Breast Health in the LGBTQ+ Community

[00:00:00] Adam Walker: Support for The Real Pink Podcast comes from Merck, from Susan G. Komen. This is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.

Welcome to the Komen Health Equity Revolution podcast series. Each month we invite in patients, community organizations, healthcare partners. Researchers and policy advocates to discuss strategies and solutions that drive the health equity revolution forward for multiple populations experiencing breast health inequities.

Happy pride Month everyone. We know that early detection of breast cancer can save lives. Although screening mammography rates for lesbian and bisexual women are similar to rates for heterosexual women. Some lesbian and bisexual women may still not get regular mammograms. This may be due to lack of health insurance, a perceived low risk of breast cancer or concern due to past experiences of discrimination or insensitivity from doctors.

These and other barriers make screening mammograms even more important. In today’s episode, Nancy, a stage one triple negative breast cancer survivor and her wife Viviana. Talk about the importance of breast cancer screening, how it impacted Nancy’s breast cancer diagnosis, and the role of family history in the future of their health. Nancy and Viviana, welcome to the show. 

[00:01:28] Nancy Sisneros: Hi. Thank you for having us. 

[00:01:30] Adam Walker: Well, it’s so nice to meet both of you. I’m really excited to talk to you about this. Nancy, let’s start with you. You learned of your diagnosis from a regular screening mammogram. Tell us your story and tell us about your cancer experience.

[00:01:43] Nancy Sisneros: Well, I learned about getting my screening because my mom had actually passed away from breast cancer. She waited a little too long. By the time she actually found out she had breast cancer, she was already at stage four. She did go through chemo and radiation and twice. And so unfortunately it, I mean, it worked the first time. The second time it came back and you know, unfortunately she passed away from it. But even before my mom had passed away from breast cancer, she had a sister as well who had breast cancer and she actually had her breast cancer. I know it was like in her early forties. So we kind of, when my mom ended up having breast cancer, we were like, “Ok, this is, this has to be more than, you know, a coincidence that her sister had it.” my aunt had it, and then my mom had it and they actually had it at a young age. My mom was 48 when she was diagnosed and she ended up passing away when she was 51. So when my mom passed away I actually was referred from my gynecologist to actually get the BRCA gene, the screening, to see if I had BRCA.

So I got tested for it and it did come back that I have the BRCA genes, you know, for the cancers. And so my siblings, my sisters, they also had screening and they had the BRCA gene as well. So as soon as we found out, well, my older sister, she had done her preventative measures. So she had her double mastectomy, and then I know she had a hysterectomy or total hysterectomy, so I kind of delayed my total hysterectomy because I was like scared. It’s kind of like you’re scared of the unknown because it’s like you’re, these are your organs or your parts that you feel like make you a woman and if they’re being taken away, it’s like, I, this is the way I felt like if I was going to be less of a woman or it’s just more of the unknown. So I did delay my total hysterectomy. I ended up having my total hysterectomy two years ago. And when my mom passed away, I was already starting to have my mammograms every six months. Just to make sure everything was okay. After my total hysterectomy, we had the process or we were already speaking to plastic surgeons like, because I was already going to go through the process of getting my double mastectomy just as a preventative measure.

Yeah. Last year in April, I had my mammogram and by the end of April is when they had called me back because they had found something. And that’s when I had a, when was it? 

[00:04:35] Viviana Sisneros: You had a biopsy and then on May 5th you were diagnosed with breast cancer. 

[00:04:38] Nancy Sisneros: Yes. So I had my mammogram and then my my ultrasound, when I had my ultrasound, they had asked if I wanted to wait six months and just keep an eye on it.

But because of my family history, I was. It made no sense to do that. So I had my biopsy and that’s when it came back that I was at stage one breast cancer. So, I mean, it, everything went by so fast. Like April is when I found out. May is when, or no, May is, May 5th was when I was diagnosed and May 26th was when I had my double mastectomy. So I mean, everything. Was super fast. And then after that is when I started having my what was it? My chemo.

[00:05:29] Viviana Sisneros: Your chemotherapy treatments.

[00:05:30] Nancy Sisneros: Chemotherapy treatments. 

[00:05:33] Adam Walker: Wow. That does sound incredibly fast. So let’s talk about your community for a minute. In the Latino community as well as in the black community, breast health may not be talked about as much as in other, as much as other health issues, but breast cancer does run in your family like you talked about. So how has that changed how you and your family talk about breast health or about health in general?

[00:05:55] Nancy Sisneros: I mean, because we know that it’s like a genetic thing that runs in our family. So, I mean, I know, well, my older sister, she already did her preventative measures. Some of my younger sisters, I know one of them, I believe she already had her, yes, she did, she had her double mastectomy. So it’s like we’re pretty open and we try not to brush it off because we know, you know, what happens or what can happen. So it’s better just to be preventative and do what we have to do. 

[00:06:31] Adam Walker: Yeah. That’s great. That’s great. So, so Viviana, let’s talk about you for a minute. So, how has Nancy’s diagnosis affected how you look at your own breast health, and how does that impact the conversations you have with your family about breast health? 

[00:06:45] Viviana Sisneros: And honestly, I’m older than her, so I’ve been getting my breast screened even while being in the service. So, so it’s not really taboo per se. I mean, we have them, we need to get them checked. So we’re pretty much open, even with my family. I mean, I don’t have any sisters, even at a younger age. My mom has always told me, you know, “Hey, make sure you take care of yourself. You know this, these are the things that could happen.” And my mom didn’t have breast cancer, but she did have nodules and she did have biopsies, I believe in her forties. So, You know, it’s never been, it’s never been brushed under the rug. It’s always been very open. So, you know, so I’ve always taken my preventative measures as well in getting screened. And as a matter of fact, we actually had a, we’ve had to schedule an appointment already because of course, the VA told me, “Hey, it’s time you gotta go get checked.” And I’m like, “Absolutely.”

[00:07:39] Adam Walker: So that’s good. That’s good. So, so then this next question is to either of you and please, Answer to whatever depth you’re comfortable. But do you mind me asking, how did this diagnosis impact your relationship as a couple?

[00:07:58] Viviana Sisneros: If anything, I believe it’s actually brought us closer. Not that we weren’t ever close, because we were, but I think fact, this it made us closer in different aspects, whether it be spiritually, mentally, even physically because she did go through so many changes, you know, just body altercations, you know, like she said, you know, having these things removed, you know, making her feel like she may be less of a woman. And so on my end, it’s letting her know, “Hey, regardless of you having your breasts or not, that doesn’t identify you as an individual. It’s, it just makes you even more beautiful because of the things that you’ve gone through.” so I think in that sense, it’s just made us closer in that aspect. 

[00:08:47] Adam Walker: Nancy, anything you want to add to that? 

[00:08:49] Nancy Sisneros: I’m like, ugh, try not to cry. But I just, I appreciate so much, like just the little things that she would do for me. It’s. Certain things that I wasn’t able to do for myself. Like she was just on top of everything. So it’s like I, now that I’m getting better. It’s like I try to do as much as I can for my wife as she does for me, and it’s like, I just appreciate everything shes done. Like she’s done so much and she, sometimes she doesn’t see it, but I’m just, Baby, you do a lot. She’s been my biggest advocate, like there’s like certain things I wasn’t able to do, she was right there for me.

[00:09:39] Adam Walker: I mean, Viviana, you do seem pretty amazing because you got all the details, like right there. 

[00:09:42] Viviana Sisneros: Oh yeah.

[00:09:42] Adam Walker: That whole, you know, you know the whole history, all the dates, I mean, you got it all squared away. So, I love that. I love that. And so, and so inspiring your, you know, your answer there is so inspiring.

So let’s talk a little bit about the lgbtq plus community. In the LGBTQ plus community, it can be difficult to find culturally responsive providers who understand how to support you as a member of that community. How did you go about finding breast healthcare providers that would be culturally sensitive?

[00:10:12] Nancy Sisneros: Well, the providers that I had, my breast doctor I had seen, I’ve been seeing her for years, so, Thankfully I haven’t ran into any issues like, I mean, normally when I would go to my appointments, of course my wife would always be there with me and they would ask like, “oh, who’s this?” And I would introduce her and, “oh, this is my wife.” and that would pretty much be it. Like we’ve been very lucky. I’m very thankful that I’ve had the providers that have been assigned to me because I haven’t had any issues at all with any of like they’ve been. Any questions we had, they were quick to answer. My wife, of course, she would want to get her printouts because she wanted to read everything about what treatments I was getting, what medication they were giving me. And I mean it, they wouldn’t think that she would read them, I think so when she would, we would come back to our appointments, they would be surprised. I think they would be like surprised how much she actually did know, because. I mean, I kid you not, she was like on top of everything.

[00:11:18] Viviana Sisneros: Yeah. The providers we’ve had like been, they’ve been great. They’ve been very great with us. They’ve never like segregated or that, that was never really, never brought up. I mean it was just more like, oh, who’s this? because I mean, you go to any appointment and you bring someone along with you and they, and the other person wants to go in with you, they’re going to just want to identify because you know, the whole HIPAA aspect.

But they. It’s not even been an issue. It’s just more of like, “oh, she’s your wife. Ok, cool. Come on, let’s go.” You know? And they would address me as wife or by my first name. So it, it never felt awkward, you know, from her male doctors to her female doctors, to nurses. Like we’ve been treated as, I guess, as any other person. I mean, from our experience. 

[00:12:03] Adam Walker: I love that. I love that. I’m glad that’s been your experience and I appreciate you sharing that with us. So that’s great. And you again sound amazing with the details, like, oh my gosh. Like, I wish everybody could have somebody like you sitting there with them in their appointments, because that’s what, you know, people need, they need that support. So, so last question then and maybe a little more broadly, what would you say to encourage any other Latinas especially anyone who’s nervous about getting a screening mammogram? 

[00:12:33] Nancy Sisneros: I mean, if you need someone to, I mean, of course when you’re getting the mammogram, Can’t have another person with you in there, but just to have a friend or family member just go with you and they could sit in the waiting room or wait for you outside. Just don’t wait it off. Like, I understand it, it is, well, I’m not getting them anymore, but they do it, it hurts or it’s uncomfortable, but it’s just for a few seconds or for a minute, but –

[00:13:00] Viviana Sisneros: A few minutes of discomfort. Discomfort can save your life. Yes. You know, I. As beautiful as boobs are. They can kill you. In all honesty, just get it checked. Have a support group. Don’t let it be taboo. I mean, th there’s obviously the rate is rising, I would say, for breast cancer, you know, when I’ve done my research and just reading about it. But it could really save your life. And as far as like, if people are worried about insurances, I mean, there’s other subsidies out there, you know, there’s.

There’s so many things out there for women to help offset the cost of getting a mammogram and believe it or not, so there are a lot that will actually accept payments you know, you don’t have to fork it out all at once and stuff. And so I would say just make sure you get it done. I mean, look into your family history, talk to your parents and stuff, whether it be your father’s side or mother’s side, just to see what line of history, cancer does not discriminate. They don’t care about your sex, your origin, you know, your sexual orientation. It’s there. So, yeah. 

[00:14:05] Adam Walker: That’s right. Well, Nancy, Viviana, you are an inspiration of a married couple. Nancy, thank you for just sharing your story with us today. Viviana, thank you for just being you, which is obviously pretty amazing. So, thank you. Thank you both for joining us on the show today. 

[00:14:24] Nancy Sisneros: Thank you for having us. 

[00:14:25] Viviana Sisneros: Yes, absolutely. 

[00:14:26] Adam Walker: If you or someone you love listening to this episode need to schedule a breast cancer screening, call the Komen Breast Care helpline at 1-877-Gokomen support for Spanish speakers is also available.

Thank you for joining us for another episode of the Komen Health Equity Revolution podcast series. We’ll continue to galvanize the breast cancer community to support multiple populations experiencing breast health inequities to advance and achieve breast health equity For all. To learn more about health equity at Komen, please visit Komen.org/healthequity

Thanks to Merck for supporting the Real Pink podcast.

Thanks for listening to Real Pink, a weekly podcast by Susan G. Komen. For more episodes, visit realpink.Komen.org. And for more on breast cancer, visit Komen.org. Make sure to check out at Susan G. Komen on social media. I’m your host, Adam. You can find me on Twitter @AJWalker or on my blog adamjwalker.com.