Beyond the Cancer Diagnosis: Dialogue with Prof. Sophie Lebel, Hosted by Adrian Pogacian

Adrian Pogacian: Today, my guest is Professor Sophie Labelle. Hello, Professor Lebel. Thank you very much for accepting my invitation.

Sophie Lebel: Thank you. It’s a pleasure to be here.

Adrian Pogacian: Today’s subject is about fear of recurrence, or as I named it, coping with fear or fear within coping. Yes. Professor Labelle, you are one of the leading experts in the field of psychoncology.

How do you define fear of recurrence outside the classical definitions from the manuals?

Sophie Lebel: Yes, so we got experts together in 2015 in Ottawa to establish such a definition, because before then we didn’t have a formal definition that scientists had agreed on. So, there were two or three definitions that were most commonly used. But since that meeting in 2015 and a publication that came out in 2016, the official definition that most people use is a fear of cancer recurrence is defined as a fear, worry, or concern that cancer will come back or progress.

That part, the last part, is important because the scientists that were there, the trainees, and we had two patient representatives felt that we needed a definition that included both people who are considered without evidence of disease, so they finished their treatments of, let’s say, radiation chemotherapy, and they’re told right now there’s no signs of cancer, and also include people that still have cancer. Some have methodological cancer, some brain cancers, for example, where the cancer is still present, but it might be very slow-growing, almost dormant, but it’s, they nonetheless always have cancer.

What they’re afraid of is that the cancer will progress, worsen, and that their state will get worse.

Adrian Pogacian: Okay, you mentioned also the progress work. Reading the materials or the definitions, we often see fear of recurrence or fear of progression, and especially, let’s say, in Europe, psychologists, sometimes it seems that put the equal sign between them, some of them, some of them are treated different. Is the same thing, or there are two separate concepts?

Sophie Lebel: That’s a very good question. I think from a scientific perspective, there are starting to be a few papers that have directly examined the question by giving a fear of cancer recurrence measure and a fear of progression measure to samples of women with ovarian cancer, where both constructs might apply. And these papers, many of them coming from a colleague in Australia named Louise, Dr. Louise Sharp, show subtle, very subtle differences in terms of strength, magnitude of relationship between certain constructs, slight differences. But to me, they’re very small differences.

I am not myself yet convinced that for the majority of patients, that they can make the distinction between fear of cancer recurrence, when we define it this way, versus fear of progression. I think for patients, it’s probably very similar.

I think we need to collect more data on patients to know if the experience of fear of progression is different from the experience of fear of recurrence. So clinically speaking, is it different if, let’s say, you’re a woman with breast cancer, you were diagnosed at stage 2, you’re told that there’s a very high chance that you will never experience a recurrence. But nonetheless, this woman has these fears that come and may impact her life very severely, versus, let’s say, you’re also a woman, but you’ve been diagnosed now with stage 3 lung cancer or stage 4 lung cancer, and you always will have cancer, and you know the statistics are that your cancer will progress.

You might be on treatments that slow down any progression or stop any progression, but this might not last, and you don’t know until when your treatments will work. So that’s fear of progression. We’re not sure if it’s different, and if it needs a different kind of intervention than fear of cancer occurrence in people who have no cancer.

Adrian Pogacian: It depends, in my opinion, very much on the patient, on how he or she feels, and I’m certain that fighting cancer, even if we talk about fear of recurrence, fear of progression, means fighting, and it depends a lot on the, let’s say, willing of the patient to survive. As you mentioned, we need more studies to see exactly, and depends very much on the, of course, of the region that we are talking about, the historical and cultural regarding cancer care, because I’m saying again, in Eastern Europe, when cancer care is at the beginning, we have now started with this concept of fear of recurrence, fear of progression.

Patients don’t understand, so it is a process that takes time, and you mentioned that the first definition is in 2015, so they are not even 10 years, so everything is at the beginning, which is also a good sign.

That means that we can improve a lot in the areas that are at the beginning with the research.

Sophie Lebel: Yes, and I can give a scoop to your listeners, to your membership. We will have a similar meeting at IPOLS, our International Psycho-Oncology Society meeting in Maastricht. We will have a meeting of people who work on fear of progression, so who study these concepts, but in people with advanced or metastatic cancer, where the term progression really applies.

So we will try to go through a similar process to define more precisely the construct of fear of progression and models and therapy that might help with fear of progression and discuss whether it’s different than fear of cancer recurrence. So in September, we will try to make good progress, and these are efforts that are led by Dr. Jose Kosters from the Radboud University in the Netherlands.

Adrian Pogacian: So it will be very interesting, the outcome of this workshop, and we’ll see how it will go. Talking about fear of recurrence, I know that you’ve developed fear of recurrence therapy. Would you develop for our audience the idea behind this concept and what you intend to do?

Sophie Lebel: Yes, yes. So when I started this work together with my colleague Christine, Dr. Christine Maier from McGill University, Montreal, we were both postdoctoral fellows at the largest cancer center in Canada called the Princess Margaret Cancer Center, and we were dealing clinically with patients who presented with fear of cancer recurrence, but at the time there were no published trials yet on how to help cancer patients. There was work starting with Dr. Peter Hirschbach in Germany, but that had yet to be published or was it wasn’t well known yet. So there were no interventions to help with this obviously very common concern.

So Dr. Maier and I sat together and thought about what could help patients, what would be an intervention. So she comes from a background in nursing, I come from a background in clinical psychology, so we combined different theories that we thought were relevant. So a theory, for example, called Michel’s theory of uncertainty and illness, which looks at things like is the illness or the treatment unpredictable, uncertain, difficult to understand, and of course cancer is all those things.

We looked at models of worries, we looked at how people understand triggers and coping that might not be helpful, and I know we’ll talk about that later, and we put that together and we wanted to create a group intervention. We felt that patients would benefit from sharing with each other their fears and knowing that they’re not alone. So for us it was important that it was a group intervention and we wanted something brief so that it could be easily adaptable and interesting for cancer centers.

So FORTH, or fear of recurrence therapy, is a six-session group intervention and the overall approach is what we call cognitive existential. So cognitive stands for the cognitive behavioral therapy part, so we very much have tools like cognitive restructuring, some mindfulness, some relaxation techniques, so we have some psychoeducation components to it. So there’s a very cognitive practical approach to FORTH, and then there’s an existential approach.

So existentialism looks at fear of dying, fear of suffering, fear of being alone, fear of meaninglessness, and we openly talk about those things and we try to instill in patients the will, the desire, the belief that they can talk about these fears, that they can face these fears, and that by doing so they can lead a more focused and meaningful life on what’s important to them. And I think the existential part is really important because we’re not talking about fears that are irrational. It’s not irrational for a cancer patient to be afraid that the cancer will come back or progress.

It’s very normal. Most cancer patients have these fears to various degrees, so we wanted an approach that would recognize the realness of those fears. So the existential approach with us, the cognitive existential approach, seemed to be the best blend.

And since we sort of created that in 2009-2010, we pilot tested it, then we had a large randomized control trial, a smaller one for an individual version, and now what we’re doing is we are implementing FORTH. So we’re going through an implementation study to bring it to five different Canadian cancer centers and study the process of what it takes to convince cancer centers to take an evidence-based approach, in this case FORTH, and offer it. What are the barriers?

What helps? What do clinicians need? What do decision makers need?

And we are going to test FORTH in a more clinical environment. There are cancer centers around the world that are adapting it to different cultures and that are offering it without a scientific study, but we’re doing the scientific study of what it’s like to bring it to a clinical practice.

Adrian Pogacian: You mentioned that this therapy is cognitive approach. Cognitive approach is one of the two pillars of coping theory from Dr. Lazarus. Coping is a very important concept also in survival shifts and especially during the disease.

In this case of fear of recurrence, can you name three main coping strategies?

Sophie Lebel: Yes. I think when it comes to coping, one of the first lessons I learned when I was a PhD student and I was starting to work with cancer patients, my clinical supervisor highlighted the importance of flexibility. No matter what coping strategy is your favorite, as a cancer patient, let’s say you were very good at planning and organizing and you were a very structured person and maybe this was part of your work, but now you come to a cancer center and you cannot have the same level of control.

My supervisor would say it’s important that patients learn to be flexible. I would say that’s the number one thing I look for as a clinician. Are people able to use different strategies?

I’ll tell you some that I think are great and some that are not so helpful. Some that are great is being able to talk about it. Being able to tolerate the emotions when they come, being able to talk about it with a professional or with a support group or with family friends.

I think that is important. Being able to accept that this is what’s happening right now. Acceptance shows up as a positive coping strategy.

In terms of coping strategies that don’t help, there’s quite a bit of research that shows that avoidance, either mental avoidance, which often presents as distraction, keeping oneself very busy from morning until night. Distraction avoidance is probably the most common and problematic one. There’s evidence that some people will avoid medical follow-ups, going to the hospital.

We don’t see a lot of that in the patients that come for studies, maybe because they avoid us. But that kind of behavioral avoidance would also be problematic. Then we have people who do excessive reassurance seeking.

For example, they’ll spend time on Google looking at different symptoms and then different medication and then different clinical trials. I’ve worked with people that have done this for hours a day. Or they will check for different body parts and they’ll do that every single day, sometimes also more than once a day.

Clearly, this is not a helpful coping strategy either.

Adrian Pogacian: As we name it, Dr. Google.

Sophie Lebel: Yes, Dr. Google. What I like working with this topic is most patients know when I ask them about Dr. Google, they know that it’s not a good idea. I think everyone has had the experience of Googling something and then you’re like, oh my God, this is really bad.

Then you look and then it’s worse and worse. So most of them know, but it’s hard for them to stop. So we help them develop other strategies that they can use instead when they feel the anxiety.

Adrian Pogacian: And what’s your opinion about positive thinking? Because in terms of coping, this is one of the most, let’s say, there are a lot of talks about positive thinking and denial. It’s a good or it’s bad coping strategies.

Sophie Lebel: The idea for me of flexibility here would be key in the sense that it’s okay sometimes to want to think positive. It’s okay to have hope. Certainly we need hope.

But I think I would wish for my patients to have some flexibility to also have the hard conversations, to also do the hard things like making a will or planning for what their wishes are at the hospital. So I want them to have the hard conversations. I want them to face reality.

I also want them to learn to tolerate the negative emotions because sometimes we have great days, that’s wonderful, but they will not last. Similarly, sometimes we have very bad days, but those will not last either. So I want my patients to be able to tolerate that and not feel forced that they always have to be positive because that’s impossible and that’s putting an enormous amount of pressure on oneself and it will actually impede people from benefiting from those good days and hope.

So some flexibility there for sure.

Adrian Pogacian: That’s the main problem of a cancer patient because this oscillant sinusoidal life.

Sophie Lebel: Yes, yes, yes.

Adrian Pogacian: Now I’m good without reasons, then I’m bad without reasons, so without explanation. So we have to help them find the flexibility and to be equal in desires and in needs. And talking about desire and needs and Dr. Google, as we mentioned, Franz Kafka once said that believing in something that does not exist, we create it. Is there the case of cancer patients that, let’s say, they create themselves this recurrence even though statistically it doesn’t exist?

Sophie Lebel: Okay, as I was preparing for this question, I thought more. For some people, they live as if the recurrence had already happened. We once had a woman in a group say, you know, she realized she had worried so much about having a recurrence that it’s almost as if the recurrence had happened every day.

So that’s what I was thinking. But yes, of course, the others, what you’re mentioning, many cancer patients are afraid that by having negative thoughts or that by thinking about recurrence or talking about recurrence, they’re going to make it happen. And so we gently question this for almost like magical thinking.

So I tell them, you know, I’m going to think I’m going to be a millionaire tomorrow. I’m going to be a millionaire. I’m going to really think about it.

Unfortunately, that’s not going to make it happen. Right. So, but we have, we all have thoughts and beliefs around what our thoughts can do.

And that’s one of the beliefs around worry. Some people believe that if I worry, I will make something happen. So we have to address those beliefs as well that are very common that people are afraid.

But then then they are not only suffering, but then they become afraid of their suffering. So they add another layer of suffering to their suffering.

Adrian Pogacian: So, yeah, they hurt themselves, let’s say, more or less in terms of physical, psychological issues. And how can we interfere here except fear of recurrence therapy? Which other therapies do you think are useful for cancer patients?

Sophie Lebel: So there are many therapies that have been published in the past 10, 15 years. It’s amazing to see the amount of efforts that have been done. One that I really like comes from Australia, the Conquer Fear work that’s been done, led by Phyllis Butow.

And now we have I Conquer Fear an online version done by Dr. Ben Smith. I’m a very big fan of this work, a beautiful randomized control trial that showed really great results. And what I like about them is that similar to FORT, we share the belief that science is meant to be disseminated and science is meant to be, and resources are meant to be accessible for free.

So all of their material is available online, downloadable, available. They have offered training as well. So Conquer Fear was originally developed as a one-on-one intervention that takes into account the unique characteristics of the patient.

Also have some cognitive behavioral therapy and some acceptance elements. So I would say that’s an excellent resource as well. So it really depends on if people are interested in group, one-on-one, blended, if they prefer more ACT approach, mindfulness, all of these things seem to work well.

I would say, you know, see what the clinicians already know and are most comfortable with in terms of a theoretical approach, what works within their cancer center. And now meta-analyses show that brief interventions of about six to seven sessions are going to work. So it’s a really matter of also being able to access a manual, access some training, and then being able to offer an evidence-based intervention.

So the wonderful news is that compared to when I started, there is now so much more that’s available where people can really pick up material and help cancer patients.

Adrian Pogacian: It depends on us as clinicians to choose, to have the desire, and to choose and then help the cancer patient. And according with this, in addition, I had an interview with Professor Breitbart nowadays, and he said the same thing. You just have to work with the patient.

We just have to have the desire to work with many, many patients and to choose to find, there are solutions for everyone. You just have to work and to find that solution. And since we are at the almost ending of our interview, I have one more question, if you allow me.

I saw that one of your fields of interest is stigma in cancer care. And this concept, it’s more and more accurate nowadays when we see a lot of conflicts and a lot of tension in the international relations. Can you give us more information about what represents stigma in cancer care?

Sophie Lebel: Yes. So stigma can have different forms. It could be discrimination.

So obvious stigma, for example, we could think of cancer patients that would be denied a job or their return to work would be denied, or maybe friends distance themselves. So there can be obvious discrimination. There could be also self stigma.

I feel bad. I feel like I’m less worthy as a person. I’m tainted.

I’m different. I’m to be blamed. So I studied that in a Canadian context.

And what was the good news in the Canadian context is that for most cancer patients, not taking into account cultural groups, minority groups, because I’ll get back to that in a second. But for several cancers, when we had looked at them in Canada, there isn’t a ton of stigma right now. But compared to 20, 30 years ago, I think stigma has evolved a lot, at least in some countries around some cancers like breast cancer, for a lot of people.

However, we had done one study and a systematic review looking at cancers where there might be a bit more stigma. And those are cancers where there is blame or self blame that can be attributed. So these are cancers where there’s a cause, a known cause, for example, think of lung cancer and smoking.

That is one where I think there is still stigma present, even in our Canadian context. Now, that being said, even within, I guess, a North American context, we need to understand better the stigma associated with cancer across different segments of the population. In Canada, for example, we know very little about what Black Canadians think around cancer, what kinds of services they need.

But the little few studies that have been done to date show that stigma is an important barrier, a barrier of access to care, a barrier of sharing within your community. So stigma may exist more strongly in some minoritized groups in Western countries, and this has not been studied super well. So I think that our beliefs, we saw that with Latina women also, that there might be some particular cultural beliefs that increase stigma and then make it difficult because in a lot of minoritized groups, your social support comes from your community.

But if you have cancer and you feel this is a stigmatized condition, you can’t reach to people in your community, so you end up feeling very alone and isolated. So there’s still a lot of work to be done around this particular topic.

Adrian Pogacian: Thank you very much, Professor Lebel, for your time, for your answers and for clarifications regarding fear of recurrence, one of the most interesting topics now and in the nearest future. Thank you very much and it was nice to have you with us. Thank you.

Sophie Lebel: Thank you so much.

Previous editions of “Beyond The Cancer Diagnosis”

Edition 1: Beyond The Cancer Diagnosis: Psycho-Oncological Aspects Of Kate Middleton’s Diagnosis

Edition 2: Beyond The Cancer Diagnosis with Sonia Amin Thomas – Survivorship

Edition 3: Beyond The Cancer Diagnosis: Dialogue with Wendy Lam, Hosted By Adrian Pogacian

Edition 4: Beyond The Cancer Diagnosis: Dialogue with Camille Moses, Hosted By Adrian Pogacian

Edition 5: Beyond The Cancer Diagnosis: Dialogue with Tihana Gašpert, Hosted By Adrian Pogacian

Edition 6: Beyond The Cancer Diagnosis: Dialogue with Amanda Balakirsky, Hosted By Adrian Pogacian

Edition 7: Beyond The Cancer Diagnosis: Dialogue with William Breitbart, Hosted By Adrian Pogacian

Edition 8: Beyond The Cancer Diagnosis: Dialogue with Alberto Costa, Hosted By Adrian Pogacian

Edition 9: Beyond The Cancer Diagnosis: Dialogue with Sonia Amin Thomas, Hosted By Adrian Pogacian