Spotlight: Annamaria Scaccia, Patient & Caregiver Advisory Council

Annamaria Scaccia joined the KCA’s Patient & Caregiver Advisory Council (PCAC) in 2023. She is a frequent blog contributor for the KCA and collaborator on a number of special edition KCA newsletters.

What motivated you to get involved with the KCA’s PCAC?

I was motivated to get involved with the KCA’s PCAC because joining the council felt like a natural progression from my advocacy work as a KCA Ambassador. From my early days of survivorship, I focused my advocacy work primarily on nutrition and fitness. As a one-kidney bodybuilder, I couldn’t find any real, meaningful information on how to adjust my active lifestyle to my new reality. Much of what is available is geared towards people with chronic kidney disease, and that just does not apply to me — or the dozens of survivor athletes I’ve met. So, as a certified fitness and nutrition coach, I’ve worked hard to close the gap by providing information, support, and guidance to fitness enthusiasts with kidney health concerns. As a member of the KCA’s PCAC, I know I can continue this mission by teaming up with our experts to create science-backed, publicly available resources tailored to patients and survivors interested in fitness and nutrition.

But this is not the only reason I wanted to get involved. Recently, I was diagnosed with papillary thyroid carcinoma (PTC) — less than 3 years after having stage I chromophobe renal cell carcinoma. Given that papillary thyroid carcinoma is also a slow-growing disease, it’s likely my two cancers existed at the same time. My case is not unique; researchers have studied four known cases of concurrent PTC and RCC.  What’s more, last year, researchers published a review of the bidirectional association between thyroid and renal cancers. And through the years, multiple studies have mapped out the effect of thyroid hormones on kidney function. (It’s also known that people with kidney cancer have an increased risk of getting thyroid cancer—and vice versa.) Yet, I’ve encountered only a handful of doctors who are aware of this link. Being a part of the KCA’s PCAC gives me the opportunity to raise awareness of the connection with the goal of inspiring new research that leads to breakthrough treatments for RCC.

What are you excited to bring to the organization?

I’m most excited to bring my unique perspective as a two-time cancer survivor. Many people already know me for my advocacy work in the fitness and nutrition space, and there’s a burgeoning online community of one-kidney athletes doing great things. But I have yet to connect with another patient or survivor of both kidney and thyroid cancers. It could be, of course, that we are few and far between. Even still, I look forward to the chance to share my two-time cancer journey so that other survivors may feel empowered to do the same and find connection and community with each other. 

How do you hope to see the KCA grow?

I hope to see the KCA grow in two ways. First, by publishing more content geared towards kidney cancer survivors. Right now, there is a wealth of information available online to patients, but our journeys don’t end after our diagnosis and initial treatment. We have a host of issues to consider while living as survivors — navigating follow-up care, maintaining kidney health, dealing with cancer-related anxieties. I hope to see KCA grow by expanding their tools and resources to include the survivorship experience, and I hope I can use my expertise as a communications professional to shape that material.

Second, I hope to see the KCA grow through its partnerships. Working with other cancer groups can help the KCA connect two-time survivors to doctors who can learn from their cases. Collaborating with nonprofits can provide families with holistic services that address the whole person. By partnering with other organizations, not only can the KCA accelerate research and improve current practices, but also improve the health and wellness of patients, survivors, and their loved ones.  

What is your favorite travel destination?

Currently, I live in Texas, but I was born and raised in Brooklyn. And even though I don’t go back home as often as I’d like, it will always be my favorite place to visit, hands-down. Second to New York, my favorite travel destination is New Orleans, followed Seattle — both for their distinct subcultures and rich history of provocative art, music, and literature. 

What do you like to do in your free time?

Other than lifting heavy things in the gym, I love to create in my free time — whether it’s working on my novel, photographing city life, or building Lego cities with my 8-year-old son. I also love going to the arcade with my son and my partner and trying to win as many tickets as possible to go home with toys that cost less than what we spent on tokens. And, of course, I won’t pass up the chance to sit on the couch and binge-watch British crime dramas or catch up on the latest episodes of the many spin-offs of “RuPaul’s Drag Race.”