Episode 001: Cancer Awareness Eradicates Guilt

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In this episode, I’m talking to medical oncologist David Pook from Melbourne, Australia. David treated my cancer and he has been incredibly positive and supportive throughout. In the interview with David we get to find out more about:

the biggest development in cancer treatment this decade
one of the most common misconceptions that people have around cancer
DNA testing and ethical challenges moving forward
psychological fallout from cancer diagnosis
the importance of regular exercise during treatment
when do get a second opinion
how cancer awareness eradicates guilt

Full Transcript

Joe: Hi, Dave. Thank you so much for doing this. I’ve been really looking forward to this. Please tell me about yourself. What do you do? What are you passionate about?

David: Well, thanks for inviting me on, Joe. I’m a medical oncologist with a special interest in GU cancers. That’s kidney, bladder, prostate and testicular cancers. I trained and obviously did a medical degree and then I did physician training, specialising in medical oncology. I actually went off and did a higher degree, actually, in colon cancer, different area. Still, learnt some skills about clinical trials and at the moment, I’ve got a mixed practice. I do roughly half private work, the other half public, working at Monash and I also spend a little bit of time at the university, as well, and I do a lot of clinical trials. My passion is probably looking at new treatments for cancers, trying to push the field forward and improve on where we are now.

Joe: Fantastic. What are some of the developments that are happening right now?

David: Well, I think the biggest development that most people would say of this decade is the immune therapies. The immune therapies, they give us huge possibilities and we’ve seen amazing results in cancers, like, melanomas. Like most things, they provide big challenges, as well, so there’s that potential to have amazing responses, and we’re seeing really nice responses in kidney cancers and in bladder cancers. The toxicity is hard to manage. We’re dealing with a whole load of new toxicities. This is a whole new way of treating cancer. It’s completely different to chemotherapy and to other treatments that we currently use.

Joe: If we think about opinions on cancer, and you mentioned the result is the different treatments and they’ve got new research coming out, in your experience, what are the most common misconceptions that people have around cancer?

David: I think the most common misconception is that it’s always preventable. A lot of people seem to come with a little sense of guilt, like, what have I done? What did I do wrong to get the cancer? Often, actually, in nearly all cases there’s no blame for a cancer. Some things you can do can increase the risk of cancer, for example, if you smoke, you’re going to increase the risk of certain cancers. A lot of cancers just come through pure bad luck. I think some people find that hard to deal with because it seems very unfair.

Joe: What about DNA and in terms of hereditary cancer, is there anything on that front, do you think, that people should be concerned about?

David: Not so much concerned about but I think we’re going to see huge changes in that area. I don’t now over which time period, I assume within the next one to two decades. The biggest thing we’ve seen is in the area of prostate cancer, where it turns out that maybe one in ten men diagnosed with prostate cancer have an underlying problem with DNA repair. That was a finding that was really unexpected. What’s made that possible, or that result possible is the fact that we are much better able to interrogate DNA now, looking for mutations. The first DNA repair defect was called BRCA-1. B-R-C-A. It stands for breast cancer, BRCA-1. Soon after that, came BRCA-2. Up until pretty recently, it cost you a couple of thousand dollars to test for one of those mutations. Then really within a few years, we can now test for 14 mutations at a cost of about $600.

Joe: That’s amazing.

David: I think it’s a bit like computing. As we see the ability, or the power of computers increase, at the same time, the cost goes down. We’re seeing the same sort of phenomenon with some of these DNA testing techniques. I don’t think it’s beyond the realm that DNA testing is going to become a lot more common. It might be common for everyone. Everyone might be tested. From that, we might be able to design a better risk profile. Rather than trying to screen everyone for a particular cancer, we might be able to group people a little better and say, “What you need more intensive screening for prostate cancer, whereas, you might not.” Again, that’s going to provide a whole load of challenges, as well. You’re walking around knowing that you might have some sort of genetic defect. There’s always that downside as well as the positive.

Joe: Yes, because I guess it weighs heavy on your mind.

David: Yes, you’ve got to get life insurance. At the moment, we have genetic counsellors who have to talk to people about things like that. If we find a gene, you’ve got to disclose that to a life insurance company. You can’t just pretend you don’t know, you have to actually tell them. Them what’s the law around, are they allowed to discriminate against you based on that? If you’ve got a certain gene, can they refuse to offer you insurance? There are all of these factors and issues that need to be thought about before doing this sort of testing. I think it’s going to change a lot. I think that’ll be one area where, even cancers now, where when we say, “Look, there’s no genetic link…” I’m not sure that ten/twenty years from now, as we test more and more genes, we don’t start to find some of these links.

Joe: Of course. You’ve talked about immunotherapy and in terms of other areas, what are some of the biggest changes that are happening in the medical world, in the world of all the senses, supporting oncology? What are some of the biggest changes that are happening in terms of dealing with cancer?

David: I think the big thing now is that the pharmaceutical companies are better able to design drugs. The biggest change we’ve had this century, probably pre-2000, say, was that the way to discover a drug was to dig around and discover a chemical and then try and find a use for that chemical. A lot of those chemotherapy drugs are really natural type products. They’re isolated from bacteria or leaves or certain organisms, and they’ve been modified by the companies, but a lot of those chemotherapy agents were naturally occurring substances to begin with. Whereas, now, it’s changed, what the whole thing is done in a completely different way.

Which is probably more rational, which is to try and understand what drives the cancer and then find out which protein, what’s the defect? What’s pushing this cancer along? Then asking a pharmaceutical company to design a drug to block that particular protein. We’ve seen that, we’ve seen designer drugs, like a drug called Enzalutamide, for example, in prostate cancer. They knew that they needed to block something called the androgen receptor, which is where testosterone signals, in prostate cancer and drives the cancer. They designed a drug to block that cancer better than it had every been blocked before. That drug makes a huge difference in prostate cancer.

Joe: It’s fascinating the research that you do. Researchers, like yourself, work closely with pharmaceutical companies, is that what happens?

David: Yes, a lot of what we do are clinical trials. Now, some of those are designed and funding by pharmaceutical companies. Some of them are funded by clinicians with the support of companies. We do both. I’m also a member of an Australian trial group, ANSUP, which is an Australian trials group, which will do both. Which will help design non-pharma studies. There’s a testicular study, looking at how to deal with the anxiety of the diagnosis, which is completely non-pharma. There are also large prostate studies that are run through a trial group like that, it’s an independent group. At the same time, pharmaceutical companies will approach the hospitals directly and then will run pharmaceutical trials, as well. the advantage of that, though, is that we can give, or we can gain access to new drugs for patients before they’re approved.

Joe: Yes, that’s fantastic. Speaking on the mental side of cancer, you obviously deal with many patients who are facing cancer right now, what do you think are the biggest challenges for someone who has just found out they’ve got cancer? Who is facing the diagnosis? What are they going through, in terms of their everyday life?

David: I sometimes think you could answer this better than me, because you’ve been there.

Joe: Absolutely.

David: From my point of view, I think you’ve got to deal with the psychological effects. I think you’ve got to be aware that a cancer diagnosis is like a death in the family. It’s going to have the same psychological fallout. You’re going to go through those stages of grief. It takes time to deal with it. I think some people just need time to come to terms with what’s going on. Then the next thing is health. Then, you know, the therapies we use are toxic therapies. How do you maintain your health dealing with the side-effects of what we do to your body to treat your cancer?

I think that’s a challenge, as well. With those toxic therapies, there’s obviously the challenge of work. How do you work through this? Then the other aspect would be your relationships with your partner, your children, while you’re going through all of this stress, how do you make time to work on your relationships and make sure you’ve got that support around you, as well? It’s a big challenge.

Joe: Absolutely. Do you think that most people are open about having those challenges? Do they talk to their friends? Do they talk to their family? Are they open to talking about cancer and how it just plays on your mind and everything to do with that?

David: I think it’s improving. I think the work done by the prostate cancer foundation of Australia and Movember, I think have improved things. I think initially women and men dealt with cancers quite differently. I think breast cancer, people really did talk about breast cancer all of the time. Yet, we had prostate cancer, which is a similar number of people diagnosed, similar effect on people’s health. It wasn’t really talked about as much. I think that has been a difference between men and women. I think it’s improving. I think that men feel they can talk about this stuff a little bit more. I think people vary a lot. Some people really are very private, they’re very worried about the outward signs of being diagnosed.

Give chemotherapy and you lose your hair, that tells everyone what’s going on. Some people, that’s a big problem. Especially people that are working or they’re in management roles, that can be hard. Some people just don’t want to deal with the hassle of telling everyone they know. if you don’t have any hair, then you’re going to get questions, people are going to say, “What’s going on?” Some people don’t want to deal with that, they find that difficult. Most people I see, they seem pretty open with their partners. If they come in with their partners, they are normally pretty open with them. Sometimes, the intimacy stuff and other things, I think some people find really difficult.

Joe: Yes, absolutely. What about survivorships, because I guess it’s a very different reality? I know that getting regular check-ups, especially when you get closer to the appointment and you’re doing your tests, and you’re thinking, and you’re worried about whether the cancer is going to come back. Do you think that presents a completely different challenge for people, as well?

David: Yes, and a lot of research has been done into survivorship. How to live post-diagnosis and treatment of cancer? It’s well-known that’s it’s hugely stressful. I probably didn’t realise that when I first started. Chatting about the weather and stuff with a testicular cancer patient, who’s waiting for their results isn’t a good idea. I think it’s sometimes the awareness on behalf of the doctor, that how stressful it actually is. You’re normally opening with, it’s fine, the tests are fine. Just having that awareness that people really are – it’s obviously going to provoke a lot of anxiety. There are huge implications based upon one little line of a test result. It’s normal, it seems to improve with time. ANSUP did do a study looking at anxiety levels in testicular cancer patients, after they’ve had treatment and when they were being followed. You did see those anxiety levels improve.

Joe: Yes, absolutely. Yes, because cancer is tough to deal with mentally because you’re constantly between your treatments or you’re waiting for results and word from your specialist. Do you think it’s okay for people to just get angry, get frustrated, get pissed off, because they don’t know how to deal with it all, mentally? I guess, how can you turn that around to be more positive?

David: I think so, I think – I’m not a psychologist – but I think that most experts will say that you actually need to experience emotions. I don’t think you can try to be relentlessly positive when you’re not feeling positive, I don’t think’s going to work. I know there’s always that image of the positive person fighting the cancer with their boxing gloves on.

Joe: It’s not real.

David: I don’t think the reality is like that at all. I don’t think people die of cancers because they didn’t fight hard enough, or they weren’t positive enough. I think a lot of this is out of our control, the clinicians, as well as the patients. I think sometimes despite the fact that everything’s done properly, the cancer doesn’t respond to the treatment the way we would have hoped. I think these emotions are all normal. I think that emotions have to be experienced. I suppose it’s just knowing that there’s a lot of support out there, if required. If you are feeling angry or frustrated, that’s okay. if you’re really feeling depressed and really concerned that these emotions are becoming too much, or something that you can’t handle, that there’s a whole support network out there.

The Cancer Counsel is a good start. They can get you to talk with people who have been through cancer treatments and cancer diagnosis and just talking to someone that’s been through it can be helpful. Or, you may need professional help. Psychologists can talk about mindfulness and other techniques to deal with these strong feelings. Occasionally, some people need the anti-depressants and other medications if they really become depressed because of the strain.

Joe: Yes, you mentioned stereotypes. That’s definitely still there, but hopefully that’s changing. The stereotypes, like you mentioned, about fighting the cancer, or that people who are survivors, they’re portrayed as heroes. I guess some of those stereotypes are changing, aren’t they?

David: Yes. I don’t know, I think it’s probably like that a lot in life. I think that there are things that we can control and then there are things that are just completely beyond your control. I think that if you’ve been diagnosed with cancer, you’ve got control over some of it. You can keep fit and you can try and eat well and get enough sleep, everything that you’ve been advised to do. You can turn up to the hospital if you get a fever, like you’ve been asked. You’ve got control over those things, but there are other aspects where you don’t have any control over it. Yes, I think some people seem to really portray – I don’t like that. I’m not sure I’m thrilled with that fighting cancer with the boxing gloves-type analogy. I just don’t think it’s like that, because the connotation then is that if you die from cancer, you just didn’t fight hard enough. It’s just not true.

Joe: It’s not fair.

David: It’s not fair, it’s not true and there’s guilt involved, as well. The people that I’ve seen who have died of cancer, it’s not through lack of will.

Joe: Absolutely. Is there anything that you recommend for someone to stay in good shape, mentally, physically, what would someone do?

David: Look, I think exercise is really important. Especially people who are going through chemotherapy, or hormone therapies for the cancers, it seems to really help the fatigue. We’re lucky enough to have experts now who can design or tailor exercise programs for people with cancer. They’re called exercise physiologists and they’re university trained, and they also often have done further degrees or further training with cancer. I’ve seen amazing results, especially with men who are having hormone therapy for prostate cancer, for example. I’ve seen huge differences in how people feel, just by attending regular exercise. There’s even some evidence that maybe it’s got an effect on the cancer. It’s too early to say, but there are a few downsides. It seems like a very positive thing that people can do, and it’s something where you feel like you’re doing something positive.

Joe: Yes. You definitely have given me advice to do daily walks. I have to say, it’s been fantastic for me during chemo, and I’ve keep this habit up until now. I hope I keep doing it. It’s really helped me, even when my head was in a fog and I was just feeling really crap. I still would go, and do it and it made me feel better. Definitely, I can’t say enough good things about it.

David: Well, I think it’s also go mental effects, as well, maybe you don’t feel the same as me, but if you do some exercise, that’s often when you go through things in your head and just doing that, I seem to get rid of feelings of anxiety and frustration and other things by doing something physical. I think it’s got mental effects, as well, I’m sure it has.

Joe: I can’t believe, looking at you, Dave, I can’t believe that you have anxiety. We’ve talked about that you’ve seen a lot of people who are battling cancer, is there something that people tend to overlook, something that could help them deal with it better?

David: Yes, we talked a bit about that it’s not a fight and being out of control, some things you can control, some things you can’t. I suppose the other aspect is just being aware of anxiety, being aware of what it is. It’s not obvious sometimes. Through people that you’ve met, anxiety comes out in different ways. People express anxiety in different ways. I suppose it’s just being aware of anxiety and what you’re like when you’re anxious. Do you sweat? Does your heartrate go up? Do you shout at people? Calling it what it is, and if it’s anxiety, looking at ways to manage that. Obviously, cancer treatment, cancer diagnosis is a huge source of anxiety. I think managing that anxiety is incredibly important and can often be overlooked.

Joe: I guess what really helped me was really talking to my wife, talking to my family, talking to my friends about it. It wasn’t easy at first but as I started to open up and talk about being angry or scared, I realised that it’s okay and it really helped me to deal with it myself. If that makes sense?

David: Yes, it seems to be, I don’t know why, if you name an emotion, it seems to help. If you can actually work out what the emotion is, “I’m anxious”, it actually seems to help because you’re like, “Is that what it is?” That’s something, obviously, as a psychologist, my wife’s a psychologist, so she knows a lot more about it than I do. That’s something that psychologists are very good with this mindfulness that they talk about. It’s just that ability to recognise feelings and thoughts and let them out. Not try and bottle them up, not try and supress them or fight them.

Joe: Has there been any research done that you know of in terms of mindfulness and cancer?

David: Not that I know of, I’m sure that there has, not that I know of. I know there’s been research done into trauma, other types of trauma, so war veterans and other groups. I’m sure that they’ll be similar types of trauma experience by people who have been through medical diagnosis and medical treatment. I know that there are mindfulness techniques that are shown to be very effective in those groups.

Joe: Yes, that’s really interesting. That’s something that’s definitely worth looking into. I guess with anxiety, if sometimes people feel that they want to get a second opinion, do you think that they should do that to seek advice of someone else? If so, what is the best way to go about it?

David: I think you can always ask for a second opinion, if you want. Most medical oncologists in Australia, anyway, are very well-trained. You should be getting pretty consistent messages across different groups. It’d be interesting to ask whether or not your case had been discussed in a multi-disciplinary meeting. That means that each case is put in front of a panel, so a number of medical oncologists, surgeons, radiation oncologists, the radiology is check, the pathology is checked. Most large, definitely large teaching hospitals, large private hospitals, will have meetings like this, where each case is discussed. I think that’s probably useful to know whether that’s happened. Then you know that your doctor already has got the opinion of a panel.

If that hasn’t happened in a smaller hospital or it hasn’t happened, I don’t think most doctors would be too upset with you saying, “Look, I would just like to ask for a second opinion” and I’d be upfront about it. It’s not a massive community, obviously. We all know each other. Most doctors I don’t think will be particularly upset, if you said, “Look, I’d just like to get a second opinion, just to check.” You should be getting consistency across the two. That’s what you want to get. You don’t want to get a radically different second opinion. Otherwise, you’re left saying, “Well, what’s going on here?” The idea of getting one is that you get the second doctor to say exactly the same as the first. You go, “Great. Okay. This is the right treatment.”

Joe: Yes, because I’ve that, in terms of other communities that perhaps people are not exploring enough, for online communities, I’ve seen people who frequently show up and put up a topic that says, “I’m scared that I may not be getting the right answers. Who can I talk to?” I’ve definitely seen online that some people have those concerns. It’s great that the people can ask for that second opinion and just know that they can get it confirmed and they don’t have to worry about it. Absolutely. If someone wanted to reach out and get in touch with the services that you provide, or just wanted to get help, what would you recommend?

David: I think the first step would be the cancer counsel, you know, there are cancer counsels in each state. They’ve got an excellent website and they’ve normally got links to a whole load of different resources. There are also some disease-specific groups. If you have prostate cancer, for example, the prostate cancer foundation of Australia is on Movember. Movember now is also starting to provide support for men with testicular cancer. Kidney cancer, looking at kidney health Australia. Yes, there are a number of places where you can seek help. Obviously, your treating doctor through the hospital should have access to psychology, dietitians, exercise, physiology. All of these should be available through most health services, as well.

Joe: Cool, fantastic. Thank you so much for your time today. It was a real pleasure.

David: Pleasure. Thank you very much.