October 10 2024
Article by Jade Gibson an NRG Oncology Patient Advocate
As a member of the underserved cancer patient population known as adolescent young adult (AYA-age 15-39), I’ve spent a lot of time in the cancer care continuum. Today, many people see me as a young adult ovarian cancer survivor however, I am swift to remind them that my experience with cancer will always be told from the lens of a 16-year-old girl. Receiving such a rare diagnosis in 2005 and being treated at a community-based children’s hospital did not afford opportunity to be educated about clinical studies in my youth or upon transitioning from pediatric to adult oncology.
It was just two years ago that I sought out to enhance my personal development and joined the patient advocate committee with NRG Oncology. As a member, I have learned there are different types of clinical trials beyond those that lead to advances in medicine. There are studies that focus on prevention, diagnostics, screening, quality of life, and behavioral changes – each designed with the desire to improve health outcomes for individuals impacted by cancer.
Earlier this year, I was asked to lend my voice in support of the approved NRG Pilot project to test Research Intervention of virtually Supervised Exercise program (RISE). The home-based exercise intervention focuses on cognitive impairment and gut microbiome in adolescent and young adult brain tumor survivors. Conversations with Principal Investigators, Dr. Jinbing Bai and Dr. Maria C. Swartz were quite fruitful as we discussed treatment-related cognitive impairments, late effects, and comorbidities that affect AYAs.
Collectively we explored recruitment strategy, design and dissemination of materials, examined assessment burden for AYA brain tumor survivors, and the potential impact of the results on AYA brain tumor survivors.
In closing, I implore researchers, clinicians, and healthcare professionals to engage adult survivors of childhood cancer in conversation about clinical studies. As the MDs of medicine partner with us as MDs of our bodies and together, we can co-create clinical trials and healthcare solutions for all.
AYAs and Breast Cancer
October is Breast Cancer Awareness Month, which coincidentally is the most common type of cancer among AYAs of the ages 15-39 years at diagnosis. Breast cancer accounts for 30% of cancer among AYA people and approximately 6% of all invasive disease occurs in AYAs. Additionally, AYAs with breast cancer are typically delayed in diagnosis (1) which may be due to a variety of factors including not being of age for an annual mammography or limited access to healthcare. This delay often contributes to more advanced tumors and the need for more aggressive treatments (2).
Although all cancer patients face overwhelming hurdles from diagnosis, through treatment and sometimes following treatment, AYAs with breast cancer are faced with a unique set of challenges due to their age at diagnosis, especially those that come from underserved communities. Such challenges could include education, potential infertility, childcare, early stages of a career, premature menopause, and financial toxicity.
To Jade’s point above, many of the AYAs undergoing cancer treatment have not had the experience or education on clinical trials to be able to understand trials as an option for their care unless this is clearly communicated to them and their legal guardian. Communication should be non-biased regardless of age or economic status and should depict all of the patient’s potential treatment options.
In addition to clear and concise communication with patients, researchers conducting clinical trials need to consider the long-term impact of the treatments, especially with AYAs who are beginning their cancer journey at younger ages. In breast cancer research specifically, due to the more frequent need for more aggressive treatments, consideration into the long-term symptom management is crucial to improving the quality of life of these patients. Providing education for signs of recurrences and access to complimentary therapies, support groups, or mental health resources to aid in the before, during, and after of their cancer journey can help make a positive difference in the lives of AYAs.
Sources:
1. https://ascopubs.org/doi/10.1200/OP.20.00793
2. https://jons-online.com/issues/2022/april-2022-vol-13-no-4/4492-what-ayas-with-breast-cancer-and-their-providers-tell-us-about-survivorship-needs