Beyond the Cancer Diagnosis: Interview with Kayla Fulginiti, by Adrian Pogacian

In today’s edition of ‘Beyond the Cancer Diagnosis’, Adrian Pogacian addresses the Adolescents and Young Adults (AYA)’s challenges after a cancer diagnosis, a topic undervalued at global level, together with Kayla Fulginiti, LCSW, OSW-C, who is a Licensed Clinical Social Worker and the Senior Director at Elephants and Tea.

Kayla Fulginiti, LCSW, OSW-C, is a Licensed Clinical Social Worker and the Senior Director at Elephants and Tea. She has been involved in the adolescent and young adult (AYA) oncology space since 2007, first as a Hospital Social Worker in Adult Oncology and then as a Pediatric Oncology Social Worker and School Program Coordinator.

Throughout her career, she has always advocated and emphasized the importance of AYA support by assessing and raising awareness about AYA needs through direct clinical care, research, community engagement, and serving on advisory boards for various nonprofit organizations. Kayla has been involved in the nonprofit space for over eight years, having multiple roles such as Program Manager and Program Director within the youth suicide prevention space and AYA cancer communities. She lives with her husband, son, and their boxer rescue – Blue Cheese – in Denver, Colorado.

Adrian Pogacian, licensed clinical psychologist, with executive education in Psycho-oncology, holding a degree in Global Health Diplomacy from Geneva Graduate Institute and a certificate in Medical Intel Course from NATO School, Oberammergau.  Currently, invited speaker and associate lecturer with focus on Impact of Cancer Diagnosis on Couples and Families, Communication in Cancer Care and managing Fear of Recurrence. His expertise is on Coping with Cancer and Posttraumatic Growth.

Additionally, Founder of INCKA Psycho-oncology Center incka.org, Host of Beyond the Cancer Diagnosis Interview Series at OncoDaily.com, Journalist at CancerWorld.net, 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 (FORwards) Special Interest Group Board Member (2025-2027), IPOS Early Career Professionals in Psycho-Oncology Committee Founding Member (2023-2026) and Multinational Association of Supportive Care in Cancer (MASCC) member.

AYA’s challenges after a cancer diagnosis

Adrian Pogacian: Dear Kayla, you are Senior Director to both Steven G. Cancer Foundation and Elephants and Tea project. Could you share for our audience the idea behind these initiatives, their missions, visions and values?

Kayla Fulginiti: The Steven G. Cancer Foundation (originally the Steven G. AYA Cancer Research Fund) was started over 15 years ago by Angie and Harry Giallourakis in honor of their youngest son Steven, who was diagnosed with cancer at the age of 15. Steven is now a five-time survivor of four different cancers at the age of 34 and doing well, but at the time the family recognized the challenges of being a young adult with cancer and the continued effects it can have into survivorship. The mission of SGCF is to build community and support for the AYA cancer community through wellness, storytelling, education, and research.

Elephants and Tea is the nonprofit media brand of SGCF and our mission is to help adolescent and young adult (AYA) patients, survivors, and caregivers know they are not alone in their experience with cancer. The Elephant in the room is cancer. Tea is the relief conversation provides. We are the only magazine written for and by the AYA cancer community telling their story in their own words. We believe in the power of storytelling and the impact it can have and all of our in-person and virtual programming centers around this value.

Adrian Pogacian: Nowadays, speaking and debating about AYA’s cancer care trajectory is more challenging than ever before. Therefore, how important is it to integrate psycho-education in our daily clinical routine in order to prevent misinformation, but especially, disinformation?

Kayla Fulginiti: Integrating psychoeducation into our daily clinical routine is crucial, not only to counter misinformation and disinformation, but to support the unique mental health and emotional needs of this population. AYAs face immense psychological challenges as a normal part of development. They’re navigate identity development, independence, and peer relationships and, with an added cancer diagnosis, they are doing it alongside a life-altering diagnosis.

Psycho-education provides a vital opportunity to normalize emotional reactions, teach effective coping strategies, and reduce anxiety through understanding. By providing clear, compassionate information about the emotional and psychological impact of cancer, we help AYAs feel more equipped, less isolated, trusting, and better able to engage in their care.

Adrian Pogacian: In addition, why do you think this category is the most vulnerable to cancer diagnosis on medium and long term (on my opinion even short term)?

Kayla Fulginiti: AYAs are an incredibly vulnerable demographic when it comes to a cancer diagnosis and their continued care into survivorship. They are at a critical developmental stage, navigating identity formation, independence, education, careers, and relationships. A cancer diagnosis disrupts all of that and, suddenly, instead of planning their future, they’re facing life-threatening illness, invasive treatments, and social isolation.

Unlike pediatrics, they may lack the consistent parental advocacy and support systems we tend to see with children, and unlike older adults, they may not have yet developed the emotional tools or life experience to cope with serious illness. Additionally, AYAs frequently fall into gaps in the healthcare system, where services may not be fully tailored to their unique psychosocial needs. This combination of developmental disruption, emotional overwhelm, and systemic limitations makes them particularly vulnerable, not just physically, but mentally, socially, and emotionally.

Survivorship adds another layer of complexity for AYAs. While completing treatment is a major milestone, it often marks the beginning of new challenges, such as adjusting to life after cancer, managing long-term side effects, fears of recurrence, and the emotional aftermath of trauma. Many AYAs can struggle to reintegrate into school, work, or social circles, feeling out of sync with peers who haven’t experienced such life-altering events.

We need to emphasize the importance of continued psychosocial support during survivorship, helping AYAs rebuild their sense of identity, navigate delayed milestones, and find meaning in their experience if that is something they are struggling with. Survivorship care must go beyond medical follow-up to truly address the long-term emotional and social impact of cancer on young lives.

Adrian Pogacian: What are, in your opinion, the first sentiments experienced by AYA when receiving an oncological diagnosis. What coping strategies or mechanisms do you recommend in order to overcome these difficult feelings?

Kayla Fulginiti: Emotions are complex and often we feel more than one at the same time. In my
experience working with AYAs, many of those initial emotional responses include shock, fear, confusion, and a profound sense of isolation. Many struggle with the loss of normalcy and uncertainty about the future, which can then intensify feelings of anger, sadness, and ambiguous grief. To support them through these challenging yet incredibly normal emotions, some coping strategies such as validating their feelings, encouraging open communication, fostering peer support through AYA-focused groups, and integrating mindfulness or expressive therapies can be helpful.

What we don’t want to do is appear dismissive or minimizing of someone’s emotional reaction to their situation. Feeling like our emotions are invalid or “not normal” creates further feelings of isolation and struggles with belongingness. Building a strong therapeutic alliance and providing age-appropriate psychoeducation can also empower AYAs to regain a sense of control and emotional balance during a deeply destabilizing time.

Adrian Pogacian: One of my previous guests talked about the “permission to grieve”. One of your favourite topics is the “permission and grace to feel our emotions”. Consequently, you’ve initiated and run a monthly group for survivors called STEEP. I would like to ask you to share with us what the initials come from and the concept, which I know it is extremely intriguing.

Kayla Fulginiti: Absolutely! STEEP stands for Sitting Together with Empathy and Emotional Perseverance. We meet virtually, once a month for 90 minutes to talk about, identify, and explore emotions that we often think we “shouldn’t” or don’t want to feel. The concept came from truly listening to the experiences of AYAs and hearing that certain emotions were easier to talk about than others.

We seem to allow ourselves the space and recognition of certain emotions, while others seem harder to acknowledge, feel, and talk about. Emotions like anger, guilt, fear, helplessness, uncertainty are incredibly common and a normal part of the human experience, but we tend to feel like they “shouldn’t” be talked about or, perhaps, we don’t have a safe place to share them. I wanted to ensure that our group allowed for nonjudgmental exploration and what we’re finding is that there is connection, hope, and validation through expressing our feelings without trying to fix them.

Adrian Pogacian: We all know that family or the loved ones support it is extremely important. From your experience for almost two decadesmore than decade, whom is taking the role of caregivers
(parents, spouse, partner, friend)? Hence, are you counseling them as well?

Kayla Fulginiti: I’ve observed that caregivers of AYA patients are most commonly parents, especially for those on the younger end of the spectrum. However, for older AYAs, the role is often filled by a spouse, partner, or even a close friend. Each dynamic brings its own challenges, but what remains consistent is the emotional toll caregiving takes. These individuals are navigating their own fears and grief while trying to stay strong for their loved one, often putting their own needs last.

We absolutely need to be extending support to caregivers to provide them with a space to process their own complex emotions such as guilt, helplessness, and burnout, and to develop effective coping tools. Offering guidance on communication strategies, setting healthy boundaries, and emphasizing that they are allowed to care for themselves in addition to caring for their loved one is critical.

Empowering caregivers with education and emotional support not only improves their well-being but strengthens their ability to be present and effective in their role—ultimately enhancing the overall care experience for the AYA patient.

Adrian Pogacian: We are living in increasingly chaotic and demanding times, where the pressures on healthcare providers continue to grow—particularly in oncology, where patient needs are rising
and time is limited. From my perspective, even when we, as professionals, succeed in supporting AYA patients—helping them reduce emotional distress, build coping skills, and improve their overall mental well-being—the emotional and professional toll on us can be significant.

Given the depth and impact of this work, are there meaningful opportunities for career growth, development, or even structured mental health support for providers who walk this intense path? How do we sustain ourselves while continuing to deliver high-quality, compassionate care?

Kayla Fulginiti: Personally, I can say that the emotional intensity of working within the AYA community is both deeply meaningful and, at times, deeply taxing. I’ve witnessed firsthand how the emotional demands of caring for AYA patients can lead to significant burnout and compassion fatigue among healthcare providers. We are often holding space for intense fear, grief, and existential
distress, all while navigating growing caseloads, time pressures, and systemic constraints. Even when we achieve positive outcomes—reducing distress, empowering patients, and building resilience—the emotional labor is cumulative.

Unfortunately, opportunities for career development or structured mental health support for providers are still limited in many settings. To sustain ourselves in this work, we need more than acknowledgment. We need institutional commitment to our well-being, which could include protected time for reflection, access to counseling or supervision, ongoing training in trauma-informed care, and pathways to grow professionally without sacrificing our own mental health. Without these supports, we risk losing talented, compassionate providers to burnout, just when they are needed most.

At Elephants and Tea, we are starting to focus some initiatives on supporting healthcare providers through AYA POWER and our Healing Through Writing Workshops.

• The mission of the Adolescent and Young Adult Program for Oncology Workforce Education and Resources (AYA POWER) is to provide oncology trainees with high-yield education and resources to improve care delivery and outcomes for all adolescents and young adults (AYAs) diagnosed with cancer. A needs assessment of pediatric and adult fellows and program directors was completed and found that 85% of programs lack a formal AYA curriculum, and nearly 50% of respondents reported little/no AYA topic specific education.
  AYA POWER aims to target this gap by providing live virtual lectures, as well as an online resource with additional educational materials and articles. Our library currently includes 15 lectures on topics related to AYA care including sexual health, oncofertility, end of life conversations, clinical trials, barriers to care, psychosocial concerns, and healthcare provider support.

• Our Healing Through Writing Workshops offer the opportunity to use journaling as a form of self-therapy in a relaxed and safe environment. Elephants and Tea staff guide participants through writing prompts and an open discussion after each exercise as a way to empower oneself and connect to their peers. Providing these workshops specifically for healthcare professionals allows for intentional self care, reflection, and peer support while discussing themes of burnout, compassion fatigue, and reconnecting to our “why”.