Beyond the Cancer Diagnosis: Dialogue with Betty Roggenkamp, by Adrian Pogacian

In this edition of “Beyond the Cancer Diagnosis”, Adrian Pogacian speaks with Betty Roggenkamp, a dedicated cancer consultant and Executive Board Member of Cactus Cancer Society. They discuss the mission of a cancer consultant, the unique challenges faced by young adults with cancer, and strategies to enhance care equity and support for this population.

Betty Roggenkamp is a recognized specialist in cancer care quality improvement, dedicated to enhancing both the experience of young adults with cancer and the effectiveness of cancer care teams. With over 15 years of experience, she is known for her expertise in developing resources/tools, fostering meaningful connections, and implementing innovative process improvement strategies that benefit both providers and the individuals they serve.

Throughout her career, Betty has developed a strong expertise in oncology quality improvement, bringing together interdisciplinary teams that collaborate across traditional boundaries to optimize cancer outcomes. Her teams include a diverse group of providers, researchers, caregivers, advocates, and patients, all working together towards the common goal of improving the quality of life for young people with cancer.

Betty serves as an AYA Program Development Strategist at Teen Cancer America, where she works with, and across pediatric and adult cancer treatment sites throughout the country to develop comprehensive AYA programs that address the unique needs and challenges faced by this population. As a liaison, she also disseminates research, tools, and resources to help providers better serve this patient population and build upon existing knowledge and expertise improving the delivery of care and the lived lives of Adolescents and Young Adults with a cancer diagnosis.

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.

Are there any secrets for a Cancer Consultant?

Adrian Pogacian: Dear Betty, to begin our interview with, I would like to ask you to share for our audience what is the mission of a cancer consultant?

Betty Roggenkamp: My mission is to improve the experience of living with cancer—for both those diagnosed and the providers who care for them. I strive to ensure that every aspect of cancer, from diagnosis to survivorship, is as informed and supportive as possible.

Adrian Pogacian: In addition, you are Executive Board Member of Cactus Cancer Society. Please, bring into attention the values and vision of this center.

Betty Roggenkamp: Cactus Cancer Society was founded by young adults who experienced cancer firsthand. They understand the unique challenges—medical, emotional, and social—that come with a diagnosis at this stage of life. As creative individuals, they saw the power of digital connection long before the pandemic and built an innovative online space where young adults can find support, express themselves, and navigate survivorship together. It’s a brilliant and beautiful model of peer-driven value and vision.

Adrian Pogacian: One of your fields of expertise is working with young adult (YA) cancer patients. Can you specify what the main barriers are for this population group in achieving access and equity in cancer care?

Betty Roggenkamp: Young adults with cancer face multiple barriers, including:

1. Access to care that recognizes their unique life stage and needs.
2. Financial burden, as cancer-related costs can impact their short and long-term financial stability for decades.
3. Late and long-term effects – physically, mentally, financially, and oncologically—that follow them well beyond treatment.

Adrian Pogacian: Consequently, are there any opportunities within these challenges for YA?

Betty Roggenkamp: Yes, opportunities exist within these challenges. Addressing them requires collaboration across stakeholders, innovative thinking, and pragmatic solutions. I’ve been fortunate to participate in projects that have improved care processes and outcomes for young adults with cancer. Through rapid-cycle improvement methods—identifying needs, brainstorming solutions, implementing, reassessing, and iterating—we can create real change today in AYA cancer care.

Adrian Pogacian: Hence, how important is the role of parents in all this process? Considering the fact that their support is essential.

Betty Roggenkamp: A parent’s role depends on the age and independence of the diagnosed individual:

• Younger adolescents often rely heavily on parents for decision-making and emotional support.
• Older teens and young adults may still seek parental support, but it’s important that parents ask how involved they want them to be in decision-making.
• Young adults in their 20s and 30s may be parents themselves, needing help with their own children. Their parents, in turn, may need support in coping with their adult child’s diagnosis.

The role of parents in AYA cancer care is complex and varies widely, but providing emotional and logistical support remains crucial.

Adrian Pogacian: Are there any statistics that focus on the type of cancer YA’s face?

Betty Roggenkamp:  Understanding the types and trends of cancer in young adults is essential for advancing research, advocacy, and support services. Here are some key resources:

• NIH’s (Note: US national websites/departments may be modified by new administration)
• • Cancer Stat Facts: Cancer Among Adolescents and Young Adults (AYAs) (Ages 15–39)
  • List of SEER Registries
• The Lancet Oncology:
  • Differences in cancer rates among adults born between 1920 and 1990 in the USA: an analysis of population-based cancer registry data, Sung, Hyuna et al., The Lancet Public Health, Volume 9, Issue 8, e583 – e593
  • Cancer incidence and mortality among young adults aged 20–39 years worldwide in 2012: a population-based study, Fidler, Miranda M et al. The Lancet Oncology, Volume 18, Issue 12, 1579 – 1589
• American Cancer Society: Cancer Statistics, 2024
• Data for the Common Good, AYA Research Council
• CDC Cancer Surveillance Cloud-Based Computing Platform (Note: US national websites/departments may be modified by new administration)

Adrian Pogacian: Therefore, what coping mechanism or/and strategies do you recommend as a cancer consultant?

Betty Roggenkamp:

For those diagnosed:

1. Communicate your preferences – let your care team know what information you do or don’t want (e.g., survival statistics, prognosis).
2. Build a strong support team – include a social worker, navigator, and a trusted friend or family member to accompany you to appointments.
3. Seek credible information – ask questions, but rely only on reputable cancer resources.
4. Plan for life adjustments – discuss how treatment will impact work, school, and daily life.
5. Advocate for lifelong care – always inform healthcare providers about your cancer history and pursue those that understand appropriate follow-up care.

For clinicians:

1. Understand AYA perspectives – reflect on how a cancer diagnosis at ages 15–39 would have disrupted your own life plans.
2. Prioritize personal connection – greet every patient with eye contact, a hello, and an introduction, especially if they bring a supporter.
3. Acknowledge their identity beyond cancer – ask who they are outside of their diagnosis and revisit those personal aspects over time.
4. Set expectations for test results – inform patients that results will appear in their patient portal before their care team sees them.
5. Be kind to yourself – providing cancer care is challenging. Patients don’t care how much you know until they know how much you care.
6. Share AYA-specific resources – connect, navigate young adults to resources within your institution, the community, and national organizations.

Adrian Pogacian: As for the last question, how do you see the future decade for both cancer consultancy and YA’s fight with cancer?

Betty Roggenkamp: I fear that AYA cancer rates will continue to rise across more populations. The environmental and societal changes affecting our world have significant implications for human health. With more young adults facing cancer, improving their care is not optional—it’s imperative.

As for cancer consultancy, I see myself as a specialist rather than an expert—always learning, always evolving. My role is to provide advice and information, drawing from experiences with AYAs, clinicians, researchers, and advocacy organizations. One missing piece? Policymakers. It may be the time to bring them into the conversation.