce my alcohol consumption?  What about stopping my smoking?  Can I change my work life?  All of these things that you feel are calling for your attention when you’re a cancer survivor, the more professional support you get, the more hopefully evidence-based it will be.

Joe:                 That’s great advice, Christoffer.  Another thing I wanted to ask you is, I know that you looked at using book clubs to support mental health and cancer survivors.  I find that idea fascinating.  What did you find out?

Christoffer:       We didn’t find out that much.  First of all, the whole book-reading come from this new phenomenon in many parts of the world, where people are reading in small groups and discuss a novel or some poems or poetry.  Then have a social gathering and that’s one way of sticking together when you’re no longer belonging to a family, you’re not belonging to these stable environmental conditions that we are beforehand were a part of.  In this study, we just try to find out if it could work, could it not work?

Of course, it can work if you are a book-reader, you love to look.  You have a big heart for that.  We’re now also working with the idea of having cooking classes for wives who are married to prostate cancer patients, to relieve the stress of being married to a prostate cancer patient.  That’s another idea in this area.  All in total, you can say that going back to my previous comments, that these ideas are all, like mindfulness, are all coming out of a middle-class culture, where we believe we have middle-class ideas about what the good life is.  It’s a very female universe, it’s a universe based on the idea of talking about your problems, about expressing your emotions.

It’s about dealing your inner thoughts with other people.  All that is maybe not always the same ideas when you live in different conditions.  There are huge studies, ongoing, showing that the psychology, or the psychological capital, we would call it social capital with which you enter the cancer world is completely different from our different backgrounds.  These initiatives, which I’m also part of myself, have severe limitations because they don’t reach out to patients that is maybe in most need of it.

To those who are actually our friends, so to speak, because they’re coming from the same social background as we are, and therefore they have a high compliance with our ideas about the good life.  Today, the largest challenge comes from the patients that are underserved, these are the difficult patients.  They don’t show up when they have an appointment, they are smelling of tobacco when they enter the out-patient clinic.  They are talking loud in the waiting room.  They are courting with their co-patients.  They don’t read the magazines that we put out to silence people in the waiting room.  They ask for the remote control, so they can look at formula one race at the television when they’re in the waiting room.

They don’t want to see a romance comedy.  They are arguing with the nurse when they go out, that the doctor was an asshole because he didn’t do this and that, and so no and so forth.  My government just released a strategy for digital health technology for all in five years in Denmark.  Every picture in that digital technology strategy is completely clean.  It’s nice people in suits, it’s people with a clean shirt.  It’s people who have smiling kids, but that’s not the reality.

Therefore, we’re constantly seducing ourselves to forget where the real challenge is.  Going back to your question about reading a novel, well, for some people, this is of course a wonderful thing to do.  It could be a way of coping with your cancer disease, but we are not addressing the real problems.

Joe:                 In terms of self-help, in terms of things that you can do yourself in order to try and make it better for you, what would you say are the top three things that would help someone to deal with cancer, mentally, emotionally, socially?

Christoffer:       I don’t know.  I could point to something, but I’m not sure that I’m pointing to the right three.  I think it’s such an individual question.  I think it’s quite overlooked how much your daily lifestyle influences your life with the cancer disease.  It is extremely under investigated area.  I would point to that as one area.  That is much more important that we think because there are so many side-effects in terms of psychological and social wellbeing that we have overlooked and have not imported into the clinic, to the extension that we could do it today.

That would be one area.  I would also point to the area that you are not having your cancer disease alone.  You are always having relatives, a wife or a husband, children, colleagues, whatever, that are influenced by the disease.  Today, we understand and treat disease as a disease belonging to the individual.  In a way, you could say that the disease is belonging to social construction.  This social construction being you, the patient, but also people around you.  Having said that, I would then say that this area, the relationship, it’s extremely important to nourish and secure.

Both seen from the point of the relative and from the point of the patient.  My third advice would be that you should take every chance in life to become the editor in your own life.  The more you can edit, the better.

Joe:                 Well, that’s very profound, Christoffer.  As you said, most people do not experience cancer alone.  They have partners or significant others who are particularly vulnerable, emotionally.  Often, they need as much support as the person who has cancer or who has cancer.  What can be done to make it better for them?  What can be done to support the partners or the close family of those people who have cancer?  For them, from personal experience, I can say it’s almost harder because not only do they have to support the person who has cancer, but they also have to try to maintain some sort of resemblance of normal life.

Christoffer:       I think that today we have this medical marvel in which we treat cancer as an individual disease, that the tumour belongs to the person.  That’s okay.  Seen from a logical point of view, but it doesn’t make sense when we go into every other aspect of life.  This also goes for diabetes and cardiovascular disease, for obesity, for arthritis issues, for thyroid.  Every chronic disease has a partner, so to speak.  Every citizen with a chronic disease has a person or a partner.  Partner not being a spouse, but one person you partner up with, you team up with.

In my mind, we have to rethink the medical model and first of all, we have to give birth to a model in which we use the patient and the closet relative as major resources in our treatment.  Second to that, we have to rethink the model, which is now sequential.  It means that we are doing one thing at a time, whereas we are facing the diagnostic phase.  Then we are planning and outlining a treatment phase.  Then we have a clean-up phase called rehabilitation.

Then we have a very late clean up phase called, living with late effects.  What I don’t understand why this is the case, well I do understand that’s the whole way in which the medical profession has organised treatment and specialisation, which is very high in our modern societies.  In terms of the model, you need to rethink that model and make it much more integrated so you, from the beginning, try to pre-habilitate the patient.

There are patients who are obese, have a weight problem, they are smoking, they have alcohol problems, they have dietary problems, work problems, whatever, at the date of diagnosis.  We know we have a window of, say, four to six weeks because the first time, we always talk about knife-time, meaning, when are we putting the knife on the skin?  When are we starting?  Knife-time means that when knife-time starts, it’s a metaphor for: Now we start the treatment.

In that time window, between diagnosis and treatment, today, we say to the patient, “Go home, drink some red wine, wait for me.  I’ll send you a letter and then we call you in and then we start off the treatment.” Instead of having a very active time period, where we could engage the patient and the partner in changes that would make the patient much more in a situation where he/she could tolerate the nightmare of treatment that we are starting off, at the date of knife-time.  Therefore, I think the entire model now is in a sequential outline, is a catastrophe because in modern society, we are not having – when my granddaddy had Parkinson’s, he was having this as his only disease.  When my mother died, she had three diseases.  When I die, I will probably have six.  You will have eight.  My kids will have ten.

That means that having a disease being chronic, chronicity, so to speak, is calling from another paradigm in the way we’re treating these diseases.  Which, by the way, all are treated independent of each other.  Which is stupid.  The multi-diseased patient calls for another model than what we did in the old times, when we only had one disease at a time, because we died from that disease.  When you got a mild infection, you died.  It was very easy.  When you had your cancer, well, we could do something, but then you die.  Now, we survive from all of these diseases.

This means that when you come to the hospital with one disease, in this case cancer, you have other diseases already in place and you are treated for them.  We expect you to survive 40/50 years with this disease.  Therefore, this question you’re putting me is both going for a different paradigm in who is diseased, the epidemic, the social epidemic quality of cancer, and how do we treat cancer patients, not as an isolated entity in the world, but as a disease among several diseases.  The new treatments we’re giving these cancer patients will give them other chronic diseases.

Now, we label them late-effects, but what it is, in fact, is cardiovascular disease, it’s diabetes.  It’s changed in the new function, it’s changed in the neuroethical system.  You cannot do this and that, you have physical disabilities.  All that is diseases.  It’s not something which is specific for cancer.  Well, it is because it’s specific that we are seeing it in cancer patients, but the diseases would be treated symptomatic, as if they had raised before we had our cancer.  These two aspects cause for differences in the marvel that we treat cancer.

Joe:                 Yes, fantastic, Christoffer.  One thing you touched on before was, you said that there are many factors that are not really investigated or given enough attention in terms of daily life and daily practice when it comes to cancer and to deal with cancer mentally.  What are those things and what can we do about it?

Christoffer:       Well, I’m not a psychologist, don’t forget that.  I’m not the real expert in some aspects of things I would know about.  What I think that the entire area of psychological or psychiatric aspects of cancer has been overlooked.  Mostly because we don’t know really how to deal with it, or should we in the oncology clinic deal with it, or is this an area for the GP, or who’s responsibility is it?  Why aren’t you just happy that you survived?  It’s difficult for me, Joe, to come up and say this is how you do.  I think I don’t have any first aid book that I can tell you, but I can tell you that you have to take it seriously, you have to take it seriously both for the patient and for the closest relatives.

That the cancer disease is actually calling for more mental interventions than you believe, so to speak.  This is also the case for diabetes.  This is also the case for cardiovascular disease.  It’s not different from all of the other chronic disease.  We’re not used to seriously setting up a model where psychology and social factors plays the same role as the somatic interventions.  Most of the reason why we are so thin in this area, so to speak, is that in my mind, psychology and social workers haven’t been good in documenting the effect of their interventions.

Where medicine has this century-long tradition of documenting, describing the effect of the interventions they practice, this is not the case for psychology and social studies.  Therefore, they have been easy targets for reduction in staff when hospitals are cutting down in the public sector.  What you see is that in the private hospital sector, for example, in the U.S., the access to these resources are enormous, because you can pay for it through your insurance.  Insurance-paid hospitals have a completely different setup, a completely different orchestra of things you can offer the patients.

When we talk about public systems, as we know in Australia and we know here in Scandinavia, UK, Holland, Germany, and so on, Canada, it’s typically systems that have been threatened by cut-down, cut-back, because governments feel they have to show that the public sector is effective compared to the private sector, in order to secure the survival of the public sector.

Joe:                 Yes, that’s fantastic, Christoffer.  There’s lots of think about.

Christoffer:       Yes.

Joe:                 Thank you so much.

Christoffer:       Okay.  It was a pleasure, Joe.  Take care down there, right?

Joe:                 Yes, absolutely.  You too.

Today, I’m talking to Justin who found that when document your cancer journey, it helps you and gives you a higher purpose in helping so many others by promoting cancer awareness. Sharing your story is a fantastic way to transform these tough times when you’re dealing with cancer, to share your experience in such a powerful, so you can really refocus and re-centre your life around something positive.  Here is what we cover:

A Ballsy Sense of Tumor

Justin Birckbichler | Cure Today

Episode 003: Building Knowledge Beats Cancer Anxiety

Joe:                    Justin, I want to start with your life before cancer. What was that like?

Justin:              That was a really good year, 2016, prior to getting diagnosed.  I had applied and been accepted to the Google Innovator Academy, so I got to fly out to the Google headquarters in California for a couple of days, I got engaged, we bought a house in a different area of Virginia, I quit my job and found one that was more aligned to my educational beliefs, we got a puppy.  Everything was great, I was very active, you know, I wasn’t as in shape as I would have liked to, but I had some physical fitness ability.  It was a good year, really, up until I got diagnosed. 

Joe:                 Right, it’s pretty crazy.  What was going through your mind when you first found out you had cancer?

Justin:              I discovered a lump in the shower when I was just doing my monthly self-exam.  I feel a hard lump, I haven’t felt this before, so I was a little baffled.  Like I said, we had just moved to a different area of Virginia, so I didn’t even have a doctor at the time.  I had to locate a doctor.  Then, basically, the first time meeting this doctor, I asked her to grab my balls.  I don’t normally even kiss on the first dates, so that was jumping through a couple of steps right there.  I just kept wanting answers.  From that doctor, they bumped me to an ultrasound and then to a urologist.  I just wanted answers.  When they finally told me I had cancer, it’s going to sound weird, but it was almost a relief because I had answers.  Then it all hit me, “I’m 25 and I have cancer.  What do I do next?”

Joe:                 Yes, well that’s a big shock.  You said it was almost a relief.  How did you know what was going on?

Justin:              I basically just asked my urologist, what’s the next steps?  My urologist was incredibly throughout the whole thing, he was like, “You’re going to need surgery, and quickly.” I never really had time to react or really question.  I just had to launch into the action steps of things.  Basically, I just asked the questions, what’s the next step?  That’s how I figured out what was going on.

Joe:                 Yes, I know your way with cancer.  I went into the zone, where I knew people around me were saying something, I knew the words, but I really couldn’t take it all in.  It was just so hard to deal with it.

Justin:              Yes, absolutely.  It was hard to try to figure out what I was doing and then how to tell people the other same information.  Eventually, it was like, when there’s stuff to tell you, I will tell you.

Joe:                 Yes, exactly.  Justin, do you feel as a man you’re expected to react to cancer in a certain way?

Justin:              Yes, that’s a lot of what I do now on the survivorship of things, is have a steady resolve, like, I’m going to get through this.  It was hard to be emotional about it, my grandfather had cancer, he passed away from it a couple of years ago.  He never really talked about his battle with cancer.  You always see in the media, female celebrities talking about their different forms of cancer and so on and so forth, but you don’t necessarily see a lot of people talking, unless they’re older men, talking about prostate cancer or something, to that effect.  I felt at first it was something like, I’m just going to go through this and keep it to myself, but then that obviously changed, as we’re here talking about cancer.

Joe:                 Exactly.  On the practical side of things, you have a lot of stuff to juggle when you have cancer.  You have work, you have people you care about, then you’re running around for tests.  Then you go for treatment.  This everyday reality for cancer, how did it work out for you?

Justin:              With testicular cancer, it’s highly curable but it’s very aggressive, so you have to move very quickly.  At my job as an elementary school teacher, I basically told my principle, listen, I’m expecting I have some sort of lump, he’s like, “You go and get this taken care of.” I literally got my ultrasound during my planning period, during school.  I’d left for 45 minutes, they wanted my balls, and then I went back to school.  I wish I would have had a shower in between those because that was not fun teaching for the rest of the day.  Then when I did get diagnosed, and said I needed surgery, that was great.

I never had to worry about that.  My fiancé, wife now, she was great.  We were just talking about updating people.  I just had a really good support team.  I was very fortunate that as I was gearing up to go to chemo and I needed my port place and I needed to get some other random bloodwork done, my principle would say, “Hey, you can come in an hour late or leave and hour early or whatever”, to try to conserve a lot of my sick leave.  Then, eventually, when I did go into the active treatments, at a stage, I was on medical leave for three months.  I didn’t have to worry about work at that point.

Joe:                 Yes, that’s fantastic when you’ve got work that’s supporting you so much through it.  I guess cancer can be pretty hard to take emotionally and mentally.  It certainly was for me.  Nothing is for certain anyway, everything is up in the air, you make all of these plans and you don’t really know how these things will turn out.  How did it affect you?

Justin:              I’ve been notorious for keeping my emotions in for all of my life and probably even including now, I’m getting a little better.  Not as much as it should be at 26.  It was definitely affecting me.  What I did to try to relieve that and not bottle it up, because I had already felt myself starting to get a little angsty or what have you, I started writing down what was happening.  It was more of a record, just for myself and then also as a way to get that out.

It was definitely affecting me, because to be perfectly honest, from surgery to starting chemo was exactly one month, so I really didn’t have a lot of time to let anything affect me at the time.  A lot of the emotional came afterwards, after active treatment.  That was kind of a blessing that everything moved so quickly.  Writing is really how I got through a lot of the emotional stuff throughout.

Joe:                 When you say writing, did you have a diary?

Justin:              It was just a Google Doc that I wrote everything from the day I found the lump, up until present day.  I still continue to write, but now it’s more of a public form.

Joe:                 What did you do with that diary?  Is it still there or did you put it all up on your blog?

Justin:              It’s all up in my blog now.  It wasn’t even called a Ballsy Sense of Tumour at first, it was just called the Cancer Chronicles, which then I adapted it into Chemo Chronicles for part of my series.  Yes, there are a couple of different labels on my blog, but the first about 15 or so posts were the original journal, if you will, of the Cancer Chronicles.  Then I eventually stopped writing on that and then I still write drafts in Google and then I publish them on the web.

Joe:                 I think that’s such a fantastic advice, Justin, that you found a way to deal with your emotions through writing.  It’s something that isn’t really obvious to most people.  I think I read that in one of your articles, as well.  In terms of your emotions, as well, you mentioned that it hit you a little bit later down the line.  How did that work out?

Justin:              I finished my active treatment in January of 2017.  Then they said I was in remission of March.  Things were trucking along just fine.  Then around sometime in the summer, I noticed that I was just feeling down a lot and angry, and for no apparent reason.  For all intents and purposes, I didn’t have cancer anymore, I should be happy, but I wasn’t.  Then it finally took me until September, just a couple of months ago to really admit, hey, something’s definitely well off here.

I talked to my oncologist and I was like, I had suffered through depression in high school.  I was already familiar with what that feels like and what to look for.  I’m feeling a lot of the same things, I need help.  He prescribed me some antidepressants.  After tweaking the dosage for a while, that’s been hugely helpful.  That was the big thing I noticed is, I forget what the one quote I said once, it’s like, treating cancer was hard physically, surviving cancer is hard emotionally.

That’s what I noticed, the survivorship stage while it’s physically easy and I’ve gotten back into shape and my hair’s regrown and all the side-effects associated with chemo, they’re all gone, but the mental scars are still there.  I’m not just writing about testicular health and men talking about their balls, that’s the other thing I really advocate for is mental health.

Joe:                 Absolutely.  Why do you think that happens?  Why do you think that, like you described, you had chemo, the cancer is gone, everything is supposed to turn out well, yet, you still felt this downward slide emotionally?  Why does it happen?

Justin:              In my opinion, I’m not a doctor, but what I think it is, is everything moves so quickly.  Like I said, it was a month from surgery to chemo, and then it was three months straight of chemo.  Then it was three months straight of chemo and then I was suddenly thrust back into the real world.  I never took the time to process.  All of sudden, a rubber band can only stretch so far before it’s going to snap.  I think it just all came to a head and I think not necessarily – I still had my writing and everything, but really, I had writing, I had exercise, but there is something that just changes within you.  You shouldn’t be afraid to ask for help.  That’s just what I noticed.

Joe:                 Absolutely.  Speaking of asking for help, how did your family, your friends, how did they react?  Did they support you in the way that you wanted to be supported?

Justin:              In all but one case, and I’ll get into that one case a little bit more, everybody was supper supportive.  I could not have said anything.  My mom, who lives in Pennsylvania, which is a couple of hours away from where I live, as soon as I said I was going to need surgery, she was like, “I’ll drop everything to come take care of you.” Then she took extended leave from work to come take care of me while I was going through chemo, so my wife could go work, so we still had some sort of income coming in.  Everybody was super supportive; my friends were all more than great.

I did have one friend who when I had to pull back some of my projects that I had been working on prior to cancer, had pulled back because I had to focus on my health, then I decided to start all of my awareness efforts.  She took that as a personal attack, that I didn’t want to work with her, whereas, I had a change in what I saw as important.  Her direct quote, one night she said she felt that I was pulling back from our friendship.  She said, “I thought our friendship was stronger than you getting cancer.”

Joe:                 Wow.

Justin:              I stopped talking to her at that point.  I emailed her a month or two later and I was like, “That wasn’t okay to say.” We’re not friends now to this day, but it was just interesting that random people on the internet that I’ve never met were more supportive than someone who had claimed to be my best friend.

Joe:                 Yes, wow, that’s rough, man.  The other thing I want to ask you is, we talked about how you now speak so much about men’s health and the mental health.  I’m sure you spend a lot of time thinking about all of this stuff and trying to digest it all.  Justin, what do you think that is different about men facing cancer?  Do we look at things in a different way?  Do we process things differently?

Justin:              I know with me and the men who I’m close to in my life, we’re very solution-oriented.  We want to know, here’s the problem, here’s how we fix it, we fix it, what’s the next step.  Or what’s the next problem, more accurately half the time.  Which is a pragmatic approach, it’s great sometimes, but it’s also terrible sometimes, because you do need to take care of the emotional side along with the physical side.  I think on top of that, men just don’t talk about their health as much as they should.

I’m running a research study right now on men and going to the doctor and testicular exams.  Most guys who I’ve asked about are great and they say that they’re more than happy to participate in this study, in this survey.  They ask me questions when I ask them: Does the doctor talk to you about how to do a self-exam?  They’re like, no, but I want to know how.  Then I’ll interview a group of guys, then one out of nowhere will be like, no, I don’t want to participate.

I’ll be like, okay, it’s like as a teacher, I should say, don’t use peer pressure, but I’m totally trying to get this guy peer pressured into this to talking about it.  It’s just kind of insanity to me, how you would rather not have embarrassment, just to avoid talking about something that is very, for all intents and purposes, maybe it’s a little embarrassing, but it could save your life.

Joe:                 Yes, absolutely.  What about your partner, how did she take it all?

Justin:              She took it very well.  She was a great caregiver, like I said, my mom and get were a caregiving team.  One of them would take care of the house and the pets and all the assorted things and the other one would take care of me.  She did a very good job.  She really put on a strong front throughout the whole process.

Joe:                 Yes, that’s fantastic.  Do you think that she’s had the support that she wanted from the people around her?

Justin:              I think so.  She’d have friends who would check in on her, to check in on me, but also to check in on her and her work was very good about it.  If she needed to leave a little bit early to take care of me.  I think a lot of times with cancer treatment, it’s so focused on the patient, but I do think that her support system did a very good job of focusing on her as well.

Joe:                 That’s great.  Justin, I went to deposit some sperm away for safe-keeping before starting my chemo.  That was a really bizarre experience.  You felt like no one thought this thing through from the perspective of the person who was actually going through it.  There was no sound isolation, I could hear these two people talking in the corridor.  There was a few DVDs in there, it was just awful.  It was the worst attempt at porn I have ever seen.  There was nothing to be inspired by, I was lucky I came prepared.

Justin:              I know exactly what you’re talking about.

Joe:                 How did that go for you?

Justin:              I had to do my deposit, if you will, about seven days after surgery.  That was not fun.  Like you said, there was this gross couch lounge chair in there.  I was like, I’m not sitting on that because I don’t even know.  Yes, it was not a pleasant experience.  I’m glad I only had to do one deposit because I do not think I would have gone back for another, had they been like, “Something’s wrong here.”

Joe:                 Justin, that story is worth at least one blog post.

Justin:              Yes, I wrote a little bit about that, that would be something to revisit another time because when I wrote that blog post, I was like, no, I’m not going to get into this too much.

Joe:                 It’s a painful memory.  Justin, I was reading about the time that your hair started falling out during chemo.  That actually triggered the memory for me when I was doing chemo, where it all started was actually my pubic hair.  My pubic hair, of all places, that was like a slap on the face, you know?

Justin:              Yes, it’s interesting because they’ve shaved my pubic hair area for the surgery.  I just thought it had not grown back.  Then I was like, there’s nothing there anymore.  It actually started falling out in my armpits first and then my beard and then my hair.  I never had to worry about it falling out from my pubic hair because there was nothing there.

Joe:                 Yes, it’s interesting.  I never really thought about that.  I did, for my procedure, they didn’t shave it.  I guess different places do it differently.  Could you please talk about your blog, how did it all start and why is it important to you?

Justin:              Yes, what I was talking about earlier, initially it wasn’t going to be a blog, it was just a Google Doc that I was writing my story.  I shared it to a friend who is now my editor and chief of the blog.  She was like, “This is pretty good.  You should make it more than just a private Google Doc that you’re sharing with me.” The biggest thing that we talked about at first was, okay, cool, but what do we call it?  It was called the Cancer Chronicles, that was just the title of the Google Doc, but that wasn’t specific enough for me.  It needed to fit two things, it needed to show that it was going to be about testicular cancer, and it needed to show that it wasn’t going to be a woe is me-type blog.

That’s how I came up with a Ballsy Sense of Tumour.  It’s a nice play on words, it shows that it’s humorous, it’s about balls.  It’s awesome.  When I Was writing up some of the initial posts to make them more public.  I was like, I want to make this more than just: Here’s what happened to Justin, here’s how he supported.  I started looking up different facts and figures.  I found that just men systematically don’t talk about their health at all.  That’s why it then became very important to me to get the word out there.  If I can talk about my health, maybe that will inspire another guy to do a self-exam or talk about his health.

That’s what keeps me going, is knowing I could – sometimes, especially with different social media algorithms changing what they promote and so on and so forth, it gets frustrating.  Then I hear the research study I’ve been writing.  That’s been hugely inspiring just to see the conversations.  Literally, while I was at the gym today, I interviewed three different guys.  All three of them, I taught them how to do a self-exam.  I mean, I didn’t drop my pants in the middle of the gym to show them how to do that, they’d already asked me to stop doing that.  For all intents and purposes, a public place, teaching guys how to fondle their balls in a healthy environment.

Joe:                 I like the way you put it.

Justin:              Absolutely.

Joe:                 Yes, absolutely, Justin.  That’s great that you’ve been able to take all of that experience that happened to you and put it into something that’s really positive.  What sort of feedback have you had so far?

Justin:              Really, it’s been overwhelmingly position.  I always take screenshots when I get a cool text, or an email related to something, either somebody saying, “I read your blog and I forwarded it onto my brother and he did a self-exam and he discovered that there was a lump there.  Thank goodness I know you.” Or, I’ve really had very little pushback.  Even when I’m going up to people and saying, “Hey, I’m testicular cancer survivor, I want to ask you a couple of questions.” I’ve only had ten people out of the – I’m at about 400 responses – about ten people say straight up say no, that’s shown that with those ten people, we have work to do, but it shows with the other 300 odd people, they’re willing and open to it.  I’ve had overwhelmingly position responses from it.  I’m glad to see.  I could get punched in the face.  Be like, hey, I want to talk about your balls.  That could definitely not be taken well.  People totally take it well.

Joe:                 Yes, that’s fantastic.  I think it’s such a huge impact area, that all it takes really is one person, for example, found a better way of dealing with it or discovered that they had cancer and got it diagnosed early.  All it takes is one case to make it worth your time, right?

Justin:              Exactly, I figured, the statistic is like one in every two-hundred and fifty guys are going to develop testicular cancer at some point in their life.  I’ve talked, between my blog and social media and in-person, I’ve talked to thousands of people.  Divide that out, how many people have detected it earlier just because of me writing about balls incessantly.

Joe:                 Yes, absolutely, Justin.  I noticed one thing that comes up for me is fear of cancer coming back.  How do you deal with it and what do you recommend to someone who’s in the same boat?

Justin:              I deal with that very frequently.  It’s more notably when I’m on six-month scans and the couple of days leading up to the scan and a couple of days between the scan and the appointment is really rough.  Then, literally, once the doctor tells me, “You’re still in remission.” I’m like, okay cool, what’s the next step?  When’s my next scan?  The way I deal with it is, there are two things really, I schedule my scan and my appointment as close as humanly possible, so I don’t have to wait a long time.  They wanted me to wait a month and I was like, no, I’m not doing that.  You either reschedule me or you have that doctor call me and tell me, either remission or not.  That could be a less fun board game that you could play.

Joe:                 I like that.

Justin:              It’s trademarked now.  What I also do is I write, because if I know the last scan I had about, or I wrote one post about a scanxiety and how big that gets around the scan.  Rather than just thinking about it and spiralling myself, I write it down.  By writing it down, that’s the advice I’d give to you, or to other people in the same boat.  Recognize that you are going to be anxious.  Fear of cancer coming back is something that’s normal, every cancer survivor is going to experience to varying degrees and varying frequencies.  Recognise it, get it out, and try to move on.  Whether it’s getting out, verbally speaking it, writing it down, drawing a picture, whatever it is to get it out.  Don’t try to bury it, just recognise, face it head on, be like hey, the cancer came back.  It’s not going to happen, or if it does, I already beat it once, the second time is the charm or the third time, or however many occurrences.  Just deal with it in a position mindset as much as possible.

Joe:                 Absolutely, Justin.  I know that for me, cancer gave me a completely different outlook on life, my goals and the things that I do every single day.  Did you go through a similar experience?

Justin:              Absolutely.  My day-to-day, I would teach at school from eight to four, or stay an hour and grade papers and stuff and come home and work on lesson plans or whatever.  Go to sleep, start the whole process again.  I had no work/life balance whatsoever.  Now, I teach until four and I’m at the gym at 4:05.  It totally made me take better care of my health because I had let myself go, I was 215 after chemo.  Which for someone who’s six feet tall isn’t super heavy, but that’s still a little heavier than you should be.  My long-term goals are about men’s health now.

While I’m still very passionate about education, but there are literally hundreds of thousands, if not millions of educational influencers and bloggers and social media fault leaders or whatever out there, but how many testicular cancer people and activists are there out there?  I feel like my voice and my time can be better given to that.  That’s my long-term goal, is living in a world where every man can talk about balls in a job interview.  Probably not actually the best thing to do but give it a whirl.  Find a job you don’t really want and go for it.

Joe:                 Yes, that’s great, Justin.  If you have a friend who got diagnosed with cancer, what would you tell him or her?

Justin:              I would say make it about more than yourself.  Use your experience to educate others.  It’s 2018, we don’t need to keep it in.  Cancer survival rates are going up, but you can use your story to inspire other people to promote early detection and more awareness.  That’s really how we’re going to end up beating cancer.  Whether or not we’ll completely eradicate it with a catch-all cure, I’m not sure, I’m not a doctor, but I think we can definitely work on early detection for the time being.

Joe:                 Yes, that’s fantastic, Justin, I couldn’t agree with you more.  You have to make it about something that’s bigger than yourself.  I think that’s definitely what helped me.  Definitely something that sounds like what helped you, as well.

Justin:              Absolutely.

Joe:                 Thanks for your time, Justin.  I really appreciate it.

Justin:              Alright.  Thanks for having me.

One of the worst side-effects of cancer is that it takes away control and it changes the way you see yourself and the world around you.  It’s easy to lose sight of who you really are, and you need to find your way back.  That’s what I love about Sophie’s book “The Cancer Whisperer” – it’s all the ways that you can take your power back without being a hero. Sophie shares some fantastic advice and insight that can really help you:

Sophie Sabbage Website

Book Review: The Cancer Whisperer

More To Life

Episode 005: Become Your Own Case Manager

Joe:                 Sophie, there’s a metaphor in your book where you refer to cancer as this place on the map where the map runs out.  That’s exactly how it feels, like this is the unchartered land.  Sophie, what is the first thing you should do to re-orientate yourself in this new world?

Sophie:            I think it’s a place on the map where the map runs out.  I think it runs out for other people in other ways.  We find ourselves in these situations that we have no guidance for, no plan for.  A cancer diagnosis is blindsiding.  It blindsided me.  It really blindsided me.  I didn’t really have many symptoms.  I think the very first thing we need to do is deal with our fear, because we’re in shock and fear and often in denial at the beginning.

That can take over and start to run the show.  I remember when I was diagnosed, I was given lots of leaflets in the British NHS about what to expect from chemotherapy and what to expect from radiotherapy and how to apply for disabled parking, but no one handed me a leaflet with how to deal with my terror, and my grief, and my rage.  No one even asked me the question.  No one in Britain, in our lovely oncology wards, our stiff upper lips, was even talking to each other about how scared.  No one was reaching out to say, “Are you as freaked out as me?” For me, I needed to really confront, challenge, work through my fear before I could do anything that felt remotely powerful in response to my disease.

That’s really why I wrote the book, the help people do that.  I have a background in psychology and I have a toolkit for dealing with fear and rage and all of those things.  I found it tough.  I thought if I found it tough, I wonder who else is finding this tough.  Here I am, that’s what I spend a lot of my time doing now, is helping cancer patients work through their fear.

Joe:                 Yes, that’s fantastic, Sophie.  What is the first thing you would suggest to do about fear?  What is the first step in the process?

Sophie:            I think the first step is to name it, and not go all positive.  I meet many cancer patients who instantly get into: I have to be positive and I’m going to be okay, and it’s all going to be fine and I’m going to fight this thing.  I’m going to do the battle.  I don’t think that thinking helps us at all, I think we need to take some breath into our precious bodies and say: I’m scared.  I’m just scared.  Most fear, interestingly, is caused by what’s going on in our heads.  A cancer diagnosis is frightening enough, because clearly it’s a frightening thing to happen.  Then we start telling ourselves things like: I’m a goner.

Or, it’s over for me, I’ve wasted my life.  It’s unfair, I’m failing my family, it’s my fault.  It’s the world’s fault.  I’m powerless, it’s hopeless.  I have to do what the doctor’s say.  We just get into this, I call it: Mind talk.  Where we start predicting the future and imaging what’s going to happen and telling us how terrible it’s going to be to have chemo.  We get into this mental spiral of fear, which adds pain to pain and suffering to suffering.  We need to learn how to deal what’s going on in our heads when we get a diagnosis.  The doctor will say: You have cancer.  That’s what I call: A life shock.

You have cancer.  Then we give that moment meaning.  Cancer is loaded with more terrifying meanings than most words in the English language.  We need to learn to deal with what’s going through our heads, what we’re telling ourselves, what we’re predicting is going to happen.  We need tools to do that.  It’s not simple to describe that in a couple of minutes, but there are tools you can learn for how to deal with your fear.  A lot of what we tell ourselves is simply not true.  In fact, most of what we tell ourselves is not true.

Joe:                 Wow, that is so true, Sophie.  I think you really captured the fact that cancer really changes your identity.  I know that you also mentioned that in your book, that in one point in time, that your doctor said to you, “Do not become a patient.” That advice, what did that mean to you?

Sophie:            That was one of the most empowering things.  It makes me cry just remembering it.  Most empowering things anyone has ever said to me, at the darkest hour of my life.  What it meant to me was: Stay a person.  Live your life.  Don’t give your power to this disease.  It was quite an extraordinary thing for a doctor to say to someone.  Don’t become a patient.  In a way, it’s what propelled me to become a patient activist, because it’s so easy to lose your personhood when you become a cancer patient.

Suddenly, you’re a patient and everyone treats you like a patient.  You want to scream: No, I’m still Sophie.  I’m still me, treat me as me.  I still have a life.  It was a very empowering thing to say to me.  I didn’t realise it at the time, but by the time I was there in the hospital system, because this was just the diagnosis moment, by the time I was in getting more and more scans, it just stayed with me all the time: Don’t be a patient.  Stay yourself.  Stay in charge.  It was an amazing thing for a doctor to say.  I will be forever grateful to him.

Joe:                 Yes, that’s very powerful advice.  The system really doesn’t make it easy for us.  That’s why I guess I love your story about how you really put your foot down when you had the call about the radiation appointment.  Well, could you talk about that?  How was this moment meaningful to you?

Sophie:            Well, that man was in my head a bit when I did that.  It’s funny, this was quite a controversial thing to do.  I didn’t know it was a controversial thing to do.  I want to be clear that most of the time, I accept my appointments and I know how difficult it is for these hospitals to plan these things.  In that moment, I was coughing blood, I could hardly breathe, I have multiple brain tumours.  I have tumours in my spine.  I was in deep water.  They were pressuring me, you’re got to do this now.

I remember, it’s again, what I call a life shock moment, the nurse handing me my appointment on a piece of paper and saying: Here’s your appointment.  I looked at it and I knew inside me that if I fitted my life into my treatments, instead of my treatments into my life, I would be on a very fast downhill spiral psychologically.  It was a psychological thing.  The truth was, I wasn’t free that day.  I wasn’t just being difficult.  I wasn’t free that day.  I just said, “I’m not free that day.  Can I have another date?” She was like, what?  I didn’t know it was such an unusual thing.  It just seemed like, I’m not free that day, can you find me another date?  I think that was the moment that I took my power back from the disease and from the whole system.

It was a turning point for me to say, “No, I’m going to run my life.  I’m still in charge of my life.  Even if I die, I’m going to stay in charge.” Since then, my oncologist and I have created an amazing partnership and I’m pretty much asked: When are you free, Mrs.  Savage.  Yes, I think that was the moment I took my power back.

Joe:                 Yes, that’s very powerful, Sophie, because there are all of these expectations on us placed by the system, that you’re simply supposed to just put up with.  I remember, myself, that when I had the call from the oncologist saying, “We need to change your appointment.” There was no consideration.  I said to them, look, I’ve just come out of gruelling chemotherapy treatment, I’m going to get my results today.  I’m taking time off work, my wife is taking time off work, my mom is coming along.  I can’t just change it just because circumstances have changed.  I wasn’t being difficult, but it just struck me as there was this no please, no here was what happened, just you have to do this.  That just didn’t sit well with me at all.

Sophie:            It doesn’t.  I think part of this is it’s an incredibly over-stretched system.  With over-stretched staff.  Thank god they’re there to help us.  It’s not necessary.  It’s the attitude that goes with it, Joe.  There’s an assumption.  As you say, a lack of: Can you do this?  Can you make this work?  There’s the lack of enquiry and the lack of connection.  Sometimes a lack of humanity.  That is what I think some patients, in a way, they buckle in the face of it.  It can be even more dispiriting than the original diagnosis because suddenly someone else is taking over my life and telling me what to do.  You can feel like a child again in those circumstances.  It takes a bit of backbone to say, “Actually, that’s not okay.”

Joe:                 Yes, absolutely, because you lose so much control anyway that you have to make a conscious decision, just like you said, about taking it back.  The system is really not built for the patient.  That’s why you feel powerful.  I remember when I was diagnosed, you just feel like this rabbit in the headlights.

Sophie:            You do, you really do.  There’s not much to pick you up with that side of it.  It’s not a doctor’s job to help you through your fear.  They’re not trained to do that, but I do think it’s their job to be aware that you’re scared, that you have emotional needs as well as psychological needs.  To be sensitive to that and to point you in the right direction for support.  I don’t think that’s a complicated thing to do.

Joe:                 Yes, that’s exactly right.  You bring up a really interesting point, Sophie, because I remember that at no point did it occur to me going through treatment, or actually to any of the specialists, that maybe I’m struggling psychologically with it, and maybe I need some external help.  There was nothing in the system that said, “How are you doing?  Are you actually coping?”

Sophie:            There are two charities, Penny Bron and Maggie’s, who give patients psychological and emotional support.t Maggie’s cancer centre is situated on hospital grounds.  I wish there was one on every hospital ground in the land, I really do.  I gave a talk at Maggie’s cancer centre, I think it was the one in Oxford, and it had been open for two or three years.  It was on the hospital ground.  No oncologist had ever walked through the doors to say, “What do you do here?” Had ever walked in to say, “What do you do here” and to find out what they offer.  That was hard for me to fathom.

Joe:                 That’s just so disconnected.

Sophie:            It’s so disconnected.  It’s on the doorstep.  I think they send their patients to Maggie’s because they know to say, “What are you doing?  What are you giving my patients?” I found that fascinating.  That’s how disconnected it can be.

Joe:                 Wow.  Sophie, we touched on fear but there are so many conflicting emotions that we must untangle when you get cancer.  What advice do you have on that front?  Where do you start?

Sophie:            Wow.  I think this is the main reason why I wrote the Cancer Whisperer, Joe, is because it’s such an important thing.  There are a lot of books on the market.  Cancer books are an industry now.  I read a lot of them, but I couldn’t find one that really helped people navigate the emotional psychological part.  It is very conflicting because I remember in my case, there was fear, obviously.  They didn’t think I’d make it six months.  That was a very terrifying thing for a mother of a four-year-old.  There’s also anger and regret.  I was riddled with regret about all the things I hadn’t don’t in my life that I wished I’d done.

All the things I had done that I wished I hadn’t done.  I was stunned by the decks of regret that I have faced.  With it, grief, just enormous grief.  I can say more about that, but you have denial, you have fear, you have anger, you have regret, you have grief.  It’s like a cauldron inside you.  I hope my book provides some tools to help people with that, and a book is a book, there’s a limit.  I think it’s really important to reach out to centres like Maggie’s and Penny Bron, or even counsellors to sit down and say, “I’m scared.  I’m angry.  I’m grief-stricken” and get help with it.  It’s more than I can unravel in a short interview, but it’s doable.

You don’t need years of therapy.  There are really practical tools.  I highly recommend, actually internationally, the more to life program, which is moretolife.org.  It’s an educational charity where I learnt everything I’ve really learnt about how to deal with this stuff.  You need to be fairly physically well to do their courses.  If you can’t do that, then there are places like Maggie’s and Penny Bron.  You need to reach out and face into it and many people numb out and try to be positive on top of it, but it comes back to bite you in the arse later.

Joe:                 Yes, absolutely, Sophie.  Also, like you said, your daughter was four when you were diagnosed.  That’s a really tough thing to do, to explain it all.  How did you go about doing that?

Sophie:            It was a really tricky – well, we were very clear about doing it, because my husband lost his father when he was six years old, and nobody told he what was going on.  Nobody told him how ill his father was, and suddenly, he was in hospital and then he was gone.  He wasn’t taken to the funeral, he didn’t get to say goodbye.  It was another era.  It had really a very long-lasting effect on him, to not know through his childhood what really happened.  We were very clear that we were going to tell her.

Also, there was a good chance that I would die before she was five years old.  How do you tell a four-year-old?  We told her I had cancer.  We told her I might die, that she might not have a mummy anymore.  we kept it as simple as we could.  I wanted her to not be blindsided.  I wanted her to be as ready as she could be at that age.  We needed to talk about what does death mean?  That mummy wouldn’t be here anymore.  That I’d be in the clouds and in the trees and I’d always look over her.  It was heart-wrenching, Joe.

It was heart-wrenching.  I remember her, when she was a bit older, just raging at god, and saying, “I want my mummy here.  Please don’t take her to heaven.  Please leave her here.” It’s been tough on her, but we’ve included her.  We don’t over-dramatize.  I’m very well right now, there’s nothing to fuss about.  I had multiple tumours three times, I nearly died, I would say, last year.  We didn’t think I’d make Christmas.  We keep needing to revisit it.  She’s older now.  It’s harder now in a way than when she was four because she lost her grandfather two months ago, she knows what death is now.  In a way, it’s harder as she gets older.  We’ve included her, and I think that has made it much easier for her.  The thing about kids is, they pick up everything.

If you don’t tell them what’s going on, they make it up in their own heads.  There’s a lot of research that shows that they think they’ve done something wrong.  They’re picking things up and they think, “I’ve done something wrong.  Something’s my fault.” They turn it on themselves.  That’s why I think it’s really important to be truthful with our children, however devastating the truth is.

Joe:                 Yes, Sophie, I can so relate to that because my son, who was around three when I was diagnosed, I really felt that when we made Michael a part of it all, when he had his own toys with me at the hospital, when we made a doctor’s kit for him.

Sophie:            Brilliant.  I love that.

Joe:                 He had his own lanyard with a picture.

Sophie:            Brilliant.

Joe:                 We did all of that.  Then we had this third birthday here in the oncology ward.  We had three oncology nurses sing happy birthday.  That was a moment when it all became normal.  It all became a part of life.  I think he stopped freaking out because he realised that all of a sudden, he’s included in all of this.  We didn’t really know how to handle it, but now he’s included, it kind of made it all normal.

Sophie:            That is such a beautiful example of it.  Honestly, it brings tears to my eyes.  It becomes normal.  It becomes normal when you do it that way.  It’s just part of their day.  Mommy’s gone for a treatment, mommy’s in hospital, so what?  It’s like a known thing after a while.  Gabriella has grown up with it for four years now, nearly four years.  It’s just part of her world.

Joe:                 Absolutely, Sophie.  Yes, you have the compass, your fantastic system for dealing with cancer.  Can you talk about what that is?  How did you come up with it?  How does it work?

Sophie:            In my book, there’s a chapter on each step of the compass.  It includes things like, pointing north is coming to terms.  That’s about coming to terms with what you’re dealing with, facing into it, getting through the fear and the denial.  There’s a chapter about understanding your disease and becoming an expert in your own disease.  I think that’s one of the reasons I’m still here, is I’m an expert in my own disease now.  I know it as well as my doctors know it, sometimes I know it better.  I’ve had moments with doctors when I’ve known what to do and they haven’t known what to do.  There’s something about stabilizing your body.  There’s a chapter about grief.  There’s a chapter about clearing all the mind talk in your head.

I wanted to just create, because it’s the place on the map where the map runs out, so I wanted to create a compass for people at the point on the map where the map runs out.  Where do I go?  How do I go?  A compass that guides them to attend to their mind, heart, and spirit, as well as their body.  We focus on the body, the body, the body, the body, but where is the guidance?  We’re integrated beings.  Our disease is all connected, physical disease is connected to emotional dis-ease.  Disease.  Disease means dis-ease.  We need to get that.  Disease means dis-ease.

We need to be attending to – in order to live, we may not even make it, Joe.  I may not make it.  I may not make it.  I’ve made it longer than anyone.  I can go to my death bed knowing that I have healed parts of my being that needed healing.  I have moved into what I call my purpose in life.  I have more connection, more authentic friendships, a clearer sense of purpose, even of destiny, than I ever had before cancer.  That doesn’t mean I will beat cancer, which is a phrase I hate.  It doesn’t mean I’m going to overcome this thing or make it.  I don’t know how long I’m going to have.

Let us have all that we can have while we can have it.  Let us live as fully as we can live.  Cancer is a massive wake-up call to say, will you claim your life?  Will you claim your life?  What is it you want to life that you haven’t lived?  Who is it you want to be that you haven’t let yourself be?  That is the gift.  That is the gift of cancer.  That is why I’m profoundly grateful that I’ve had this experience.  I would give it back tomorrow in order to raise my child into adulthood, but in some ways, it’s been the making of me as a human being.

I’m making a bigger difference than I have before.  I’ve done this work for a long time.  One of the chapters in my book is called: Knowing your purpose.  The compass is a guide to not just attending to your body and your fear, but to engage with your life in a new way.

Joe:                 That is very profound, Sophie.  I guess that’s the theme for me, reading through your book, that of transformation, that of transforming and feeling the gratitude and bitterness and hope and darken to light.  Does this reflect how you feel about cancer?  This whole transformation theme?

Sophie:            I think it’s been very transformational.  Those shifts have certainly occurred.  Fear into gratitude and bitterness into hope, that has certainly occurred.  Massively.  It’s not that simplistic, because I move between fear and gratitude regularly.  I didn’t move from fear to gratitude and now I’m in gratitude every day.  No, I’m a human being, I haven’t transcended fear, I have confronted it and I continue to do so whenever it raises its ugly lying head.  I confront it again and again and again and again and again and I move myself back to gratitude.  It’s an ongoing practice.

I don’t think we move from one to the other and that’s it.  I think it takes work and commitment.  I lose my hope and I have very dark days.  I have days of despair and days of hopelessness, and when I don’t know how I’m going to take the next step.  I know what to do with those things and I know how to move myself out of that state and then back into gratitude.  I’m not really keen on the dark to the light thing story, because it’s like the bad to the good, because it’s too this or that.  You know, dark or light.  I have dark days, I have light days.  On this journey, I have found light inside the darkness.

Not beyond the darkness.  Like, dark and then light.  There’s light right inside the darkness.  It’s the most dazzling light of all because it surprises you.  On my darkest days, I have found wonder and awe and grace that I could not have predicted or imagined.  I’m not afraid of the dark anymore, because I know there’s light in the darkness.  There literally is, if you go out on a dark night and your eyes adjust, you’ll see the light inside the black.  That’s what I hope people living with this can find a way to find.  I’m not a false-positive person.  I don’t like positivity.  I think it’s like putting icing on dog-shit and calling it a cake.  I’m about authenticity.  That means if my time is up, facing that my time is up, and saying, yes to death, as well as saying yes to life.

Finding the grace and the beauty in dying as well as living.  That’s what I’m really passionate about.  I think I’ve helped some cancer patients die peacefully.  I’m probably prouder of that than of anything I’ve contributed to them staying alive.  Yes, there’s light in the darkness, Joe.  There’s also, we can rest in peace before we die.

Joe:                 That’s very powerful, Sophie.  You have a very distinct take on grief.  Could you talk about that?

Sophie:            Yes.  I used to think grief was something you needed to get through when there was a devasting loss in your life and something that brought closure.  I bought into all of those – what I think now – are myths about grief.  Grief is often thrown in with fear and anger.  There are different types of emotions, Joe, there are separating emotions that separate us from who we are and our connection with others and our connection with life itself, fear, anger, resentment, envy, jealously, bitterness.  Then there are feelings that connect us with ourselves, others, and with life, like love, joy, excitement, happiness.

They’re very connecting emotions.  Well, so is grief.  Grief opens the heart.  It doesn’t close the heart, like fear does, it opens the heart.  It’s an incredibly healing force.  It hit me much harder than my fear, I was overwhelmed with grief when I was diagnosed.  It’s become my friend.  I have waves of it every so often.  I don’t get through grief.  I’ve taken it by the hand.  It walks with me every day.  It reminds me of everything that’s precious to me and everything I love.  It keeps me connected to life.  I think it’s the other face of love.

I think it’s another name for love, even, because we grieve that of which we love.  I’ve become a very big fan of grief and I actually would like to do more work to help redefine our understanding of grief in this culture.  That it’s not a heavy burdensome.  Of course, there’s all of that, but I think it’s one of the most healing forces we can embrace in life.

Joe:                 Yes, that’s really powerful, Sophie, because, yes, for me, I think I’ve been stuck in the old paradigm of where grief is something you need to get over, like a speed hump, you know?  That’s not really how it works.

Sophie:            Yes, exactly.  It’s not how it works.  My father died two months ago, of lung cancer, as it happens, we were a right pair.  I have waves of grief.  It’s still very fresh for me and raw.  I had the privilege to be there when he died and to help him find a little peace before he left.  He so didn’t want to leave.  I don’t want my grief about my dad to – I don’t want to get over it.  I want to hold it in my heart for as long as I walk this earth, because I hold him in my heart with it.  It keeps me connected with him.  It doesn’t have to be heavy every day.  I’ve had grief that’s brought me to my knees.

I don’t want to get over it.  I’m happy and content to have it live in my heart and him with it, because it keeps me connected to my dad and my loss of my dad, and my desire to remember him and honour him and speak to him at night with my daughter, which she likes to do.  Can we talk to Papa?  She says.  Grief helps us to do that.  Yes, it’s a companion I welcome.

Joe:                 Yes, I’m sorry to hear about your dad, Sophie.  I feel like you say, the connection is still there.

Sophie:            He had what we call: A good innings.  She had a good innings.

Joe:                 Sophie, in your book, you talk about the importance of dealing with moments when life shocks you with an event that you weren’t expecting.  Why is that important and how does it work?

Sophie:            Okay, this is an important question because we often, in psychology and in the mind/body/spirit world, we talk about life challenges and life events and trigger events.  Those things are important.  Cancer is a life challenge, or a life event, but hearing the words, “You have 27 brain tumours.” Is a life shock.  It’s a very specific moment in time.  I’ve been teaching about life shocks for 37 years.  I was taught about them from some genius of the 20th century called: Brad Brown.  That’s another story.

When you focus on these moments in time.  When you engage with these very precise specific moments that hit you the hardest, they’re the ones that hit you the hardest: Mrs.  Savage, you have 27 brain tumours.  For example.  You connect with that moment in time.  First, when you go back to that moment, all the feelings and all the thoughts are stored, like a file, in the memory of that moment.  Just by reexperiencing a life shock, you open up the psyche, you open up the feelings.  You open up all the beliefs that’s running.  You can bring it into the clear light of day and deal with it.  It’s an amazing thing to engage with those moments.

It’s also, god, I could talk for an hour on this, I’ll try to bottom-line it.  Have you ever wondered if life is trying to tell you something?  Have you ever noticed patterns?  Why is this happening again?  Why am I in this kind of relationship again?  What’s going on?  Life is trying to tell you something.  It really is trying to tell you something.  It’s saying, wake up, you are not what you fear you are, you are not what you think, you are not what you believe.  Life is not what you think, what you believe, wake up.  Wake up.

It’s knocking on the door, every single day, trying to get our attention.  Hello?  Hello?  A life shock is a collision point between how I perceive the world and how the world really is.  We have dozens a day.  It’s every unexpected, unwanted moment that happens.  Every one of them is an opportunity for awakening a transformation.  That is the subject of my next book, actually, because it’s such a big subject, I’ve written a book about it.

Joe:                 Fantastic, let’s talk about your next book.  Tell us more about that.

Sophie:            Well, it’s called: Life Shocks and How to Love Them.  It’s out in June the 14th.  I would say it’s the philosophy behind the Cancer Whisperer.  When I became a cancer whisperer, the way I met that disease was because I had spent 20 years of my life learning and teaching people how to engage with life shocks and how to meet them as opportunities for profound transformation.  This book is really what’s behind the Cancer Whisperer.  It does continue my cancer story.  My cancer story continues within the book and all that I’m continuing to learn from my cancer life shocks, because cancer gives me many life shocks.

It’s about more than that.  It’s not just about illness, it’s about life, and how to be fully alive.  There are chapters about things like beauty, success, power, and life shocks in these arenas and how we can learn from them, how we can engage with them.  There are some very practical tools in it for how to do that.

Joe:                 That’s fantastic, Sophie.  I really look forward to it.  If someone wanted to learn more about you, and about your books, what would they do?

Sophie:            Firstly, go to Sophiesavage.com.  I’m also on Facebook.  I have a group called: The Cancer Whisperers.  I’m Sophie Savage, the cancer whisperer.  I have a page.  Most of it, you can find on Sophiesavage.com.  They can also go to: Moretolife.org, which is the program in which I teach about life shocks.  There are courses about the kind of work that I do, if anyone really wants to do some much deeper and sustainably life-changing work.  I highly recommend that.  I’m a trainer in that program.  It’s an educational charity.  Sophiesavage.com is really the place to start.

Joe:                 Cool.  Fantastic.  Thank you so much, Sophie.  It has been incredibly profound.

Sophie:            Thank you.  My pleasure.  Thank you so much.

One of the main challenges that you’re confronted with when you get cancer is that you are completely unprepared.  You’re thrust into this alternate universe, where you’re confronted with new rules, and new terminology and new specialists, new perspectives and all of a sudden, you have to make decisions and you have to talk to new people and you really don’t understand their world and where they’re coming from.

Today, you’re going to hear from Joseph, a top urologist who works with cancer and Joseph is involved in an incredible amount of work, from seeing patients and performing procedures, to doing research and training the next generation of experts. Today, he’s going to give you an insider’s view into the world of urology:

Dr Joseph Ischia Doctor Profile

Talking Urology

Episode 009: Why The Oncologist Is Your Guide Through Cancer

Joe:                  Joseph, tell me what is it like being a urologist and what does your typical day look like?

Joseph:            Being a urologist is a lot of fun.  There are a lot of different specialities and we get to choose our specialty along our training, but being a urologist is fantastic because we deal with great patients and I think very interesting conditions that urologist patients have.  My average day would look like usually getting up quite early, often well need to see patients that we’ve got sitting around in various hospitals, if we’ve operated in different hospitals, then we’ve got to get to wherever we’ve got to be to at eight or eight-thirty AM, which will be an operating list or seeing a list of seeing patients.

Those are the two main things that we do, is review patients, to chat about what their management will be or their next treatment or try to sort out their problems, then we’ll have operating lists and they will go for half-days.  We tend to have half-day operating, half-day consulting, we call it.  You can do that in either public or private hospitals.  Most urologists and certainly most specialists tend to have a mix of both public and private.

Joe:                 Tell me, Joseph, why did you become a urologist and has that perspective changed over the years?

Joseph:            I don’t think anybody grows up wanting to be a urologist.  It’s a bit of an unusual speciality to choose, thinking of checking men’s prostates and looking inside bladders, it doesn’t strike you as something that a teenage boy aspires to be.  I think this is a really important point about medical specialists.  I think there are doctors that choose their specialty, but I think far more often the specialty chooses the doctor.  Different specialties have different personality types.  I always want to be an orthopaedic surgeon, so I thought this is what I’ll do, I have a sporting background, replacing knees and hips and it will all be a lot of fun.  Then I realised, I didn’t really love orthopaedics, I didn’t love looking at bone fractures and deciding if people needed hip replacements.

One of my rotations when I was a junior doctor was to do urology and I was really stuck with it.  I thought, this is a shame.  I did it and I absolutely loved it.  There were two reasons for it.  One is that I really get on well with urologists.  The people that were my bosses at the time, I clicked with their personalities and I think some specialities are very high-strung, other specialties are very laid back.  Urology is quite good, it’s sort of in the middle.  The urologist I worked with, they had a lot of outside interest, it wasn’t just about always having to look after people or thinking about that 100 percent.  If you’ve got that great perspective, you can then bring that into your patients.

When you see them, you can be more relaxed, and I like to think that we’re relatively friendly when we chat to patients most of the time.  The second issue, so, one, I liked the specialty and I liked the doctors, but the second thing is, you find that you have a knack for something.  I had a real knack for urology.  When I was an intern, my very first year, once I had finished medical school, one of the things interns have to do is put catheters in patients.  Some people can just not put a catheter in a patient to save themselves.  I had developed this reputation of being very lucky, and I still think it was luck.  I could put catheters in patients, and there is a bit of skill to it.

There are just things that you pick up really easily or there are things that you don’t.  I always picked it up.  I had a knack for it.  I liked the doctors, but another important thing is, I liked the patients.  I really liked treating men with prostate cancer.  That was what really brought me in.  We had this prostate cancer clinic in the hospital that I worked at, and these are guys, the patients this is, that are in their 60s or 70s, they’ve had good lives, they’ve got a cancer that’s not usually rapidly progressing, and they live with it a long time and they’ve very philosophical about it.

You can imagine, that’s very different to other specialties.  Say, if you’re a breast cancer surgeon, you’re dealing with usually women, quite often in their 40s, with young families.  It’s incredibly stressful.  As a patient and as a doctor.  Looking after these people, you take that stuff home.  Having men that come in and they sort of know each other in the clinic and they’re all relatively happy, that’s different.  The worst thing that I ever would do would be paediatrics.  The thought of kids being unwell just didn’t appeal to me at all.  My speciality chose me in the end.

Joe:                 Wow.  That’s fantastic insight, Joseph.  You would have definitely hated me as a patient.  I just felt like there was a lot happening with cancer, right?

Joseph:            It’s madness and that’s how it can feel.  I’d like to say that it’s very controlled behind the scenes.  For your perspective, you as a patient, you’re given a lot of information very quickly because a lot of the time with these cancers, decisions need to be made relatively quickly.  We can’t spend three months backwards and forwards until you know every little bit about, for example, let’s choose a cancer such as testicular cancer or bladder cancer, we know from the literature that’s out there, that if you wait more than three months from when you are first diagnosed with bladder cancer to having your ultimate treatment, which may be septectomy or radiation treatment or just having that tumour removed, if you wait more than three months, we know that you don’t do as well as people who get treated in less than three months.  We are racing against the clock.

Now, we’re not proud of the fact that you would walk away not understanding what we’ve been talking about.  That’s absolutely never what we’re trying to achieve.  We are trying to get you to know as much as possible.  We understand, and it’s been shown that as soon as you sit down with someone, urology has lots of areas around it, but we’re talking cancer today, if you say, “You’ve got cancer of the bladder, this is what we’re going to do.” Studies have been done on the psychology that people do not remember the first thing or the next thing you say after they’ve had cancer.  You can have a one-hour conversation with them, where you have this wonderful to and fro and they will walk out.  They’ve done studies where, right, what did you talk about today?  The patient will go, “I’ve got cancer.” “Did he mention the treatment options?” “He did, but I can’t remember them.” Urology has a very good female representation.  We need to give you information that you can digest, and we need to do it in a relatively quick time.

Which is why these support groups being very important.  We’re a big fan of them.  I think it’s very hard for a testicular cancer, because it’s a relatively rare cancer, but for prostate cancer, for example, there are lots of prostate cancer support groups around now, they’re fantastic because people can spend a lot of time talking about it with other people who are about to go through, have gone through, exactly the same thing.  That’s very useful because that reinforces to them what the doctors said, “I remember my doctor mentioned that, is that what he was talking about?” We get a lot of that from the prostate cancer support group.  I think we don’t intend to confuse you, we do try to give you all the information.

There’s a lot of written material around that we will give you, but a lot of that can be very difficult to understand.  Even now, we know that understanding – when you do medicine, just going a bit on the side, the average person uses about 5,000 words in their general spoken language every day.  That’s just the common 5,000 words.  When you learn them, you can learn nearly any language.  By the time you’ve finished medical school, you’ve learned another 5,000 very basic words.  Essentially, we’ve doubled our vocabulary that we use when talking to each other.

That can be very hard for us to pull back when we’re trying to get across to patients, who are clearly not medically trained, you’re not supposed to be, you have your own specialities and interests, that the things that we need to say, because, in fact, this treatment will help you.  We don’t always do a good job of that.

Joe:                 You make such a great point, Joe, because I remember that I was in such a complete fog during this initial diagnosis and things happened so quickly.  Within a week, I had my left testicle taken out.  You make a fantastic point about leverage and the knowledge of the people who have gone down that road before, as well as talking to specialists such as yourself.  How do you break the news about cancer, having said all of that?

Joseph:            It’s an art, not a science.  Some doctors are better at it than others.  My personal approach is to be honest and empathic.  That’s really tough to do because there are some patients who want to be eased into it, they want to be taken out to dinner, metaphorically speaking, before you hit them with the diagnosis.  Others say, why did you spend the first five minutes wasting my time if you’re now going to tell me I’ve got cancer.  They don’t say that out loud but different people have different personalities.  It’s very hard for us, as doctors, to read what sort of personality type is the patient.  I find I have the least trouble by being absolutely honest and then getting their feedback on how they feel about it.

You’ll have, for example, say we’re talking about testicular cancer, that’s a good one because that’s where you’ve come from.  You would have noticed a lump, most likely, you would have had an ultrasound and your GP would have said, “That looks like cancer, you’ve got to go see a specialist.” That’s what it would have been.  We can see you, we’re not going to sit there, it may or may not be cancer.  99 percent of the time, a lump in the testicle is going to be cancer.  We will say, and I would start with: Right, as you’ve talked with your GP, you’re well aware that you most certainly have testicular cancer.  Then you’ve got to very quickly move onto what we’re going to do next.  This is cancer that affects the testicles, it can spread outside the testicle but the vast majority of the time, it doesn’t.

We’ve got plenty of great treatment options for you.  We’re going to start by… this is how I do it… we’re going to start by removing the testicle.  Then we’re going to check to see if it’s spread.  That’s when we do the CT scan that you would have had.  You’re always saying, and this is a great cancer for treatment, you try to give them the positives, and the vast majority of people will be cured with testicular cancer.  It’s a relatively easy conversation to have.  You’ve got other cancers such as bladder cancer, where you say, “I looked inside, you’re having bleeding, and I’ve looked inside your bladder” when they wake up, you’ve got to tell them.

I did, I noticed some cancer inside your bladder.  Now, what we need to do next is work out what sort of cancer it is and how far it’s eaten its way into the wall of the bladder.  You’ve got to give people hope, that’s what I like to do.  At the end of the day, there’s no point not telling people what’s going on.  I think it’s very important.  In fact, a lot of patients that we hear about, “My doctor didn’t tell me anything.” I think that’s extraordinarily rarely the case.  I genuinely don’t think – there are no doctors to ever hold anything back from their patients.  There’s certainly a lot that’s changed in the last 50 years with regards to medicine.  We’ve gone from patriarchal medicine, where people turned up, patients turned up and the doctors said, “You will have this done.  Don’t ask any questions.  This is what we’re going to do.” That’s not the case anymore.  It really is a journey together.

We will say to patients, “Alright, this is the problem, this is what we’re going to do together.  I’m going to operate and then you’re going to do this, and we’ll do that.” I think it’s very much a joint decision-making process, where the patients are involved in every step of the way.

Joe:                 Yes, that’s fantastic, Joseph, because I think that honesty and directness really builds trust between you and your patient.

Joseph:            It can do.  You say that, but some people find it very confronting and they’ll say, “That doctor has no bed-side manner.” There are some doctors that do it well, there are some doctors that do it poorly, but even the doctors that do it well are going to have patients that will be upset, because maybe there are different personality types.  You’re not always going to get on with your patients.  That’s very true.  That raises a whole issue of, if you don’t get on well with your doctor, find another doctor.  That goes for whether it’s your GP, whether it’s your specialist or whoever you’ll see, because sometimes you’re just not going to get on well with people.  That’s just a fact of life.  It does not mean they’re not doing a good job from a medical perspective for you, but you’re just not clicking.  I think that can happen.

Joe:                 Yes.  When that happens, let’s say you’re a patient and something is not working, either emotionally, or you’re not happy with the level of information that you’ve provided, how do you look for someone else?  How do you start that conversation?  Where do you go?  What do you do?

Joseph:            It’s a good point.  There are two reasons you should go see another doctor.  One, if you’re really not getting on well with your doctor, and that’s usually personality.  The doctors, I feel like I’m closing ranks, we are very well-trained, and we need to continue to maintain standards that are at least acceptable to our peers.  It’s a lot like airline pilots.  Some airline pilots are good, some are bad, but the planes hardly ever crash, right?  Even the bad ones are still doing a really good job.  That’s like your doctor, there’s a 50 percent chance that your doctor is below average.  That’s just statistics, right?  Even if he is or she is, they’re still doing a really good job.  If you don’t get one with a doctor, go find another one.  The best place to start is your GP.  The GP is the most important person is any part of your medical treatments or medical pathways and management that you’re currently going.  Go back to your GP and you just say, be honest, “I didn’t get on well with him, is there anyone else who you would recommend?” That’s one reason.

The second reason you should go see another doctor is for a second opinion.  You can get one incredibly well with your first doctor, but we’d always recommend that you consider getting a second opinion for something that is going to be a major decision, such as a major surgery, major treatment plan.  It’s always good to hear someone else’s take on it.  Doctors don’t always agree, and you want to know that you’re making the best decision for you at that time.  Once again, your initial doctor probably will be a little bit offended but shouldn’t be, because that’s medicine, I know, I’ve certainly had patients that have gone for other second opinions and you think, “Didn’t I do a good enough job?” In fact, if I were a patient, I would go get a second opinion.

That’s exactly what I would do because you want to make sure you’ve got the most and the best information.  After a second opinion, it’s probably a law of diminishing returns, then you would see other people who have gone to see five or six specialists.  In the end, they just end up being more confused.  You GP is the right person to do that again, or you can even ask the specialists you’re seeing.  You could say something like, “This is fantastic, I understand that getting a second opinion can be a really important part of my treatment, do you mind if I do that?” Any doctor worth their salt should say, “No problems.” “Is there anybody you would recommend?” You could get a GP recommendation, or a recommendation from your specialist.

Joe:                 You make a fantastic point, Joseph.  It’s such a stressful time, half the time, you don’t know what you’re really doing, what is the procedure going to be like, what are the side-effects from chemo or radiation or another treatment.  Do you think it’s a good idea to bring someone to the appointment with you, maybe a partner or a friend?

Joseph:            Absolutely, if you can.  Yes, would strongly recommend partners come along.  If you don’t have a partner, you can get a family member or a friend to come and join you, because of the problem that we had initially.  Which is after you say, “Sorry, Joe, you’ve got cancer.” The next 20 minutes is lost on you, really.  Whereas, the friend or the partner is very good at remembering that stuff because it’s not as personal to them.  Admittedly, if it was your spouse, they might freak out as well, but they’re usually a lot better at remembering stuff because the person that it’s affecting primarily, they really do shut down after that diagnosis.  We find the spouses are very good for that reason.  Absolutely.  You’ve got to remember, it’s up to the patient.

As a doctor, my only responsibility is to the patient.  Now, if the patient says, “I don’t want my family here.” That’s fine.  If the patient says, “I would like to bring in half the football team.” I can say, “That’s going to be pretty inconvenient.” I’m happy to give it a go.  The patient shouldn’t feel, “I’m being pressured by my family to bring them along.” My only responsibility is to the patient.  That’s very important.  The importance of the patient-doctor relationship is the only thing that really matters in this whole thing.  Quite often, that will involve the patient saying, “I want you to keep my family involved.  Then that’s what we’ll do, because it’s their request.

Joe:                 Yes, that is a great point, Joseph.  If someone has questions in between their appointments or after a procedure, is it okay to ask for a way to contact you, maybe an email address?

Joseph:            Yes, email address is probably the best because as specialists, we are usually very busy.  In fact, we are usually seeing people, to answer a phone call, we’re usually having to stop what we’re doing for one patient to answer a phone call.  If that’s an emergency, that’s fine, but we don’t tend to answer our phones while we’re chatting, we’ll catch up in between patients or when we’ve got a break.  An email is the best way because we can get back in touch with that at a time that suits us and get the information to you.  The problem with the email is that you don’t want to get caught up in a long to and fro, because emails are very tough to get across information.

They’re very impersonal and they can be misinterpreted.  It’s usually better.  If it’s just a, “Did you say I should start this antibiotic this afternoon?” Yes, that’s a good answer.   If it’s, “What were the side-effects of that treatment again?” That’s not a good email because that’s something you should have face-to-face, because I can say, “One side-effect is that you might become incontinent with this treatment.” You can’t just leave that hanging there.  That’s a big thing to have there.  This gives you a risk of getting cancer.  Well, how big is that risk?  If you’re doing it face-to-face, “That risk is very small.  In fact, the study that showed that risk is probably an artefact, not real.” You’ve got to be able to put things into context, you can’t do that, or you’d be writing ten-page emails every time to make sure you’ve got every nuance across.  Simple questions, yes, difficult ones, I’d make another appointment to come back and see them.

Joe:                 That’s a great point.  I think the knowledge that you can actually make another appointment to follow-up and clear up any questions that you might have, I think that’s really important.

Joseph:            Absolutely.  We strongly encourage that.  For example, we very rarely give you all the information in one sitting and then expect you to go off and have a big operation.  Mostly, we’d say, right, for example, let’s just go to prostate cancer.  Okay, you’ve got prostate cancer, it’s the sort of cancer that probably needs treatment because not every cancer needs treatment, but yours does.  Your treatment options are surgery or radiation.  Here is an information booklet.  I’ll tell you about surgery, about radiation, here’s an information booklet, I want you to come back in two weeks and see me.

Now, if you’re interested in radiation, I would recommend you go and see a radiation doctor.  If you have decided that you think surgery is the right thing for you, then we can do that, but you don’t say to them, “You’ve got prostate cancer, I’m going to book you in for next week.” You’ve got to give people time to take in all of that information and make a decision that’s right for them.  You’ve got to remember, the decision, there are competition reasons, or there are competing facts or motives when people come and see you.  For me, my reason might be, I want you to have this treatment because it has been proven to extend your life as long as possible.

Whereas, the patient will say, “That’s fine, but I don’t want to lose my sex life which might be part of that treatment that you’ve recommended.” You can actually sometimes have a bit of a disconnect because as a doctor, we do sometimes get caught up in survival and we can forget quality of life, which can be very important to patients.  That’s very important.  That’s why there’s not always a right answer.  Living is not all about just living as long as possible.

Joe:                 You make a great point there, Joseph.  You mentioned other specialists.  When you refer someone, a patient to another specialist, maybe it’s an oncologist, how do you choose that person?  Is it a part of building up your network over the years, how does it work?

Joseph:            It is.  I think that’s one of the advantages of working at a public hospital, it’s that you really have a very good network straight off the bat.  There are two advantages of that.  One is you get to know what they’re like.  You get to know, and you have people that you get on well with.  You know that they do a good job and look after patients well, you’ll refer them to that person.  The second issue is, you’ve got to find someone that’s convenient for the patient.  If the patient had driven 45 minutes to see you because of whatever reason, they got referred to me as a urologist, but they need some chemotherapy for example.  In fact, it would be far more convenient for them to have that closer to home.

What we’ll often get is, say, patients that come from outside Melbourne or for whatever reason they think that coming to the city is the right thing to do.  There are incredibly good urologists in the country, there’s usually no reason to do that, but somethings you need to come in for.  For this stage of your treatment, you’re probably better served closer to home.  We will then get in contact or from our network, we’ll know, “That guy out in the country, he’s a great medical oncologist.  He can give you the chemotherapy.” There are two factors.  People that you know are good at what they do, and they need to be local to the patient.

Joe:                 Yes, that’s a fantastic point.  What about the general practitioners, what is your relationship like?  Do you meet them?  Do you talk to them?  How would they, for example, recommend you?

Joseph:            It’s one of the great questions, but I can’t fully answer it.  GPs have specialists that they refer to and you would like to, as a urologist, I’d love to become the specialist that certain GPs would recommend.  I do have GPs that refer to me and it’s because I’ve got the dad or one of my school friends is a GP that refers, another one, a couple who were residents when I was a resident, they know you.  They all refer to.  Then you start getting some that you don’t know how they heard about you, but often a patient will say, “I saw this guy, he was really good.” Then the GP will say, “I’ll put him on my roster and next time I might just send him something.” That’s how you build up is how GPs refer to.

It’s a little bit of a black box, but I don’t think any specialist really knows how.  We go out and do sort of GP presentations, so they at least get to know you and go, “This guy is not an idiot” that’s what you want GPs to think of you, really.  As far as the role of the GP, there’s absolutely no doubt that, and this is for any person, that the GP is the most important person in their life regarding the medical treatments.  The GP is the quarterback, they coordinate everything that’s going on.  The patient that has a heart disease, prostate cancer, and needs a hip replacement, the GP says, “Right, I’m going to get you to see this orthopaedic surgeon, I’m going to get you to see this cardiologist, and this other surgeon.” They coordinate all of that for the patient.  If the GP is not on their game and good GPs are worth their weight in gold, then they will take very good care of their patients.  I’d always vote, if you don’t get on well, if you haven’t got a GP that you click well with, then you need to find another GP.  They are the most important person in the whole medical system, really.

Joe:                 That’s a fantastic point you’re making.  What about, we touched on second opinions before, do folks come to you for second opinions, if so, how do you deal with that?

Joseph:            Well, we strongly encourage second opinions, there are different specialists who have different attitudes to second opinions.  Some of them see it as this patient has come to see me, great, I’m going to take over their care.  That’s not unreasonable.  That’s how they want to run it.  I personally don’t do that.  I’m very much a, right, you’re treating specialist has said, “This is how I would treat it.” I write a letter including the first specialists and I say, often you’ll get to the end, “Yes, that’s what my first guy said.” I’ll say, great, go back and see them.  If you’ve got any more questions, I’m happy to see you again.  I don’t try to take over people’s care.

As urologists, we’re all very reasonable and I don’t have any misconceptions that I’m any better than any of the other guys that are out there and they all do a very good job.  I’m very happy.  We have areas of specialty.  There are certain things that I can do that other guys don’t specialise in.  I did my fellowship in advanced prostate and bladder cancers.  I can do certain bladder cancer operations where it’s called neo-bladder, that other people don’t necessarily do.  Apart from that, we’re all very well-skilled, usually.  There are different types of urologists, as well.

There’s oncology urologists, there are functionals, people that have trouble with their bladders.  There’s reconstructive urologists.  They do people who need repair of their urethras or spinal chord patients, these sorts of things.  They can look after that as well.  Then there’s fertility urologists.  We fall into broad groups that we have our areas of interest, as well.  To get back to your question, the second opinion, very happy to do them, but I’m not looking to take over anybody’s care.  If they get to you and they go, “I want to continue seeing you.” That’s fine.  That’s certainly not my intention.

Joe:                 Cool.  There are obviously a lot of things changing in urology or any sub-field of urology, so how do you keep up with the latest research and how do you actually incorporate it into your daily practice?

Joseph:            There are a few ways we keep up to date.  One, we are expected to keep reading the literature.  We will read the latest journal articles.  I’ve got things that I’ve flagged, that if an article comes out in a particular topic, say prostate cancer or testicular cancer, I’ll get an email list once a week saying: These are the latest articles in your area of interest.  I’ll usually click on those.  Then that’s a great advantage of wanting to be a part of a public urology unit, is that they’ll be a group of urologists and you’ll bring your interesting cases to the meeting and say, “Has anybody got any advice?”

Someone will say, “I did that, and I had one of these a couple of years ago.  I found this useful, or look up this paper, that will help you.” “Okay, great.” Then the third way is we go to conferences.  We have to, well, you don’t have to go to conferences, but it’s certainly part of our continuing medical education.  We’ve got national conferences.  I go to at least one of those, usually two a year.  I’ll go to one or two international conferences a year.  It’s all with the purpose of, as any doctor now needs to, we’ve got what’s called: CME.  Which is our continuing medical education, where we have to do a certain number of things to get enough points to make sure that we’re staying up to date.  The college of surgeons, for me, I’m a urologist, are very particular on what I can and can’t claim.

They’re very strict on making sure that I keep my education up to date.  I think it’s good.  It’s great for the community that you can rest assured that the college of surgeons is bastion of old men that are trying to keep it at closed shop.  I don’t think so at all.  I think the age of what people see and everything that’s happened over the last ten years, saying, in fact, you are a monopoly and you’ve got to work extraordinarily hard to maintain that.  Surgeons do an enormous amount of work to make sure that it’s not a monopoly, but that all the doctors, you can be sure that they’re held to a high standard.

Joe:                 Yes, that’s fantastic, Joseph.  That’s obviously a part of learning.  Do you teach at the moment, as well?

Joseph:            I do.  I’m a researcher as well.  I look at ischemia reinfusion injury, which is what happens with transplant.  If you, say, take out a kidney, it sits with no blood going through it for a while, then we plug it into someone else.  That’s the ischemia, that means no blood supply.  Then the reinfusion is when that blood comes back into that organ.  It actually causes some damage.  We’re looking at ways of preventing that using zinc, so I’m fascinated by that myself.  I do research and I do teach.  We have medical students that are attached with our unit.  They will take them through cases in out-patients, when we’re seeing patients.  We’ll ask them, “Are you happy a medical student sits in?”

Everybody says, yes, that’s fine, and we’ll discuss different cases with them then.  We do teaching to mostly medical students.  We also have, the other teaching we do, is we have other doctors that are in the urology training program, training to be urologists, and will be in three/four years.  Some of them are almost fully through.  We are teaching them the operations.  It’s very much an apprenticeship surgery.  You have to teach the next generation how to do what you’ve done.  That’s how we’ve got to where we are over the last few hundred years of the guys older than you teaching the younger generation.

Joe:                 Would you say that this field is almost – I guess I’ve been in IT for my whole life and I’ve seen this evolution of technology changing so rapidly, do you see this evolution happening around urology, around oncology, these sort of areas?

Joseph:            Absolutely.  It’s almost unfathomable where medicine will be in ten years.  If you look back ten years ago and said, “You’ll be carrying around a little phone in your pocket that’s got the computing power to be able to surf the net and answer any medical problem you’ve got and probably make diagnosis very well.” You would have thought it was crazy.  That’s where we’ve come in ten years.  Can you imagine in ten years’ time what we’ll know about genetics of the disease will come on a lot?  The way of managing the disease.  I think these automated diagnosis, programs, are useful but not the be all and end all because this was one of the bit points, everyone thinks, “I can just plug my symptoms into Google and I’ll get an answer.”

You’ve got to know what to type in.  That’s what medicine will be about.  I think medicine will be about guiding people through.  Look, I’ve got a cough, I think I’m dying of lung cancer.  No, you’ve actually got this, and I think this makes more sense.  You can get lost if you don’t understand the basics of what you’re trying to get into.  That’s where your GP and your specialists are really there to help.  I think we’re a long way off automating – good for me at least – I think we’re a long way off automating surgeries.  With automation coming, there will be parts of things in medicine that will be automated that are currently done by doctors.

The classic examples would be stuff like radiology, like reading an x-ray.  Computers can do that very well now.  When the miss it, they really miss it big.  That’s why you still need urologists.  It’s a lot like planes could probably take off and land themselves, but if they don’t, you want a pilot.

Joe:                 That’s a great point.  Thank you so much, Joseph.  I really appreciate your time.

Joseph:            No trouble at all, Joe.  It was lovely to meet you and good luck with your podcast.

Right now we have a really special guest. His name is Michael Jefford, and Michael is not only an expert in oncology, but he’s also a passionate advocate for cancer survivors! In this episode, Michael shares some truly inspirational words of wisdom on how you can take control of your life during treatment, and what to do with this whole uncertainty and stress around cancer really gets to you.  Michael also has some tremendous insights on how you can deal with the challenges that come with rebuilding your life after cancer: 

Coping with the fear of cancer coming  back (fear of cancer recurrence)

Questions you may wish to ask about the time after treatment

How your general practice can support you to live well

Healthy Living After Cancer

Information for same-sex partners

Gay and bisexual men diagnosed with prostate cancer

Support in your own language (Cancer Council Victoria)

SECOND Ears smartphone app

Episode 009: Why The Oncologist Is Your Guide Through Cancer

Joe:                 Michael, I know from experience that this fear of cancer coming back is very real, like it gets hold of you and much more after recurrence, if you get that.  What can be done with it to deal with it in a better way, both in a healthcare perspective, as well as from a perspective from a person who needs to deal with it right now?

Michael:          Yes.  We know that the worry about cancer coming back or cancer growing or spreading is very common.  We know from a lot of work that’s been done in Australia and internationally, that Australia is really leading in this area, that the worry about cancer coming back is very common and it can last a long time.  People talk about learning strategies to deal with this.  There can be a number of different things.  For some people, it’s about acknowledging anxiety or distress and being able to recognise that and to have strategies to deal with it.  For some people, it’s useful to understand what their risk of recurrence might be and to put that into some perspective.

For some people, the risk of recurrence might be quite low and that can be comforting.  We know, too, that for some people, being able to do all that they can to manage the risk of recurrence is useful.  Strategies like being as well as you can be, maintaining, exercising, healthy diet, participating in regular surveillance, where it’s recommend and evidence-based.  Also, I think talking to people about how you feel and recognising the stress that comes with having had cancer and follow-up and the like.  Sometimes that’s useful to talk to other people who have been in a similar experience.

Perhaps for some people being connected to a support group or something like cancer connect, that the cancer counsel runs.  For some people, it’s useful to have the opportunity to talk to a professional.  That might be a counselor or psychologist or somebody else like that.

Joe:                 Yes, that’s so true, Michael, because sometimes you really need someone with an outside perspective, someone who isn’t involved with you to listen to you and to perhaps give you advice, right?

Michael:          Yes, I agree.  I think a lot of people, friends and family could be well-meaning, but potentially might not recognise the concerns that people have.  To have an attitude of: It’s being you, you’ll be fine, may not actually help people who are really worried about the possibility of cancer coming back.  Having the opportunity to talk to other people who either might have been in a similar experience, so a peer or a professional can be useful.  We know that there are a number of interventions that have been studied in very rigorous scientific research that have been shown to be effective in helping people to minimize or reduce that concern about cancer coming back.

Joe:                 Yes, that is so true.  I know you touched on having some information around the facts.  I know that one of the things that really helped me was immersing myself in cancer, like becoming an expert in my own illness, so to speak.  It gave me a confidence in the treatment and the side-effects and understanding the chances of it coming back.  It also made me ask informed questions, as well.  Is this a good approach?  Is this something you would recommend to others?

Michael:          Yes, I think that everybody’s different.  Certainly, in my own experience, you come across people who have very different styles and needs for information.  There are people who say, “Look, I want all of the information” and they come along, and they’ve researched their illness and treatments and know as much as the healthcare team.  There are other people who say, “Look, I trust you, I want you to give me the best advice.” Everyone’s a bit different.  I think that there are people who, I might provide written information and some people will say, “That’s great, I really want that.” Other people will say, “I don’t want to read it.” It’s handy to have at home in case they want some good evidence-based information.

I don’t’ force a particular my own preference or my own belief on anybody, but I guess recognise that everybody has different information needs and different styles.  One of the things that I often talk about is that, for example, I go to see my accountant and I probably shouldn’t confess this, but I don’t know a lot about accountancy and tax, but I put my faith and trust in my accountant with the belief that he’s going to do the right thing by me.  I think that everyone is going to be different and we need to be able to fit in with people’s information and information preferences and their own preferences about decision-making.

Joe:                 I know you just mentioned how people have different preferences, with respect to information.  Did you notice any patterns with regards to, for example, men and women having different preferences or maybe people of different ages?  What’s your take on that?

Michael:          I think it’s pretty hard to generalise, so there’s probably a trend that younger people probably want to be more involved and often want to have more information.  I guess that we’ve come from a situation of let’s say 50 years ago, where it was more of a: Doctor knows best kind of a belief.  There’s less of that now.  At the same time, there are many people who almost feel burdened if you say, “Do you want chemotherapy A or chemotherapy B?” Some people will say, “I don’t know, you tell me.”

Almost feel that it’s burdensome to be asked to make that decision.  I guess that we have to recognise that everyone’s different and we can’t assume that just because someone’s older or younger, that they’re going to have a particular preference for information or preference for decision-making.  I think the easiest thing is just to ask.

Joe:                 Yes, absolutely.  I know when, for example, I was deciding between my treatments, I could go either the radiation or chemotherapy.  In the end, what really decided for me was the person on the other end, because I spoke to a radiation oncologist and a medical oncologist and really, without even talking about side-effects, different side-effects and treatment, my medical oncologist gave me all this confidence that things will be taken care of.  If any problems should arise, we can work around it.  It was ultimately having the person on the other end that you put your trust into.

Michael:          Yes, look, I think that being in a situation where you trust the person that you’re working with is really important.  I think that’s true when I go to see my accountant.  I trust the accountant.  I think that’s really important in having a relationship with any professional, indeed with anyone, but you really want to find somebody that you can work with, who you trust and you’re going to be able to have that sustained relationship with.

Joe:                 Absolutely.  Michael, I know that there are many alternative treatments that really have no evidence for treating cancer that can give false hope and take people off-track.  Can you talk about what some of these supposed treatments are?

Michael:          Yes.  I think that you’re right.  I think that there are plenty of treatments that are recommended or that are promoted that may not be evidence-based.  There may actually be no information to support their use.  Some of these treatments that have been suggested as cancer treatments have been studied and have either been shown to have been not effective or toxic or both.  Many of them just simply haven’t been studied.  I guess we don’t know for many of the treatments.

I guess that what we’d recommend is that people need to get information, try to find out whether there is data that supports this, and talk to people, talk to their family, talk to their GP, talk to their oncologists.  If there’s something that’s being suggested, then talk with people about that and try to get the information and be confident that they’re going down the right path.

Joe:                 Absolutely.  Where do you think that stuff comes from?  Is it from conspiracy theories or is it some hopeful and magic cure?  What is it?

Michael:          I think that a lot of circumstances we don’t have treatments that are good enough.  Many illnesses, particularly if cancer spread to somewhere else, in many circumstances the standard treatments that we have are unlikely to lead to cure.  For many people, that’s devastating, they want to find something that’s going to give them a better chance.  I think that most people are looking for other options with the hope of a better outcome.  That better outcome might be a better chance of cure or longer survival, fewer side-effects, those kinds of things.  I think that people have very legitimate reasons for looking for other options.  Unfortunately, sometimes I think people are misled and I think that there are people out there who are making money because people are desperate and they’re looking for something more than what can be offered by standard medicine.

Joe:                 Yes, absolutely.  How do you know if this supposed treatment if it’s a myth or if it’s reality?

Michael:          I think that, again, it’s probably trying to get information yourself, but also talking to people and looking for other sources of evidence.  The Cancer Council has an information service, so 131120, and people can call that service and speak to a cancer nurse and talk to them about treatment options.  They might say, “Look, I’ve been given some information about this type of chemotherapy or this putting a magnet on your head or something.” The nurses on the cancer helpline will be able to look up that information and they’ll be able to talk to somebody about the source of treatments that are being suggested.

I have patients who will bring in information and sometimes I’ll be able to talk about that straight away.  Sometimes I’ll say, “I haven’t heard about that, can you let me look that up and then next time we catch up, we can talk some more about it.” I think it’s really important that people talk to their health practitioners but get information and feel confident that the treatment that they’re going to embark on is evidence-based.

Joe:                 Yes, I think you brought up a fantastic point, that nurses are so underrated when we talk about cancer treatment.  I’ve heard so much fantastic advice from nurses, from oncology nurses over the phone, in-hospital, that I can’t say enough good things about thing.

Michael:          I agree.  The nurses often sometimes have more time and can often help people with understanding the information they’ve been given, help people make a decision that sits with them, help people with a broad range of issues that might be health-related, it might be emotional, it might be social, it might be practical.  Those nurses might be in the hospital or the clinic, but they might also be in the community.  I guess that’s having a good team around you, which are your specialists, people in the hospital or the clinic, but also a GP, potentially a practice nurse, and then it’s about having other supports, as well, which might be through the cancer counsel, through a support group, friends, family, all of that.  A network of people around you.

Joe:                 Yes, you’re exactly right.  It’s so important to have your supporters around you.  Your family, like you mentioned, your friends, and specialists.  If you flip out conversation to talk about complementary therapies.  What are some of the approaches that can help someone deal with cancer or having a better life after cancer?

Michael:          As we were just discussing, making sure that you have support is an important component of getting through cancer treatment and life after treatment.  I think that supports are really important.  That could be through family and friends, but it could also be through support services.  There might be a support group, it might be an online forum, it might be a telephone-based support.  That’s important.  In terms of what else you can do to be well and get through treatment, it’s probably not a surprise, but exercise is really important.  There’s growing evidence that exercise helps people get through treatment, and probably reduces the chance of cancer coming back, but has broad benefits.  It helps people with mood, with sleep, with coping with treatment.

Exercise is important.  It’s not always easy to incorporate exercise but we know that some is better than none and more is better than less.  Also, on that, a lot of hospitals don’t have a lot of exercise programs, but GPs can link you in with exercise programs through referral to an exercise physiologist or through a physiotherapist that’s Medicare reimbursed.  Then there are also exercise programs that are run by the, for example, Cancer Council.  They have a program called: Healthy Living After Cancer that you can, again, call: 131120.  I don’t work for the cancer counsel, but I do recommend them.  That’s a program that people can access at no charge.  Also, thinking about diet and alcohol, that will help people get through treatment.

Minimizing alcohol, we know that alcohol can actually increase the risk of cancer coming back for some types of cancer types, including breast cancer.  It’s important to be aware of alcohol consumption.  Then there are other strategies that some people would call complementary, so Tai-chi and Chi-gong, we know can actually help with wellbeing and relaxation.  They are also strategies that we would consider to be very complementary that side aside standard therapies.

Joe:                 Yes, that’s fantastic, Michael.  I should look into that.  Michael, if you’re gay or lesbian or transgender, you might really have special needs.  You might even have to deal with some prejudice when it comes to dealing with cancer.  What would you say to someone who’s having to deal with it right now?  What should you expect and where should you turn to if things aren’t going to plan?

Michael:          Yes, I think you’re right.  I think there are a number of groups that probably feel that it’s a more difficult journey for one reason or another, it might be LGBT communities, it might be migrants, it might be aboriginal people.  A number of different groups that probably have a tougher journey.  I think that can be a part of a problem with having health professionals who don’t necessarily sit comfortably with different groups.  We know that there’s probably, to an extent, people perceive that there’s either more of a hetero-centric attitude or even homophobic attitude sometimes in health.

Sometimes it’s hard for people know are gay or lesbian, transgendered people in the healthcare setting.  It might be important to therefore go and look for additional support services.  Of which there are services.  I know that BCNA, the Breast Cancer Network of Australia and PCFA, the Prostate Cancer Foundation of Australia, both have good links to information and support services.  Now, that’s not just for people who have breast cancer or prostate cancer.  If you had listeners who are gay or lesbian or who have partners or friends who needed extra information, then I’d suggest going to those websites, because they do list services that are not specific to particular cancer types.

Again, the cancer counsel has resources, too, so sometimes it’s tough but to have that additional information and support and link to people who have been through similar circumstance could be useful.

Joe:                 You make a great point, Michael, because there are a lot of things that those support services focused around breast cancer and prostate cancer, because they’re more prevalent, but a lot of those needs, like you mentioned, around it is universal.  If people can cancer, they should go into and look up some of these services.

Michael:          Absolutely.  Breast cancer and prostate cancer aren’t the only cancers that people have.  They’re certainly not the only cancers that gay and lesbian people have.  If you have bowel cancer or if you have any other cancer type, it’s still worth contacting those sorts of resources, because most of these support groups aren’t cancer specific and many of the issues, if you’re a gay man or a lesbian woman, many of the issues that you might experience would be shared regardless of whether the type of cancer that you might have.  I think that support would still be useful regardless of the cancer type.

Joe:                 Yes, exactly.  You touched on other underprivileged groups, like, for example, migrants who might not be heard because they might not have the language skills or maybe the cultural integration to speak up.  Folks like that can really fall through the cracks when it comes to healthcare.  That may make them feel misunderstood.  What can we do to make that better?

Michael:          There’s the Australian research that shows that migrants to Australia that do have cancer do have worse outcomes.  They often report poorer quality of life and more anxiety, depression, etc.  Some of the recommendations from that work were that many people feel more comfortable with practitioners that speak their own language.  I think it’s useful to seek out people who speak their own language and understand their own culture, that might be useful.  There’s always the opportunity to use an interpreter, and I think that that’s important.  It’s better that we don’t have family members who have to act as interpreters.  Sometimes family members who might be well-meaning, might withhold some information from people, which isn’t always ideal.

I think using an interpreter is a good strategy.  The cancer counsel does have a growing amount of information that’s available in other languages.  At the Survivorship Centre here at Peter Mac, we’ve developed information for people who have completed initial treatment for cancer in many different languages, which is being promoted through the cancer counsel nationwide.  I think that there are some strategies, we talked earlier about a telephone information service that’s run by Cancer Council at: 131120, but you can access that with an interpreter.

That’s another avenue, as well.  At Peter Mac, we’re doing some work on audio recording consultations.  That can be useful, too, for people to have that consultation audio recorded with an interpreter.  Then it can be useful to go back and listen to that.  I guess we do need to think about what additional strategies we can do, so that people don’t fall through the gaps, like you said.

Joe:                 Yes, exactly.  I think that recording the conversation would actually be fantastic, even from the perspective who don’t have a language barrier.  I know from personal experience and some research that I’ve read about, as well, that when people go through a cancer diagnosis, their first meeting, you’re just in a fog.  You walk out of the first appointment with an oncologist or a urologist and you remember nothing about what happened.  It would be really good to refer back to something that you can listen to and go, “Yes, so that’s what we were talking about.”

Michael:          Yes.  There is actually good evidence that using audio recordings and also question prompt lists can help people to – question prompt lists are really just a list of questions that you might like to ask.  We’ve developed some questions prompt lists here, including for cancer survivors, so a list of questions that you might like to ask your health professional.  That can help be a note and be an aid when you go to a consultation, to go: Yes, I actually do want to ask these questions here.  That can help with questions asking and that you can ask the questions that might be difficult to raise.  That it might be about: I want to talk about the cost of treatment, or I want to talk about the impact on relationships or sexuality.  Some things that aren’t always asked in a consultation.

That can be a useful way of helping people when they’re going to a consultation.  There’s also good evidence that recording a consultation helps people, too.  It’s an aid.  It means that they get a lot more out of the consultation.  Like you said, you go to a consultation and you’re stunned by bad news and then you just don’t hear anything more.  That’s why taking notes, having a friend there, having an audio recording can help.  We’ve known for a while that these sorts of things help, it’s about trying to make sure that they get implemented.  Colleagues at Peter Mac have an app that’s called: Second Ears.  Which will allow people to record the consultation on their phone, but also so that we get a copy that we can keep in the record, as well.

Joe:                 I love it.  It wasn’t around for me.  Michael, that’s fantastic.  When it comes to, you mentioned, having those pre-prepared questions, I think that sounds like a fantastic resource.  Where would you go to get those questions?  Also, who would you take those questions to?  Is it a medical specialist?  Is it a general practitioner?  What are some of the questions that are you should ask?

Michael:          That’s a big question.  It depends on that person’s individual circumstance.  If you’re newly diagnosed versus you’re finishing treatment, versus another setting, then you might have a different set of questions.

Joe:                 Let’s say you’ve finished treatment, you had an all-clear, and you’re just going to deal with check-ups and you want to improve your life going forward?

Michael:          Yes, so this question prompt list, we have a question prompt list on the Australian Cancer Survivorship website: www.petermac.org/cancersurvivorship.  There are a list of questions there.  Some of those question might be about, tell me about what kind of follow-up I might expect, or tell me what’s the purpose of the follow-up?  It might be a question you might want to ask about what sort of signs and symptoms should I look out for?  It might be about, well, what are the sorts of things that I can do to be as well as I can be, or to minimize the chance of the cancer coming back?  Some people might like to ask about: Are there effects that might happen to me down the track?

We talk about late and long-term effects.  People might be curious about that, but they might also want to know: Are my family members at risk of cancer, or it might be about how do I get support, or can you recommend websites?  Everybody’s going to have a different set of questions.  Some people might feel more comfortable asking their cancer nurse some of the questions or their GP or their specialist.  I always say, if you’ve got questions, ask everybody until you get the answer.  The GP might say, “I don’t know what your risk of long-term effects are.  Chat to your oncologist.” You oncologist, you might say, well, put me in touch with a psychologist in my local area, they mightn’t know, but the GP might.  I think it’s important to have the questions and then see who you think might be the right person to ask them.

If you’ve had a good relationship with the cancer nurse and the cancer nurse is great at putting you in touch with support services, you might say, “Well, I’m going to go and ask my cancer nurse about additional support now, because they might know.” I think it’s important to have those questions, write them down because it’s always difficult when you go to the consultation, you’re going, “I know I had a question and I can’t remember what it is.” Write it down.  The other thing is, if you’ve got questions, the cancer helpline can be useful, but other websites.  If you don’t feel like you’re getting the answers, then take it to your healthcare team.

Joe:                 That makes so much sense, Michael.  I think that using every available tool at your disposal works.  Right?

Michael:          Absolutely.  Sometimes it can be overwhelming.  I think that being able to go to someone who you trust and say, “I’m a bit overwhelmed, I keep reading all of this information, just give me the facts.  Where is something that I can look at that is going to be short and concise and evidence-based.” There’s so much stuff out there, you don’t want to be overwhelmed.

Joe:                 Absolutely.  Michael, there was a time when I was in hospital and I was getting chemo, next to me, there was this man and I heard the doctor talk to him about palliative care.  The man was just freaking out, he was saying, no, I don’t want to go, they’re sending me to die.  I kept hearing about it for hours.  Is that a general perception of palliative care, do you think?

Michael:          I think it’s a common perception.  I think that many people associate palliative care with end of life.  I guess that we think that palliative care is much more than that.  Palliative care is more about making people as well as they can be for as long as possible and looking after physical symptoms but emotional, psychological, spiritual health, but also seeing that person in the context of a family, or an extended group.  Often, palliative care is about trying to help everybody and to try and keep people as well and healthy for as long as possible.  We think that palliative care sits alongside active treatment, and often it’s good to engage palliative care at an early state when they can help with the whole person and the whole family issues and family needs.

Although, palliative care might have particular assistance for people towards the end of life, palliative care, the whole team, that’s doctors, nurses, allied health etc, can be valuable for a much longer period of time.  Palliative care might come in, so we might have somebody with difficult symptom issues, and we might ask palliative care to be involved.  Then they might be involved for a period of time and then not be involved.  They might be involved a year or two later.  Palliative care can come in and out.

Joe:                 You touched on spirituality and when it comes to, for example, cancer survivors, people who have beaten cancer and quite often have a complete shift in priorities and the way they look at life, what do you think is the role of spirituality and other psychological approaches to looking to the future and have a better perspective?

Michael:          Yes, that’s a big question.  I think that what you’re touching on partly is that cancer is a life changing experience.  It’s not all over when it’s over and many people see life differently.  Often, people think about meaning and purpose and what’s going to be important for them for the rest of their life.  They also find meaning and connection in different ways.  I think that for a lot of people it is a time to reflect and also to see what gives them meaning and purpose and value.  For some people, religion or faith is important and strengthens them and allows them to be strong and get through life.

That’s not for everybody.  Other people, it’s just resetting life and going, “These are the sorts of things that are important, these are the sorts of people who are important, these are the sorts of activities that are important to me.  This is who I want to live my life.” That’s, at the same time, survivors talk about an obligation to have an epiphany and an obligation to feel like, “Wow, my life has changed fundamentally.” For some people it is and for other people it’s just like, “Well, I’ll just get back onto life and it’s pretty similar to how it was before.” Life hasn’t changed fundamentally.  For some people, it is a shift.  I think for most people, there’s a degree of seeing life a little bit differently.

Joe:                 In terms of cancer survivors, how does the doctor, the general practitioner, how do they stay in the loop with the cancer survivors?  I have a great relationship with my GP, but it doesn’t feel like there is a holistic integrated approach out there.

Michael:          I think that we probably all recognise we could do a better job of providing a more integrated coordinated healthcare model.  We know that for many people, they have a very fragmentated healthcare system.  They might be seeing, even when we just think about cancer, they might be seeing a surgeon, they might be seeing a medical oncologist, a radiation oncologist.  They might perhaps also be seeing nursing allied health.  That’s just their cancer part of their health.  If people have other health conditions like diabetes or heart disease or lung disease, then they could be seeing other practitioners.

Then the GP is supposed to bring it all together and see the whole person and coordinate all of this.  That’s pretty challenging and I don’t think we necessarily do a good job of that.  In the cancer world, people often talk about, and GPs talk about, the GP might make a diagnosis and then they go and see a specialist, they get stuck in the cancer world, and then at some stage, they pop out again and the GP often goes, “I don’t know what happened to you.” I haven’t had good information that can be a problem because often patients and survivors go, “I don’t know if I should be seeing my GP because they don’t seem to know what’s going on.”  That’s not the fault of the GP, it’s the fault of the system, and often cancer care, that we don’t do a good job of integrating the GP with the whole person care.

We think that it’s important, though, because often people have other illnesses, often the GPs have had a long-standing relationship with that person.  They might have known them for decades.  They understand the whole person.  It’s really important that we don’t neglect the GP.  Now, the tricky thing is, obviously if you’re coming into hospital on a regular basis, it’s extra visits to say, “Well, you should be seeing your GP, as well.” Understandably, many patients would say, “But I’m seeing you.  I don’t want to have to see yet more appointments.”

It’s challenging.  I think we need to be doing a better job of communication from the point of cancer diagnosis, through the cancer treatment, and beyond.  The GP has a really important role in managing other illnesses, in health promotion, in wellness, in trying to help people quit smoking, exercise, eating well, managing the whole person.  There’s a way to go in that.  I think we’re making progress but there’s still a way to go.

Joe:                 Fantastic.  Thank you so much for sharing your perspective, Michael.

Michael:          It’s a pleasure.