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Jamie DePolo: Hello. I’m podcasting at the 2022 San Antonio Breast Cancer Symposium. I’m honored to have two amazing metastatic breast cancer advocates as my guests. Among her other accomplishments, Christine Hodgdon started GRASP, which stands for Guiding Researchers and Advocates to Scientific Partnerships. The program pairs oncology experts with new patient advocates at conferences to help the advocates understand some of the research being presented.
Stephanie Walker is a registered nurse who had to stop working after 40 years after being diagnosed with metastatic breast cancer. She works with a number of organizations, including the Metastatic Breast Cancer Alliance and Living Beyond Breast Cancer.
This morning, both Christine and Stephanie were part of an educational session on living with metastatic breast cancer at the symposium, offering the patient perspective. Christine and Stephanie, welcome to the podcast.
Christine Hodgdon: Thank you.
Stephanie Walker: Thank you.
Jamie DePolo: So, I’m going to start with Christine. Could you tell me a little bit about your diagnosis, treatments, whatever you're comfortable sharing with us?
Christine Hodgdon: Absolutely. So, thanks so much for having us. We’re very excited to talk to you today after a very exciting session this morning. I was diagnosed in 2015 with de novo metastatic breast cancer. I was actually triple positive. So, I did endure the chemo. I went through surgery, radiation, and I still get Herceptin infusions today, every three weeks, and as well, I’m on tamoxifen. So, I’ve been doing that now for seven and a half years. I’ve been on my first line of treatment, and I’ve been stable ever since. And I kind of consider this bonus time. So, all of this time is now devoted to patient advocacy.
Jamie DePolo: And Stephanie.
Stephanie Walker: Ditto that first part with Christine. Diagnosed seven years ago. Metastatic de novo, hormone positive, HER2 negative. I did go through chemo, radiation. I had bilateral mastectomy without reconstruction. My choice. And currently...was on Faslodex until September, and I’m on Aromasin, which is an AI, and I get scanned in a couple of weeks, and I’m happy because that AI has really decreased the quality of my life. So, I want to go back to my fulvestrant, which is my first-line treatment.
Jamie DePolo: So, I guess, one at a time, if you could tell me how you came to be a part of this panel? Why was this panel important to you?
Christine Hodgdon: This is Christine. I was actually invited by SABCS, and I’m super excited to see that...like, an opening session for this conference, they were going to feature a really important topic among patients, which is a lot of quality of life issues, as Stephanie was talking about, and survivorship issues. And they really wanted an advocate to bring that patient perspective. So, that was how I initially was invited and heard about it, and I was super excited to join.
Stephanie Walker: Well, this is Stephanie, and how I joined is, back in 2019, there was a fireside chat, and Christine took a pledge that, due to the fact that Blacks and women of color aren’t getting, like, the equal treatments or you know, standard of care, she decided that for whatever she was invited to participate in a panel, discussion, or anything, she wanted an equal person there, a person of color, chosen with her. So, I was yanked along with Christine this time, and I’m so thankful that I was the person that...person of the moment, as I will call it, but it was done with intention and love. So, that’s how I got to be a part of this discussion this morning.
Jamie DePolo: Okay. So, I want to ask you both...and I guess I’ll start with you, Stephanie, since Christine has gone first a couple times. Why is the patient perspective so important? You know, we have this conference here. There are a lot of oncologists. There are patients, but far fewer patients than there are oncologists. So, why is it so important to get that perspective in front of the oncologists?
Stephanie Walker: Well, first and foremost, if it weren’t for us, the patients, there would be no need for oncologists. So, getting that little bit out of the way. It’s important. They need to know, in real time, how we’re feeling, what we’re going through. The treatments that we’re taking, are they effective at a lower dose and preserving quality of life for us. Because many of us...you know, it’s one thing to be alive, but it’s another thing to have quality of life while you’re living. So, it’s important for us to be able to have that conversation with the oncologists and letting them know exactly how the patients feel.
Jamie DePolo: Christine, do you want to add something?
Christine Hodgdon: Yeah. I wanted to add to that, too, that I think for doctors, you know, they are seeing patients all the time, right, but there is something unique about letting us sit on a panel to give our perspective. You know, it’s your...you might think you know patients, until you hear what they actually have to say when it’s not in a clinical setting. So, I do think Stephanie made some really great points about why it’s important for them to hear us. I also think it’s important for researchers to understand the patient perspective.
A lot of research right now is done in a silo. Patients are not included. We’re...we do clinical trials, and...but that’s kind of the end of that research spectrum. You know, there’s basic science, translational, and then to the clinic. And so, if we’re only coming in at that very tail end, there’s a lot of problems that can happen, and I can tell you, there’s so many patients that we know that are on these “phenomenal” — quote, unquote — drugs that they can’t maintain, they can’t stay on, because they’re not giving them a good quality of life.
So, maybe if that patient perspective was pulled in a little bit sooner, we could've maybe adjusted the dosages or doing something different, and I think it’s really important for those researchers who don’t get to see patients every day. You know, they’re in a lab all day, and so, when you do...I mean, I have worked with so many researchers now. When they hear from us, it is eye opening for them, and they are so excited to learn from us.
Jamie DePolo: Excellent, and you may have already answered this, but I’m going to ask the question anyway. So, do you think that the patient perspective is taken into account when new treatments are being developed? I mean, it sounds like maybe you worked with some researchers but not all. I don't know, Christine, do you want to start answering that?
Christine Hodgdon: Sure. Yeah. I do think that, in some cases, yes. I mean, I’m working very closely with several researchers that have literally made me members of their lab, which I think is really incredible. I have to admit, I don’t understand all the basic science. It can get very technical, but they always tell me, wow, you just asked this question, and maybe we’re just asking a question that seems very basic to us, but it somehow, like, turns a light bulb on for them.
Stephanie Walker: I think they want to take in account our perspectives. They want to hear from us, and they, like us, are...how do you find that person? How do you find that patient to be able to talk to, as well as the patients trying to figure out how can I get involved with, you know, a researcher to be integrated earlier on in the conversation? And you know, Christine's program GRASP does that remarkably well, but I don’t think a lot of the clinical trial drugs are made for everybody, because, you know, the clinical trial drugs are representative of the drug in which they try the people on, you know? And they need a more diverse population to do that. So, you know, that’s what I’m trying to do...like, is more diversity in clinical trials and also to get us involved at an earlier point in research and not at the end.
Jamie DePolo: Excellent. Okay, and I have one last question for both of you, and you can decide who’s going to answer first. So, what do you hope comes out of your participation in this session? What would you like to see happen as a result?
Stephanie Walker: Well, Christine and I have had this conversation before about siloes. I wish that the advocates, patient advocates, could realize that, you know, when you sit down and you really think about it, we’re all...all fighting for the same thing. You know what I mean? We want the quality of life. We want effective treatment, you know? We want it to work for everybody. We don’t want to go bankrupt. We don’t want to sell our house and live in a tent under a bridge.
We all want those same things, and I just wish that we could get everybody together. And to understand that we’re working for the same group of people — metastatic breast cancer patients — and we’re working for the same reasons, and if we could all get together and...as patient advocates to have that collective voice, to quit duplicating the same services over and over and over again, which is thinning out the pool. You know, come together. Let‘s collaborate. Let’s get it done and quit talking about this forever.
Christine Hodgdon: This is Christine. Yeah, I really share Stephanie’s sentiment about collaborating and working together, and what I would like to see is more scientists engaging patients. I do really feel strongly that patients add value to research. Our perspective adds value, and I think that we can have much more impactful research and trials if we actually are including that patient early on. So, that would be my hope, is that scientists walk away going, wow, these patients are really powerful. There is so much that they can achieve when they put their minds to it, even despite having an MBC diagnosis.
Jamie DePolo: Thank you both, Christine and Stephanie, so much. I really appreciate your time and your insights.
Stephanie Walker: Thank you.
Christine Hodgdon: Thank you.
