Martha Carson is Thriving Together with MBC

Living Beyond Breast Cancer’s (LBBC) 17th annual conference on Metastatic Breast Cancer is coming up very soon—April 28-30, 2023. Several members of the OMBCL podcast team will be in attendance on the ground in Philadelphia—and we hope to meet some of you there.  But if you’re not able to attend in-person, you’ll still be able to take part virtually via LBBC’s online conference platform. Either way, you’ll have a chance to learn more about bone mets, recently approved therapies, side-effects management, diet, and how to cope with the cost of cancer, and hear from people living with metastatic breast cancer during the conference’s popular MBC patient panel. The hybrid conference will also include virtual hangouts, stretch breaks, a hybrid session on “Reclaiming the body’s healing power through community movement”, and more.

Here’s what Martha Carlson, a senior producer on the Our MBC Life podcast and a member of LBBC has to say about what this conference has meant to her since her MBC diagnosis in 2015.

Nancy Roylance: How did you learn about the LBBC MBC conference and what do you remember from your first time?

Martha Carlson: I first heard about the LBBC MBC conference through Katherine O'Brien. She was my first MBC friend, a neighbor, and an active and effective advocate. She somehow found my email address after a local breast cancer event where I watched her and Shirley Mertz, both with the Metastatic Breast Cancer Network, stand up and ask important questions for those of us with MBC. I was already writing about my experiences, for Cure magazine, but I hadn't really considered that to be "capital A" Advocacy—though, of course, it was since I was doing it to help process the diagnosis for myself but also to educate all the people I knew who thought breast cancer meant curable, always and for everyone.She suggested I apply for the LBBC Hear My Voice program. I was accepted into it that same year so attending the conference for the first time was also my first introduction and training in being an advocate
Being there the first time was unforgettable. First, I met a wonderful woman who was assigned as my roommate, Dorothy Devine. She was older than me and had been early stage, lived in a different part of the country, was a poet, and talked matter-of-factly about her wife. We hit it off right away and remained in touch, including my visiting her in Rhode Island, until she died due to MBC in 2022. I also remain in touch with many other people from that first conference--Janice Cowden, Terlisa Shepard,  Christine Hodgdon, just to name a few. I am so grateful for all these friendships, even though, sadly, some other friends, including Valarie Roybal, Judy Ehrdahl, Mary Roberts, have also died since I met them at my first conference.

I didn't expect to feel so connected to so many people so quickly, but that is what happens at the LBBC MBC conference. You get the essentials out of the way--how long, what subtype, what treatment--and get straight to the realities of living with this diagnosis. There is so much emotion in the room during meals--really something you don't want to miss, if you are able to attend in person. The conference also introduced me to the idea of supportive care in cancer, of taking care of myself intentionally. That was a big deal, as was seeing that I wasn't alone in having teens and pre-teens since it felt, when I searched online for information about parenting, that everything was geared toward parents of young children. 

Nancy Roylance: How many conferences have you attended?

Martha Carlson:  I have attended twice in person and virtually in every year that it was the only option. I regret missing the 2019 conference but it can be costly to travel to conferences and I chose to go to SABCS in San Antonio that year.

Nancy Roylance: What would you like to say to people who are still on the fence about attending, either in person or virtually?

Martha Carlson: Register now! The LBBC MBC conference is the best and largest conference for people living with MBC. You'll hear from premier healthcare providers about medical topics in a way that other conferences don't address. The information is in-depth but also firmly centered on the patient experience. That's because LBBC has supported people with MBC for many years and they listen to what patients ask for. A good example is how this year there is a track for more newly diagnosed patients and one for people who are longer term survivors. That’s an important development because it acknowledges that some of us living longer need to hear different things. That said, most of the programming will pull us all together. I like that LBBC doesn't seek to separate us but to unite us. The conference is also an incubator for good ideas and patient-led actions—for instance, MET-UP was formed in an after-hours conversation among advocates, Marina Kaplan's demographic research began at LBBC, was presented at SABCS, and led to Stephanie Walker's BECOME project with the MBCA and the Black Women Speak Symposium this past year. Expect to meet new people, to hear new things (or old things in a new way)—and to leave with new friendships and a good bit of hope that you can do this!

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For more on LBBC and the Thriving Together conference, be sure to listen to OMBCL’s March 23 episode: LBBC: Silent Voices no Longer