Metastatic Conference Features Information and ‘People Who Understand’
Jodi Schmidt writes about her experience attending LBBC’s 2016 conference for people with metastatic breast cancer and tells why she is looking forward to attending this year’s event, Thriving Together: 2017 Conference on Metastatic Breast Cancer, April 28-30 in Philadelphia.
My adult years have been spent as a social worker – so I am certainly no stranger to conferences or support groups. But for me, the goal of attending those was learning new therapeutic techniques or other ways of assisting struggling populations – not as someone who was the client/patient.
I was meant to be the “giver” and you would think that would’ve changed March 2013 when I was diagnosed with stage III invasive ductal carcinoma. Then that October, after months of chemo and then a mastectomy, the CT scan showed spots: bone metastasis. Now my HER2+ cancer had metastasized and was here to stay. I like my oncologist, but the message changed from “we can get this!” to “We’ll work to buy you time.”
I found myself needing answers – and in that search I found LBBC. My first contact was to call the Breast Cancer Helpline, where I spoke to a woman who was in the same boat I was. She encouraged me to look for additional information on LBBC.ORG, and that is where I learned about LBBC’s annual the conference for people with metastatic breast cancer.
Being the social worker, I attended the Living Beyond Breast Cancer Thriving Together: 2016 Conference on Metastatic Breast Cancer in April 2016 to learn what I could do to advocate for myself and other men and woman who now faced this never-ending situation and to see if there were any answers to what I was going to be facing.
What I didn’t expect was to find that the social worker who did not “need” a support group for herself suddenly found the value of being around others who understood. I did not have to answer well-meaning but ridiculous questions of “when are you done with treatment?” or the ever popular “but you don’t look sick?” Now I find myself with connections to women all over the country who are just a message away. These connections didn’t end with the conference. If I have a question about a new med I’m being prescribed, or I just want to chat with people who understand, there are a handful of these women who I still have contact with weekly through the powers of social media. We update each other about scans, tests, medications, trials and give each other words of encouragement. One of the women actually lives not too far away for the occasional lunch date and we are trying to combine forces to bring more MBC education to the area. There is a sense of relief with this – a way to get some trusted advice from someone else who is “there.” I had to start a new medication recently and felt more confident having discussed it with someone who had already been down that road.
I did not expect such solidarity in this informal support – and didn’t realize how much I’ve come to count on it. The information at the conference itself left me with more of a sense of empowerment in a situation that I really felt I had no control over. I was able to have a relatively intelligent conversation with my oncologist about the benefits of switching from zoledronic acid (Zometa) to denosumab (Xgeva) after attending a session on bone metastasis at last year's conference.
Living in Kentucky, Philadelphia isn’t around the corner for me, but I have found the information and connections at LBBC and at this conference to be invaluable. This year, I’m really interested in the session on immunotherapy, having read an autobiography by a woman with stage IV melanoma who was treated with immunotherapy and is still alive after her doctors gave her only a few months. I’m anxious to see what updates they have for MBC.
Jodi Schmidt lives in Northern Kentucky and works as a social worker in Cincinnati, Ohio. Jodi was diagnosed with stage III breast cancer in March 2013. She was diagnosed with metastatic breast cancer to the bones a few months after completing treatment for early-stage disease.
Get the most up-to-date information and connect with others at Thriving Together: 2017 Conference on Metastatic Breast Cancer.