By Kathleen Friel
I had the great fortune of attending the Living Beyond Breast Cancer (LBBC) Metastatic Breast Cancer (MBC) Conference from April 19-21, 2024, in Philadelphia. I was able to see several members of our SBC family in person, and my mom joined me on the trip!
Seeing people in person is such a treasure.
This year, I was a participant in LBBC’s Hear My Voice (HMV) advocacy training
program, which dovetailed with the conference. About 30 people were selected to be in the 2024 class.
If you applied and didn’t get in, keep trying! It took me a couple of tries. We
met as a class for about 10 hours of Zoom-based and offline training in April.
We learned how to be stronger advocates for ourselves and our friends with MBC in
many ways. We learned about ways to advocate to legislators, encouraging them to
increase research funding for MBC and pass laws that will bring people with MBC more
medical benefits. We learned about research advocacy – serving as grant reviewers or
patient advocates in research studies. We spent time brainstorming fundraisers and
social media education content. We laughed a lot, we shared our stories, and we grew
close.
At the LBBC conference, we sat together, with our caregivers. It was amazing to meet
people in person. Cancer is a strong bond. Similar to in our SBC family, we can meet
someone and quickly dive into the intimacies of living with cancer. Everyone in HMV has
MBC, which I think gives us even stronger connection. We’re eager to work hard to
advocate for the MBC community, while also living with the side effects and uncertainty
of MBC. We don’t know how much energy, time, or even life we’ve got in our future. I
found it very uplifting to know these lovely friends who are committed to making a
difference for others in the MBC community amid their own MBC struggles.
We also had a class Spotify playlist! I’m not sure if I correctly submitted mine, though
here it is. The writer and singer, Nightbirde, died of MBC in 2022, after shining on
America’s Got Talent. I honor the bravery of our class, and all living with MBC.
Nightbirde’s definition of bravery is to live authentically. I just love her music!
The LBBC conference was short but full of information and connection! All presentations
are online for viewing! We heard presentations from panels of people with MBC, sharing
their tips for navigating this wild ride. One panelist brought me to tears – diagnosed with MBC at 18 years of age. Unreal. She just got married and seems to be doing quite well.
Every year, there’s a presentation about the newest medications and clinical trials for
people with MBC. It’s always a session that brings me mixed emotions. It’s great that
new drugs are being developed. I have several dear friends on a drug that was only
approved last year, and the drug is working for most! Still, the timelines give me chills.
Drugs still don’t work for very long, as MBC is like an evil shapeshifter that mutates to
become drug-resistant.
At one point in the conference, a speaker asked people to stand up based on how many
years they’ve lived with MBC. Lots are at 1-2 years. Once the speaker got up to 7-10
years, not many stood up. But some did! And then the super responders got a standing
ovation, those living 15, 20, or more years with MBC. It was a mix of hopeful and
sobering to me, as I near my 6 th anniversary of diagnosis.
