Surviving Cancer, Advocating for Others
It has been said time and again that it takes a village to care for a patient with cancer.
As patient advocates and members of the Patient Advocacy Board at the Herbert Irving Comprehensive Cancer Center (HICCC), Anne Marie Mercurio, Patti Murillo-Casa, and Desiree A. H. Walker work to ensure that the patient perspective is top of mind among physicians and scientists when it comes to the overall conversation about treatment, care, and research. Through sharing their own stories of hope and inspiration, they want other cancer patients out there to know that they are not alone.
Anne Marie Mercurio is a survivor of lobular breast cancer and self-proclaimed “accidental advocate.” Mercurio had suffered from cognitive side effects of her chemotherapy, a condition referred to by patients as “chemo brain.” It wasn’t until a friend encouraged her in 2011 to start a blog about cancer, a light-hearted, humorous take on her struggles with memory loss, that Mercurio realized sharing her own very honest experience with the disease had a positive domino effect. It opened doors, she says.
She didn’t consider herself a writer or a blogger at the time, but that chance decision to become more public with her disease essentially launched Mercurio knee-deep in the cancer community as a patient advocate and networker. She’s a speaker, a writer, and active on social media, with a fitting Twitter handle, @chemobrainfog, and consistently lends her experience as a survivor to other patients and health care providers to improve the patient-provider experience or advance treatment and research. She has served on multiple grant review panels, as a site reviewer for the National Cancer Institute (NCI) cancer center grant renewals, and as an adviser on clinical research for investigators at several institutions, including at the HICCC.
“I will remain an advocate for cancer patients for as long as it takes,” says Mercurio. “As long as I can add value and as long as I'm welcomed at the table I will take a seat at that table, and I will just continue doing this and being there to represent cancer patients.”
In the fall of 2020, Mercurio lost her mother to metastatic breast cancer. While serving as her mother’s caregiver for nearly eight years, Mercurio began to take a closer look at the communication pitfalls between health care providers and their patients and family members. She recalls one interaction with a resident who informed Mercurio over the phone that “the patient will be discharged this afternoon,” referring to Mecurio’s mother. The words, “the patient,” rather than addressing her mother by name, caused Mercurio to take pause and raise that concern with the resident.
“I asked her to stop and consider her phrasing for a second and reminded her that patients are people and they are someone’s loved one,” she says. “Words matter.”
Improving the physician-patient dynamic
Putting patients as people first is what drives Desiree A. H. Walker’s patient advocacy work. Patients with cancer should be cared for with the right balance of emotional and physical well-being.
“I really would like us to get to a place in health care where physicians realize a person that is diagnosed with cancer doesn't just want to be alive. They want to be able to live and enjoy life fully,” says Walker, a health educator and motivational speaker. “At the end of the day, patients were someone before they got diagnosed and doctors need to be reminded of this.”
Walker was 38 years old when she was first diagnosed with breast cancer. After undergoing two lumpectomies, radiotherapy, and hormonal therapy, Walker entered remission. Once she passed the five-year mark post-treatment and had no evidence of disease, she breathed a sigh of relief. But eight years later, she was faced with a breast cancer reoccurrence that devastated her and her family and friends.
“The cancer returned and it was aggressive,” says Walker, who underwent a bilateral mastectomy with reconstruction, chemotherapy, hormonal and targeted therapies. “As a result of all of the treatments, I'm thankful to be alive today, albeit with collateral damage.”
Walker was propelled to patient advocacy work to share her story and to build awareness in the African American community “that young adults, especially African Americans, can and do get breast cancer,” she says. While doing outreach for the national nonprofit group, SHARE, she was constantly asked about support groups for survivors of African heritage. In 2013, Walker formed Harlem SHARE for women of African heritage who have breast or ovarian cancer.
Walker serves as the board president of Young Survival Coalition (YSC), a patient advocacy organization for young adults diagnosed with breast cancer, and as a patient advocate with the National Coalition for Cancer Survivorship, NCI’s Central Institutional Review Board, and SWOG’s Patient Advocate and Recruitment and Retention Committees. She also is a patient advocate on research teams and protocol reviews, and has attended and presented at numerous research conferences, including the San Antonio Breast Cancer Symposium and AACR’s The Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved Conference.
“To the hundreds of people that have come through the support group, I tell them that although breast or ovarian cancer is what brought us together, they should not only focus on their cancer diagnosis but on living life and feeling joy again,” says Walker. “I’ll continue to work with physicians to emphasize the point that cancer patients want to thrive and not just survive cancer. They want to reclaim their bodies and potentially have a fuller, healthier, and more meaningful life.”
Being there, through survivorship
For longtime patient advocate, Patti Murillo-Casa, surviving cervical cancer in 2009 wasn’t her last health hurdle. After remission, she suffered depression, leading to an inactive lifestyle and bouts with overeating. Unfortunately, this trajectory landed Murillo-Casa with another set of health problems: obesity, diabetes, high cholesterol, and high blood pressure.
“At the time, I could not find my old self. I felt exhausted. I felt alone, empty, and without purpose. I turned to food as a source of comfort,” says Murillo-Casa. A year later, she completely shifted gears.
“I told myself that I did not beat cancer to live an unhealthy life. I know I had to do a lot of work, but I was ready. I was determined to change my mindset and take advantage of this amazing second chance.”
Murillo-Casa shed over 100 pounds in a span of 14 months and has since turned her career focus to fitness. She works as a group instructor who specializes in senior fitness and cancer recovery fitness, and her patient advocacy work is centered on providing patients with resources and direction in living a healthy lifestyle, both mentally and physically.
As an educator and wellness coach with Cervivor, a national support group, Murillo-Casa shares her story with other patients with cancer so that they can be aware of what could follow in cancer survivorship, and most importantly, that a person’s cancer journey doesn’t end after hearing the words, “no evidence of disease.”
“Most people would think that when you learn you’re cancer-free that you are able to dust yourself off and pick up where you left off. Unfortunately, that’s not the case. Cancer changes your life completely,” says Murillo-Casa. “I want women to know that if they are fighting cancer, they are not alone. I am here, and so are many of us who are willing to support them, from the start, during, and through survivorship.”