Building community for choosing no reconstruction and for LGBTQ people with cancer: Vonn Jensen

After finishing treatment for stage II breast cancer, Vonn Jensen, who lives part-time in Portland, Oregon, and part-time in Seattle, Washington, planned on writing academic papers about gender and the cancer experience. The papers would explore two topics close to Vonn: Vonn was previously named Emily and identifies as gender non-binary, a person who does not identify as either male or female. Vonn also chose not to have breast reconstruction after breast cancer treatment.

But the plan to write academic papers soon changed. “I realized if I did that, I wasn’t actually going to impact people,” says Vonn, who is 35.

Vonn decided instead to create two online groups to support people in similar situations. One, called Flattopper Pride, shows photographs of people who chose not to have reconstruction after breast cancer surgery, and another, called Queer Cancer, is a support community for lesbian, gay, bisexual, transgender or queer people affected by any type of cancer.

Vonn talked with LBBC contributing writer Robin Warshaw about the experiences of being queer, having cancer, and choosing not to get breast reconstruction surgeries.

Robin: You’ve described your breast cancer experience as making you feel cut off, or isolated. In what ways did you feel that?

Vonn: When I think about my experience being alienating, it has a lot to do with my gender presentation and sexual identity.

A few things set me apart. My age when diagnosed, 31, was 30 years below the median age of diagnosis. Also, being a queer person, the challenges I was facing were a little bit different. It’s not as though I could just go to a support group and find people whose lives were very much like mine, who could relate to my particular experience.

Cancer can be an isolating experience for any person experiencing it. For those of us who are in marginalized communities already, such as LGBTQ or communities of color, it can be especially difficult to find those with whom we can relate. This makes it even more difficult for us to find support than for the average breast cancer patient.

Robin: Did healthcare providers add to that isolated feeling?

Vonn: My surgeon was a queer woman of color, so I was extremely fortunate in that way. But going to support groups and reading articles, any information I was looking for was designed for straight people and didn’t speak to me.

If you’re a person who’s queer or gender non-binary, the medical community is a scarier place than it is for somebody who is normative.  When you’re worried about cancer, the last thing you should be worried about when you go to the doctor’s is if they’re going to be prejudiced against you and say hurtful, harmful things.

Robin: Why did you decide to get involved in online advocacy?

Vonn: Even though I’m not a person who is technologically inclined and I prefer not to exist online, I realized I had to [use the Internet] in order to help people. Visibility was the first phase.

I always knew that I would come out of cancer and refuse to be ashamed of my body and my experience. I posted pictures on Facebook of myself at a parade, walking around topless because it was legal and I could … and it spread across the Internet.

I thought I could harness that interest and get people to read what I was saying. So I intentionally put out photographs of myself and other flattoppers to do that.

Robin: What was your aim for Flattopper Pride?

Vonn: At that time, the pictures you saw of women who had mastectomy and no reconstruction were really brutal. I wanted to get pictures out there that were true to life, that were gorgeous and showed [choosing not to reconstruct] is a body type and a surgical option that is healthy, valuable and viable. So if someone was making potentially life-altering surgical decisions they would see they have options available; they could choose to remain flat rather than undergo [extra] surgery.

I have heard from other patients whose doctors have said things like, “If you don’t have reconstruction, you’re going to be gender-confused.” Or “No man is going to want to marry you if you don’t have breast implants.”

Breast cancer is a very gendered disease. For a lot of people who identify as women, it’s a really hard thing. But I look at the disease from a theoretical perspective, as a rich, productive space where we get to redefine who we are, to redefine what a female body looks like or how we self-identify and what these body parts actually mean.

If you take a woman who has breast cancer and she loses her breasts and maybe then her ovaries, which is how we define a woman, she might still feel very much like a woman. So what does that mean about our concepts of female bodies and socialized gender norms?

Flattopper Pride is not necessarily a queer project. Pride is part of the title intentionally, but it’s meant to be for everyone.

Robin: How did people respond to the images you posted?

Vonn: I heard from people who had never seen another body like theirs before. That was really shocking to me. The emails were gushing and so grateful to see another body that had not undergone reconstruction and finally feel as if they were valid. That was really affirming, to know the work I was doing was impacting people.

Robin: How did Queer Cancer evolve?

Vonn: My intention behind starting a support group was not about my own need. It was about the realization that when I had a desperate need for community, I couldn’t find it, online or in person.

Sexual identity is present in every support group and wherever you go. I went to a local support center and went to couples’ therapy for cancer patients. What people don’t understand is that is a heteronormative space. They’re not advertising it as, “This is a straight couples’ support group,” but that’s what it is, unless they say otherwise.

Right now, Queer Cancer is a group through Facebook.

We’re very careful about who we let in. It’s a place where we know it’s safe and we’re not going to be judged for our sexuality.

Robin: What was it like being photographed shirtless for Glamour magazine’s 2015 article on breast cancer?

Vonn: It was absolutely worthwhile for me to do that to get greater visibility and to help people find community. I was the only one [of 5 people featured] who hadn’t had reconstruction. The reality is that 58 percent of women don’t have reconstruction [according to a 2014 study in JAMA surgery].

Reconstruction was so far out of anything I ever expected to do. I identify as someone who is gender non-binary. I don’t even own makeup. I wear men’s clothes. [Glamour’s stylists] were asking me for specific measurements for clothing and I had this horrible vision in my head of being put in a Barbie dress.

There was just no way I was going to be OK with them showing me wearing a shirt,  I really wanted to use that platform to get the image of a Flattopper out to a larger audience The photographer, Christine Benjamin, had my back. The people at the publication treated me really well and with so much respect. It was a very positive experience.