Sharing Knowledge: Pairing Experts With Patient Advocates

Jamie DePolo: Thanks for listening to the Breastcancer.org podcast. Our guest is Christine Hodgdon, who was diagnosed with de novo metastatic breast cancer in April 2015 and became heavily involved in the metastatic community after attending a METAvivor advocacy event on Capitol Hill to push for more research funding for metastatic breast cancer. Christine volunteers with a number of breast cancer organizations, including Living Beyond Breast Cancer, METAvivor, and the Tigerlily Foundation. She also has contributed articles and blogs to organizations to raise awareness of metastatic breast cancer and serves as a peer mentor for the Young Survival Coalition.

Before she was diagnosed, Christine loved to travel and was a Peace Corps volunteer in Guatemala from 2011 to 2013. When she returned, she worked as a conservation biologist to save habitat for endangered species. Now Christine is using her science background to create an open access online forum that provides the most recent and scientifically accurate information about breast cancer and its treatment, including metastatic breast cancer, clinical trials, and drugs and therapies in the pipeline. She also has created a pilot program pairing researchers with patient advocates at the San Antonio Breast Cancer Symposium, which is what we’re going to talk about during this podcast.

Christine, welcome!

Christine Hodgdon: Thank you so much for having me.

Jamie DePolo: Well I’m very excited to talk to you about this program, but to start, just so everyone knows a little bit about you, could you talk about — if you’re comfortable — talk about your diagnosis and treatment? From what I understand, you found two breast lumps yourself, and I’m also wondering if you had a family history of breast cancer?

Christine Hodgdon: Yeah, so I actually do not have any family history of breast cancer. We do have a lot of cancer in the family. But I did find the two lumps on my own, which is often the case with younger breast cancer patients. I was 34 at the time. My doctor said I was fine. [laughs] He said, “You know, actually, these aren’t worrisome. You’re too young to have cancer, and you have no history, so come back in a couple of months if they haven’t gone away.” So that’s what I did. I did go back, and this time he was a little more concerned and said, “You know, I think we should just take these out,” which again, is not really standard of care. Typically you would do a needle biopsy, but we did an excisional biopsy, which is kind of like a, I mean it was a surgery, and I had to go under. It was kind of like a lumpectomy, but we didn’t get clear margins. So we did learn after this biopsy that it was indeed breast cancer. So, as is often the case with a diagnosis, there’s just so many unknowns and it was very nerve-wracking to try to understand what was happening and what my body… you know, I felt like my body was betraying me.

Jamie DePolo: Sure.

Christine Hodgdon: Yeah, it was just like, oh my gosh, how can I have cancer at 34? And we learned… the news just kept getting worse and worse, and we learned that not only did I have breast cancer, but the PET scan picked up thyroid cancer as well. And then the final part of my diagnosis was a lung biopsy, which did collapse my lung and put me in the hospital for about a week, delaying my chemo. That biopsy actually showed that the tiny 6-millimeter lesion in my lung was in fact HER2-positive breast cancer. So that biopsy actually gave me the stage IV diagnosis. So I was kind of facing a double cancer diagnosis, one of which was metastatic. So it was terrifying to say the least.

Jamie DePolo: Oh, I can’t even imagine. Can you sort of give me an idea, what was the timeframe? Did this all happen in a couple months? Was it longer?

Christine Hodgdon: Yeah, it really happened probably, I think it was in the biopsy. The first biopsy I had was April 7 of 2016, and I was starting chemo by early May. So it was really less than a month’s time that I got all of this information. And I was working full time, as you mentioned in my intro, I was a conservation biologist. I was the director of programs, so I was really quite busy and was living a full life. I actually had to cancel a trip to Peru that was planned. A lot of trips had to be canceled. That was the first of many, but yeah, your whole life just gets turned upside down.

And we had really just kind of recovered from losing my father to a rare type of cancer 6 years prior, and we were finally starting to have good news where my brother got engaged, my mom was now in a happy relationship after losing her husband, and I got this great job. That’s just how life works, I guess. Everything seems to be going well, and then something throws a wrench into it. So yeah, 2015 was kind of a blur, but I did endure about 4 months of chemotherapy along with Herceptin and Perjeta to hit the HER2, and at the end of about 4 months I was basically NED — no evidence of disease. I underwent another lumpectomy — a real one this time — which did get clear margins, and after that they just said, “OK, we’re going to continue on.” You know, when you’re metastatic you don’t ever actually stop treatment. So I’ve been getting Herceptin and Perjeta infusions every 3 weeks for the last 4 ½ years now, and I do take tamoxifen as well because I also was both ER- and PR-positive, hormone-receptor-positive. So I take tamoxifen to hit another target.

And yeah, I’ve just been kind of living my life, trying to be grateful, feeling like this is bonus time, when you are faced with a diagnosis like this and you live. It’s like, ok, this is extra time and I better do something good with it.

Jamie DePolo: Yeah, well I’m so happy that you have no evidence of disease. That’s wonderful. I’m curious too, you mentioned thyroid cancer. How did that fit into everything? Was that sort of rolled… did the chemotherapy hit that as well, or did you have to do extra treatment for that?

Christine Hodgdon: Yeah, so that is actually a completely separate cancer, and I needed a whole other set of doctors to manage that. And the treatment for that was just a thyroidectomy. So because I like efficiency, I actually did my lumpectomy and my thyroidectomy at the same time. [laughs]

Jamie DePolo: [laughs] I like that.

Christine Hodgdon: I just thought, let’s just do one surgery, and I had to coordinate my breast surgeon and my thyroid surgeon and see if they were on board, and they said ok. You know, it was a little tough, a rough recovery, because my neck was very sore, and the lumpectomy was actually, I had several complications from that as well. But I’m still glad I got everything over with in one shot. And I just continue now with regular thyroid replacement medications.

But it has its own set of challenges sometimes. You know, when I have side effects or symptoms, I really have to go through my checklist. Is this thyroid cancer? Is this breast cancer? Am I just getting old? You know, I’m almost 40 now, so it’s like, is this just part of… you know, my friends that don’t have cancer complain about the same things I complain about, so it’s sometimes hard to parse out where the symptoms are coming from.

But yeah, I feel very lucky, like a cat with nine lives really. It’s like, ok, a pretty amazing ordeal to go through, and really, when you look at me now, I just look like a normal patient — or person, not a patient. And that’s often a common mistake people make is that they say, “Oh, you don’t look sick.” I’m like, well, actually there’s a lot going on with me. I’m stable right now, but yes, I have a life-threatening disease, as well as a chronic one with the thyroid cancer.

Jamie DePolo: Right. You’re kind of like what people talk about ducks, where they look so calm and serene on the surface but then below the water, they’re feet are paddling crazily to keep up and keep everything going.

Christine Hodgdon: [laughs] Yeah. If you know me, you know I’m very energetic, so I often am moving very quickly.

Jamie DePolo: That’s good! I’m curious, you know, you have a couple diagnoses. How do you think they changed you as a person? Obviously, your life has changed, as you talked about, but do you think that you changed as a person at all?

Christine Hodgdon: Oh my gosh, yes. So actually, cancer didn’t even have to affect me to make a change. You know, losing my father to cancer really put everything in perspective.

In fact, you mentioned I had joined the Peace Corps. I had been afraid to do the Peace Corps for many years. I wanted to do it, and I was terrified. I thought, I don’t know if I can handle it. It seems really hard. You have to live in a developing country for 2-plus years, and, you know, oftentimes speaking a different language. So it was just a very daunting thing for me even though I thought it would be really good for me. And when my dad died, I realized, ok, life is short, and I don’t want to have any regrets, and I’m going to do it. So I actually applied within a month, and the truth is, they said, “You’re going to have to wait one year.” Apparently, a lot of people have that feeling that they’re like, I’m going to do the Peace Corps now [laughs]. So they actually made me wait a year, and then I mean to the day I was right back in the Peace Corps office saying, “No, I’m really ready to go. I’m not just doing this because of the trauma I experienced and trying to run away. I’m doing this because it’s something I really want.”

So it kind of gave me almost like no fear. I was really able to look at it and say, look, you only have this one life, so you might as well do the things you want to do. And my diagnosis kind of just sharpened that focus a little bit. I already had it from losing my dad, but then with my diagnosis, the present became even more important to me.

So I’m one of these people that now — I used to be anxious and worried about the future and wondered, “What am I going to see next year?” And now, I really can’t think that far ahead. I really focus like maybe in the month that I’m in and I can’t go too far ahead because I just don’t know what’s going to happen. My cancer can progress at any time. I just have to be prepared for that, but in the moment, if I’m feeling good that day then I have to take advantage.

Jamie DePolo: That makes complete sense. Now, besides your work to increase funding for research on metastatic breast cancer, you’re also very, very passionate about helping people who’ve been diagnosed educate themselves about the disease and keep up with the latest research. And I know from talking to some other folks who’ve been diagnosed, this can be overwhelming because there’s research reports coming out all the time. Sometimes you hear about them in the popular media and they sound amazing, but then when you kind of dig in you realize it’s a phase I study and we may not see anything for people for 10 years. So how do you keep up with all this, and how do you keep yourself on an even keel? Because sometimes like, oh this sounds great, then oh, it’s not great. Or maybe oh, this sounds not so great, but then maybe there’s some encouragement there. So how do you do that?

Christine Hodgdon: Yeah, really good question. I am very overworked, I will say that. I don’t sleep that much because there’s just so much information out there. And I started just kind of looking on the internet. Like, let’s just see what’s out there and see whatever the first articles that pop up. And then I started learning about other resources. There’s so many now, and they offer webinars, and so I used to listen to a lot of webinars and from those I would get more ideas of resources, so I kind of started with the webinar side of things where it’s really broken down. The science is really broken down in a way that is very understandable.

But then I started doing my own research where I — I can tell you some of the resources I use, like Science Daily, I get an email almost, I think it’s every day with something related to breast cancer. And oftentimes in these sort of layman-type articles they will have the actual source of whatever study they were talking about. And so, what I started to do was I went from reading these layman articles to actually reading the scientific articles. And then I saw, ok, there were a few journals that were always publishing about breast cancer, and now I subscribe. A lot of them are free subscriptions. Sometimes the journals are not open access, but a lot of them are. And so I try to keep up with — I really try to read the scientific articles because I am very wary of… sometimes these headlines, like you said, sometimes it’s not even a phase I study, it’s a preclinical study, where it’s not even in humans, it’s in mice. So you have to be very careful about that.

But yeah, there’s a ton of resources out there, and they’re not always patient-friendly, which is why I created my website. Because I thought, well I have a science background, and even for me it’s still kind of overwhelming. But now I’ve gotten really into it, and I can read these articles pretty quickly and get really good information. And what I do is I created a website so that people can go there and it’s kind of a one-stop shop. It covers research articles. I have a calendar of events with metastatic breast cancer specific webinars or conferences. And then I also have a clinical trial searchable database on my website, so it’s really… I’m trying to make it easy for people because it’s already overwhelming with the diagnosis on its own. And if you’re lucky enough to survive all your treatments and get through it, you kind of just want to know what’s out there? What’s next? What’s in the pipeline so that I can be prepared if I do have progression?

So I think we can do better with educating advocates. Research advocacy is a really important tool, and unfortunately there’s not a whole lot of programs out there for research advocacy. But it’s getting… I think there are more and more options, and I’ll just plug Project LEAD is an excellent program for if you kind of have a basic knowledge or if you’re interested in learning a little bit more about the science behind breast cancer, it’s an excellent program. And there are several others as well.

Jamie DePolo: Excellent. Now before we go on to your San Antonio program, can you tell us the address of your website in case people want to go there?

Christine Hodgdon: Oh sure. I forgot to do that. I’m not very good at self-marketing! The address is TheStormRiders.org, and it’s kind of a nod to my father because he loved the Doors. It was his favorite band, and Riders on the Storm was one of his favorite songs, so I was trying to incorporate him. I always try to… he kind of still guides me in my advocacy work. It’s really wonderful. So TheStormRiders.org is the website.

Jamie DePolo: Ok, ok, great, thank you. So let’s talk about this program at San Antonio. It sounds really interesting to me, and you’re pairing researchers and patient advocates. So give me some background. How did this all get started? I can guess it came out of your thirst for knowledge, but I’d like to hear you say it.

Christine Hodgdon: Well actually, it started at last year’s San Antonio conference, and a dear friend of mine, also a metastatic breast cancer patient, is very interested in the science but doesn’t have a science background, she had asked a cancer researcher to walk through the posters with her. And from that experience we kind of just kept building off of that. It was so successful. We started choosing posters and doing webinars with this researcher, and people were very interested but there was no real formal program. We were just kind of doing it on the fly, like we’d find a research article or a poster and say, “Hey, can we put together a webinar and you go through the science with us?”

So we started doing that, and then I went to ASCO this past June and the same cancer researcher was with me walking through posters just by happenstance. We didn’t plan it. We just kind of wandered together, and it was awesome because she was able to explain things to me that I just didn’t… for example, survivorship curves. We walked by a poster and she goes, “Oh, that’s a beautiful curve.” And I said, “How did you know that so fast? How did you know that just by looking? I don’t understand.” And she kind of explained to me, “Well, when the lines are really close together, there’s not much of a difference. When they’re really far apart, it’s a big difference.” And I was like, “Oh!” You know, just like very simple, basic science information, and what was neat is that I was actually able to educate her about breast cancer-specific drugs, for example, and things like that because she’s not a breast cancer researcher, it’s not breast cancer specific.

So we both kind of felt like this was a cool learning experience for both of us, and we tweeted about it. We thought, well, let’s just tweet and see what happens. Well, we got so much response. In fact, people were messaging me, asking me where they can sign up for the program, even though it was not a program. So we thought, alright, we have enough interest. Let’s run with this. We spent most of the summer really working with the San Antonio Breast Cancer Board and also with the Alamo Breast Cancer Foundation. They provide travel scholarships and a wonderful advocacy program for people who attend San Antonio, and we worked with them to develop a proposal, and they approved it. So we’re going to be piloting this program in December.

The way it’s going to be set up is we’re going to have very small groups. We want this to be really small groups, and we want it to be advocates that are actually new to this world of advocacy because we really want to help patient advocates to… we don’t want them to feel overwhelmed in San Antonio. And it can be very overwhelming. So we want to kind of help them break down the science, make sure they understand, and just make them a little more confident when they actually are walking through posters, either at this conference or at future conferences. So it will be comprised of maybe two to three advocates that are new, one patient advocate that’s kind of a veteran — they’ll be the mentor — and then a science expert.

We named the program GRASP, which stands for Guiding Researchers and Advocates to Scientific Partnerships. And the truth is it doesn’t have to be a researcher, we just want it to be somebody from the science and/or medical community. So we have oncologists from the FDA that are very interested. They’ll probably serve as our science experts. And others from different professions like pathologists, and we do have a few researchers. So they’ll be kind of helping to translate, is really what it is, translate that information in the posters. So we are probably going to do 2-3 walkthroughs during some of the morning sessions, and we already have a lot of interest. In fact, we’re already realizing that we are going to have to replicate this at other conferences because there’s so much interest at San Antonio and this is going to be a pilot program.

So we’re already in discussions doing this with AACR, which happens next year, as well as ASCO. So it’s just a very scalable program, and easily transferrable. I mean, this doesn’t have to be breast cancer, it can be any cancer, and the feedback that we’ve gotten has been… I think people are really hungry for collaboration and for learning. And so I was very careful. I didn’t want it to be, like, “ask the science expert.”

The truth is I don’t think it’s just about the advocates learning from the scientists. I think the scientists have a lot to learn from the advocates as well. They may be experts in their field, but we’re experts in being a patient, and we’re experts in advocacy. So I think it can be a nice, synergistic partnership.

Jamie DePolo: Oh yeah, it sounds fabulous! And you said you have a lot of interest for the December program in San Antonio. Do you have all the people selected, or can people still apply? How does that work?

Christine Hodgdon: I’m really glad you asked that question, because what we’re doing is we’re actually going to partner with the Tigerlily Foundation. And they are one of the leading organizations that work with people of color and patients especially in these underserved communities where there’s a high incidence of breast cancer. They really work to address health disparities. And the founder, Maimah Karmo, actually received multi-partner funding to send 22 African-American women from these underserved areas to San Antonio. So what we are planning to do is those participants from her scholarship are going to participate in the GRASP program as well. So that was our first crop of people, was through that.

I have several other people that have sent me messages that I’m going to try to find ways to get them involved as well, but hopefully we can make this a formal part of the Alamo Advocacy program, and we can make it bigger and we can make it something that everybody could be able to join. But for now, just tell me if you’re interested. Send me a message. You can send me a message through that website, TheStormRiders.org. There’s a contact page if you’re interested, and if you’re planning on being in San Antonio, I will find a way to get you in a group.

Jamie DePolo: Great! That sounds fabulous. Now I can definitely see the overwhelming interest from patient advocates, so I hope you’re prepared for that. I guess what I’m wondering, too, is, what has the reaction been from researchers? I could see many of them being interested. I could see some people saying, “Oh, I’m not sure I want to do that.”

Christine Hodgdon: Yeah, really, I’m only hearing from people that are interested. I’m sure there are people that are like, “Yeah, I don’t really want to be a teacher. I don’t really want to do that.” And that’s fine. We’re actually looking for people who are particularly good communicators, but not everyone will fit the role of being a science expert. It’s not just knowing the science. It’s actually being able to communicate the science in a way that makes sense and that’s digestible for a patient that maybe doesn’t have any medical or science background.

So it’s not for everybody, but what I see so far is that researchers are often asking patient advocates to write a letter of recommendation for a grant that they’re applying for, and so a lot of times… I think every patient advocate knows that it often happens at the very end of the process, when you’re not involved at all, and you learn about a grant and you have, like, one day to look everything over and then write a nice letter of support. But I think researchers are also eager to get patients involved earlier on, and I always say, “We’ll do the hard work for you. We can help guide your research in a way that’s going to have better outcomes for patients.” And I think it’s in everybody’s best interest to involve us early on.

So what I’ve heard from researchers is, “Well, how do I meet advocates? I don’t even know where to meet them.” And so this is one of those opportunities. If you want to bring an advocate into your research, this is a great way. There’s people that are going to be coming from all over the country to San Antonio. So you can easily meet up with advocates there.

But this just gives a little bit of, it’s a personalized discussion, and it’s not so formal where, you know, I’ve often feel like, I’ve said before, I personally suffer from the white coat syndrome, where I’m a little bit intimidated by oncologists and people in these high medical and clinical positions. And the truth is they’re just people, and this is a really nice way to break down those barriers and make it more of an equal partnership. So I think yes, I have a lot more interest from advocates, but I do have a lot from researchers as well.

Jamie DePolo: That’s great, that’s great. I am personally very excited about this program. I think it sounds amazing, and I will be in San Antonio this December, so I’m definitely going to be keeping an eye out.

Christine Hodgdon: Oh, good! You can join us.

Jamie DePolo: I would love to! I would absolutely love to. To kind of wrap up, so you have this amazing program. You’re living your amazing life. What do you want people to know about metastatic breast cancer, because I think there’s a lot of different emotions, different viewpoints out there, and you are living with it, so what do you want people to know?

Christine Hodgdon: I want people to know that there is a spectrum of metastatic. A lot of people have this idea that they see on TV, somebody gets diagnosed with metastatic cancer and they’re on their deathbed and they’re dying. And that is true for some people. That’s not untrue. But there’s also this other world of patients that are really living their lives, and yeah, we’re doing it with anxiety and side effects, but we are out there traveling, and some of us are running half marathons — not me, others — but you know, some people are really, really just trying to just live their life as normally as they possibly can.

So I don’t want to scare people, especially early-stage breast cancer patients. I know it must be terrifying to think that your cancer could progress and become metastatic. I know that that must be a terrifying feeling. I personally don’t know anything about early-stage because I was diagnosed metastatic from the beginning, so it’s all that I’ve known. But you know, I think that it’s just important to see that there are many different types of people with this disease. And so you’ll never be alone. There will always be somebody that can be matched to your specific age or diagnosis or treatment plan, or what you’re feeling in that moment. There’s so many of us, unfortunately, so many of us, that you’re never alone.

I was very afraid to get involved, go to a support group or do any kind of advocacy when I was first diagnosed because I had that idea of a very sick patient, and I was afraid to see people that were dying. I was really afraid, and I thought, I’m not ready for that. But the truth is, I’ve met so many wonderful people in this community, and they’ve become my close, dear friends. And I’m just so grateful that I have them in my life. So I want people to know that yes, there is a spectrum, and no, you’re not alone.

Jamie DePolo: That’s very good advice. Christine, thank you so much! This has been really amazing, and I cannot wait to see this GRASP program grow.

Christine Hodgdon: Thank you so much.