Understanding Pain Through Lived Experience

Childhood cancer changes the pain experience for survivors and parents.

Childhood cancer changes the pain experience for survivors and parents. Image credit: Katarzyna Białasiewicz/123RF Stock Photo.

Editor’s note: Perri Tutelman is a graduate student in clinical psychology at Dalhousie University in Halifax, Nova Scotia, Canada. She is studying pain in children with cancer and in survivors of childhood cancer. Maya Stern is a survivor of childhood cancer from Toronto, who also lived through a heart transplant and a second diagnosis of cancer as a young adult. Stern now works as a patient partner to help guide the work of Tutelman and other researchers. In this RELIEF interview, freelance writer Stephani Sutherland spoke with Tutelman and Stern about the goals of their research, how cancer changes the ways survivors and their parents experience pain, and much more. Below is an edited transcript of their conversation.

How did you get interested in studying pain in kids with cancer?

Perri Tutelman: Parents and children frequently report that pain is one of the most common and distressing symptoms associated with a cancer diagnosis, but pain has actually been relatively understudied compared to other cancer symptoms. So we wanted to get a better understanding of what the pain experience is like in the setting of cancer. We did an initial study where we created an online survey for parents of children with cancer, and over 200 parents completed it.

We found that, on average, while children undergoing cancer treatment experienced clinically significant levels of pain, children who had completed cancer treatment still had clinically significant levels of pain, meaning that their pain interfered with everyday life functions and required pain management. We were surprised to see that, so that got us interested in the survivorship period and getting a better understanding of what’s making pain continue.

In your more recent research, you used a technique called qualitative research. What is qualitative research, and why did you choose to use it instead of a more traditional quantitative study?

Perri Tutelman: Qualitative research is a scientific method, and it’s often used to gain more in-depth understanding of people’s experiences and perspectives. In qualitative research, the data can take many different forms, like interviews, art or case studies. While quantitative research is generally focused on collecting data in the form of numbers and making measurements, qualitative research is all about gaining detailed understandings of experiences or processes.

Perri Tutelman

Perri Tutelman

Qualitative research is particularly helpful in new areas of research where we don’t know a lot and where we can really get insight into people’s experiences. Pain is a subjective and personal experience unique to each person, and is influenced by so many different factors, including social, cognitive and biological factors. This can make it hard to capture the complexity of the pain experience by simply distilling it down to numbers. A lot of patients with chronic pain will say that a 0 to 10 scale to rate the intensity of their pain doesn’t really capture their experience.

There’s so much value in understanding people’s insights and stories, how they got to where they are and how they’re interpreting their pain. It’s not to say that quantitative research isn’t valuable—it’s vitally important to advancing our understanding of pain—and it’s not that qualitative research should take its place, but qualitative research offers a nuanced perspective that fits our research question and what we really wanted to tap into.

Maya, could you share a bit about your experience with cancer as a child and as an adult?

Maya Stern: I was diagnosed with Wilms’ tumor, which is the most common type of kidney cancer in children, at 15 months old. I was treated with chemotherapy and I had my left kidney removed because the tumor did not shrink enough. Shortly after that I relapsed in my liver, so the doctors had to be a little more aggressive and treat me with chemotherapy and radiation. I was in remission by the time I was four years old.

After that, I had a pretty normal childhood, but because of the treatments I was followed closely for long-term effects. One of the effects of chemotherapy is heart problems, and with one of the drugs I was given, people are known to be diagnosed with heart problems long into their survivorship. Eventually, at 14 years old, I was diagnosed with a heart problem that deteriorated during my time in high school.

Maya Stern

Maya Stern

At 17 I had a stroke. We did not know that I was experiencing arrhythmias, so there was a clot in my heart and that caused the stroke. Shortly after that I was worked up for a heart transplant, which I received at the age of 21. That changed my life, obviously; now I can go about running like a normal person.

But because of that I take immunosuppressant medications so that my body will continue to accept the transplant, and with my predisposition to cancer because of my childhood cancer along with the immunosuppression, I received a second cancer diagnosis at 27 in my right kidney, a renal cell carcinoma. I had to have my kidney removed, the tumor was taken out, and then my kidney was re-transplanted back into me.

I’m so glad you’re doing well now. Can you describe what a patient partner does and why you chose to participate in research?

Maya Stern: As a patient partner, I’m usually brought in at the inception of the study, when researchers are coming up with ideas, and they usually consult with me to make sure that these are ideas that will actually help patients in the future. It’s asking patients if the research makes sense and if it’s going to be useful to them.

Together, you published a paper earlier this year that gets to the root of how a person’s experience of pain can be changed by going through a cancer diagnosis and treatment. How did the study come about?

Perri Tutelman: Cancer and cancer treatment are among the many factors that can influence how people experience pain once treatment is over. Around the time that we became interested in understanding this pain experience, we connected with Maya to get her help in understanding pain in the survivorship context, to make our research relevant and meaningful to patients.

Around that same time, Dr. Lauren Heathcote, who’s now at Stanford University but back then was at Oxford, proposed a new theory of how cancer might shape the experience of pain. Her theory was that cancer survivors might interpret pain as a sign that their cancer could be back, and that a tendency to interpret pain in that way could make them hypervigilant to sensations of pain in their body. Of course, this makes perfect sense because, for a lot of survivors, pain was an initial symptom that led to their diagnosis, and in general pain is a warning signal that tells us that something’s wrong in our body. To understand more, we wanted to do a qualitative study to explore childhood cancer survivors’ experiences of pain after treatment was over.

How did you design the study?

Perri Tutelman: We interviewed ten childhood cancer survivors who were treated at the IWK Health Centre in Halifax, Nova Scotia, Canada. We used a qualitative method called interpretive phenomenological analysis, or IPA. That’s essentially a long-winded way of saying that we were interested in understanding a survivor’s lived experience of pain, how they ascribe meaning to their pain, and how they make sense of the pain.

In the interviews, participants between the ages of 8 and 17 and their parents independently shared stories about the cancer, diagnosis and treatments, as well as the pain experience now that treatment was over. We transcribed these interviews and then we analyzed participants’ experiences by reading the interviews line-by-line. Our objective was to describe patterns across participants’ experiences, but also to highlight the ways in which some experiences might be different than others. Maya really helped us develop interview guides that helped shape the interviews and the stories we collected.

What did you find?

Perri Tutelman: We saw three main themes; in qualitative research the data are often presented as themes. The first theme is that pain for these families was a changed experience after cancer. This means that some kids experienced more pain after cancer, some kids experienced less pain, and some reported not experiencing pain at all because of nerve damage from the chemotherapies they received. Some kids and parents talked about how, while pain is often experienced, it’s not as bad as it would have been before the cancer. That’s because the kids had been through so much and experienced such severe pain while they were undergoing treatment.

The second theme is that after cancer, kids and parents saw pain as a potential sign of threat. What we mean by this is that kids and parents reported that sometimes they interpret pain as a potential sign that the cancer has come back, or a potential sign of a secondary cancer that might have developed, or of a late effect of treatment. Pain that was either new, meaning pain that hadn’t been felt before; pain that was ambiguous in that it was unclear where the pain was from; or pain that was really similar to pain experienced before the diagnosis tended to be the most concerning.

Pain is naturally a threat signal; that’s the purpose of pain. Pairing pain with a life-threatening experience like cancer might strengthen the association between pain and threat. Is that the theory?

Perri Tutelman: Yes, exactly. That’s related to the third theme we found, which is that parents and children tended to appraise the experience of pain in cancer survivorship in the context of how they appraised the cancer experience: those with more traumatic and threatening memories of the cancer experience tended to be more vigilant and worried about what pain could mean in survivorship.

Let’s go back to your first theme, which is that cancer changes how people experience pain. Maya, can you identify with that? Do you feel like your cancer experience changed how you experience pain?

Maya Stern: Because I had cancer so young and before my memories formed, there’s really no “before” and “after” for me, so there’s no telling how cancer shaped me. But I do get random pain that I assume is associated with cancer, because once I decided to bring it up with someone, I learned that it’s not normal to experience a shooting pain out of nowhere that then just goes away. That could be some sort of nerve damage that I’ve experienced from treatment.

But beyond that, my second cancer was diagnosed due to extreme pain; that’s what sent me to the hospital. Since then, I wouldn’t say I’m hypervigilant, because the cancer was in the same area where you would experience period cramps. But I know when pain is bad, because I have such a high threshold that I can usually tell when something is either very wrong or is going to pass.

You mentioned that you have a high pain threshold. Do you think—and Perri mentioned this as one of the themes—that after going through cancer and so many treatments, normal, everyday pain just seems like no big deal?

Maya Stern: Definitely. I react if I stub my toe but then I brush it off; I don’t tend to catastrophize. My heightened pain threshold might have also come as a defense mechanism because when you go through so many surgeries, it’s like I feel that I can’t just keep getting so down about it. Maybe I’ve learned pain management tactics, or to repress pain somehow.

Perri Tutelman: This really fits with some of the results that we found. There was one participant in our study, a mom, who talked about what her daughter had been through. Her daughter had several of her organs removed and the cancer cut or scraped off of themlike you were talking about, Maya, with your kidneyand then put back in. The mother said after you’ve had something like that happen, it’s no big deal when you get a splinter. That’s what I’m hearing you say with stubbing your toe, that it’s not a big deal in the grand scheme of things.

Maya Stern: Yes, you’re able to somehow compare that pain to bigger pain from the past, and you just know that it’s fine, that you’re okay.

There are people who go in the other direction and become more sensitive, or maybe just more upset, by pain after cancer. What does that tell us about how experience influences pain?

Perri Tutelman: I want to go back to the third theme and how parents appraised pain and cancer as something more threatening than kids did. We found in our study that parents tended to have more threatening memories of their child’s cancer experience than the kids reported, which carried over to being more concerned about pain in survivorship. This makes sense, because we do find in the literature that parents report higher levels of PTSD [post-traumatic stress disorder] after their child’s cancer than children do themselves.

With Maya being treated so young, she doesn’t have a lot of firsthand memories from her initial diagnosis, and there were some participants in this study who were in the same situation. They talked about how their parents were really central in shaping their memories and what happened to them when they were undergoing cancer, framing how threatening that experience was. So it’s not so much their firsthand experience, but the parents’ experience that helped to shape those narratives.

For all the kids, it was really clear that the way parents responded to their child’s pain or other symptoms in survivorship really influenced how kids were responding to their pain, and we find that in pediatric pain more broadly. Parents talked about how, while their child was in treatment, they had to be so vigilant to pain and signs of infection or complications. It was hard for parents to step back from that in the survivorship period because they didn’t want to miss any potential cue that could mean that something bad was happening to their child.

Maya, how do you think your mom’s experience shaped you? And how did that influence your role as the patient partner in research?

Maya Stern: My mom was obviously a huge part of my treatment, and is probably the reason why I’m still alive, because she has been so diligent and so neuroticthat’s the word she uses for herself about all my symptoms and everything that’s going on. I am quite different from my mom in that way; she catastrophizes, but I step back. Because of how stressed and anxious it makes her if she hears that I’m not feeling well, I decided not to disclose as much to her unless it’s really pertinent. I think that was why I asked in the interview guide to see if kids had ever not told their parents about something.

Perri Tutelman: That was a great example of the importance of having patient partners be investigators on studies, to bring that lived experience that many investigators don’t have. When we were developing the interview guides and planning the questions that we wanted to ask kids and parents, Maya was a part of that process, and she suggested a question that I would never have thought to ask. It was really helpful in getting data to help understand the parent-child interaction and how that can shape some of this vigilance towards pain.

How do the findings from your study fit with the understanding of chronic pain outside the cancer experience, especially in terms of the influence of context and expectation?

Perri Tutelman: This study really speaks to the importance of context when it comes to pain, where the cancer experience was crucial in shaping the experience of pain. Pain is going to be a slightly different experience for everyone. For some survivors there’s going to be more pain, for some survivors there’s going to be less pain, based on so many different factors.

What we found is that cancer is a lens through which a lot of these kids and parents are seeing and interpreting pain, and understanding this lens is important for everyone. What people have been through is going to guide how they experience and interpret pain, not only in the setting of cancer but outside of it as well.

What do you hope that this study and line of work will accomplish?

Perri Tutelman: There is so much work to be done in the area of pain in cancer, and pain in survivorship specifically. We know that rates of childhood cancer survival have increased significantly; today, in developed countries, about 80% of children diagnosed with cancer are expected to survive long term. Our paper highlights that pain is something that needs to be discussed in post-cancer care. As Maya said, it wasn’t until she brought up that she had shooting pain that it was addressed and acknowledged. It’s not going to be an everyday problem for all survivors, but the fear of what pain and other bodily sensations can mean can be a hardship both physically and psychologically for children and their parents.

It also highlights the importance of how clinicians communicate about bodily monitoring and pain monitoring after cancer. Parents and kids, but mostly parents, described being really vigilant about their child’s pain and other bodily symptoms, because they didn’t want to miss a potentially life-threatening complication or recurrence. We know that when parents really attend to their child’s pain it can make kids more anxious and pay more attention to their pain.

It makes sense that cancer survivors and parents would be concerned, and it’s not that survivors and parents shouldn’t be aware of what’s going on in the body. But it speaks to being appropriately vigilant and aware. This is easy to say but hard to do in real life, and this is where clinicians could help guide children and parents about the symptoms and sensations they need to worry aboutwhat’s normal, what’s abnormaland how to go from there.

Any final thoughts about qualitative research and the role that it plays in studying pain?

Perri Tutelman: Qualitative research has a long history in health research, but its strengths and limitations, and what it can bring to our understanding of illness, remains less well understood than quantitative methods. It plays a really important role in guiding our understanding of new areas of inquiry, like pain and cancer survivorship. Qualitative research often has smaller sample sizes, and while some may see this as a limitation of the method it’s actually just a core characteristic of it. It allows for that intricate analysis of lived experience that you’re not able to get to with larger samples.

It also helps guide future quantitative lines of research. We’re using some of these results to help us develop a “fear of cancer recurrence” questionnaire specifically for children, and to help us understand what factors related to pain are important to measure in pain studies with childhood cancer survivors.

I also want to say that the richness and the utility of this work wouldn’t have been possible without the partnership of Maya and another patient partner who’s involved in this work, Julia MacLeod. The perspectives and the lived experience that Maya and Julia brought to this study really influenced the questions we asked, the responses we received, and ultimately how relevant and meaningful and applicable this work has been. So thank you, Maya and Julia, and thanks as well to the entire team of researchers and clinicians who helped make this study possible. I especially want to thank my mentors, Dr. Christine Chambers and Dr. Robin Urquhart, and the Nova Scotia Health Research Foundation, which funded the study.

Maya Stern: Qualitative research is extremely important for bringing research into action sooner; we could use numbers, but there’s no meaning to those numbers. Like Perri said, she’s found that so many people experience pain after cancer, but so many people don’t, and this research gives meaning to both of those categories. And then we can move forward with that informationthat is where qualitative research is a powerful tool.

As a patient partner, qualitative research is extremely important because it’s bringing our stories to life and giving an opportunity to different people to tell their stories. We’re the ones who are impacted by that research, so our stories are directly helping us improve our lives and the lives of people who are going to experience what we’re going through.

Stephani Sutherland, PhD, is a neuroscientist and freelance journalist in Southern California. Follow her on Twitter @SutherlandPhD