Community conversations are weekly Instagram Lives hosted on @the_breasties by various members of the community.
Breasties Margaret and Shae hosted a community conversation on @the_breasties Instagram Live to discuss the intersection of LGBTQ+ and the Breastie community.
About the Hosts:
- Margaret (@brcaqueer) is a BRCA-positive previvor who recently had a prophylactic mastectomy with flat closure.
- Shae (@hannahlimtiaco) is also a BRCA-positive previvor who recently had a prophylactic mastectomy with flat closure.
Both Margaret and Shae struggled to find a queer community within the BRCA support space and are inspired to find other LGTBQ people in the previvor and Breasties' community. Together they discuss the importance of representation, the need for safe places within support groups, how healthcare professionals can be better advocates and the role of gender expression when navigating surgical options.
Shae and Margaret hope that by sharing their stories, they can continue to help others feel less alone. Below are are some highlights from their conversation:
Queer Representation in the Cancer Support Space
Margaret: I found out I was BRCA-positive about five years ago, when I was 24. I've been doing screening, MRI screening, [and] breast screening, sort of ever since. After years of biopsies and just really traumatic medical experiences, I was like, "okay, it's time I need to start thinking about prophylactic mastectomy."
When I was looking for support groups, I did come across the Breasties but I wasn't sure if it was for me. I really just wanted to see — I was really searching for that intersection between the cancer community and the LGBTQ community.
There were no spaces that felt like those intersected.
Shae: We know how important it is for queer representation. In all things we need to be able to see ourselves and each other. We're all seeking that.
There were queer women who were seeking this in the support groups that are there with cis hetero women in the greater group — they dominate [the group] and it takes, unfortunately, some guts, so to speak, to put up a post saying, "Hey, are there other queer people here? Anybody in the LGBTQ+ community here? I just want to know that there are others [in one of the support groups Shae is in]"
So somebody did and other members who are homophobic/transphobic came into the feed and on the post. They started asking things like, "Why do we need to have these threads? Why is this necessary? It doesn't matter. We all have BRCA."
And so at first I'm like, "Well, maybe it's just a genuine question. You know, let's talk about it." Even with those who aren't queer, they have a lot of sub community threads and groups, they have support for different things for mothers and singles and all these other situations. We were just asking for one thread for the LGBTQ+ community.
Initially, I watched as this post exploded with comments from people coming out and saying, "I'm here. I'm queer, I'm gay, I'm lesbian. I'm transgender. And we were celebrating it. It just turned into this beautiful, just love fest of "I'm here and let's connect."
And when the negative comments came in, it got discouraging. Because there was an overwhelm with that and the really negative even nasty conversations, the thread was temporarily shut down. I got upset with the admins for doing that. When I looked through the comments, I saw people asking specific questions, to help them with their specific experiences that are so different.
We go through different experiences on our BRCA journeys. They were asking questions and getting the help they needed and it was shut down.
Why We Need Safe Spaces for LGBTQ+ Community Members
Shae: So I called out the admins because somebody had to do it. Nobody else was and I didn't really have the energy but it didn't matter. Eventually, this thread was reopened and a new one was made. But every time a new thread is made, more comments [like the ones above] were coming in ... it was just coming from a place of hate. Nothing was genuine or good.
It was discouraging to me and it was discouraging to others. When that new thread was made to try to rectify this, nobody wanted to talk. So they didn't get back to the discussions that they just started. They didn't get answers to their questions. Nobody else was really wanting to come out, actually several people left the group.
I'm in a number of groups that I'm just testing out and feeling out. When I see that, I feel discouraged from posting or participating.
People of our community are not getting the help that they need. It's very upsetting.
Margaret: Even when we try to create our own safe spaces, they're ruined by people who want to take those safe spaces away.
As someone from the LGBTQ community, as much as I would love to put my story out there completely, I don't feel comfortable ... I wish I could reach more people in sharing my story as a queer person with a BRCA gene but it's something I'm scared to make completely public.
Maybe this is me going public. It is interesting that we want visibility, and we want to see stories like our own but those stories are sometimes hard to find because people are scared and people don't feel safe.
Shae: I want you to know Margaret, that you are reaching a lot of people. You found me. I needed at least one queer person and I've had you through my journey. We've had each other.
Social Media Visibility, Flat Closure, and Scar Representation
Shae: I really want to see you and like applaud you because inside of that same support group when members were giving recommendations for who to follow, you came up multiple times.
I was already speaking out just as a woman going through BRCA but after I felt like I wanted to add in the fact that I'm a lesbian and a proud lesbian. I want to speak as somebody as a queer BRCA flattie and make sure people know. There's not a lot of visibility. There's not a lot of queer BRCA content. Let me start helping by sharing my story and then try to find others and bring us together.
Margaret: Visibility is so important and then just finding others like yourself. I know not all people will choose flat closure but for me, as a queer person who chose flat closure, finding the whole flattie community just exploded my world.
There's just so much visibility and the advocacy is increasing. Just seeing people who chose flat closure, or didn't choose flat closure, but are showing that proudly, was so important for me to be comfortable with my decision. And to just see what a chest with scars looks like.
As a member of the queer community, I feel like a lot of my [social media] content is chests with scars, whether that's trans content, or flattie content related to breast cancer. I feel like joining Instagram and getting connected to everyone has really made my choice to go flat feel so good.
Choosing to Have a Preventative Mastectomy
Shae: I was diagnosed with a gene when I was 22 years old — I'm turning 29 this year. Seven years of sitting with this [diagnosis] before going through the surgery.
I knew of the history that was in my biological line. I was sitting in biology class, and I learned that some diseases and things can be genetic. And I learned that about the same time that you know, I learned of another biological person who had breast cancer and that made me go and get tested and realize it [BRCA] was there.
I always knew that I was going to do it [have a risk-reducing mastectomy], I just wasn't quite sure when. My encouragement to feel good about also going flat was watching my mamasita go through it. One of my (chosen) mom's is a breast cancer survivor and so she went through the surgery and did flat closure and she looks great. I saw her go through it so gracefully and so positively and that encouraged me. I looked at her — she's my hero. I had her as an example ... even the scars and [thought] you can be still be a woman and feminine.
Conflicting Feelings Around Surgery Options
Shae: We are so diverse, even within our own community. In us being a part of it, you got anything from lipstick lesbian to butch, somewhere in the middle is maybe a chapstick lesbian. I'm like here I am in the middle. What I had conflicting for me, was it brought up and made me feel something that I haven't been quite comfortable yet with, which is kind of a more masculine side. It's kind of you know, feeling relieved by the idea of losing my breasts. But also a more feminine side that is struggling with it. It was conflicting a lot which caused a lot of mental strain.
From the moment I woke up from surgery, I've been celebrating. I felt this huge relief that highlighted what a dark cloud it was.
I'm so proud of my scars. I'm proud of being the flat woman that I am.
Margaret: I've always felt sort of detached from my breasts. I can't tell if that's because my mom has had breast cancer since I was five. She had a first breast cancer and then a second primary breast cancer a few years later. She was diagnosed metastatic when I was in high school and then passed away when I was 26. I think the whole time I was like, "One day, my boobs are going to be gone." I think I felt just like one day, they're going to be gone because it runs in my family — even before I knew I was BRCA positive.
And now that I don't have breasts, I'm just like, "this is great." I feel great. And I know that's not everyone's experience.
But for me, I feel great in my body, I feel proud. I feel queer, I feel like I'm just living my life. It's been an interesting way to sort of play with gender as well.
Gender Expression and Barriers in Healthcare
Shae: I think that what can be difficult is in exploring gender expression. Sometimes you don't realize what's there that you may be struggling with until you have something like BRCA that highlights it.
A lot of our different experiences also have to do with our experiences in healthcare. I just read a study that said that lesbian and bisexual women are at higher risk of getting breast cancer. A part of that has to do with the stress of dealing with homophobia, transphobia and biphobia.
We have to find affirming healthcare workers and facilities who are going to honor our preferred names and pronouns, who are going to work well with us, and also provide not just the resources, but the care that we need for our different situations.
The baseline is that we need supportive communities and we need representation. We need supportive communities where we can ask our questions and seek out support from other people who are just like us in the community.
Then we need change and sufficient support from solid care teams that are affirming.
Advocating for Flat Closure
Margaret: I've been just so impressed by the advocacy around flat closure.
For those who want it, and for those who choose flat closure, I just want to be able to reach all those people because it's not easy within the medical system.
Because of the advocacy I was clued into, I walked into my surgical appointment and said, "I only want to know my options under flat closure ... don't even tell me about reconstruction."
And they were pretty open to that, which was great and they gave me a few options. Right before my surgery, right before they're about to knock me out, the anesthesiologist said to me, "oh you're not getting reconstruction, maybe you could do it later."
That wasn't a great experience for me. I decided to ignore it but that could be hugely detrimental. That feels huge to me that you could say that before someone goes into surgery.
I'm so glad my surgeon was on board and that my surgeon's team was on board but obviously the anesthesiologist wasn't completely on board.
Shae: Well, that's a big reason why many people end up going through reconstruction, because they feel pushed to do so.
How Can Healthcare Professionals Be Better Advocates?
Shae: It starts with asking about preferred names and pronouns, that goes a long way.
Also, know that screenings are very difficult and stressful. Understanding that certain practices like going through pap smears can be painful for us lesbians. You know and so making them as easy as possible and as stress free, asking the right questions during experiences making it as comfortable as possible. Don't just assume that we're straight until proven otherwise.
Margaret: I think just recognizing that [the BRCA mutation experience] is hard. I feel like with a lot of my high risk in screening for BRCA, I felt like we [healthcare providers and Margaret] never got to sit down and be asked, 'How are you doing with all of this?"
It's hard. It's hard to get a MRI, it's hard to get called back for a repeated MRIs. It's hard to go in and get breast exams every six months. I think just a recognition of the mental toll that it can take. Being mindful can go a long way for us.
Check out the full Instagram Live conversation between Margaret and Shae, below:
