Finding Your Voice: Elpida Argenziano at SABCS 2019

Elpida Argenziano was one of four Living Beyond Breast Cancer leadership volunteers to receive a grant to attend the 2019 San Antonio Breast Cancer Symposium. In this blog, Elpida discusses how attending the conference has helped focus her advocacy.

In July 2019, I spent a weekend in Philadelphia with twenty five women from across the United States. We’d all been selected to participate in Living Beyond Breast Cancer’s Young Advocate program. On paper, we had one major commonality: Our lives had been upended by breast cancer at — or much earlier than — the age we were supposed to be getting screened for the disease. In my case, I was diagnosed at 40 with stage IV breast cancer, metastasized to my bones, despite a clean mammogram 7 months earlier and no family history of the disease. Each of us also had a strong urge to use our voice and personal experience to help others with one of the least understood, most debilitating, deadliest diseases in the world.

LBBC’s Young Advocate training exposed me to the many forms of patient advocacy that exist, including legislative, organizational, policy, community, personal, media, scientific, and research. I decided to concentrate on the latter two, and I set my goals on attending key breast cancer conferences and applying to become a research grant reviewer. Since the moment I was diagnosed with metastatic breast cancer 5 years ago, I’ve read every piece of research I can get my hands on about my subtype and treatment options. I want to understand the science behind the disease, stay on top of the latest research developments, push for better surveillance, and encourage others to use their voice to be a more active partner in their own care.

After completing the Young Advocate program, I was thrilled and honored when I found out that LBBC would be sponsoring me to attend the San Antonio Breast Cancer Symposium. SABCS is one of the most significant meetings for the world’s leading breast cancer clinicians, researchers, and advocates, with more than 7,500 attendees from 90 countries. Results of key clinical trials and research findings are typically announced during the event.

Heading to Texas

It was the crack of dawn on a Monday in December as I headed to LaGuardia to catch my flight to San Antonio. I pulled up my boarding pass. I knew I had a stopover, but I hadn’t looked closely at the itinerary until that moment.

That’s when I realized my initial leg was the 6:15 a.m. Southwest flight to Houston — the same exact flight I used to take every Monday morning during the summer of 2016. I felt a surge of emotions as all the sights, smells, sounds, and memories came flooding back. Every Monday at 4:30 a.m. I would kiss my husband and kids (aged 3, 6, and 10) goodbye and my sweet dad would drive me to the airport. Upon landing in Houston I’d head straight to MD Anderson Cancer Center. I traveled there to receive a specialized radiation therapy called stereotactic body radiotherapy.

I’d lie on the treatment table, staying as still as possible as technicians would carefully position and adjust my body, instructing me to breathe in, hold, then breathe out. Alone with my thoughts, I would close my eyes as radiation beams precisely targeted rogue cancer cells near my chest, lumbar spine, and iliac bone — every place a primary or metastatic tumor formerly lived. I’d repeat that routine every weekday, head home to New York on Friday night, and return Monday morning. It was a lonely, isolating, scary time, and one of the hardest things I’ve ever done. And yet, it gave me so much hope. I did not realize it at the time, but that summer inspired my path toward patient advocacy.

I reflected on how significantly things had changed since that summer of 2016. In Houston’s William P. Hobby Airport I walked by a sign showing MD Anderson Cancer Center’s logo, with the word “cancer” crossed out. I thought about how lucky I am to still be here, surpassing the 3 year median life expectancy of metastatic patients and showing no evidence of disease, heading to San Antonio for a cancer conference as an advocate instead of to Houston for treatment or a scan. My little boy who was a toddler is now in elementary school playing football. My first-grade daughter is now a tween, about to enter middle school. My first-born son — a fifth grader when I was diagnosed — is now a 6-foot-tall high school freshman. My hair has grown back, past my shoulders.

As much as things have changed, one thing remains the same; I will always have stage IV breast cancer; it is never going away. I am one of the fortunate ones for now, and I’m hoping to be an outlier — a miracle responder — one of the 1 percent who might, possibly, live out a normal life span. It’s such a long shot and so much of it comes down to luck. And that is why I must advocate. Because luck will not save lives — research will.

Advocating at SABCS

Attending SABCS as a patient advocate was absolutely fascinating on so many levels. I gained insight into how incredibly complicated this disease is, and assurance that thousands of people all over the world are dedicating their professional lives to help us. Hundreds of patient advocates attended the conference, and we were allowed to attend any of the sessions. At times it was hard to choose which of the overlapping sessions to attend. It was exhilarating but also confusing and overwhelming. The material covered is highly scientific and at times you feel like you’re sitting in a medical school lecture.

Fortunately, every evening the Alamo Breast Cancer Foundation hosted special smaller sessions wherein experts commented on key topics from the day’s presentations and advocates could ask questions. This provided simplified scientific data and explanations in layperson terms.

One of the absolute best parts of attending SABCS was the other patient advocates I met. I was amazed by how broadly LBBC has touched patients and advocates. Although advocates are often involved with multiple organizations, LBBC seems to be one that is a “home base” for patient advocates and the glue that connects so many. Regardless of what organization patient advocates were representing at SABCS, I was struck by how many of them were alumni of LBBC’s Hear My Voice or Young Advocate programs. Others mentioned that the very first time they had met someone in real life who had metastatic breast cancer was at a Living Beyond Breast Cancer conference.

On the downside, it was surprising to see that the patient voice was barely reflected in the presentations nor did patients seem to be included in panels. Further, it was disappointing to see that as much as treatments have advanced, it seems we are still so far from any glimpse of a “cure,” or even the ability to truly live with breast cancer as a chronic disease, as so many hope to see in our lifetime.

After 5 years of living with MBC, and my experience as an advocate so far, I wanted to share two lessons I’ve learned.

Becoming an Expert and Finding Your Voice

Human beings spend hours researching the latest releases of their smartphones and which model dishwasher is best. It is your right to be informed, do your due diligence, and become educated about your disease. At the same time, being a patient can make you feel vulnerable, particularly in the early days of diagnosis. It is so important to trust your instincts if something doesn’t feel right. No matter how much expertise your healthcare providers might have, they are seeing a vast number of patients and breast cancer is an incredibly complex disease. And sometimes, doctors get it wrong — they are human. Your body is your body, you have a right to understand your disease, and you can and should be part of your own healthcare team. The more educated and engaged patients become, the more influential and collaborative cancer care can become.

Why did I leave my family to travel over 1,600 miles for treatment? Why did I do something that was different from the “standard of care” for hormone receptor-positive metastatic breast cancer? Why did I have chemotherapy infusions when I could have just stayed on hormonal therapy pills?

Because of intuition.

Because of research.

Because my life is the one at stake.

In my case, I conducted research and discovered evidence that my case of oligometastatic disease — a rare situation that represents an intermediary state between localized and more widespread metastatic disease — could possibly benefit from more aggressive, curative treatment. I am glad I went with my gut and pushed for this treatment.

Harnessing the Power of Human Connection

Nobody “gets” breast cancer until they get breast cancer. It can be lonely, isolating, and paralyzing. The best part about patient advocacy is the power of human connection. Patients connecting with patients. Patients connecting with doctors. Advocates with researchers. In person and online.

It’s been said that it is difficult to forge new friendships as adults, but when you’ve got the bond of cancer it’s just different. Close friendships form and intimate details are shared. From the mental toll it takes to how to navigate our newfound purpose as advocates, comparing side effects, waiting for scan results and the everyday frustrations of insurance claims and waiting rooms, it helps to have someone to vent to and with. I can never say cancer was a gift, but I certainly consider the people that have come into my life as a result quite a gift.

As I left the San Antonio Breast Cancer Symposium, I hugged my new friends through tears and we vowed to stay in touch. In fact, I text and talk daily with some of them. I feel so grateful to LBBC for helping me define my focus as a patient advocate, for sending me to SABCS, and I look forward to continuing in this role.