Conference advisory committee on why conferences are important, in person or online

The 2020 Conference on Metastatic Breast Cancer will be happening online June 13 and 14. Guiding the program this year has been an advisory committee of patient advocates. They come from different backgrounds and diagnoses and have helped design a conference that will be meaningful to people affected by breast cancer through connection, compassion, and information.

Living Beyond Breast Cancer CEO Jean Sachs, MSS, MLSP, spoke with Sheila Marie Johnson, Abigail Johnston, and Ruth Pfeffer of the conference advisory committee about what the conference means to them (a fourth member Chawnte Randall was not able to join). Watch, read, and join the conversation June 13 and 14.

Jean Sachs (00:00):

Hi everyone. It's Jean Sachs. I'm the CEO of Living Beyond Breast Cancer, and I hope everyone is feeling well and staying safe and taking good care of yourselves during these really difficult times. I am here this evening to talk about Living Beyond Breast Cancer's Conference on Metastatic Breast Cancer. This is a program we have been offering, this would have been our 15th year, it's always been in person and it's always been an amazing weekend of bringing together women and men and their families and caregivers to talk about issues that face the metastatic community. We bring together top healthcare professionals and there's so much networking and community.

When this COVID-19 pandemic started, we realized we couldn't bring people together. It was supposed to be held on April 17 in Philadelphia, and we knew this population of women and men living with metastatic breast cancer were not going to be able to travel.

We quickly began to make plans to hold the conference virtually. We will be holding it the weekend of June 13 and 14 and we've put together a really wonderful program. A lot of that is because of an amazing advisory committee that joined us this year to make sure that we were addressing all the issues and approaching all the content in the most appropriate way for the metastatic breast cancer community.

Tonight I actually have three members of the committee that are going to talk to you as well and tell you what to expect. Unfortunately one of the members, Chawnte Randall, was unable to join us this evening, but we thank her for all her work.

This group of women not only were meeting with us for months prior to the pandemic and had a wonderful conference planned, but then had to pivot with us to figure out how to make this as strong as we move to the virtual format. We're so thankful to all of them.

Tonight I'm joined by Ruth and Sheila and Abigail and I'm so glad that you're with us. I'd love each of you to introduce yourself, tell us how you're doing and also where you're from. I'm going to start with Ruth.

Ruth Pfeffer (02:30):

I'm doing fine, thank you, and I'm happy about that. And I live in Abington township in Pennsylvania.

Jean Sachs (02:37):

I'm glad you're doing well. And how about you, Sheila?

Sheila Marie Johnson (02:40):

Hi, I'm Sheila and I am from Swansea, Illinois, by way of Cleveland, Ohio, and I'm doing great.

Jean Sachs (02:48):

Yay! And Abigail, how about you?

Abigail Johnston (02:52):

I am so happy that the pools are open now. We are in Miami, Florida, and we've been waiting for that. Being able to soak in the pool has been great.

Jean Sachs (03:02):

That's great. I'm sure your kids are happy, and yes, that makes life better.

All of you are living with metastatic breast cancer, and just because you have the same diagnosis we know everybody has their own experience and their own unique perspective. Ruth was diagnosed in 2018, Abigail in 2017, and Sheila in 2009, which is just incredible and will be so reassuring to all the people coming to the conference for the first time who are more newly diagnosed. I encourage everyone to look at our website, look at METSCONF.LBBC.ORG. You can read the full bios on these wonderful women and learn more about their journey.

All of you have been to the conference before, except for Ruth. You know what it's like to be there in person. I'm going to start by asking Abigail to just say, in a few words, what does this conference mean to you?

Abigail Johnston (04:08):

I attended the metastatic conference for their first time last year. And I was part of the Hear My Voice advocacy class. Even though I've been involved in advocacy since I was diagnosed, I had never been in a room with that many other people living with metastatic breast cancer.

It was overwhelmingly positive that here are all these other people living their lives, the same way that I was and they had just so many ideas. I just had such a great time meeting people, especially in our Hear My Voice class.

The content was great last year. I'm really looking forward to the content this year. Although I have just say I'm a little sad not to be able to hug all those people again in person.

Jean Sachs (04:58):

As a first time attendee, were you nervous coming? What were your feelings as you got off the plane and started the weekend?

Abigail Johnston (05:06):

I've been a lawyer for a long time and all of the legal conferences I went to were gigantic like that, so it wasn't as much nervousness about it being a large group of people. It was more, as an introvert, I wasn't sure that I was going to connect very much with the person I was sharing a room with. I think that was probably the thing that was the most daunting last year, but we had a great time.

Jean Sachs (05:31):

That's great. Well, this year nobody has to share a room.

Sheila, you've been to many Living Beyond Breast Cancer conferences and have done many things with us. Tell us what the conference is like for you and why it's meaningful.

Sheila Marie Johnson (05:45):

Well, I started going to Living Beyond Breast Cancer conferences back in 2013. I think my first one was in Seattle and I learned about Living Beyond Breast Cancer on the internet. And I'm like, I was just Living Beyond Breast Cancer, so I went and it's just exhilarating, with so much passion and love. And the conference I went to was all stages, but the women there, they accept you. I'm like, man, I'm stage IV and you know, they're not going to accept me, but they accepted me from where I was and they didn't care what stage I was. It was just love. And from the LBBC staff just pure love and concern and resources and we're here for you and help learn resources.

I was proud of the Young Women's Initiative program, and that literally started my advocacy program, because I was like, man, there are people out there that really care about me. I'm not just saying this because I love Living Beyond Breast Cancer, but it was just exhilarating to find that there are people like me, there are African American women that have metastatic breast cancer, and the connections. I think it was more of the connections for me, to have someone that gets you. Like they get me, they get me when I want to cry or whatever because of metastatic breast cancer. But yeah, it was such an amazing, amazing experience. And I look forward to it every year.

Jean Sachs (07:23):

Yay! I know both of you because you were on the committee this year, you worked on all the details, but at Living Beyond Breast Cancer we always want to make sure the content is really strong from the healthcare professionals and the medical information and also balance that with community. Quickly, what's most important to you? Is it getting the medical information or is it getting the connection?

Abigail, what do you think?

Abigail Johnston (07:48):

It's definitely the connection. I'm not discounting the value of the amazing speakers that are coming to talk about them, the medical pieces, but it's really everybody in the same room who gets it, just like Sheila was saying, that that is the amazing part of it. But the other stuff's great too, and I'm going to be helping with the medical marijuana panel, so I'm excited about that.

Jean Sachs (08:14):

Great, and we'll make it feel connected even though we’re all virtual. I want to pull Ruth into the conversation because this'll be her first conference.

Tell me, what are you most looking forward to?

Ruth Pfeffer (08:27):

Well, it's been a pleasure meeting these ladies because the panel is the first individuals that I've conversed with because of this disease. For me it's sheer enlightenment entering and it was really a pleasure working with the advisory [committee] and Sharon and her staff, and very thorough. I've been on other conferences, but not quite like this and I’m looking forward to it. All of the other three ladies that are in the panel, it's my pleasure to be interacting with them and I love to interact with people. So that's another plus for me.

Jean Sachs (09:11):

Yeah, and we're all missing that.

How about you, Sheila? What are you looking forward to the most?

Sheila Marie Johnson (09:17):

Back in 2009 I first attended my conference, actually I found out about Kadcyla [ado-trastuzumab emtansine] and I went back to my doctor and I'm like, because I started progressing again, ironically, I was at the conference and I said, well, what's up with this Kadcyla? And she put me on it. And for 5 years I was stable. I learned about Kadcyla at the conference.

So I think it's both for me, the connections to be able to share my advocacy and my love and support for everyone, especially to let them know that they're not alone, there are women out there that love them too. But also the medical side of it because, you know, I really just want to learn about the disease because my mom died of it in 2000.

Jean Sachs (10:01):

Right. And you've been battling this since 2009, so you've obviously had several treatment changes along the way. You certainly know the value of being educated and being your own advocate to say, hey, what about Kadcyla? Or what about this next drug?

Just to recap, because we always want new people to come to this conference and I know sometimes it's a little overwhelming to come to a physical program, but even to say it's a weekend in June, do I really want to take the time to sit in front of a computer? I think what you're all saying is it's so worth it to get the information.

There will be live sessions, so you'll be able to actually ask your questions. And then you can watch things later, but being there in real time and we'll have chat rooms and ways for people to connect. The staff has worked really hard, along with your advice to make this a really meaningful weekend.

Again, thank you so much for all of your efforts and we encourage everybody who's listening. If you haven't already, go onto METSCONF.LBBC.ORG and register. If you know anyone who was recently diagnosed or has been living with metastatic breast cancer and they may not know about this, please let them know. And thank you so much for your time this evening. And everybody, as I end all my interviews stay safe, stay well, stay strong, and we will see you on June 13.