Beyond the Cancer Diagnosis: Dialogue with Alique Topalian, Hosted by Adrian Pogacian

In the last episode of ‘Beyond the Cancer Diagnosis’, Adrian Pogacian debates the issue of cancer advocacy and how difficult it is to become a trusted voice within the cancer community with Dr. Alique Topalian, research scientist and patient advocate.

Alique Topalian is a 2-time cancer survivor. She was first diagnosed with AML in 1998 at age 4 and relapsed in March of 2021 at age 27. She is now in remission and using her voice to passionately raise awareness about the unique needs of cancer patients. At age 7, she began to advocate for childhood cancers and raise awareness about bone marrow and cord blood donation. Since 2000, she has been the mascot, spokesperson, and fundraiser for the Armenian Bone Marrow Registry. Her experience with childhood cancer inspired her to obtain a Master’s in Public Health and a Ph.D. in Health Promotion and Education completing her degree in 2020.

Her research focused on mental and behavioral health examining protective factors and resiliency. Little did she know that in March of 2021 she would relapse with AML, the first person to ever relapse after 22 years. During her time in active treatment, she used every opportunity to network, participate in psychosocial programming, and educate herself on resources available to patients in all stages of treatment.

Since her relapse, Alique is speaking at national and local conferences, involved in many national cancer non-profits, advocacy, and health care organizations to ensure the patient voice is heard. Alique was selected as a 2022 recipient of the 40 Under 40 in Cancer award. She is sharing her experience with The University of Cincinnati as a Research Scientist to research patient experience, oncology primary care, cancer related cognitive impairment, AYAs, and survivorship. Her life’s focus and passion have grown as a result of her relapse, and she is determined to improve the lives of others.

Adrian Pogacian, MS Psychology, clinical psychologist with executive education in Psycho-oncology, holding a degree in Global Health Diplomacy from Geneva Graduate Institute. Currently, researcher and associate lecturer with focus on Impact of Cancer Diagnosis on Couples and Families, Communication in Cancer Care and Posttraumatic Growth. His expertise is on Coping with Cancer and managing Fear of Recurrence.

Additionally, Founder of INCKA Psycho-oncology Center, Host of Beyond the Cancer Diagnosis Interview Series as well as Writer and Host Content in Psycho-oncology at OncoDaily.com, co-author of the first Romanian Multimodal Care Guideline in Pediatric Onco-hematology, active contributor to the International Psycho-oncology Society, presently IPOS Fear of Cancer Recurrence SIG member and IPOS Early Career Professionals in Psycho-Oncology Committee founder member.

00:00  Introduction.
01:10 Life Before Cancer: A Survivor’s Story
02:28 Building Social Connections
04:01 Healing Through Choice
05:16 Connecting Through Isolation
08:58 Virtual Healing Communities
12:13 Access and Advocacy
17:49 Facing Stigma and Inequality
21:54 Cultural Stigma in Cancer
26:28 Trust in Care

Adrian Pogacian: Hello everyone, nice to meet you again to a new interview of Beyond the Cancer Diagnosis interview series. Today my guest is Alique Topalian from University of Cincinnati. Alique, nice to have you with us. Thank you very much for accepting my invitation and I’m sure that will be an interesting discussion regarding cancer within and let’s say outside communities. For the beginning, I will ask you to share for our audience your experience as two-time cancer survivors. And what I’m interested in is if these two journeys, to put it this way, was the same or were different or what was the experience more on the second journey of survivorship?

Alique Topalian: I was diagnosed the first time in 1998. We’ve come a long way in treatment since then. I remember parts of the first diagnosis, which I know it sounds kind of crazy because I was so young. But the things I remember the most are trying to find a bone marrow match. We weren’t able to find one for me. Being 100% Armenian, I was told that my most likely match would be within the Armenian community.

So we held drives actually internationally. We weren’t able to find a match for me, but we were able to help found the Armenian bone marrow donor registry. So I’ve been involved with that since I was very, very young. I always say I don’t really remember growing up before cancer. It’s kind of something that’s always been in my life. And I knew I wanted to go into the healthcare field because of that. I started with my bachelor’s in psychology and I went for my master’s in public health. I had every intention originally of going to be a clinical psychologist.

And I started working in a psychiatry department here in Cincinnati and I was also working on a community engaged research project in another role that I had as an internship. I started realizing that I didn’t necessarily like the clinical side of things as much as I like these community-based interventions. With the individual side of it, I just realized that I kind of had this skill set where I really love building different kinds of programming and figuring out how we can evaluate it and one of the core things that was kind of underlying in my work was always social connection.

So I decided to go for my PhD in health promotion education. And I focused a lot on mental and behavioural health and I looked at religiosity and neighbourhood factors and social relationships in those settings. And if they help to protect against different mental health issues like depression or anxiety. Shortly after finishing my PhD in 2020, I started feeling really sick. And I actually ended up relapsing with AML.

So acute myeloid leukaemia was my diagnosis both times. And I was the first person to actually relapse with AML after 22 years, before me, they didn’t know it was possible. Just finishing my PhD and coming from this research background, I feel like really empowered me as a patient in shared decision making.

I was very involved in choosing all of the treatment protocols, looking at different clinical trials in a way that I don’t think a lot of people are able to just because they don’t have that kind of healthcare background and training and through that experience, I was treated on the paediatric side. Now on the paediatric side, they wrap you in support. So, I had horticulture therapy, music therapy, art therapy, different kinds of exercise classes, therapy dog that would come around and visit.

I also started to get involved in kind of more social programming. So going to different groups for adolescents and young adult cancer survivors. And I was seeing people do just such innovative things where you bring together a group of survivors and you work on, say, an art project and you all are talking to one another and it’s a healing experience, and I knew when I was in treatment that I wanted to try all of the things that were available to me because when I was done, I wanted to go back. And this is what I wanted to research.

It was kind of like a perfect segue of my prior experience working in the mental health field and always trying to come up with innovative interventions for things, but now taking that and doing it in the cancer population where it’s really so important. So, when I went back to work, I actually switched from the psychiatry department over to the cancer center, and I got hired on as a researcher in survivorship and supportive services. So, anything that falls into patient programming, patient education, but also things that we offer like oncology primary care, our cancer related cognitive impairment clinic, our cancer exercise clinic.

I evaluate all of the metrics and things for that as well because it’s the most important to show that these things work. People want measures. Otherwise, how are we going to prove how valuable they are? So that’s kind of where I’ve entered into the field and decided I think this is where I want to be and highlight these specific areas of need.

Adrian Pogacian: Since I’m doing this interview series, as you mentioned, I noticed that in my case, the specialists have also something to say, except they are researchers and everyone has an opinion and everyone has this intention to be involved in growing up the communities, especially the communities with lack of access to cancer care.

And from my personal opinion, I always stated that what is local is global and what is global is local, and I would like to ask you if you agree with this statement that recent events starting with 2020 with the pandemic and the crisis now with all the conflicts around the world put humanity to a real test of social cohesion, starting from the lowest level, the one of communities.

Do you agree with this?

Alique Topalian: Definitely. And I think just even the level of isolation that people had to live in for such a long period of time. And, something I said to my husband was, I think for the first time, the general community is starting to understand how cancer patients feel, because so often when patients are in treatment, I know, especially for blood cancers, you get severely immunocompromised.

For me, like I wasn’t really allowed to be around anyone. I was barely even allowed to have people touch me. And I think that in itself is so incredibly isolating, and basically the whole world got to see that on a global scale and experience it.

You know, we found that there’s studies that have come out that have said social isolation is similar to smoking 15 cigarettes a day. We know it’s bad for your cardiovascular health, we know it’s bad for your mental health, we know it increases your risk of mortality. So, while the world was getting forced into isolation, we started to have one of the greatest mental health crises of our time, and, I think we’re still seeing the effects of that today.

But I also think that a lot of people don’t realize that that’s what individuals impacted by cancer and their families often have to live in that state for long periods of time of still masking in your house, even before COVID, after COVID, making sure that you don’t have any kinds of like viruses or Molds or fungi because your immune system is so compromised, it can’t even fight off the smallest things.

You know, if you’re not allowed to go outside barefoot and put your feet in dirt, you really should not be interacting with that many people, So I think it really highlighted also some of these major concerns that we see in our patient population and brought mental health kind of to the forefront in a way that we didn’t see before COVID-19.

Adrian Pogacian: Remaining at the COVID-19 pandemic and this two years period of isolation that you mentioned, how do you see that community change or cancer community change? How difficult was to keep up with patients, with relatives, with let’s say caregivers during these times?

Alique Topalian: I think it’s interesting too. So, I was treated during, like I was diagnosed March of 2021, So I was really being treated in the heart of the pandemic and, how visitor lists were structured when you were in the hospital was incredibly strict. You’re only supposed to have two visitors.

I know that that was really hard for a lot of families not being able to have that kind of connection even with each other, I know that certain times during the pandemic, you weren’t even allowed to have anybody with you when you went in for your cancer treatment.

And I’m incredibly blessed. I always had someone with me, but so many people had to go in and face that alone, which is really difficult, But something that I’ve seen that’s come out of it and, it’s changed cancer as we know it, but it’s kind of changed our world as we know it, is this beauty of video conferencing and being able to do things halfway across the world from one another and still being able to build communities. So, a lot of like cancer support organizations, like my mom is CEO of a cancer support organization in Cleveland. And when they switched a lot of their programming to being virtual, they actually expanded their reach.

Now they have people who attend their programming actually from all over the world instead of just from Cleveland, Ohio. Another thing is when you’re in treatment and you’re immunocompromised, sometimes you’re also having mobility issues or you’re having a really bad day with side effects and you might not want to leave your house. And this makes it so that psychosocial programming can come to you really for the first time ever, and I know some people don’t like the video as much. A lot of these organizations also offer things in person, but some areas have nothing in person.

And this can at least bring something to those people who otherwise would have zero access to this kind of supportive care, and I think that’s really important. You know, there’s an organization that I work with. It’s called Cactus Cancer Society.

They focus on adolescent and young adult survivors, and they have gotten so innovative. They started doing Lego building where they will send you a Lego kit to your house and on video for a couple of weeks, you go through together and you assemble it in a group of survivors where you keep seeing the same people every week and you’re building up these relationships. And I think that’s just so creative, and I think while it was very difficult for us, it also the pandemic forced people to go out of their typical box of thinking and how to try to increase access to some of these kinds of services.

Adrian Pogacian: It was also like a test for patients and also for every specialist, because talking with clinicians, with oncological doctors, with the person in charge with support group of cancer patients, they said that, OK, online and telehealth or e-health or whatever, it’s good.

But every one of them said that the thing is missing is that human touch or to be next to a human person, because this is the most important thing in cancer treatment, in cancer care. As you mentioned, to have someone near to you with whom you can share a thought or a feeling or yeah, during this time and with all your experience, you become a voice within, let’s say, cancer community. I would like to ask you how hard it was for you to become a valued voice in community, because there are many, let’s say, voices, but not all of them are, let’s say, not verified, but able to talk about certain subjects.

Alique Topalian: Yeah, I think that I, for one, am on kind of the lucky end of this, I’m going through cancer. I think it really changed my personality in the way of it eliminated so much fear, anxiety, imposter syndrome coming straight out of my PhD. I had horrible imposter syndrome, but going through this, of course, I’m an expert.

How much more of an expert can you be than if you’ve lived through this experience, right? You have that firsthand account. And then also having the background of a researcher, so being able to go in and apply things that way, But where I kind of hit the trifecta that I think really started to make this all take off was getting involved in advocacy as well.

So, I also am a patient advocate where I do local and national policy advocacy for things that also support my research in the future, like increases in research funding. But they also support patients, like making sure that certain testing is covered for patients, I think through that is when I started to find my voice and learn that I could tell my story in a way that was compelling and people were listening.

And then I went to, so I said when I came back to work, I was still in psychiatry. I had been out of work for a year, and when I came back, I went to the cancer center. And I said I want to do this work. You don’t have anybody who’s doing it right now, I want to be that person.

And, at first, they were kind of hesitant, but someone had asked me to give an advocacy presentation at a conference. And I was up there, I was using my slides that said my institution. And someone from my institution, one of the leaders was actually in the audience. And he came up to me after and he’s like, who are you and why don’t we know you? And that was kind of the impetus, and so I was very lucky that the team that I got added to is incredibly mission driven.

My boss is such an incredibly supportive mentor. Almost every person on my team is either a cancer survivor or a caregiver, so like that kind of mission focus, I think has made it a little bit easier for me. We also have philanthropic funds that have helped me be able to attend conferences that a lot of early career academics aren’t necessarily able to attend, and so for that, I’m incredibly privileged, but being on the side of this where it’s survivorship and supportive services is hard. We’re not running clinical trials. We’re not doing biological drug development. You know, I’m not doing mouse modelling. I’m working with quality of life.

I’m working with patient experience, and a lot of times people don’t necessarily take this area of the field as seriously as they do more basic research areas of the field. I think that that has been frustrating and hard definitely to navigate. But I think another thing that kind of helps with it is my personality and my ability to share my story, I always say that when I am sharing my story, I also share stories of other advocates I’ve met along the way who aren’t comfortable necessarily sharing their story with others, but their voices also deserve to be heard.

So, making sure that we highlight people and bring others up with us to really show how important this is. Because just because you survive your cancer, that’s only the first step, It leaves you with late and long-term effects you’re going to have to deal with the rest of your life. It gives you cellular aging. I’m 31 years old and have the cellular aging, according to research of a 50-something-year-old. You know, we’re having people live longer than they ever have before after a cancer diagnosis. And we need to figure out how we take care of them during that time as well. It doesn’t just stop because you are in remission.

Adrian Pogacian: And also, your enthusiasm in talking and activities, because unfortunately, the cancer experience is something that you live on a long, long time. Talking about communities and you as a voice from or within communities, it comes to mind two notions, let’s say, that each community faces. First is stigma in cancer care, including self-stigma, and the second one is inequality in cancer care access. What is the case from your communities, to put it like this, or with the communities you work with regarding stigma and inequality in access to cancer care?

Alique Topalian: You know, it’s so interesting, these two issues, because there’s so many things that can go into it. You know, there’s the stigma of stigmatized cancers.

So, a lot of people talk about head and neck cancer or lung cancer, where people think that, oh, you had a negative behaviour, so that’s why this happened to you. And that is absolutely horrible in the communities that it affects. And we’ve actually seen, like, male head and neck cancer patients have some of the worst mental health outcomes of any cancer patients, and I believe a huge part of that is because of this stigma. When you look at different cultural groups, so I’ve been working with an organization lately, they were translating their resources from English into Spanish, and the direct translation wasn’t working.

And they wanted to figure out why, they did focus groups and interviews. And one of the things that kept coming out was the stigma. So, a lot of people in the Hispanic community actually thought even discussing cancer can bring death to your door, that people, there’s some cultures where people even think that you’re contagious still, if you have cancer. And that can be incredibly stigmatizing. There’s the stigma of not wanting to reach out for help and not wanting to be a burden to the people around you, and,  I think that all of this kind of go together in separate issues that need the proper, like, cultural tailoring to address.

It’s not going to be a one-size-fits-all approach to try to eliminate these stigmas. I think, I had such a moving conversation once with, she was a five-time lung cancer survivor, and she used to smoke. And she broke down and said I don’t even feel like I can cry because everybody just thinks I deserve this. But nobody deserves that. Nobody deserves cancer for any behaviour choices. That’s not right. And that’s not how it should be.

Adrian Pogacian: This is what we call self-stigma. Exactly. I deserve this.

It’s so difficult. And that’s where support and counselling, but also talking to others with your diagnosis can be helpful to kind of come together and see, help each other overcome some of those stigmas. Because you’re always your own worst critic. You’re always going to be harsher on yourself than anybody ever would be with you. So sometimes getting some of that outside opinion is important. Now, when it comes to equity and access, that’s another huge issue.

So, I’ve been working on a couple of different projects kind of in this area. And we see so many different inequities, we often hear about it as racial disparities. One project I’ve been working on, it’s we did a pilot and we found that a lot of our African-American men who were diagnosed with lung cancer were declining undergoing lung cancer treatment or surgery because of things related to social determinants of health, so, transportation, housing and food insecurity, but also provider trust and communication, and that played a huge role into it.

So we’ve been working on building some interventions with patient navigation to try to help with some of those things that we’re seeing. Equity in terms of your location. We know so many of our people in more rural areas don’t have access to any supportive services, sometimes even a cancer hospital. I know there’s counties within our catchment area here in Cincinnati that are two and a half hours to get to the hospital. That in itself poses a great deal of inequities.

Another thing that we’ve seen, though, is I know it’s a population I keep talking about, but the AYA, this adolescent young adult group, we are a huge cancer disparity 18 to 39. What we see in this population is usually later stage diagnosis because they’re misdiagnosed so many times because everybody thinks, oh, they’re too young for cancer. It couldn’t be cancer, and so because of the social developmental stage in life you’re in during that age range, there’s also a lot of tailoring that’s needed to address some of those concerns. People are just starting their families. They’re just starting school or their first job.

They may be uninsured or underinsured. And that’s a huge equity issue that we see as well that sometimes doesn’t get as much focus as some of the typical disparities that we discuss, but age counts as well. And I think it’s also something that is going to need cultural tailoring, both of these things being a community engaged researcher, one of the things that I believe is we’re doing things with the community, not for the community.

We don’t want to go in and say, hi, here’s all these things that we’re going to start implementing in your community, and this is going to be great and help you. But we don’t have any input from that community itself, you don’t know if that’s actually going to work.

That’s just coming from your brain and trying to put it into another environment. You need to have things like co-design, you need to have things where you have individuals from the communities you’re trying to serve involved from the very beginning and making sure that your priorities are even right to begin with. And I think that’s going to be something that’s really important to address both of these key issues.

Adrian Pogacian: And to inspire hope, which is the most important thing to inspire hope and to give hope that there is time for every cancer patient. We don’t have too much time left, and I would like to ask you like the last questions briefly. Usually, I ask my invitates about hope in cancer care, but this time I would like to ask you being a voice within communities, how important is trust in providing cancer care?

Alique Topalian: I think it’s incredibly important. And my first doctor, the one who diagnosed me, um, actually had told me August of 2020 that I was so far out from treatment there. I was cured.

There was no chance of my cancer ever coming back. And then that doctor was the same person who had to give me my diagnosis in March of 21 when I found out, and I did not trust her at all anymore because I thought the whole thing was so backwards and mind boggling to me. And then I went home to Cleveland. That’s where my family is, and that’s where I was treated. And I met my primary oncologist immediately. And I, she just brought this calming presence into the room, and I just knew, I knew that she would save my life.

And I don’t know how to describe that, but I was like, I don’t want anyone else. I want her, and, uh, because it was the Pied side, I also had to have an adult oncologist consult. And I initially didn’t necessarily have that same relationship with the adult oncologist. There was even a clinical trial I was approached for where I would have had to switch over to the adult side, 100%, and my doctor who I liked would have only been a consulting doctor instead. And a huge reason I didn’t participate was because I was like, no, this is my doctor.

And I trust her with my life literally, and I think that’s so important because, this isn’t just the cold or flu, this is something that you’re going to be going through long intensive treatments that are going to hurt physically, mentally, spiritually. And you want to make sure you have a partner who’s fighting beside you. I think that that’s so important even in follow-up care.

I live in Toledo now, my husband’s in medical school, but my primary care physicians in Cincinnati where I work and I started trying to find primary care physicians where I lived now, and it just didn’t seem like any of them were necessarily understanding, what I needed as someone who was still immunocompromised, who was on maintenance therapy and needed extra attention still, because I get sick more often and those kinds of things, and  even finding that has been so difficult. I always say you’re interviewing your doctor just as much as like, they’re looking at you and you don’t have to stay with the first doctor you meet.

If you don’t think that they’re the right fit for you.

Adrian Pogacian:  Alique Thank you very much for sharing with us this wonderful information as news and activity that you are doing. I wish you good luck in your further activities future, uh, events and workshops that you are preparing and thank you and have a wonderful afternoon.

Alique Topalian: Thank you so much for having me. It’s been so great meeting you and I really want to hear more about your work too. So, I look forward to staying in touch.

Adrian Pogacian: Thank you very much.