Bringing Breastcancer.org to the Spanish-Speaking Community

Welcome to The Breastcancer.org Podcast, the podcast that brings you the latest information on breast cancer research, treatments, side effects, and survivorship issues through expert interviews, as well as personal stories from people affected by breast cancer. Here's your host, Breastcancer.org Senior Editor, Jamie DePolo. 

Jamie DePolo: Hello. Thanks for listening. Our guest is Marián Castanondo, the moderator of the Breastcancer.org Spanish language discussion forums. Marián lives in Madrid and has been moderating for 11 years. She joins us today to talk about what she does as a moderator, some of the memorable community members she's met, and why having a Spanish site and the Spanish community is so important for Breastcancer.org. Marián, welcome to the podcast. 

Marián Castanondo: Thank you. Very pleased to meet you.

Jamie DePolo: You, too. I'm very excited to talk to you since you've been doing this for 11 years. That's quite impressive. 

Marián Castanondo: I know. I've been here from the beginning of the Spanish community. 

Jamie DePolo: Yeah. So, how did you, how did you come to be a moderator? How did you get involved with Breastcancer.org? 

Marián Castanondo: Well, you know, life can sometimes be amazing. So, I was studying psychology and specialized in oncology, trauma and crisis, and I was living in the U.S. for one year and that's when I met Melissa. Melissa is our community manager and she told me about her job, she told me about Breastcancer.org, and she told me about this new project of translating the whole site to Spanish and creating and building a new community for Spanish speakers. So, she told me, would you be interested in that when we launch it? And I said, yeah, why not? I mean, let's try. I was so excited to be part of this new project. And also as my job and my studies, I love to help people. So I thought it would be a nice way to start with my studies, with my new professional life this way. I found it amazing. 

Jamie DePolo: Oh, that's really cool. And you know, you said you wanted to help people. Was that really why you wanted to do the job? Was there, was there anything else that sort of motivated you to do this? 

Marián Castanondo: Yeah. As I specialized I was focused on trauma and crisis, and at a certain point cancer diagnosis comes with, sometimes with a trauma or a traumatic stress. And in fact, many of our members relate that. I found it very related to my studies in a certain way. It’s not present, you know, it's not face to face, but through the online community you can also support members dealing with a new cancer diagnosis. 

Jamie DePolo: Oh, absolutely. And so, I know you're in Spain, but I know Spanish is obviously spoken around the world. Do you have a sense, just from the people you've interacted with, like where they're located? Are, you know, are there I'm assuming there's some in the U.S., Spanish speakers in the U.S., some in Spain, but 

Marián Castanondo: Yeah. Spain and also U.S., many Spanish speakers in the U.S., and Colombia, Argentina, those are the main countries where our members come from. But you know, there are over 480 million native Spanish speakers in the world, so they come from everywhere. This is why our community is so rich, right? And diverse. 

Jamie DePolo: Oh, sure. Sure. Sure. That's pretty cool. So, other moderators I've talked to, they've told me about some of the things they've learned from the community members. Would you say you've learned from the community members? And if so, what, you know, what, what are a couple of the, of the big things you'd say you've learned from them? 

Marián Castanondo: Well, I've learned, first of all, not taking my health for granted. I’ve learned also the huge value of an online community. It’s amazing how people can connect from all over the world and share experiences and not feeling you are alone. At some points you feel so alone when you're first diagnosed. So here you can feel that that you are not alone and you can share experiences with other members like you. 

I learned also to, I don't know, to focus on important things of life, to focus on things I can control. And it's those members give me everyday life lessons, you know, in how they cope with a terrible diagnosis like that. Sometimes, how they cope with the end of treatment or how they approach the end of life sometimes, which is sad, but it's also very reinforcing for me, just to be able to help them in those difficult moments, you know. 

Jamie DePolo: Yeah.

Marián Castanondo: And what else? Yeah. I didn't when I first started this job, I didn't know about these online communities of patients like me and I find it pretty amazing. You know, here in Spain, you know, if you live in a small town, maybe you don't know another person with a breast cancer diagnosis person. Maybe you don't. To be able to find somebody and share your feelings, your experiences, and ask questions that sometimes a doctor cannot really answer. You know, questions like personal issues, like how did you tell your kids, or right? So, that's very amazing that we can help these ladies connect to each other. 

Jamie DePolo: Oh, yeah. You know, I've been privileged to be a part of some of the meetups that Melissa does, and it's always, you know, amazing to me how open everyone is to share, like, this worked for me, or oh, you're having the side effect, I tried this. So, it's just like, yeah, it's pretty amazing. 

Marián Castanondo: It's amazing. Yeah. So, that's one of the things that I've learned, the huge value of these online communities also. 

Jamie DePolo: I think it's so important that people know that we have the Spanish site and the Spanish community, because I'm assuming that some people don't. I mean, from your experience, do people find out about it, like a friend says, oh, you should check this out, it's, there's a Spanish version, or something like that?

Marián Castanondo: Well, they come, our members normally come through browser. You know, they make a search. 

Jamie DePolo: Oh. Got you.

Marián Castanondo: So, they land in our community. So, they start reading comments and they find it helpful. So, at that moment, if you want to post, if you, if you want to post something, you need to register. So they register and they create a free account, so they start posting and sharing comments and they make really great connections. 

You know, the Spanish community is not as big as the English community. But I also help moderating for the English community, and I find it so amazing how they connect, how they make really beautiful groups of people. They meet also outside. You know, sometimes they meet, like local groups like from Philadelphia, from California, so sometimes they meet and they share their pictures, their get-togethers, and it’s amazing how they get along and how they help each other.

I find it there are some members that, you know, I've been there for 20 years, so there are also many, many stories of hope, you know, for the newbies, the new members that come, like scared, terrified, and they can read from members who've been diagnosed like 20 years ago, so that also helps them starting with the process, you know, their grief and starting the process. I think it’s amazing how the connections they make. It’s really touching. For me, it has been a great experience. 

Jamie DePolo: That's wonderful. It's so amazing you have a job that you love so much. 

Marián Castanondo: Yeah. I love it. And sometimes they, they come every day and they say hi and they talk about gardening or cooking or politics also. So, so it's a space for them, you know, to express, to feel understood. For me it's really important that we can have it in Spanish also.

Jamie DePolo: Sure. So, to you, it being in Spain, why is it important that Breastcancer.org have a site that's in Spanish and have a Spanish community? 

Marián Castanondo: One, breast cancer affects everyone, so having that said, and the huge population of native Spanish speakers in the world, we have the same right to access, to be able to access to the information and support from our Breastcancer.org medical expertise, articles, information, and support. We want them to get that information so more people can get the support they need. 

When you have a breast cancer diagnosis, talking to others who have been through the same is really helpful. They understand what you've been through, what you're going through, so I think we needed it. We needed this, you know, the Spanish-speaking community, we needed it, to have the same right, to have the same access to this information. Valuable, very rich information from our medical experts. That will also help them make the best decisions. Not only the community, which is peer support, also the information from our main site is great information, very rich. 

Jamie DePolo: Now, would you want to answer that in Spanish? 

Marián Castanondo: Bueno pues, el cáncer de mama afecta a todo el mundo, da igual el idioma, de igual el país de donde vengas. Entonces pensamos que es muy importante que la comunidad hispanohablante tenga derecho también y tenga acceso a la información relativa al cáncer de mama, y que tenga derecho también a poder conectar con otras miembros, otras pacientes de cualquier parte del mundo que saben por lo que están pasando, con quien pueden compartir experiencias, consejos sobre tratamientos, sobre temas del día a día, ¿no? Entonces pensamos que es muy importante que la comunidad hispanohablante de todo el mundo, tengan también acceso a este recurso tan valioso.

Thank you for listening to The Breastcancer.org Podcast. Please subscribe on iTunes or whatever you listen to podcasts. To share your thoughts about this or any episode, email us at podcast@breastcancer.org, or leave feedback on the podcast episode landing page on our website, and remember, you can find a lot more information about breast cancer at Breastcancer.org, and you can connect with thousands of people affected by breast cancer by joining our online community.