What I Get From Breastcancer.org Virtual Support Groups

Jamie DePolo: Hello. As always, thanks for listening. I’m podcasting from the 2022 San Antonio Breast Cancer Symposium. I’m thrilled to have Vanessa Onsurez as my guest. Vanessa is a member of the Breastcancer.org discussion board community and also participates in the Breastcancer.org meetups. While at this particular conference, she’s been meeting with people about the #ThisIsMBC project. Vanessa, welcome to the podcast. 

Vanessa Onsurez: Hello, Jamie. Thank you for having me here. 

Jamie DePolo: Well, I am thrilled to be able to talk to you. I’ve heard so many great things about you from our moderators. So, to start, just so everybody can get to know you a little bit, if you’re comfortable, could you share a little bit about your diagnosis and treatment.

Vanessa Onsurez: Absolutely. So, my cancer story begins back in 2015. At 38, I found a lump in my breast and decided to get it checked out to have…was diagnosed with a stage IIB invasive ductal carcinoma. With that came all this stuff, -- I call it all the stuff -- like, you know, chemo and radiation. I was on seven years of hormone therapy, and I…considered seven years of cancer free. So, in September last year, 2021, I went in for a gastral issue and was… found lesions on my liver through a scan, through a ultra scan, and had some biopsy and it just came back that I was diagnosed then with metastatic breast cancer. Yeah. 

So, now I’m currently…I went through some extensive chemo immediately. I did some carboplatin and Gemzar and I completed that in February and began my first line of treatment, which is Ibrance, 125 mg Ibrance with letrozole and that’s what I’m currently on. It seems to be working. Fingers crossed. I do have scans next Wednesday to determine how…how we’re moving along. I’m still pretty early in treatment so we’re doing scans every three months, which is essentially the only way to determine if the treatment is working or not. So, that’s what brings some of that, what they call “scanxiety” to the table. A discussion of, you know, you never know if it’s working or not until you get those scans to kind of give you an idea. 

Jamie DePolo: Absolutely. Are you feeling okay? Any side effects?

Vanessa Onsurez: I’m feeling good. I mean, two weeks ago I had oophorectomy surgery. 

Jamie DePolo: Two weeks ago?!

Vanessa Onsurez: Two weeks ago.

Jamie DePolo: That seems very recent to be walking around at a conference.

Vanessa Onsurez: I’m fine. 

Jamie DePolo: Okay.

Vanessa Onsurez: I would never pass this opportunity up. I had my ovaries and fallopian tubes removed and I’m recovering well. Things seem good.

Jamie DePolo: So, tell me…I want to ask a little bit about what you’re doing here at the conference. I know you’re involved in the #ThisIsMBC project, which I’ve talked to other people about in past years’ iterations, but I know each year they kind of do something different. So, tell me what your involvement was.

Vanessa Onsurez: Yeah. So, when I first was diagnosed last year, I was incredibly angry at the world. I really didn’t even talk to anybody or tell anyone about my diagnosis. I was actually just trying to process it and started chemo. I was really quiet. When the new year came around, I said, okay, I’m going to try to be part of this new way of life and I joined a Facebook group for specifically metastatic breast cancer patients and thrivers. And there was a form that went out from someone that said, “Hey, anybody want to go on a retreat to Tennessee, all paid?” All I heard…all I saw was an all-paid resort retreat and I said I’ll do it. I mean, I might as well. I signed up and I was…I signed up and I got chosen to go to this wonderful retreat in Gatlinburg, Tennessee, where I met these 12 other women all living with breast cancer and…with metastatic breast cancer.

The campaign that we did… that I participated in was interviews via video and photography, really truly getting to the root of what is it like living with metastatic breast cancer. I’m not sure if anybody knows, but many funds are not dedicated to metastatic breast cancer. As a matter of fact, just a small percentage goes directly to that research. Most of the research goes towards prevention and those sort of things, but not to the patients that already are metastatic. So, this is an opportunity and a platform for us to say, don’t ignore us, we are here, we want to live. This is important to us, and we want some more research done. We’re tired of seeing each other die this early. That’s what it boils down to.

I met some amazing strong women who I…and I was given this platform to really speak about my life as a patient and now as an advocate. I belong.

I’m a 45-year-old Latina, very proud Latina from the LGBT community and I had noticed there was not a whole lot of specifically directed towards our community, and I felt why wouldn’t I take this opportunity to really create a platform…you know, to really utilize my platform as awareness because we are also, you know, being…even if we all have the same diagnosis, I’m someone who still feels very alone in my world because I can’t relate to a lot of these women or people. You know, I want to be able to relate and I would want…I wouldn’t want anybody else to feel the way that I was feeling. Like, I can’t relate to the straight women and children. I need some…I would love to be able to have a conversation with somebody else who may feel just as lonely because there aren’t very many programs out there for the diverse community that exists right now.

Jamie DePolo: Mm-hm.

Vanessa Onsurez: So, yeah. I’m very…I’m really excited about where my future is going and these opportunities and I’m so grateful. I really would not have done it without Breastcancer.org either, because their support groups are just amazing.

Jamie DePolo: Well, tell me a little bit about that. How did you find Breastcancer.org?

Vanessa Onsurez: Well, after my retreat in May, I said I’ve got to go out and date the cancer world and find out where my people are at. Where are my people at? So, I just…I joined a…I went through all the…you know, I kind of typed in breast cancer meetups and just went from there and I just started interviewing all these different groups to see where…where do I find an LGBT support group, metastatic, you know, based, and there wasn’t one.

So, I found a lovely, amazing…I found through Breastcancer.org, they have amazing meetup groups that met up several times during the week and they were specific to metastatic breast cancer. I said let’s go there, and when I was in that group with metastatic, I found they had an even smaller group for the 45 and under, which again, is another category of women that, oh, wow, I belong in this group.

So, I’ve met some wonderful women and I’ve met a couple of unicorns. That’s what I call them. You know, they’re hiding out in there. It’s so wonderful to be able to see how inclusive Breastcancer.org is to everyone, and so grateful for the virtual meetups throughout the week, at different times. I believe they just recently created one specifically for the West Coast. I’m in California. So, sometimes a lot of the East Coast support groups are held so early in the day, and I am young, I still work a full 40-hour job. So, for me to have to cut out or you know find time for that…I really appreciated they’re accommodating to everyone. 

Jamie DePolo: Yeah. That’s great. I know it is hard with the time zones to adjust. So, what would you say, not to keep focusing on this, but have you, I know clearly from your comments you’ve gotten camaraderie out of these meetups, but would you say you’ve learned things? Like what have you gained? What do you get out of them?

Vanessa Onsurez: I’ve gained...when you’re traveling through this disease, and you’ve got others you can bounce your ideas off of as far as treatment plans and what has worked for you, how have you dealt with the side effects? It’s very informational. It’s very educational. I learned a lot about the different treatment lines. You know, side effects can be huge, and can be almost very discouraging to want to continue. So, if you find someone that’s on the same treatment line that you are on and they have some tips on how to get through some of these difficult parts, you know, it’s been incredibly helpful. During the actual group, the virtual sessions, the moderator posts links to articles that have even a more in-depth look at what you might be looking at. So, it’s incredibly helpful that somebody…I have found this is the only group that does that. So, it’s nice. It’s really just thoughtful. It’s really incredibly thoughtful. I appreciate that.

Jamie DePolo: Excellent. Have you…I’m wondering have you sort of pulled other people into any of these meetups or is it really people kind of need to find it on their own to get the most out of it?

Vanessa Onsurez: Oh, I have told everybody that I find my little…anybody that, you know, like 70% of the women that went on our retreat were under 40 and I was very like, come join this group with me because I find it would be really helpful to not feel so out there. I mean there’s tons and so many support groups. There’s no lack of that. It’s just about finding the one that just really fits with you. I felt like I was dating because I would walk into a support group and kind of take a look around the room and cross it off my list. Nope, not that one’s not going to work. Let’s move on to the next one. 

Jamie DePolo: It’s not the right swipe.

Vanessa Onsurez: It’s not the right…nope. Let’s move that. Move on and go onto the next one. But it was…it took time. I can’t even tell you how many I went through before I found Breastcancer.org, but I love that it’s more inclusive. Like I said, Breastcancer.org was the only one that I found that doesn’t have metastatic in their name, but does a lot for the metastatic community.

Jamie DePolo: Mm-hm.

Vanessa Onsurez: And that’s, I think, for somebody as a metastatic patient and for somebody who knows…who knows people all over the country that are metastatic. It’d be, you know, they were like, what, you found a group that is, what? I’d go, yeah, 45 and under. It’s like…and it’s not…it’s really nice and intimate, but it’s big enough where you can talk and bounce ideas off of and talk about what you’re going through.

And you can form a kinship. I have to say, it’s kind of scary when you find a kinship with people because you know where their track is headed. We all know. You know, we’re all fearful about getting connected to someone and attaching yourselves and having a relationship with someone that, you know, may pass away from the exact same thing you’re going to pass away from. So, it’s just sort of…there’s this…there is a lining…silver lining to everything, but there’s also a dark cloud that sometimes we face. 

Jamie DePolo: It’s bittersweet. 

Vanessa Onsurez: It is very bittersweet. But I think that was huge for me and I didn’t want to attach myself to anyone or get connected to anyone. I don’t want to be sad, but I also don’t want to…I think it’s so important to stand up and speak for those that don’t…didn’t get to. 

Jamie DePolo: Yeah.

Vanessa Onsurez: I feel like I’ve really been given an opportunity that is…I can’t turn away from. As someone who has a therapist who says, “What is your legacy you’re ready to leave behind?” What does that mean? 

Jamie DePolo: Well, you’re doing it. 

Vanessa Onsurez: And I think that that’s I have found where…how to be helpful, wanting to do better and leave something behind so others will feel hopeful and not so alone. It’s so important for me to feel that you’re not alone going through this. It’s already tough enough. 

Jamie DePolo: Absolutely. Vanessa, thank you so much.

Vanessa Onsurez: You’re very welcome. 

Jamie DePolo: Thank you.