Empowering Conversations During AYA Awareness Week with Ruzanna Papyan, Gabriela Villanueva and Carmen Monge

Empowering Conversations During AYA Awareness Week is a dialogue within the framework of AYA (Adolescents and Young Adults) cancer awareness week, by OncoDaily, alongside with AYA Working Group of SIOP, led by Gabriela Villanueva, Pediatric Hematologist and Oncologist at the Oncology Pediatric, AYA Department at Hospital de Clínicas, from Argentina and Ruzanna Papyan from Armenia, recently had the privilege of engaging in a profound discussion with Carmen Monge.

About Carmen Monge

Hailing from the vibrant landscapes of Costa Rica, Carmen Monge is an AYA (Adolescents and Young Adults) cancer survivor with a strong background in research. She has utilized her professional and personal journey through cancer to advocate for global improvements in cancer care. Passionate about fostering conversations around the subject, Carmen believes these discussions greatly benefit the well-being of patients and survivors worldwide.

Carmen is actively involved with Youth Cancer Europe, focusing on promoting equity, inclusion, and diversity within healthcare systems. Her commitment to making a meaningful impact in the lives of those affected by cancer is also evident in her work as a children’s book author and a content creator on her YouTube Channel, MANO, dedicated to cancer awareness.

Recently, Carmen was excited to share the significant achievements of the EU-funded project EU-CAYAS. Last month, her team at Youth Cancer Europe presented a policy paper titled “Equitable, Diverse, and Inclusive Cancer Care in Europe” to the European Parliament. To learn more about this initiative, you can attend the upcoming webinar on April 30. Find more details and register here.

Carmen is also the author of “Can-Can and the Adventure on Ming Island,” a book designed not just as a magical story for children (who may or may not have cancer) but also as an educational resource for parents, teachers, and specialists. You can pre-order her book, set to launch in June, through this link.

For more insights and conversations with people living with and beyond cancer, visit her YouTube Channel, MANO.

About Gabriela Villanueva

Gabriela Villanueva was born in Argentina and completed her medical studies at the University of Buenos Aires. Afterward, she relocated to the United States, where she pursued a residency in Pediatrics at the University of Illinois, followed by a fellowship in Pediatrics Hematology and Oncology at the University of Chicago.

Also, Dr. Villanueva obtained a Masters of Science degree in Public Health Sciences for Clinical Professionals at the University of Chicago. Currently, she is working at Hospital Garrahan, a prominent public Pediatric Hospital in Argentina, renowned for providing care not only to local patients but also to individuals from neighboring South American countries.

Dr. Villanueva is actively leading a research project focused on retinoblastoma survivors, with the goal of establishing a national program in Argentina for systematic long-term follow-up and screening for secondary malignancies.

About Ruzanna Papyan

Dr. Ruzanna Papyan works as a pediatric oncologist at the Pediatric Cancer and Blood Disorders Center of Armenia, Yeolyan Hematology and Oncology Center. Since 2019, she is Assistant Professor in the Department of Pediatric Oncology and Hematology at Yerevan State Medical University. Dr. Papyan also leads the Musculoskeletal Multidisciplinary Working Group at the Pediatric Cancer and Blood Disorders Center.

Additionally, starting in 2022, she has taken on the role of Clinical Research Physician at the Immune Oncology Research Institute. Dr. Papyan is an active member of various professional associations and holds the position of Young SIOP representative of SIOP Asia from 2023.

Since 2022, she has been responsible for coordinating educational sessions for the Global Neuroblastoma Network (GNN), an international platform that focuses on multidisciplinary neuroblastoma tumor board discussions for countries with limited resources. Dr. Papyan regularly participates in both international and local conferences, often contributing as part of organizing or scientific committees.

Between 2019 and 2021, she was studying at Harvard University’s Harvard Medical School through the Postgraduate Cancer Research Program. Her Ph.D. project at Yerevan State Medical University is dedicated soft tissue and bone sarcomas in children and young adults.

Her primary areas of interest and expertise are neuroblastomas and sarcomas and currently she is working on development of Sarcoma Research and Care Network (SaRCaN), that will help to improve the management patients diagnosed with sarcomas and will foster research collaboration between centers with limited recourses. Dr. Papyan is a member of the OncoDaily Editorial Board.

Article by Tatev Margaryan, MSc

Empowering Conversations During AYA Awareness Week

About OncoDaily

OncoDaily.com was founded in 2023. It is a US-based oncology media platform, which features the latest news, insights, and patient stories from the world of oncology. Within a short period, it became one of the leading oncology media platforms globally. OncoDaily gathers content from various sources, including social media posts from renowned oncologists from all over the world, news from oncology societies and cancer centers, patient and survivor stories, and career-related information for professionals. The mission of OncoDaily is to empower patients, survivors, and professionals with the knowledge and inspiration they need to fight cancer. The motto of OncoDaily is “Cancer doesn’t take a day off – neither do we.”

Follow the transcript below

Ruzanna Papyan: Greetings to all! Everyone, it’s OncoDaily and Adolescent Young Adult Working Group from SIOP, and it’s my great pleasure to meet you all here. Your co-hosts for today will be Gabriel Villanueva from Argentina and Ruzanna, me, Ruzanna Papyan from Armenia. We are the co-chairs of a working group, and we are privileged today to welcome Carn Monk, a researcher cancer advocate at Y Cancer Europe.

Thank you very much, Carmen Monge, for accepting our invitation. We are going to talk today about your initiatives during this Cancer Awareness Week. We are going to talk about your journey, and probably we can start with your book. Congratulations on publishing this book! It’s a great story. Would you tell us a bit more about this book and how it’s going to contribute to awareness?

Carmen Monge: Thank you for the question. Yes, I’m very excited about the book. Well, I have the cover here, so it’s almost ready to be polished. It’s going to be polished on the 25th of May. “Can-Can and the Adventure of the Ming Island” is the first book of three. The idea is to provide a holistic view to show the holistic cancer journey.

So not only the physical challenges that could be chemotherapy and losing your hair and feeling weak and all that stuff, but also the emotional and social challenges that cancer patients have. So, this is the first book of three because I really want to show most of the cancer journey. Like you cannot summarize it in one book or three books, but it’s just the start.

So, the first one is going to be about the diagnosis, the second one the finish of the treatment, and the third one is about life after the treatments. That is something that is normally overlooked because people say, “Okay, but you are healed, you finished the treatment, you are okay.” But no, there is so much more after the treatment.

So, Can-Can is a little panda that has cancer, and together with his best friend, that is a sloth, he is going to face all the challenges to find the golden crop that is the ultimate treasure. So, it’s like a treasure hunt map. The characters are very diverse as well. There is an elephant, a chimpanzee, and a toucan. The idea of this book is two things.

I work in EDI (Equity, Diversity, and Inclusion) research, and this book is very diverse because of all the animals of different parts of the world, and also, we talk about different types of cancers, different treatments, different journeys, basically. And that is something that you cannot see very often. For me, Can-Can will help AYA (adolescents and young adults) in the future and not only AYA but also adults and to teach kids since they are very young everything about cancer.

So, in a way, for me, Can-Can is a project for the future because it’s quite difficult to change the mentality of adults because they already made their mind. But for kids, you can show them, and in the future, they can become very savvy adults that they know how to handle cancer very well. And yeah, in the future, AYA and adults and even kids, they will be more comfortable sharing their journey and sharing because of their mental health. Thanks to that, everyone will seek cancer in a different way. So, that is my way to seek and can.

Gabriela Villanueva: That’s great! Your book, I mean, it has cartoon characters, but it seems that it’s aimed at all ages, not just for children.

Carmen Monge: Well, it’s basically from seven to 11 years old, but many adults have read it and they said that it’s for every age because you learn something from it.

Gabriela Villanueva: Yeah, that’s great. And just this, it’s a great material, and congratulations for your book. But now you, as a young adult cancer survivor, can you tell us a little bit about the unique challenges that you faced during your own journey? I mean, I guess part of that is what is reflected in your book, but could that at least a little bit of your experience be shared here for others, cancer survivors or patients, people going through treatment right now?

Carmen Monge: Yes, of course. Thank you for that question because it’s very important, right? Like every person has different challenges. In my case, I think one of the main ones were anxiety, and I still have it, but I try not to think a lot about it, and I try to see the good part of it because normally people see anxiety like an awful thing, but also it can make you be aware of things and appreciate the moment.

So I’m starting to think about it not only as a bad thing but also as a good thing. Also, I struggled a lot with loneliness, especially when you are a young adult that has cancer because normally cancer is for old people, that’s what people said. So when I was on the treatment, I didn’t have any friend that has cancer, I didn’t know anybody.

Right, so when I was on the treatment I didn’t have a lot of cancer peers, so I couldn’t communicate with them and that made me feel very lonely but after that ER after the treatments  was my most difficult part because of mental health, so during the treatment I was more like on a survival mode that is what it’s called…

So I was like okay I’m going to finish this I’m going after this so my family everyone was on the same chip, right but after the treatment I started having a lot of anxiety and depression and things that nobody told me that they were going to happen so was that moment that really talking with other cancer survivors and other cancer patients helped me.

Gabriela Villanueva: I guess also having your life so structured by a treatment right A lot of people telling you what your day was going to be like and then suddenly you had the chance to decide it might be a huge change.

Carmen Monge: yes and you’re right Gabri because in a way also the people that is around you they are back to normal but I didn’t feel normal, so that was quite difficult as well and I had other physical effects late effects like chemo brain and chronic fatigue that nobody told me about it and I just started studying and working out after the treatment and it really saw a difference on that like my mind wasn’t the same than before so that was also a surprise for me that nobody told me and I wish somebody told me before.

Ruzanna Papyan: A very important point, Carmen, because it’s not only about just the duration when the patients receive treatment but also the follow-up during the follow-up and survival.

During that time, most people have anxiety and problems like it can be like in social life, in career, and education and uncertainty about that. So, you have managed to overcome that and  my question also is about your YouTube channel.

I do remember about that, you were very active about that and interviewing the other cancer survivors. So when you decided to have this Channel and what you would  tell about that also.

Carmen Monge: This was a project, was a volunteer, or is still a volunteer project. I don’t make anything about it, just that it’s one of my passions, right, and I really want to start a channel that I wish I had when I was in my lowest point, like when I had anxiety and depression and look for material or people similar to me.

So, this YouTube channel, the aim is to connect people not only cancer survivors from around the world but also the co-survivors or families of people that really need this support.

And I also want to talk about other topics that nobody talked to me before, like chemo brain or sexuality that is so important in young adults and adolescents, right, like nobody told me like that after the treatments and thanks to many of the surgeries that I had is going to impact somehow my relationship with my partner.

So, I really want to talk about intimacy, sexuality, chronic fatigue, chemo brain, grief ER, so many things. So, that was my space  because at the beginning I thought that I was going to teach others but at the end, I realized that I was learning more than I wanted to teach. So, it is a very good Channel because it has all this interview with experts on the field but also with cancer survivors from everywhere.

At the beginning, the idea was only Latin American so the first interviews are in Spanish because I thought that cancer was a really taboo topic in Latin America but then I realized that it is a global issue.

So, right now I’m interviewing cancer survivors from everywhere and this makes me really happy. I love to learn and meet people and see more what is different and what is the same right regarding cancer.

Gabriela Villanueva: I’m sure there’s a lot of similarities in different contexts that are so hard to pinpoint at sometimes and how long you’ve been having this YouTube channel if I may ask.

Carmen Monge: For four years and I have more than 75,000 views and most of my public is from 25 to 44 years old. And I have interviewed people from, I don’t know, I think like I have more than 80 interviews.

And yes, and the surprising part, for my surprise, is from everywhere. I have people watching it from the Middle East, from Asia, from countries that they don’t even talk Spanish. So, I thought like, oh, an expert that is living there or somebody that speaks Spanish that wants to know about cancer and they feel lonely because they are not like in their country or somebody that understands them.

So, that made me feel also very, very happy. And at the beginning, it was quite difficult to find the interviews because not everybody wants to talk about their experience. It could be traumatizing.

But right now, I’m very happy because even there is people that they write to me a message like, hey, I want to be interviewed, hey. So, I have a big waiting, everyone wants to be there. I hope so, I hope so.

Gabriela Villanueva: So, my guess is that based on your experience and all the experience that you’ve learned and heard from others through your YouTube channel and your life after treatment, you gathered a lot of information and made a big impact in terms of policy recommendations. Right, you just presented that at the European Parliament. So, can you tell us a little bit about how that journey started for you and what is the hope from those recommendations?

Carmen Monge: I’m very happy that you asked this because we are very proud of this document. It’s the recommendation for Equitable, Diverse, and Inclusive Cancer Care in Europe.

So, this is part of what this is one of the deliverables of the UKAS project that is a collaboration between all these countries if you can see them. And I work for Youth Cancer Europe, so we were in charge of writing these recommendations.

It’s the result of an exhaustive literature review and two surveys, one for patients and one for healthcare providers, and another one, a focus group that we did include, that we also include Romania, that we also include the perceptions of Roma people and other minorities that they are normally overlooked. So, this document has three main recommendations and has 26 actions depending on the topic.

So, if you can see, like this table, maybe you cannot see it, but I will send the link so everybody can see it. So, we give action plans depending on different categories. So, it could be gender identity, sexuality, or race, ethnicity, refugees’ status, or migration depending on the age, education.

So, it’s a very complete document that we expect that not only organizations but also governments will use it as a base or will use it as a guide to implement EDI recommendations or plan in their country or organizations.

So, very happy about this and very thankful for Youth Cancer Europe to give me the opportunity to give not only my perception as a researcher but also as a migrant and as a cancer patient.

Gabriela Villanueva: That is super important we want that link.

Ruzanna Papyan: This is really important for the policy recommendations are really very important. My next question would be, what are your next steps in this project? What you’re currently working on? What are your future steps about this in the EDI scenario?

Carmen Monge: We are working on the sustainability project, so how can we ensure that this is going to apply not only in Europe but also as a migrant? In my mind, I want this to be applied everywhere. I think that Europe is like the good example that the world sees regarding Cancer Care, so I really hope that this document and this initiative are going to be applied everywhere.

Regarding the project ER, we are preparing a toolkit that is going to be like a course. It’s going to be a course of three days for different publics. So, we want to teach not only cancer patients and cancer organizations but also researchers and healthcare providers.

This course or toolkit is going to be very interactive and in a way that everyone in Europe will know how to react to different scenarios and different discrimination depending on the countries. We are going to talk also about inclusive language and how to deal with different cultures, so it’s going to be very complete.

Stay tuned. I’m going to leave also the link because this is a project that we are going to launch our first course in June, but we hope that we can keep providing this information everywhere in the future.

Gabriela Villanueva: So, stay tuned and who could be part of that? Who could join those persons?

Carmen Monge: I will leave the link.

Gabriela Villanueva: But could anyone from anywhere join?

Carmen Monge: Well I think right now like the first course is for Europe but I hope that in the future is going to be for everyone, I was there so you never know, I was Born in Costa Rica.

Ruzanna Papyan: And hopefully, to conclude this, I would like to ask you to share some insights, some advice for people who are currently receiving the treatment. I’d like to say young adults especially and survivors during this Awareness Week. What would you advise them?

Carmen Monge: Like I think one of the things, not well, it’s an advice that can be applied to anything and to anyone, but I really think it’s very important not to compare yourself, especially regarding the treatments and the type of cancer, because every experience is different, everybody is different. Like when I started the treatment, I thought, “Okay, I’m going to be like the cancer patient that you see in the movies.”

And when I didn’t feel that bad or like the movie said or like the book said, I felt like an imposter, like I don’t deserve to be called a cancer patient or survivor. So yeah, it’s just that every person is different, every treatment is different, every journey is different. So don’t compare yourself. And another thing is that when I got cancer, I thought that my life was over, right? Like, that I wouldn’t be able to do everything that I wanted to do.

And well, I didn’t do what I thought I was going to be, but in a way, the journey that I had was more meaningful because it was more difficult, definitely, but it was worth it, yeah. So because you have cancer, it’s not going to be the end of your life or you’re not going to find happiness.

It’s difficult at the moment because so many things are happening, right? Like, and not only for you, also for your family and the people that love you. But yeah, just time will say it, and yeah, I don’t know, that is an advice.

Gabriela Villanueva: But you brought a really important Point like cancer your cancer diagnosis doesn’t Define who you are or you could be it will shape you but it will not Define the total that is up to you.

Carmen Monge: You said better words definitely we can put in a T-shirt ! Cancer doesn’t define you like, I’m a cancer survivor but I’m so much more.

Ruzanna Papyan: Exactly. That’s true. So, to conclude this, thank you very much again for joining us. We are looking forward to further details, further news from you, and looking forward to your YouTube channel, your next volume of your books, and all the initiatives that you are going to be a part of.

Carmen Monge: Thank you very much to you, and for the interview. Yeah, I had a very good time.