Reviewed by: Anna Capasso, MD, PhD, and Rebecca Muñoz, MPH, Young Adult Advisory Board Member
Written by: Ashley Lawrence
Approximately 80,000 people between the ages of 18 and 39 are diagnosed with cancer each year in the United States, which accounts for only five percent of all cancer diagnoses. Young adults experience very specific concerns when diagnosed with cancer as this is a time when they are typically focusing on their education, independence, self-identity, career development, and family planning. There are also often concerns about body image, relationships, and intimacy. Because cancer is relatively rare in young adults, traditional pediatric and adult cancer care models tend to fail to support the needs of young adult patients diagnosed with cancer.
UT Health Austin’s Young Adult Cancer Program is a specialty program within the Livestrong Cancer Institutes that provides access to cutting edge cancer treatment and comprehensive supportive services for young adults (18-39 years of age) who are diagnosed with breast cancer, gastrointestinal cancer, head and neck cancer, lung cancer, and hematologic malignancies as well as those patients (13-39 years of age) with any known or suspected gynecologic cancers. The Young Adult Cancer Program addresses needs specific to young adult patients that are related to their cancer diagnosis and treatment, including concerns about building and caring for a family, identity, education, career development, finances, and more. Additionally, because a cancer diagnosis can cause distress at any age, social, emotional, and mental health support is also available.
Rethinking Cancer Care
“We understand that young adults with a cancer diagnosis typically do not fit into the traditional pediatric or adult cancer care model. Because of their unique needs, our care team is dedicated to spending time with patients and their loved ones to better understand their goals so that we can connect them with the appropriate resources. This involves all members of the patient’s care team, including experts in medical oncology, surgical oncology, fertility preservation, nutrition, onco-psychiatry, genetic counseling, clinical social work, and more. Our multidisciplinary team is trained in helping patients address social isolation or emotional distress, helping patients address social isolation or emotional distress, understanding how their treatment may impact their fertility, or guidance on how to talk about their cancer diagnosis with colleagues, supervisors, peers, and loved ones,” explains UT Health Austin medical oncologist Anna Capasso, MD, PhD.
Services offered across the Young Adult Cancer Program include:
- CaLM Supportive Care Services
- Cancer Fertility Preservation
- Care Coordination and Treatment Planning
- Career and Education Support
- Caregiver Support
- Clinical Research and Trials
- Financial Counseling
- Fitness, Physical Therapy, and Yoga
- Hereditary Cancer Screening and Risk Reduction
- Integrative Therapy
- Legal Counseling
- Nutritional Support
- Oncology Pharmacist Support
- Palliative and Supportive Care
- Peer-to-Peer Support
- Social, Emotional, and Mental Health Support
Leading the Way
The Young Adult Cancer Program was co-designed with the help of young adult cancer patients, survivors, and loved ones who serve on the Livestrong Cancer Institutes’ Young Adult Advisory Board. These young adult advisors work directly with clinical providers and staff to recognize gaps in support for young adults with cancer and to rethink cancer care. Their personal experiences make them experts on what matters most to young adults navigating a cancer diagnosis and the services offered through the Young Adult Cancer Program are tailored to this specific patient population and delivered in coordination with the patient’s entire care team to ensure the patient’s treatment plan addresses the full spectrum of the patient’s needs and preferences.
Advisors have the unique opportunity to:
- Gain a better understanding of the healthcare system and service delivery
- Share their personal opinions, experiences, and perspectives
- Inform patient care
- Enhance the cancer care experience
- Become advocates for patient and family-centered health care in their community
- Improve how patients become active participants in their own health care
- Connect with peers who have also experienced cancer or cared for someone with cancer as a young adult
“When I was diagnosed with breast cancer, it quickly became obvious that I didn’t exactly fit into the traditional cancer care models that are built around younger pediatric patients and much older adults,” says Rebecca Muñoz, who serves on the Young Adult Advisory Board. “Instead, I fell into this unique category in which I didn’t feel listened to, validated, or supported. Being a part of the cancer world is challenging enough, and I’m glad my involvement with the Livestrong Cancer Institutes and the Young Adult Advisory Board has created a space for me to advocate for a better cancer care experience for the young adult cancer patient population by working with the Young Adult Cancer Program care team to support and improve the lives of these patients.”
As a patient advocate and public health professional, Rebecca works closely with the Livestrong Cancer Institutes on identifying needs in patient education, research, and evaluation initiatives as well as the evaluation of the Livestrong Cancer Institutes’ CaLM cancer care model. As a young adult breast cancer survivor who recently graduated with her master’s in public health, she has provided valuable insight that has helped inform patient care. Recently, she assisted with the launch of the new Breast Cancer specialty now offered through the Livestrong Cancer Institutes. She has also served as a collaborator and patient advocate on the 2020-2021 CHER grant team that has partnered with the Breast Cancer Resource Center (BCRC) to address the unmet needs of young women being treated for breast cancer.
“We cannot deliver person-centered care without utilizing the expertise of those with lived experience,” shares Dr. Capasso. “Our founding patient advisor, Christina Bain,* always said, ‘Oncologists may be experts in treating cancer but not in living with cancer.’ And I carry that with me every day. The Livestrong Cancer Institutes is incredibly grateful for our Young Adult Advisory Board designing services, offering solutions, and helping us address patients’ needs.”
If you are a young adult who has been directly impacted by cancer and are interested in joining the Young Adult Advisory Board, please reach out to the Young Adult Cancer Program at CaLM@austin.utexas.edu or visit here to learn more.
For more information about services offered through the Young Adult Cancer Program, please call 1-833-UT-CARES (1-833-882-2737) or visit here.
*Christina Bain, who was critical to establishing the Young Adult Advisory Board and implementing the CaLM cancer care model, passed from complications associated with colon cancer on February 8, 2021, at the age of 37. To learn more about Christina’s story, please visit page 4 of the Livestrong Cancer Institutes’ Inaugural Annual Report.