Empathy to Expertise: My AYA Journey from Patient to Researcher

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In August 2017, my life took an unexpected turn when I was diagnosed with breast cancer during my final year of undergraduate studies. At the beginning of the summer, I discovered a lump in my breast. Yet, I chose to ignore it, hoping to escape the reality it hinted at. Assurances from my family and loved ones, who believed I was “too young” to have cancer, further reinforced my decision. As August progressed, fatigue crept in, I was slowing down and needed to take daily naps after work to function. Tying it to work stress and academic pressure, I made the bold decision to quit my job, thinking it would help me focus on my studies and heal from what I believed was merely burnout.

Then came a moment of awakening the week after I submitted my notice. A colleague, returning from a leave of absence, shared their diagnosis of leukemia, sharing that they experienced relentless fatigue as the initial clue. The similarity was impossible to ignore. I was tired all the time. After hearing their story, this prompted me to seek out a women’s health doctor since I didn’t have a regular primary care physician at the time. This marked the beginning of what would become a series of meetings with a whole range of healthcare providers in the years to come.

The doctor, though seemingly confident, waved away my concerns, attributing the lump to a simple cyst… People my age don’t get cancer. However, my lengthy family history begged for a more thorough investigation, leading to a mammogram. The radiologist gave me my “unofficial” diagnosis, and stated that my doctor would soon be in touch.

Once appointments were lined up, the dreaded chemo-teach session arrived. A nurse spoke a mile a minute and delivered information about my treatment plan, port placement, and anticipated side effects. When we reached the part about hair loss in the list of side effects, I was excited to bring up something I had come across in an online breast cancer support group. They talked about cold caps (scalp cooling) as a way to prevent hair loss. I excitedly asked the nurse about it as it was a bit of hope I was holding on to. But her response was far from encouraging. She scoffed and said, “Honey, those things don’t work! In fact, I have someone here who tried them and they didn’t work for her. I can introduce you if you want.” That hit me hard, and tears welled up as I said that I wasn’t going to go through with chemotherapy and asked everyone to leave the room – I surrendered to my feelings in that moment.

I couldn’t grasp being met with negativity so early on in all of this. It was then that I decided to transfer my care to a facility two hours away, one equipped with a scalp-cooling machine. This decision unknowingly ignited a spark within me for advocacy. As I scoured the internet for insights into scalp cooling, I found myself feeling isolated. Many individuals I encountered would say things like, “Your appearance shouldn’t matter at a time like this.” However, it was about more than that for me. It was about preserving my identity and making a stand against cancer, which had already stolen so much from me in the brief time we’d crossed paths. Realizing I lacked the necessary information and support regarding scalp cooling, I made a pivotal decision. This prompted me to create a Facebook community after connecting with other “cold cappers” on Instagram. Our shared experiences of resistance from care providers, lack of guidance, and determination to preserve our identity amidst cancer’s assault united us. From a humble six, our group has flourished to over 5,400 members globally.

During treatment, as I navigated the realm of cold caps, I was simultaneously learning the art of advocating for myself within the healthcare space. Battling serious infections, grappling with the extreme side effects of chemotherapy, and emergency hospitalizations – my journey was far from smooth sailing. Frustration at feeling unheard by healthcare providers fueled a newfound determination to voice my needs for a better quality of life.

These experiences sparked a passion for health advocacy that I never knew existed within me. As I wrapped up my undergraduate studies, I immediately dove into a graduate program in public health. I set out on a new journey because I was determined to understand how I could contribute to the vast field of cancer care.

My experience within a Young Adult Cancer Program unexpectedly opened the door to patient advocacy, profoundly reshaping my life’s direction. This initial involvement propelled me into a pivotal role on a Young Adult Advisory Board within my community. Alongside this, my dedication led me to advocate for access initiatives by testifying at my state Capitol. Additionally, I’ve participated in the Éxito! Latino Cancer Research Leadership Training, an initiative launched in 2010 by the Institute for Health Promotion Research at UT Health San Antonio. Beyond these commitments, I also serve as co-chair of a workgroup for the CDC’s Advisory Committee on Breast Cancer in Young Women (ACBCYW). This multifaceted engagement underscores my unwavering commitment to advocating for better care, support, and awareness for young adults navigating cancer.

Currently, I’m a doctoral candidate at Baylor University, with my research focus centered on the quality of care for the Adolescent and Young Adult (AYA) population. Through personal experience, I’ve witnessed the distinct care needs of AYAs and the crucial significance of prioritizing their care quality. The array of needs and complexities AYAs face underscores the necessity for specialized attention. During this vulnerable phase, the care they receive profoundly shapes their lives.

I carry this responsibility with unwavering commitment. The privilege of driving advocacy and research to reshape the journey of those facing cancer is not one I take lightly. It’s a chance to pay it forward, to channel my experiences into meaningful change. As I stand before the future, my sights set on my dissertation research focusing on AYAs’ care quality, I know that while the diagnosis shook my world, it also paved the way for me to shape the worlds of others in ways I couldn’t have imagined.

By: Rebecca Munoz