Simplify Cancer

In short:

3 Reasons Why People Disappear From Your Life During Cancer Vlog

I’m super excited today because we have Linda who is a world-leading expert at applying mindfulness to dealing with worries and uncertainty, both during cancer and beyond.  Here are some things that we cover today:

About Dr Linda Carlson

Mindfulness-Based Cancer Recovery

Mindfulness Based Stressed Reduction

Mindfulness-Based Cancer Recovery Book

Am Mindfulness Mobile (Apple App store)

Am Mindfulness Mobile (Google Play)

Episode 029: What You Must Know About Clinical Trials Before Starting Treatment

Joe:                 Tell me, what’s mindfulness and why is it important when you’re dealing with cancer?

Linda:              Okay, well, let’s start with the basic question, what is mindfulness anyway?  If you look at the simplest definition, mindfulness is just paying attention in the present moment with an open and accepting attitude.  It’s simple but it’s not easy because when you think of where your mind normally is, there’s research saying we have anywhere from 50,000 – 70,000 thoughts every day.  50,000 – 70,000 individual thoughts.  Yes, they’ve done research where they ping people with little beepers and they ask them, what are you think about and they ask their moods.  It turns out that, make a guess, how often do you think that our minds are not in the present moment?

Joe:                 Most of the time?

Linda:              We might think that, but in this study, they found that about half the time people’s thoughts weren’t on what they were doing.  In conjunction with that, they also found that people were happier when their attention and their thoughts were in the present moment.  If you ask yourself the question, why would that be?  Why is it that when my mind is wandering, I’m less happy?  Well, you can look to where the mind goes often.  If you look at our habitual ways of thinking, our minds might be in the past.

You might be reliving something and saying thing, or could have, should have, would have, or if only this, or if only that, things would be better.  Then you feel really down on yourself, you can have regrets.  You can get angry and resentful, right, when you’re thinking on the past, because you can’t change any of that.  You can get really wrapped up in blaming yourself for how things went.  Or, for a lot of people and a lot of people with cancer, their minds are zooming off to the future, they’re worrying about, what if this?  What if that?

I don’t know what’s going to happen.  What does my future hold for me, so then you get all stressed out and worried, right?  All that ruminating in the past makes you depressed, all that worrying about the future makes you anxious, so you miss the moments when you live your life, which is only in the present moment.  It turns out when we are able to keep our attention and our awareness in the present moment, we tend to be happier because we’re not so stuck with things we can’t change or things that may never happen.  That’s generally the idea of mindfulness, is learning to be awake and aware in the present moment.  There’s also lots of myths around, what is mindfulness, that it’s important to dispel.

One really common myth is that your mind just goes blank, right?  There are no thoughts and it’s all blissful and you’re floating like one of those yogis sitting in a lotus position.  That’s a common roadblock because people might try mindfulness practice and their mind doesn’t go blank and it isn’t calm and peaceful.  They think, “I don’t know how to do it or I’m doing it wrong, or I just don’t get it.  I can’t do it, it’s impossible.” Right?

Joe:                 Yes, I’ve been there, done that.

Linda:              It’s really important to understand that mindfulness or awareness in the present moment doesn’t always mean that it’s blissful because your present moment experience isn’t always blissful.  We can be aware and accepting of uncomfortable mental states, that’s still being mindful.  We often think of mindfulness as three main components called: IAA.  The first one is intention, so you make a purposeful intention that you’re going to try to be present in the moment.

The intention for doing that may be just because you want to be more available and awake and aware in your life, you want to be present, or maybe you actually want to hone this skill for a particular reason.  Like, you want to help cope with a difficult time or work with a symptom like pain or insomnia or something like that.  That’s your intention, which is your guiding light.  Then the second component – intention is like the why of the practice.  The second component is attention, attention training, that’s the core of the practice.  That’s the what, is attention.

Mindfulness is a skill that you have to learn through practice, just like you would learn to play tennis or play the piano.  You’re not a piano virtuoso overnight, and you’re not a tennis star by watching people play tennis or reading about it.

Joe:                 Although, that would be nice.

Linda:              Yes.  People love to read books about mindfulness but if you don’t actually do the practice, you’ll never get any better at it.  Just wanting to be mindful doesn’t make you mindful.  I would love to speak 12 languages, but I don’t because I haven’t practiced doing that, right?  The core of the mindfulness practice is attention training.  That’s when we purposefully turn our awareness towards what we’re paying attention to, and when our minds wander, like it inevitably will, you gently lead it back, over and over again.  Our awareness often is on something mundane in the present moment, like your breath rising and falling, or a sensation in your body, if you’re doing a body scan.  It can be any element of present moment experience.

You can focus on sounds in your environment.  You can focus on sensation in your body or thoughts that are passing.  You have to have that vigilance to notice when your attention wanders and bring it back.  That bringing back, each time you do that, it’s training your mind to walk a different path, it’s actually strengthening neural connections in your brain that support the ability to be in the present moment.  The strong neural pathways we have now take us to the past and the future and analysing and judging.

We have to retrain the brain to beat new paths.  We do that through repetition and attention training.  That’s the second component, the a is attention.  The third component is how we do it.  That’s the a of attitude.  It’s really easy and you’ve probably had this experience, to be very harsh and judgmental when you try to do mindfulness practice, like, “I suck at this, I can’t do it.  I give up.”

Joe:                 Absolutely.

Linda:              That’s obviously not helpful.  We want to apply attitudes of kindness and non-judgment, openness and curiosity, as well as self-compassion.  Thinking, wow, this is really tough.  This isn’t an easy thing I’m doing.  I’m just going to have to accept that it’s going to take time.  Another attitude is patience.  Another one is acceptance.  When we sit and pay attention to our experience, often, it’s not pleasant and it’s not what we would optimally like it to be.  Your mind is crazy and worrying and driving you up the wall, but can we accept that’s where we’re at, we’re having difficult emotions.  Can we be kind about that?  The attitudinal component helps soften the discoveries through the attention all towards the intention of being more present and awake and aware.  That’s mindfulness in a nutshell, I guess.

Joe:                 Yes, fantastic.  I really love how you say that you have to have an internal reason of why you’re doing it, right?

Linda:              Yes.

Joe:                 Sorry?

Linda:              Yes, I was just going to say, your intention may change, or it will evolve over time.  For some people, they may have really grand intentions just to become more self-aware and personal growth and ultimately, to be liberated from suffering and reach enlightenment, these types of objectives.  It also may be very mundane, I want to cope with day-to-day stressors in my life.

Joe:                 Yes, absolutely.  I know how you mentioned that you focus on where you are on and you don’t allow yourself to wander off, to think about other things.  When you do, you have to be kind to yourself and let it go.  How do you actually focus on bringing yourself back to that moment?  Bringing yourself back to the space where you are now?

Linda:              There’s this meta awareness, we call, right?  There’s a larger awareness that sees what we’re doing.  We’re trying to channel or develop the skill of this meta awareness.  Say, for example, we’re doing awareness to breath meditation.  You’re using mental noting to help you.  You’re noting to yourself in, every time you breathe in, you might be feeling the rising of your belly.  You might be breathing in and thinking in, rising, out, falling.  In, rising, out, falling.  Then you think, “I forgot to return that phone.”

Then you might think, “I have to do it now or maybe I could do it later.” Then that meta awareness says, you’re off the breath, you’re off the breath.  It might take a while or maybe it chimes in right away and you go, I’m off the breath.  Then you say, let it go, I’m going to let the phone call go and then you’re going to come back.  In, rising, out, falling.  That’s the training.  That’s it.  Right there.  The noticing and the coming back.  Diverging from your focus isn’t a failure.  That’s how you get better, right?  That’s how you learn the skill, if you work constantly on your breath all the time in the beginning, then you’re already doing it, right?

Joe:                 Yes, absolutely.  Tell me, Linda, is mindfulness and meditation, are they different?

Linda:              Well, mindfulness is a form of meditation.  Mindfulness is also something a little bit broader because you can think of mindfulness in two ways.  Mindfulness is a way of being in the world.  You can be more or less mindful at any given time.  It doesn’t take extra time to be more mindful as you go throughout your day.  It’s just a way of being.  It’s almost like a trait.  Mindfulness is also a practice, mindfulness meditation.  That practice of sitting down and paying attention on purpose and training our attentional capacity.  That’s the meditation of it.  It’s a form of meditation practice.  There are many other forms of meditation practices, as well, that are practiced around the world.  Mindfulness is more like a sub-type of meditation practice.

Joe:                 Cool.  How did you discover that mindfulness is something that really helps people during cancer?

Linda:              Well, I had already been practicing mediation and yoga for about ten years when I started working with cancer patients.  I had some colleagues that also practiced yoga and meditation.  We all got together and said, this could really be helpful for the people we work with.  There are a number of features or elements of the cancer experience that made us think that.  I don’t know if you have a personal experience, but what’s it like to be diagnosed with cancer, do you think?

Joe:                 Yes, I do have a personal experience.  It’s an incredible shock to the system.  I think you described it so eloquently when you said that you spent a lot of time, on the one hand, ruminating on the past.  You’re thinking, what could I have done differently?  Could I have picked up the cancer earlier?  What have I done in my life?  Then, again, like you said, you also spend some time living in the future because you spent time thinking, well, what’s going to happen, is this treatment going to work?  Is this cancer going to come back?  It’s incredibly difficult to stay and be in the moment, with the life that you already have.

Linda:              Yes, exactly, so you’ve encapsulated the main challenges, that are uncertainty about the future, loss of control, right, because we often feel like we control the path of our lives.  We’re going to work for X number of years, maybe have a family, then we’re going to retire and live well into our 80s or 90s.  We feel like that’s something we have some control over, but then cancer steps in and that’s all turned upside down.  People often question, what is my life going to look like?  I don’t really have as much say as I thought I did.

Then there’s this unpredictability about your treatments and you have to take time off work.  There’s loss of control, there’s this uncertainty about the future.  As you said, too, there can be, for many people, blame and guilt and shame about even being diagnosed with cancer in the first place.  Then there’s all the stuff you have to cope with because of the cancer and the treatments.  There’s insomnia that’s a very common symptom, fatigue from the treatment, super common.

There can be cognitive problems that are a consequence of the treatment and the anxiety.  There can be symptoms like pain and then there’s usually anxiety and depression and decreased quality of life.  There’s a whole host of different things that a person’s having to deal with, right from day one, going forwards.

Joe:                 Exactly.  That’s exactly right.  This feeling of not knowing what the hell is going on and trying to navigate your normal life, because that also doesn’t stop because you still have to do the things you always do, whether that’s work or family or friends.  Then you have to figure out this whole system and an entire new language around treatment.  Yes, it’s incredibly difficult not to be anxious and not to have your mind jump all over the place, right?

Linda:              Yes.  We’re really good in western societies of one type of coping, which is called problem-focused coping.  This is writing the to-do list.  I need to schedule an appointment for this, I need to buy certain supplies, I need to book time off work and get someone to take the kids to school.  We can write all these lists and solve problems quite well, but there’s this whole other realm of coping called emotion-focused coping that we’re not very good at, often.  All of this emotional stuff that’s out of our control, the fear and uncertainty, and all of these difficult emotions that are swirling around, well, what do we do with those?  That’s where the mindfulness practice is so very helpful.

There are so many features of it that really the people that I’ve worked with find very helpful in dealing with that loss of control and loss of certainty.  With the mindfulness practice, we talk about just accepting things as they are and really trying to do the best we can in the moment and letting go of outcome.  We also talk about these attitudes of non-attachment, which is this idea of letting go.  Of really making a distinction of things that we have control over and things we don’t, focusing on the things we can do.

We can learn a mindfulness practice, we can learn how to respond to things in our environment in a more thoughtful way.  We can look at how we perceive events in our environment and do we blow things out of proportion, do we jump to conclusions?  Do we have these cognitive habits that are unhelpful?  Taking control of those sorts of things where you do have choice and you do have option and you can learn these skills and techniques.

There’s so much really you can’t control, so not focusing on that stuff and instead, focusing on all the things you can do in the moment, in the day, that’s going to set you up for better days in the future.

Joe:                 Absolutely.  I love how you break it down into this problem-solving way of coping and emotion-based way of coping.  Tell me, with mindfulness, does that mean that when you’re more mindfulness of being in the moment, when you’re more present in your own reality, that some of the negative thoughts, do they go away somewhere?

Linda:              Yes, well, you’ll still have the negative thoughts, but you’re not feeding them, you’re not latching onto them and ruminating about them.  Another thing you learn when you practice mindfulness is impermanence.  We have this slogan: The only certainty in life is change.  Everything is coming and going all the time and it’s our need to make it a certain way and grasping on to wanting things to be one certain way and pushing away other experiences we don’t like, that’s what causes suffering.

It’s not the experiences themselves because they just come and go.  If you are having a bad day, it’s comforting to say, well, this is going to pass, this will pass.  It’s another common saying.  This idea of just the recognition of impermanence allows us to accept difficult emotions, watch them, understand them, spend some time with them, then let them come and go at their own pace.

Joe:                 Linda, that’s such a great way of looking at things.  I’m always the type of person who sees something negative and I jump on it.  You know, I think a lot of us do that.

Linda:              It’s counterproductive because it’s only natural to have all sorts of emotions coming and going, especially with such a challenging life experience.  When we don’t allow the ones we consider undesirable or negative, we supress them or say, “No, I have to be positive, I have to put on a happy face.” Well, they’re just going to keep popping up.  I don’t know if you have the game whack-a-mole in Australia.  You don’t?

Maybe it’s a Canadian thing.  It’s an arcade game where there are these little creatures, moles they pop up and you hit them with a stick and it goes down and the next one pops up and you hit it.  Anyway, the whole point is that you try to squish it down here, but it’s going to pop up over there when you don’t want it to.  If you just let it do what it’s going to do, it will run its course.  It’s when we try to supress emotions that they’re actually more harmful to us.

Joe:                 That’s fantastic.  It’s all about not supressing them, but just observing them.  Like you said, it’s going to pass.

Linda:              Yes, and observing them with this meta awareness I talked about.  You can be really anxious and feel it in your body and have an awareness of that anxiety that’s not anxious at all, if that makes any sense to you?

Joe:                 Yes, I think it does because I guess you’re not – I’m thinking of, for example, insomnia is something that if you wake up and you want to go back to sleep, but you can’t go back to sleep because you’re thinking that you can’t sleep and you’re focused on it and it makes you… you’re running in a loop.

Linda:              Yes, it’s like, I’m not sleeping, I’m only going to get four hours of sleep and I’m going to be wrecked tomorrow.  I really have to sleep.

Joe:                 Yes, exactly.

Linda:              You’ll never sleep then, right?

Joe:                 Like you said, maybe just quite all right then, thinking that it will go away.   It will be what it will be.  What if I don’t get my perfect sleep or whatever, right?

Linda:              Yes.  We actually teach people specific breathing techniques that help to calm your nervous system and bring on the relaxation response and also, occupy your mind, so it actually helps you sleep better.  That’s part of some of the teaching we do to patients in our programs.

Joe:                 That’s fantastic.  Can you share some of those techniques right now, in terms of breathing?

Linda:              Sure.  Well, really, the simplest thing to do to calm yourself down is just to switch over to a slower, deeper type of breath.  We might call it diaphragmatic breathing or belly breathing or slow breathing.  If you sit in a way that you can breathe, because often we’re slumped over and there’s not much room for movement, but if you sit upright and don’t even try to change your breath, but just maybe close your eyes if you’re comfortable, but just pay attention to how you’re breathing.  One thing you could do is put a hand on your lower belly and a hand on your chest, just to feel it better if you want.

Then notice where there is movement.  You may feel some rising and falling in the chest or some in the belly, or maybe more in one area or the other.  Then notice also the length of the in and out breath, then the mind is probably wandering, so just notice that and bring it back to your breath.  Then slowly you can drop your hands if you want, but slowly just allowing that breath to become a bit deeper, so that you feel more movement in your belly and you’d be breathing in for a count of four, if that’s comfortable.

Then breathing out the same, so maybe counting down.  For example, you’re breathing in, one, two, three, four.  Then out, four, three, two, one.  Then I like to add in a little visual image of a wave, as you breathe in, it goes up.  One, two, three, four.  Then as you breathe out, it goes down, four, three, two, one.   Trying to find a count that’s comfortable and release tension through the chest and the belly, then just following that wave of the breath.

As you exhale, there’s a bit of a release of tension with your shoulders moving away from your ears.  Relaxing the muscle through the belly and the buttocks and the legs.  You can open your eyes from that, but how did that feel?

Joe:                 That was great, Linda.  Yes, it was really great.  It really started with the breath, but it made my whole body feel more relaxed.

Linda:              Yes, so if you pay attention to muscle tension in your body that you’ll notice, it’s always there but often we’re not aware of it.  As you exhale, that stimulates your relaxation response.  That’s a good time to let go of a lot of that tension you don’t need.  What that type of even breathing will do is bring you to balance between your sympathetic nervous system, which is your fight or flight reaction, you know, which revs up your body and increases your heart rate and your blood pressure.  The parasympathetic response, which is the relaxation, which tones down all of that.  Just a really simple even deep breathing will balance out those arms of sides of your nervous system.

Joe:                 That’s fantastic.  Is that in some way related to something like chi-gong or even tai-chi in some way?

Linda:              Yes, we’re actually doing a study now comparing mindfulness meditation to tai-chi chi-gong program.  Yes, those are forms of what they might call moving meditation.  Chi-gong especially uses a lot of control of the breath and different ways of breathing and moving to bring about balance to the nervous system in a state of relaxation and calm, as well.

Joe:                 Yes.  I think it’s so incredibly useful during cancer because it’s such a stressful time.  People say, well, just take it easy and relax.  How are you actually supposed to do that, right?

Linda:              Yes, there are lots of different things.  We call them mind-body therapy.  There are lots of mind-body therapies that have shown to be beneficial, just relaxation exercises.  Things like using imagery, self-hypnosis, or seeing a therapist for hypnosis.  Meditation.  Yoga, as well, has a lot of research, tai-chi, chi-gong.  All of these types of therapies are ways to relax physiologically through the nervous system.  Also, strategies you can learn for personal empowerment and taking some control over how you feel in the moment.

Joe:                 Yes, exactly.  Linda, there are lots of negative emotions that come up during cancer.  You start to worry, of course, you know, like a pain or an ache may trigger worries.  You go down this rabbit hole of worries and negative thoughts that really affect you.  You really want to get these out of the way and break the loop.  What advice do you have on that front?

Linda:              Fear of cancer recurrence is so common, even for people who have a really good prognosis.  Almost everybody talks about that.  You get an ache in your armpit and maybe that’s where it started if it was a lymphoma or something, right?  Then you start to think, it’s coming back.  Then you get all worked up and your body gets tense.  That tensions and the increased arousal in the heartrate makes the symptoms worse.  You think, it really is, now it’s spread.  I can feel it in all these different parts of my body.  Then you think, what if it’s coming back?  Is it going to be worse this time?  Within a few minutes, you’re digging your grave, right?  Yes, it’s very common.  The mindfulness practice helps you notice that right at the beginning.

Ah-ha, I’ve got an ache or a pain and I’m starting to go down that rabbit hole, like you said.  You can stop it right there, you can say, no, I’m not going to go there.  The rule of thumb we usually tell our patients is, wait a week, okay, just notice it, use your relaxation practices, use your mindfulness to not get worked up.  If it’s still there in a week, then go see your doctor, make an appointment.  Usually, these things are so transient, that they come and go.  The thing that makes them worse is our worrying about them and us having all of that muscle tension and stress around the area.  It does make the symptoms worse.

Then, of course, you think, yes, it’s coming back.  Then you’re running to the doctor’s office all the time, getting tests you don’t need.  Use the mindfulness practice, go to the yoga class.  Just noticing that you’re doing it is really the most important step.  It’s being like, this is a red flag, this is happening.  I know what this is, I know what I can do, I’ll keep an eye on it and I won’t ignore these things if they persist, but I’m not going to jump on every one of them, right?

Joe:                 Yes.  Yes, absolutely.  Another thing that I stumbled upon, Linda, is after going through cancer and getting a good result, you start to really look at life in a really good way.  I’ve spoken to lots of people who went through this experience, as well.  You start to look at some things in a much more different, in a much more positive way.  You realise that things have changed, things will probably never be the same, but at the same thing, you’re not so much focused on things that are not really important, and you really start to put your energy and your time into things that you care about and into people that you care about, as well.  Finding something positive in your life after cancer, or despite cancer, what’s your perspective on that?

Linda:              Yes, Joe, you’ve hit the nail on the head there.  In academic circles, we call this benefit finding or post-traumatic growth.  This idea, yes, people study this, we’ve looked at it with our people, as well, it’s this idea that a traumatic experience, something like cancer or other traumas, as well, can trigger people to take a broader look at their life and what does bring them meaning and purpose in life and where is the value.  If my life is foreshortened, because every person who hears that diagnosis, “You have cancer”, thinks, “I could die prematurely and is this what I wanted my life to be about?” You revaluate where you thought you were going and what’s really truly important.  If your time is limited, and all of our time is limited, you just realise it more concretely with the cancer diagnosis.  Is this how I want to live my life?

We look at things like this, benefit finding, or post-traumatic growth, and also that concept of spirituality, which is finding a connection with something larger than yourself.  It might be a connection with other people, with community, with some kind of a higher power, with the universe.  Feeling a sense of interconnectedness, as well as this sense of meaning and purpose in life and, yes, revaluating the way you live your life day-to-day and we’ve done many interviews with people who go through the mindfulness program who talk about how that practice has facilitated their pathway through this personal growth.

Joe:                 Yes, fantastic.  Linda, if someone wanted to find out how to get immersed in mindfulness, what are the resources that you can recommend?

Linda:              Well, there’s lots of stuff online in terms of mindfulness training programs.  Well, specifically for cancer, I would say start with our book.  There’s the mindfulness-based cancer recovery book that Michael Speca and I wrote.  It really takes you week-by-week through the program.  It’s got scripts for guided meditations.  We’ve also actually just… I’m not sure if it’s released to the public yet, but we made an app out of that program.  It’s an app called: Am Mindfulness.

Just A-M Mindfulness.  There’s a cancer journey within that that actually has teachings from me and Michael that we do in our class.  That one is specifically for cancer survivors and patients.  There are many, many others.  There’s Calm and Headspace and so lots of app-based things.  We also made an adaptation of the in-person program to a web-based real-time video conferencing program through a company called: Be Mindful.

They’re in the States, but they do these video conferencing mindfulness-based cancer recovery sessions on a regular basis, so anyone can sign up for any mindfulness-based cancer recovery program.  Then there’s the generic mindfulness-based stress reduction that ours is based on.  There are people trained to provide those programs all over the world.  Starting with an NBSR program is a great way for anyone to start.  Then maybe going to more of the more cancer-specific resources after that.

Joe:                 Yes, fantastic.  Thank you so much, Linda, that was fantastic advice.

Linda:              Well, I hope it’s helpful.

Joe:                 Absolutely.  Thanks so much for your time, I feel like it’s been fantastic.  Love it.  Love what you do.

Linda:              I enjoyed it, too.

When it comes to making decisions about your cancer treatment, you expect your specialist to have all the answers so you know exactly what you need to do, but often, that’s not how things turn out.

You may have different treatment options, each with its pros and cons.

All of a sudden, you have to make life and death decisions over things you don’t really understand…

So how do you go about making a decision that is right for you?

This is what I learned from experience that may help.

In short:

Making the Right Decision About Your Cancer Treatment Vlog

Waiting room hammers home the reality of cancer – yes, this IS actually happening, and it’s happening to you, of all people!

Your entire life turns upside down when you are confronted with the ultimate uncertainty…

But when you are prepared for what you need to bring with you and what you want to take away from your appointment, you create confidence for getting yourself through treatment in the best way possible.

Here are some things that I am going to discuss in this episode:

Taking the Stress Out of Your First Oncologist Visit Vlog

With cancer comes uncertainty.  Often, you don’t really know what’s going on, yet, you have to make decisions over things that you don’t really understand.  How do you know what’s happening?  How do you know what’s the best option for you when it comes to treatment?  Is clinical trial the right way to go?  These are just some of the things we’re talking about to David who is a radiation oncologist and who also wrote a fantastic book called “Taking Charge of Cancer”.

Here are some things that we cover today:

Taking Charge of Cancer

Episode 029: What You Must Know About Clinical Trials Before Starting Treatment

Joe:                 David, you say that taking charge of your treatment can really improve your chances.  What does it mean to you?

David:              Taking charge of your treatment can help to make sure that you are getting the best possible cancer treatment.  We know that across the world, there are big differences in quality of cancer treatment.  By making sure that you are getting access to your medical records, understanding your medical records.  Making sure that you’re getting the best high-volume surgeons or radiation doctors, you can really make sure that nothing is missed and that things are proceeding as they should.  Unfortunately, sometimes in the media, we hear stories of cancer treatment gone wrong.

One example of that is, not too far from where I am, there were a couple of breast cancer patients who had mastectomies, they had their breasts removed, only to find out afterwards that they didn’t have cancer at all.  That the original biopsy that was done before the mastectomy was done, it didn’t show cancer, but the report was misread by their surgeon.  Obviously, that’s very tragic and it’s something that we could avoid if we can start empowering patients to do things to take charge of their cancer, like getting their pathology reports and learning to understand them.

That’s what the book really does, it’s meant to be a guide book on how to take those steps, how to understand these reports that are written in a language that many of us don’t work with on a daily basis.

Joe:                 Yes, that’s a fantastic point you make, David.  What are the sorts of things that as a patient you should watch out for in the report, in the medical report?

David:              Well, I think the first thing is to know which medical reports are needed.  Really, the important reports are the reports from imaging.  If you have a CT scan or if you have an MRI scan, getting the report from that.  Also, getting the report from the pathology.  The pathology report is something that’s written, if you’ve had a biopsy, or if you’ve had a surgery.  When you’ve had a biopsy or a surgery, the specimen that they take is sent to a doctor called the pathologist, who looks at the specimen under a microscope and issues a report.

All of the treatment stems from the pathology report and the imaging for most patients.  Along with those two reports, usually when you meet your doctor for the first time, they also write a report, which we call a consultation report.  In that consultation report, they will summarise everything that’s going on.  It’s a fantastic tool if you can get a copy of that, to understand your type of cancer, the stage that you’re at and what the goals of treatment are.  Some hospitals now have a setup where you can login and you can access your reports online.

At other centres, you have to go and get them printed off, which can come at a cost.  I find that many people, when they get copies of their reports, they really like having them.  What I often do when I see a patient who has had a scan, let’s say they’ve had a CT scan, I will bring their report in with them and I’ll underline the important things and I’ll give them that copy.  Then they can know exactly what’s going on.

Joe:                 Yes, exactly.  That’s such a great point, David.  That’s something that’s always made me feel uncomfortable.  The fact that the person who is deciding my faith at various points of the cancer journey is the pathologist, is the person I never see, and I never talk to, you know, as a patient?

David:              Yes.  Some situations, it’s pretty uncommon for a pathologist to reach out to the patient directly, but sometimes radiologists do that when someone has a scan.  Sometimes the radiologist will come out and talk to them.  I think the world has changed medicine has changed.  People are much more informed and they’re much more empowered.  I’ll give you an example of how these things can change.  Shortly after I wrote the book, I went in with one of my patients who’s had a scan of his brain.  That scan was looking for cancer.  I had read the report and I went into the room and I said to him, the scan was fine, there’s no sign of any cancer in your brain.  He said, okay, can I have a copy of the report.  I said, okay.  I hadn’t printed it yet, so I went back up and printed it and brought it in and I went through with him.

One thing that I had missed, that even though there was no cancer there, the report had said, okay, by the way, we see a small aneurism that needs to be looked into.  An aneurism is an issue with a blood vessel, which in some cases can be quite serious.  Even though I had tried to provide the best quality of care.  I had just been so focused on, is it cancer?  Is it not cancer?  That I hadn’t read right to the end of the report.  I had missed that.

By going over that with him, I was able to take a second look at the repot and I sent him off to have that aneurism taken care of.  It can really make a difference to get copies of these reports.

Joe:                 Yes, that’s fantastic, David.  It just makes such a huge difference, as you gave in that example.  When you’re sitting down with a patient and maybe you’re talking about your report or your diagnosis, maybe you’re deciding which kind of road to take with treatment, how do you know the advice specialist is really the best one for you and your situation?

David:              Yes, that’s a good question.  I think the first thing to do is to know what the goals of the care are.  Before we even talk about knowing that it’s the right approach for you.  It’s to understand what the goal is.  Is the goal of treatment being to get rid of the cancer?  Meaning, to cure it, or is the goal of treatment just to slow things down, knowing that a cancer is incurable, because unfortunately, of course, some cancers are incurable.  What we find is that a lot of times, we’re not doing a good job of informing patients of the goals of treatment.

There was a study in the New England Journal of Medicine a few years ago, where they asked patients who were getting chemotherapy, what is the goal of the chemotherapy.  Is it meant to cure your cancer or is it meant to slow things down?  About three quarters of the patients who answered that question said that the goal of the chemo was to provide a chance of cure, but when they designed the study, all the patients that they were asking these questions to, were patients that were getting chemotherapy that was not meant to cure their cancer.

They’re all getting chemotherapy to slow things down, not to cure it, but three quarters of them had the opposite impression.  I think it’s a failure on the part of our medical system of us as physicians, that we’re not doing a great job of communicating the goals, because once you know the goals, it can help you make a better judgment about how aggressive you want to be.  Often when the goal is for cure, then people will be more aggressive.  I, myself, if I had cancer, if the goal was for cure, then I would want to go all out because we’re looking at a long-life expectancy if you’re successful.

If the goal of care is to slow things down, maybe buy you a few extra months.  Then, in my mind, and in many people’s mind, you start looking a lot more into short-term quality of life and side-effects.  I think if you’re really wondering if someone’s recommending the right treatment for you, the best thing is a second opinion.  I’ll tell you some ways that you can get second opinions without even seeing a physician.  For a lot of cancers, there are many options.  Joe, I know that you are well-versed in cancer, so you know the story of prostate cancer, how for some men, you can have active surveillance, you can have surgery, sometimes you can have internal/external radiation.

There are so many different options, right?  How do you know which ones are best for you?  The best way is to get a second opinion.  A great way to get second opinions is something called a tumour board.  What a tumour board is, it’s a team huddle, where doctors who treat a certain kind of cancer all get together.  They’ll be different kinds of doctors, so at a prostate cancer tumour board, for example, there will be surgeons, they’ll be radiation doctors, they’ll be chemotherapy doctors, who we call medical oncologists.  That tumour boards, the whole group discusses a case.

Usually, what happens is, they have a radiologist to look, again, at the imaging, and they have a pathologist to look again at the biopsy.  Everything is looked at a second time.  The group discussed the treatment options.  At many centres, particularly at bigger centres, they will have tumour boards.  It’s free of charge to have your case discussed there.  In the UK, from what I’m told, it’s required that all patients be discussed at a tumour board.  If you’re a patient with a new diagnosis of cancer, you could ask your physician, “Please can you present my case to a tumour board.”

Then the tumour board will discuss your case and they’ll either come back and say, “Yes, we agree with the original recommendation, which was, let’s say it was for surgery, we agree with that.  That’s a great recommendation.” Or they’ll say, “You know, we thought of another couple of options that may be reasonable.” Or sometimes if they say hey, “We found something that’s slightly changed, either in the pathology or on the imaging.” That happens in about ten or twenty percent of cases, that when they go to the tumour board, something changes about the diagnosis about what they see on the scans.  Sometimes it can have a big impact.

Even if it doesn’t, if the tumour board comes back and says, “Hey, we agree with the recommendation”, then you really have a lot of faith that the recommendation was the right one, because you’ve had this second, or even third and fourth, and fifth opinions because there are a lot of doctors on the tumour board.

Joe:                 Yes, that’s such a fantastic point, David.  Also, because you get perspective from people in different fields.  As you said, maybe it’s a surgeon, maybe it’s a medical oncologist, maybe it’s a radiation oncologist who’s there, as well.  Maybe it’s another specialist in there, as well, so you really get all of your bases covered.

David:              That’s right.  I know that you know this very well, Joe, but there are these biases in medicine, in cancer treatment, where doctors tend to recommend the treatments that they give themselves.  I, as a radiation doctor, I know that I’m biased to recommend radiation and surgeons tend to recommend surgery.  I don’t think it’s anything sinister.  I think it’s just that we believe in what we do.  What can happen is, a patient is sent to me first, to a radiation doctor.  I would give them all the choices, but in some cases we’re a bit blinded to what the other choices might be.

Really getting an opinion from different specialists can really be helpful.  It’s one thing I say in my book, is that if a surgeon is recommending surgery, you should ask them, is radiation an option for me?  If it is, can I meet with a radiation doctor and vice versa.  If you’re meeting a radiation doctor and they say, radiation is recommended, then what about surgery?  Is that an option?  Can I talk to a surgeon?  Sometimes they’ll say, that’s not an option because of this and this and this, or they might say, “Yes, that’s a great idea.” Then it just gives you a sense of confidence that you are getting the best treatment.

Joe:                 Yes, exactly.   You know, it’s such an empowering thing to do, as well.  When I was deciding on my treatment, my medicinal oncologist sent me on to have a conversation with a radiation oncologist to see if it was the right option.  Initially, it was kind of scary because I thought, well, aren’t you supposed to tell me what to do?  Then I realised that it’s such an empowering thing, of really looking at your options, talking to different specialists, then you make the decision about what’s going on in your treatment.  Sometimes with cancer treatment, you lose control of how things are.  Being in a position where you are the one makes a decision is a really good place to be in.

David:              Absolutely.  We are in a world now where patients want to make decisions, as I think they should.  I think 30 years ago, medicine was very paternalistic, and you were told, “Hey, this is what the recommendation is going to be, and this is what you need to do.” Patients were just expected to nod and listen.  I think people, in all walks of life, in all areas of society, people are much stronger advocates, which I think is very important.

Joe:                 Yes, absolutely.  Also, David, from personal experience and from speaking to lots of people who went through cancer, I know that often the worst time for a patient is when you’re waiting for results from a scan or a test.  It’s just really nerve-racking.  How do they take charge of that situation and what do you do there?

David:              That is a difficult situation, Joe.  The two most anxiety-provoking times are the times before treatment when you have a diagnosis of cancer, but you don’t know how it’s going to be treated, you don’t know how the treatment is going to go.  I find that’s a very anxious time.  The time right before a scan result, even in the days leading up to the scan, people will tend to start to lose sleep.  Then the scan is done and then you have a few days until you have it reported.  There really is no way to speed that up.

In some scenarios, like I said, if you have access to your chart, you can login and read the scan report, even before your appointment, the other way is really just making the most of that time, because let’s say you have the scan on Monday and the report is not going to be available for a few days and you meet your oncologist the next day, that time can’t be shortened.  I try to tell people to practice their mindfulness techniques, where they ground themselves and say, “Okay, the scan is just going to tell me what’s already going on, it’s better for me to know than not to know.

Then come what may, we will do our best.” Just because I’m having a scan doesn’t mean that we’re going to find something, because most of the time, I would say on average, a scan that is done in follow-up doesn’t show anything.  That might be a bit of anxiety that can never be fully eliminated.  Even I know people who have been out from treatment coming up to five years and the chances of being cured are already in the high 90 percent for some of these cancers.  Even then, the anxiety is there.  I don’t think we’ll ever fully get rid of it.  It’s more about trying to manage that.

Joe:                 Yes, absolutely.  Look, David, when you’re about to start treatment again, it’s also scary because you really don’t know what to expect.  How do you deal with that?  What advice do you have on that front?

David:              Yes, so I would say there are two things to keep in mind.  Often, people feel extremely rushed to get into treatment.  Sometimes there are delays and situations where things need to be really rushed, but for most patients, there is time to collect information and to make a decision that’s best for you.  The example of a man with an early-stage prostate cancer, there is certainly time to make a decision because for many men, even just doing surveillance is an option.  There’s really not a rush.  Some cancers present with more extreme life-threatening situations where something has to be done quickly.

A lot of times, there is the opportunity to sit and think and get the information and get your chart and make a good decision for yourself.  The other thing that can often be quite helpful during that time is speaking with somebody who has been through it.  Many cancer centres have programs where you can meet with some survivors who have been through the situation.  You may have some friends or family who have been through it.  Also, there’s an organisation, there are some organisations online that will connect you with somebody.

I’m not actually sure what’s available in Australia specifically, but there are, in Canada and the U.S., one is called the Cancer Hope Network and they will connect you with a survivor of your type of cancer.  If you have a lung cancer and you’re going through chemo and radiation, they’ll connect you with someone who’s been through there, through that to tell you what it’s going to be all about.  That I find can be quite helpful because then you can see what is on the horizon for you, hopefully.

Joe:                 Yes, no, David, it can make such a huge difference, that’s really great advice.  Really, in that case, you’re talking to someone who has been in your shoes, who potentially went through the treatment you’re about to go through right now and had to make similar sorts of decisions, had to deal with side-effects.  It’s really the best place to be when you’re combining the expertise of your medical specialist and your medical team with real-world experience of someone who’s been down that road before.

David:              Right, exactly.  Just knowing someone who’s been there can be very helpful.

Joe:                 Absolutely, David.  I know we’ve touched on this before, but how do you really find the right surgeon or the right hospital to do the operation, if that’s the route you’re going down?

David:              Yes, that’s a great question.  I think people have had the feeling in the past that medicine is a one-stop shop.  You go in, you meet a surgeon, or you meet a radiation doctor, and you go for it and you get what you get and you’re going to have good care.  We know that there is actually a lot of variation.  It’s not like craft dinner, where you can go to… I don’t know if they even sell craft dinner in Australia, but you go to the grocery store and you buy your pre-packaged dinner.  Whether you buy it in ones tore or another, or one country or another, it’s pretty much going to be the same product.  This is a lot different.

It’s more if you think about going to the same musician, where some might be fantastic, and some might not be quite so good.  There are a lot of tricks towards finding somebody who is quite good.  I go through some of these in my book, but one of the things that I think is very easy to ask about is whether you are seeing a high-volume doctor, and whether the cancer hospital you’re going to is a high-volume centre.  What I mean by that, being a high-volume centre, is a centre that treats your kind of cancer a lot.

Or a surgeon that does your type of operation a lot.  We know that across a whole bunch of different cancer surgeries, surgeons who do it a lot and hospitals that do it a lot get much better outcomes.  It’s just the idea of practice makes perfect.  It’s an example of this, in the U.S.  for example, if you are having your oesophagus taken out, which is your swallowing tube, your oesophagus for oesophagus cancer.  If you go to a high-volume surgeon, someone who’s doing it a lot, your chances of dying from that surgery, the chances of dying from that surgery are about eight percent, which is actually a fairly high risk.

It’s a significant risk.  We take that risk because that’s the way to cure the cancer.  In some patients who go through that surgery, they will be cured and live out the rest of their lives.  If you were to go to a low-volume surgeon, someone who’s not doing it very often, the risk of dying from the surgery is not eight percent, it’s about twenty-two percent.  The numbers go up dramatically just because of the expertise at the centre.  I think the one question you can ask your surgeon is, are you considered a high-volume surgeon for this kind of cancer?

If you don’t read the book and don’t read more about it and they say no, you can say, well is this a surgery where you think a high-volume surgeon would be important?  It seems to make a big different for the more complicated surgeries.  The more complicated the surgery, the riskier it is, the more that having a high-volume surgeon would really help.  It’s certainly a question you can ask very easily.

Joe:                 Yes, absolutely.  It’s such a staggering difference that it can make to your survival.  It’s really great that you can point out the difference that it can make and the things to look out for.  David, what’s your take on clinical trials?  How do you know if a clinical trial is the right option for you?

David:              Yes, clinical trials are incredibly important.  As part of my research, I run clinical trials, I can actually give you an example of a big impact that we’ve had with a clinical trial.  Basically, clinical trials are where all the new cutting-edge treatments are tested before they’re brought into mainstream.  A clinical trial is sort of like an experiment, it’s not that people are being treated like a guinea pig, that’s not the way it is at all.  What’s happening is, doctors think that they might have an improvement on treatment.  The clinical trial might be a way for you to get a treatment that doctors think will be better but haven’t yet proven it.

Sometimes you go on a clinical trial and you get a drug or a treatment that proves to be much better, so you’ve benefitted from going on the trial because you’ve got that new drug.  The other benefit of going on a trial is that you get I think much better care.  The reason why I think you get much better care is two things, one is that usually you have a trial coordinator who’s in touch with you or a trial nurse who’s in touch with you.  It serves as your point of contact.  When you have an issue with your care at all, your contact is this primary nurse or this trial coordinator.

It’s this inside track to getting help if you need it anywhere along the way.  A trial also gives a protocol for the doctors who are treating you.  For example, if I have a patient who goes on a clinical trial and I am treating their lung cancer and I’m designing their radiation, I will go through the protocol because they’ll be very specific instructions on how to design the radiation.  I think that’s helpful for physicians because it’s just another double-check to make sure that all the checks are being done properly.

If you’re lucky, you’ll go on a trial where the new treatment is quite beneficial.  We’ve seen that, for example, with the new advent of immunotherapy in the past five years, which has really changed the treatment of a lot of different cancers.  We didn’t know that it was going to change the treatment five years ago, it was only available on trials.  Some of the patients who went on these trials, they got this immunotherapy, we didn’t know if it was going to help, but many of those patients were helped.  You can see them in the news, these people who went on the first trials of immunotherapy for melanoma, for example, they had an incurable melanoma.

Then five years later, they’re still doing well because they got the immunotherapy.  These won’t all be blockbusters, but sometimes they are.  Even in the radiation world, we just presented a study this year, where we looked at using radiation to target metastasis.  Metastasis means that the cancer has spread.  We use the radiation to try to kill some sports of cancer that have spread, which normally you wouldn’t do.  What we found was that, I’ll just take a step back, we asked people, “Hey, do you want to go on this study?

If you go on this study, some of you are going to get this experimental radiation and some of you are not.  We don’t know for sure if it’s going to help.” Fast-forward now, what we found was that we pretty much doubled the number of people who are alive five years later by doing this radiation that was considered experimental.  Sometimes by going on a trial, you can really get access to a treatment that doctors think might be better.

Joe:                 That’s fantastic.  Tell me, what happens when you’re a patient and you’re deciding between the standard treatment and the clinical trial?  How do you make that decision?

David:              Yes, that’s a really good question.  Often, there are a couple of different situations.  Once situation is that there is standard treatment and then clinical trials are completely different.  They could be a completely different approach.  In that case, you really have to weigh the pros and cons.  Are you a person who wants to go with something that’s tried and true?  Or to take your chances on something that might be a bit more helpful, but that might come with a cost of a bit more time involved for you for being on the study.  Or maybe some side-effects that we don’t anticipate.

You have to look into yourself to see how that resonates with you.  Also, the other benefit of going on a trial, of course, is that it will help teach your patients.  Other trials, when you enter it, there are a couple of different treatments you might get, where you are assigned to a treatment at random.  A computer flips a coin and let’s say you either get the standard treatment or the experimental treatment.  You don’t choose, the doctor doesn’t choose.  Sometimes patients can feel, well, I want to choose, I don’t want a computer to choose for me.  What I say to patients is, rest assured, that the doctors are only trying this treatment in a clinical trial if they have good reason to believe that it’s going to be helpful.  Doing a trial for a physician costs years or decades of work and work that you don’t often get paid for doing a trial.

It’s just work that you’re doing because you really think that it’s going to help and it’s endless hours of paperwork and that sort of thing.  Doctors always go for trials that they really believe something is going to help.  I think that can eb reassuring that even if you can’t choose your treatment by going on a trial, the doctors who are designing the treatment in the trial really do think it’s going to help.  They don’t know that for sure, but they really do think that it’s going to help.

Joe:                 Yes, you make such a fantastic point, David.  This was actually one of the things that I love about oncology and just about everyone I’ve been through, my personal experience but also, of course, through my podcast and people are so passionate about getting the best outcomes possible for people.  Yes, like you say, a lot of people are doing clinical trials precisely because they want to get the best result possible.

David:              Yes, we want to do the best because our patients, many of them are also our friends or they’re family members or they’re us.  We really want to move things forward.  We’re never going to be happy with the status quo, no matter how much we move the bar, we’re always going to want to do better.  It’s interesting because people often ask me, why do I do cancer research?  Cancer research sometimes, you can spend your whole career doing cancer research and not really make a huge chance.  Sometimes experiments go well, something they don’t.  Sometimes trials go well, sometimes they don’t show a benefit.

What many of us think is that what we’re doing here is we’re stepping up to the plate.  We have our baseball bat, I know that cricket is probably bigger in Australia than it is baseball, but I’ll stick with the analogy, nonetheless, but it’s the same one.  You’re stepping to the plate and you have your bat, the ball is coming at you.  You’re going to swing, and that’s you research.  Sometimes you’ll swing, and you’ll have a hit and you’ll have a homerun, sometimes you will strike out.  At least what reassures many of us is that if we go to swing, if enough of us go to swing, we will have some hits.

We see some of the hits are small and proven.  Some of the hits like the immunotherapy are big improvements.  In the end, even going up and taking that swing is worth is because although it costs this extra time and it’s extra work, it really does, on the whole, make a difference for cancer patients.

Joe:                 Yes, that’s perfect, David.  Yes, that analogy totally checks out.   David, I love your book.  Tell me, how did it come about?

David:              Mostly, I do research.  I never thought that I would write a book for patients, but life takes you on these turns.  You never exactly know how things are going to go.  I guess, Joe, if I asked you decades ago, if you were going to be running this podcast about getting good cancer treatment, you’d probably would say, “No, I would never envision that.”  The way that my life went was that, my best friend, my best friend Bob, he was diagnosed with colon cancer.  That was five years ago.  Bob and I at the time were in our mid-30s.  Bob was a teacher.

When he was diagnosed, he had a best friend who was an oncologist, so I helped him make sure that he got the best treatment and he saw the best surgeons and that everything was looked after.  He got copies of his reports and he got copies of his scans.  We went through them all.  What Bob said to me at the time was that, “This was something that anybody could learn to do.  Not everybody has an oncologist as a close friend.” Even he, who is not in the medical profession, he’s a teacher, so he’s well-educated, but he didn’t have a medical background, he was able to do this kind of stuff.

What we realised was that people really needed a step-by-step book on how to do this.  There are lots of books about cancer, there are thousands and thousands of books about cancer.  As far as we know, this is the only one that talks about getting good-quality treatment.  Fast-forward a few years, there was actually a mistake made in his care where things weren’t done as they should.  Basically, what happened is that he was lost to follow-up.  Meaning, he was supposed to have been followed for a period of time and he wasn’t.  That unfortunately lead to a bad outcome.

We’ve lost Bob now, Bob has passed away.  In his last few years, he and I put this book together.  I would write a chapter and he would read it and say, “Dave, this is understandable, I understand this.  Dave, this needs to be reworked.” It really is a legacy for him, this book that will hopefully help other patients.

Joe:                 Wow, I’m sorry to hear about your friend, David.

David:              Yes, well, thank you, Joe, I appreciate that.

Joe:                 That’s such a really noble goal and it actually reads to me as a conversation, as a conversation you’d have with someone.

David:              Yes, that’s how it came about.  What I decided when I was writing the book, people are selling everything online.  You can go online and buy whatever you want.  People are selling IV vitamin C and almond seeds or apricot seeds, which we know don’t do anything.  People are making money off of it.  I didn’t want this to be seen as that.  Even though this is a commercially available book, all the royalties, instead of coming to me, they actually go directly to a cancer research charity in the city that I live in, which is called London.

None of the royalties comes to me.  That allows me to advocate for the book as much as possible.  Nobody will ever question as to whether there are financial motives, because obviously it’s all been done for charity.  I think that’s helped to convince people that my motives are good and I’m just doing this to try to help cancer patients.

Joe:                 Yes, that’s fantastic, David, good on you.  Thank you for what you do in the world.

David:              Yes, thank you.  Thanks for the call, Joe, it’s really been enjoyable chatting today.

Joe:                 Thank you so much, David.  Tell me, what’s the best way to find your book online?

David:              Yes, so it’s available on Amazon, that’s probably the easiest.  I don’t know all the Australian book stores.  We also have a website that goes with it.  The website is called: qualitycancertreatment.com.  That has many resources that are quite helpful.  It has some patient videos about how to decipher reports, how to keep track of your tests, how to keep track of your department, how to understand your radiation plan, how to find clinical trials.  Those videos are freely available, so people can find that on the website.  Again, which is, qualitycancertreatment.com.

Joe:                 Fantastic.  Thank you, David.

David:              Thanks very much.