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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:
- How diagnosis can change the way you see yourself
- Evidence that psychological stress does not cause cancer
- The impact of mindset on survivorship
- Social factors that play a huge role in our approach to treatment
- Dealing with 3 major late effects that come with cancer
- The need to treat cancer as a collective disease
- and much, much more!
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…?
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?
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.
Joe: Thank you so much.
Christoffer: Okay. It was a pleasure, Joe. Take care down there, right?
Joe: Yes, absolutely. You too.