Improving the Quality of Care: When Patients & Oncology Nurses and Navigators Collaborate

One of the most influential people in my cancer journey was my oncology nurse.?Although there were several who worked in the infusion center, there was a particular one that seemed to know what I was thinking before I said a word.?She became my life raft.?Not only was I one of the youngest patients she’d ever treated with breast cancer, but being that I was triple negative, there was no targeted treatment for the type of disease that I had, and with an average rate of recurrence/survival of five years, she knew how afraid I was.?Treatment options were never truly explained to me, nor did I have a choice in the matter or know that I did.?In addition, I was so scared that I just wanted to get to the point that I was told “you’re cancer free”.

Everyone seemed to be in business as usual mode and I felt like the world was spinning around me.?When I walked into the infusion that first day, and sat down in the chair for treatment to begin, I looked up and saw what looked like a shower head, I asked one of the nurses why there was a shower head over the chair, her response was that if for some reason the chemo spilled on my skin, it could cause severe skin burns.?I looked at her and said, “but you’re going to put it in my veins.”

?She sat next to me and although she tried her best to keep a straight face, I could tell she was sad.?She answered every question I had and did everything she could to soothe me.?Throughout my treatment, she became my ride or die and even after treatment ended, for years, I would stop by to check in on her and give her a hug.

Oncology nurses play a critical role in treatment for cancer patients.?We spend more time with them than our doctors while in chemo, and they are a lifeline.?It was my pleasure to speak at The Academy of Oncology Nurse?& Patient Navigators (AONN+) Annual conference in November.?AONN+ works to improve patient care and quality of life by defining, enhancing, and promoting the role of oncology nurse and patient navigators. It has more than 8,900 members, and provides a network for professionals involved and interested in patient navigation and survivorship care services to better manage the complexities of the cancer care treatment continuum for their patients, viewing their organization as “professional patient advocates”.

Every year, AONN+ brings influential navigators, social workers, physicians, and administrators together to think boldly and enact change, share best practices, and build relationships. ?The many memorable sessions included opportunities to learn from experts in Technology and Innovation, and Navigation Program Development.?The general sessions included a focus on?Addressing Access to Care Through Social Determinants of Health; Sessions on implicit Bias, “Guided Dying; and Building the Case for Navigation and Creating a Survivorship Program.?Other general sessions covered topics such as Exploring End-of-Life Care, Designing a Navigation Database to track Metrics, Cancer Equity and inclusion, the Power of Prehab, and CoC Updates.?

It was wonderful to share my story, but also the role patients can play in collaborating with oncology nurses to transform the patient journey.?I spoke about the inception of Tigerlily Foundation, while in treatment, its growth and one of the programs I am most proud of our ANGEL (Advocating Now to Grow and Lead) Advocacy Program, through which we educate, empower, equip, support and amplify the voices of Black patients as leaders.?I asked if I could bring along one of our ANGELS, and invited Rheila Parker to join me.?She’s phenomenal.??

Rheila shared the stage with her.?Here is her story. Rheila is a Native of Orangeburg, South Carolina and currently resides in Owings Mills, Maryland.?She was diagnosed July 2020, at age 42, with Invasive Ductal Carcinoma, Stage II, Grade 3, Triple Negative Breast Cancer (TNBC) of the Left Breast, underwent chemotherapy, a lumpectomy with reconstruction, and radiation.?Rheila was delared cancer free January 25, 2021.

According to Rheila, her breast cancer diagnosis came at a difficult time in life. Here is a firsthand account of her story:

“I struggled with self-esteem, self-confidence, and self-image. I was a very reserved person. I noticed the lump in my breast and ignored it for some time because I was a caregiver for my mom. I kept putting off the need to pay attention to what my body was telling me. I began to feel pain in that area which got my attention, and I made an appointment with my PCP right away. He confirmed the lump and ordered a biopsy. While awaiting the results, I prayed, fasted, and trusted that all would be well. I heard the voice of God say, "I shall live and not die". I pondered that for a bit then asked God if it is benign, why would you say I shall live and not die? I waved it away in my mind and kept trusting. I received a call confirming the diagnosis of malignancy and it was in fact cancer. I was shocked and do not remember my reaction at that moment. I decided to believe and trust what I heard God say, that I shall live and not die. Something ignited in me and I “faith it forward”. I shifted to a bolder, determined person.

Due to Covid restrictions, I was alone for treatments and hospital stays, which was emotionally hard, but I began to receive unexpected support. My team of doctors, nurses, patient navigators were a huge part of my support system.?They were there encouraging me, providing resources, listening to me, holding my hand, and rubbing my shoulders through difficult treatments.?Today, nearly two years after the diagnosis, I stand more confident and bolder, and the struggles I had before are reminders that feed my determination for a better healthier life. I intend to love myself unconditionally so that I can live my life freely and be intentional about living a healthy lifestyle. I now see the diagnosis was the perfect interruption in my life. I say this because I have found my voice and I am speaking up and out proudly. I am now a passionate Tigerlily ANGEL Advocate, educating, advocating for, empowering, and supporting young women, before, during, and after breast cancer.

It was amazing to share the stage with Rheila, as she gave her first public talk, and to feel the warmth in the room.

One of the most rewarding parts of what I do is giving others a platform to thrive and shine and shine she did… and then we danced the night away.

Tigerlily Foundation looks forward to our continued collaboration with AONN, working together to empower patients and ensure health equity is at the center of all that we do.