Advocates’ Needs Apply: My Experience at the 2014 Breast Cancer Symposium

September 18, 2014

Jody Schoger is a breast cancer advocate and blogger who co-founded the breast cancer social media chat (#BCSM) on Twitter. She received a Conquer Cancer Foundation Patient Advocate Scholarship to attend the 2014 Breast Cancer Symposium September 4-6 in San Francisco, California.

Almost a year and a half ago I went to MD Anderson for my 15th anniversary check-up. But instead of beginning yet another cancer-free year, I returned home with the knowledge that my breast cancer had metastasized to my bone, lymph system, and stomach lining. That’s when I discovered the sneaky, sometimes late-recurring nature of hormone-sensitive breast cancers. I would quickly learn—up close and personal—the nature of endocrine resistance.

Not that I ever considered myself “done” with cancer in any way, shape, or form when primary treatment ended. I’ve been involved in breast cancer advocacy ever since 2000, beginning with peer-to-peer support and participation in fun and not-so-fun runs and moving on to reviewing grants and attending conferences to better understand the disease.

Then two things happened that changed my advocacy forever. In 2008, I started blogging and connected with other cancer survivors via social media. As I started to write about cancer survivorship I found a deep well of survivors, eager to share their experience and support, yet often at odds with where and how to find solid information about their cancers. On July 4, 2011, another cancer advocate, Alicia Staley, and I launched #BCSM—breast cancer social media—the first-ever, weekly chat on Twitter devoted exclusively to topics for people affected by breast cancer. With the addition of Deanna Attai, MD, soon after we were able to attract other doctors and health care professionals. Questions, myths, and misinformation about cancer could be corrected and discussed on the spot, in real time.  

The journey with #BCSM, and my own cancer experience, is what brought me to the Breast Cancer Symposium in San Francisco in early September. Our abstract on #BCSM, presented by Dr. Attai, was part of Thursday’s poster session. This was an incredible opportunity to share the experience of #BCSM with many unfamiliar with social media in general and Twitter in particular. The title of our research, “Can Twitter social media be an effective tool for breast cancer survivor support and education,” demonstrated that participation in a Twitter support group could increase survivors’ knowledge about breast cancer and decrease their “high or extreme anxiety” about the disease to “little or no” anxiety.

Yet the poster session was just one rich part of my experience. Attending the 2014 Breast Cancer Symposium was pivotal to me. Not only was I able to celebrate the benefits found in this early study of #BCSM, but I was equally enthused by the depth of information and perspective each speaker brought to the podium. Every presentation provided a thorough review of breast cancer research, from breast conserving surgery to factors in the management of breast reconstruction, post-treatment surveillance, and reversing hormone resistance. There was an incredible array of “Meet the Professor” sessions as well, where I heard Professor Sarah Hurvitz discuss contemporary treatment of HER2+ disease.

Now that I have wider connections in the metastatic community, access to and understanding breast cancer treatment, especially active clinical trials, is of great significance. Women with metastatic disease don’t always hear about clinical trials that could profoundly influence their lives. Advocacy seeks to rectify this. For starters, we devoted the September 15 #BCSM chat to significant topics from the Symposium. The chat was moderated by Drs. Deanna Attai and Julie Gralow. Read the chat transcript here, or search the #bcsm hashtag or @BCSMChat on Twitter.

There is nothing better to me than helping other women with metastatic breast cancer by providing substantial information. That is the true value of attending the conference.  I will share the information about what I’ve learned—beginning with hormone resistance—in the online groups where I’m connected, on my blog, and in conversations with others. There’s something about being in the cancer community. Everything I learn I pass on. We always pay it forward.