If you are a patient advocate or someone impacted by breast cancer and have ever wondered if you can make an impact, simply by sharing your story, you can.
In December I was honored to attend SABCS with the Dr. Susan Love Foundation. I was grateful to be invited into such an impressive and prestigious environment, surrounded by the top researchers and clinicians in the world. As a patient advocate, you just feel lucky to be there.
When you walk into SABCS you can’t help but feel like a little kid on Christmas morning. The conference center is buzzing with energy and incredible people from all around the world gathered to share the latest innovations in breast cancer and all striving for the same thing, to end breast cancer. It is pretty powerful.
I was thankful to be there alongside two other incredible advocates that the foundation invited. We sat in on incredible meetings, learned so much during presentations, and made lifelong connections. I feel like a stronger advocate and a better person after that week in San Antonio.
What I wasn’t prepared for was what was waiting for me in the patient advocacy room.
The patient advocacy room is a dedicated space in the conference center for patient advocates to come together, share meals, rest between sessions, and connect. I am so thankful for the work that the Alamo Breast Cancer Foundation has done over the last 26 years to establish the Patient Advocate Program in partnership with the San Antonio Breast Cancer Symposium.
It is because of the ABCF that advocates are included in the programming at SABCS! They were the first group invited to participate and they managed to get registration fees waived for advocates, which is truly incredible.
The patient advocacy room had “flags” that you could adorn your name tag with. Thoughtful identifiers are meant to help you feel more included and seen throughout the conference. For the first few days, I saw other patient advocates walking around, proudly touting their flags and I was so excited to get mine!
When I entered the patient advocacy room to snag my flag, these were some of the options I saw available:
“Survivor”
“Thriver”
“Caregiver”
“Living with not dying from”
“Survivor to thriver”
I was impressed with how thoughtful these flags were and knew so many people felt really seen by these identifiers which made me feel really happy for them. Unfortunately though, there wasn’t one for previvors or those of us with genetic mutations or a family history of breast cancer.
In the past, I would have accepted this, hidden my hurt feelings, and pretended like nothing had happened. Even though this deeply hurt me and made me feel as if I didn’t belong at the conference.
But not this time.
Dr. Susan Love and the foundation have always made me feel seen. Dr. Love has always recognized and insisted that previvors should have a seat at the table and has empowered me to feel like my story and perspective matter.
So rather than pushing it aside, I shared my personal experience and story, because I knew that if I felt like this, there must be others that felt like this too.
I was overwhelmed by how much compassion and understanding I was met with.
Lare sponsors from SABCS set meetings to enact change and made sure they followed up with me to let me know the updates being made. Other community members stopped wearing their flags (I wish they didn’t, I was genuinely happy for them!) and spoke up in the advocacy room. Michelle and Allie took it on as their personal mission to speak with organizers from SABCS to enact change so the flags would be more inclusive next year. For that, I am so grateful.
As I look ahead to the Dr. Susan Love Foundation’s 11th annual Symposium on the Human Breast I can’t help but be excited and grateful knowing how thoughtful and intentional the Foundation is being.
We had a discussion about the flags they plan on having available for all of the participants and we came to the conclusion that because there are not enough flags to possibly cover every single identifier for all, it is best to have a few flags that are all-encompassing and all-inclusive. When in doubt, a flag for “advocate” is far more inclusive (and makes you feel special, in my personal opinion!).
So to any patient advocate questioning if sharing your personal story makes a difference, I am here to remind you that it does. You have the ability to make a change. To make an impact. I hope you continue to share your story. The world needs to hear it, and our community is better for it.
