Driving the point home: Taking lessons from national conferences to your local community

Stephanie Walker is a Hear My Voice alumna and was one of four Living Beyond Breast Cancer leadership volunteers to receive a grant to attend the 2019 San Antonio Breast Cancer Symposium. Athenex sponsored Stephanie’s scholarship and that of Susan Swanson. In this blog, Stephanie discusses the challenges of bringing lessons from national conferences home to regional cancer centers.

Having the opportunity to attend the 2019 San Antonio Breast Cancer Symposium was a mixed bag of excitement, worry, and curiosity. Living in what many consider a rural area in eastern North Carolina has its advantages, but these are overshadowed by the high number of deaths in men and women with breast cancer.

Since relocating back to Tarboro, North Carolina, my desire to help women with breast cancer still tops my list. I was diagnosed with metastatic breast cancer in July 2015. At that time I thought I was the only one, and definitely thought I was the only African American with this diagnosis. Then I attended my first metastatic breast cancer conference, hosted by Living Beyond Breast Cancer. The fire had its first spark. I wanted to know more. Being fairly new to breast cancer advocacy, it has been a challenge to try and step out of my profession as a nurse and help others on a more personal level. I feel that I have always been an advocate for my patients and family. Now I could do more for myself and others living with metastatic breast cancer.

My town has a community hospital and cancer center which serves surrounding areas including a county without access to a medical oncologist. This is a small blessing in an area where many people struggle financially and are medically underserved. Access to care is a concern, health literacy is a problem, trust in healthcare providers is an ongoing issue (a decades old problem), and transportation to get to a cancer center for treatment or doctor appointments is a huge headache.

When the blessing to attend the San Antonio Breast Cancer Symposium knocked on my door, I flung the door open, threw back the storm door and ... Oh wait that is from another story. I wanted to learn all I could to be able to share with anyone who wanted to hear it.

While attending the conference I attended many sessions about subjects ranging from prevention to diagnosis to a plethora of treatment modalities. The poster sessions were my favorite. I found posters that addressed common issues that keep patients from receiving the most effective care, from patient-driven solutions to disparities in treatment plans and knowing about clinical trials. Meeting other advocates who had similar challenges provided me with a way to gather ideas that could be implemented in my community. I was excited about getting a better understanding about genomic and genetic testing, which I have very little knowledge of — I hadn’t been offered these tests. Information about clinical trials was also welcomed since I had always thought of them as a last-ditch effort.

My experience at SABCS was awesome. I took away a better sense of new treatment plans and new tests, and meeting researchers that are making a difference in my life changed the way I look at my own oncology team and the care I have received. Getting the information from speakers, advocates, and the medical community was considerably easy compared to the somewhat difficult time I would face back home.

The closest cancer center to me doesn’t allow printed material from other sources or organizations if the hospital logo isn’t on it. Also the community as a whole doesn’t embrace changes. How could I get others as excited about new information as I was? I thought of just casually dropping a flyer or pamphlet in the waiting room on days that I volunteered at the cancer center or ask to share at the monthly volunteer meeting. I did share my newfound gold mine of information by speaking at the local cancer support group. It was a bit easier to disseminate information that I wanted so desperately to share at another cancer center located 25 miles away that has an affiliation with a large academic facility. There I have been able to provide the social worker printed information on different organizations that offer resources, information, and financial support of some kind.

I spoke to women who had no idea that assistance was available for lymphedema supplies, that they could ask for second opinions, the right to know their treatment plans and to have emotional, psychological, spiritual, and financial help. This is where Living Beyond Breast Cancer comes in, the resources from diagnosis to end of life care, just for the asking. Starting here first then onto new information that I learned at the SABCS.

For me, one day, one person, one piece of information, is all I want to share with that woman who feels she is alone like I did in July 2015.