From breast cancer artistry to stage IV metastatic breast cancer advocacy, Melanie Penn’s story is so much more than the pink-ribbon breast cancer narrative. She believes in the power of sharing your story, and her story begins with the assertion that she is not a survivor. Her distinction that she underwent a preventative mastectomy after testing positive for the BRCA1 gene is how Melanie claims her story, and the language she uses to do so is how she advocates for herself and other members of the breast cancer community.
Not everyone’s experience with breast cancer is the same, despite what monolithic depictions of the disease might have you believe. What artist, breast cancer activist, and New York Breasties Ambassador Melanie Penn wants everyone to understand about her breast cancer journey is that she’s not a survivor.
“I have never personally been diagnosed with breast cancer. My mother is a 29-year survivor who tested positive for BRCA1 some years post diagnosis. I was tested at 25, confirmed positive as well and at 30 (2018) underwent a prophylactic bilateral mastectomy,” Melanie explained.
Popular breast cancer terminology would categorize Melanie as a “previvor”, but Melanie doesn’t classify herself in that category either. Melanie Penn distinguishes her breast cancer survivor story by simply saying she underwent a preventative mastectomy after testing positive for the BRCA1 gene, and the distinction makes all the difference.
Every step of Melanie’s experience, from her diagnosis to the community and artwork she’s cultivated afterwards, has lent itself to helping other members of the breast cancer community distinguish their own terminology and define their own their stories, regardless of whether they fit the typical mold of breast cancer narratives.
Big Decisions: Breast Cancer Survival and Prevention Instincts
Breast cancer touched Melanie’s life very early on. Her mother was around 39 years old when she was diagnosed with the disease, her tumor so large it had likely been developing in her breast for years. At the time, Melanie was only four, making many of her early memories tainted by the aftermath of draining doctor’s visits and treatments. “[My mother] had a unilateral mastectomy at that point, went through chemo, and was on Adriamycin Cytoxan. So, I have a lot of childhood memories of her being incapacitated from treatment...it was really rough,” Melanie recalled.
It was the early nineties during Melanie’s mother’s breast cancer treatment; early trials of BRCA gene testing were underway. Melanie’s mother’s results revealed that she carried a risk for contralateral breast cancer. In other words, despite having endured both a unilateral mastectomy and a hysterectomy years ago, a tumor could still show up in her remaining breast. After years of strenuous deliberation, Melanie’s mother had her breast prophylactically removed.
“My mom made both survival decisions and preventative decisions for her own body,” Melanie said. “Her doctors [then] kept telling her, ‘You have to have your daughter screened when she's 25.’ And I was hearing that from teenage years on: ‘As soon as you're 25, you’ve got to get screened.’ So, I had a feeling that [the genetic screening] was going to come back positive.”
And she was right. In 2012, Melanie learned that she carried the BRCA1 mutation. After witnessing the turmoil of her mother’s battle with breast cancer, Melanie knew she wanted a preventative mastectomy. Unfortunately, “outdated information” from surgeons swayed her certainty.
The Learning Curve
“In 2012 I was told [by surgeons], 'We'll do screenings, we'll catch it early because you're being monitored so carefully. You can wait on surgery until you're 35,’” Melanie explained. “Everyone stresses - get married first, have babies, breastfeed...whatever. And [they also say], ‘You're young, think about it.’ It is a major surgery; you should think about it. But, you should think about it given the correct set of information.”
From 2012 through 2017, outdated concerns, like the ones Melanie mentioned, informed her surgeon’s advice to hold off on a preventative mastectomy. However, when she switched surgeons in 2017, Melanie received entirely new information that confirmed her previous instincts.
"I was told [by my new surgeon] that you could have a clear MRI and six months later be stage three because the cancers that typically come with BRCA1 are more aggressive [and] harder to detect...no one ever once told me that you can metastasize from stage zero, stage one, and stage two,” Melanie said, her incredulity as clear as it was in 2017 as she described de novo metastatic breast cancer. “How do you tell [a patient] who has an 87 percent risk [of breast cancer] that you'll catch it early? If it in actuality, 33-ish percent of cancers metastasize?”
Another bit of incredulous intel Melanie picked up along the way? According to her new surgeon, patients should consider receiving preventative mastectomies at least 10 years prior to whenever their next-of-kin was diagnosed. For Melanie, given the age her mother’s tumor likely began developing, that would have been when she was 25 years old – around the same age she tested positive for the BRCA1 mutation and the same age her instincts told her to take preventative action.
“There's a big learning curve on interpreting what doctors tell you and [knowing] how to make your decisions,” Melanie said.
In this instance, the learning curve highlighted the limitations of “preventative” screenings and the common misinformation on early detection versus true prevention. From there, the learning curves kept on coming.
The Power of Story, Language, and Art
Melanie scheduled her preventative mastectomy almost immediately after receiving this wealth of knowledge from her new surgeon, and her breast cancer journey made what felt like “a complete 180”. New information, updated approaches, and revealed misconceptions made Melanie wonder: “what else has no one told me?” Like many, her curiosity led her to Instagram. After a quick “#BRCA” search, Melanie met Paige More – cofounder of The Breasties for whom Melanie is now an ambassador – and many other women within the breast cancer and reproductive cancer community.
“I really needed to know that other people my age were [having preventative mastectomies]...and Instagram really helped with that. It was just refreshing to meet other women who were a couple of years out from surgery and... [were] moving on with their lives,” Melanie explained.
The depictions of preventative mastectomies were quite narrow in 2017, so Melanie’s search started by strictly seeking out. And yet, she ended up building a rather diverse support system. Her closest friends, all of whom she met through her exploration of the breast cancer community, “run the gamut” from women with diagnosed relatives but no cancer themselves, to women experiencing metastatic breast cancer. In her exposure to a wide range of cancer experiences, Melanie also discovered a widely varied use of language. She used her typographic art to depict this, which then allowed her to define her own story.
It started with four drawings Melanie completed shortly after her surgery. She created figure outlines in an assortment of poses, then filled those outlines with descriptive words she sourced from the breast cancer community. The process started with a few close friends, then became an ongoing series featuring hundreds of women’s figures, stories, and specific language. “That's really when language started mattering to me,” Melanie said.
"I think [the art] is so interesting because...there are harsh lines on what words women will and will not willingly associate with themselves. One example of this is the kind of ‘war/warrior/fight’ - type terminology,” Melanie explained. “There are some women who are very pro- [breast cancer] fight: girl-battle-warrior [who] beats cancer like [she's] fighting the war. And there are other women who definitively don't want any of that associated with [their breast cancer experience]. This comes up a lot around obituaries because some people are okay with the phrasing of ‘losing their battle to cancer’. Other people are very much offended by that because they feel it implies that the person didn't do enough."
Melanie's terminology distinction came with “previvor”. Although she will occasionally resort to the term, she doesn’t believe “previvor” accurately describes her condition. Having met women who have still gotten breast cancer post-preventative mastectomy, Melanie knows there is still a substantial risk involved after taking preventative action. Reproductive issues and increasing skin cancer risks have also been associated with BRCA1. To Melanie, “previvor” doesn’t encompass that reality, and thereby doesn’t encompass her story.
Community Ties...and Community Riffs
The breast cancer community’s various stories inevitably create internal subgroups. Stage four patients have endured very different obstacles from stage one patients, whose experiences differ from women who have received preventative mastectomies and so on. These subgroups, like any, will experience their occasional riffs based on the contention over language Melanie mentioned earlier.
In Melanie’s experience, the term “thriver” in particular often ruffles feathers. “There are members of the community who feel that this word should only be used for people who are going to be in treatment forever because they're stage four. And there are other people who feel that any survivor should be able to use this term because they are thriving through what they've been through.” Melanie explained. Stage four, or metastatic, breast cancer itself is another area of contention given the harsh, often overlooked, reality stage four patients face.
"I think [the contention is] unfortunate because any research that benefits stage four is going to benefit everyone. [Stage four cancer] receives the least funding...which is disgusting because we should be putting all of our money towards what's killing people.”
In describing the experience of a friend with metastatic breast cancer, Melanie recalled a striking quote about denying stage four patients the visibility and discourse they deserve:
“She said, regarding all these comments [resisting the harshness of stage four cancer awareness], ‘I'm not going to go look at those comments and be told to go shut up and die quietly so that people can sit comfortably with their heads in the sand.’”
In Words and In Art
Nothing and no one can tell Melanie to “pipe down” about the breast cancer community’s uncomfortable issues. In fact, Melanie describes her Instagram feed as “one perpetual trigger warning”, due to the brazen effrontery of her artwork.
“All of the stuff we're not supposed to say, I don't have a problem saying it,” Melanie said. “There's a lot of artwork out there that's safe and trying to make people feel good about things. Some of the most uncomfortable things I’ve put out there over the years are the ones that I’ve gotten the most messages from women saying, ‘I feel really seen and no one else has really said they felt this way before.’ Maybe my artwork is its own little unsafe safe-space [laughs].”
That “unsafe safety” is in Melanie's artwork, in her advocacy, and in her own self-assertion through language. Whether she uses “previvor” for the sake of ease or she delineates having received a preventative mastectomy, it’s her story that she wants people to understand. Not for her sake, but for the sake of other women whose journeys may align with hers.
“Sharing your story is a form of advocacy. I think people hear advocacy and think they have to be out raising a ton of money or working specifically for an organization... but just sending your story out publicly into the universe so that even just one other woman hears it and finds some strength in herself. That's its own form of really incredible advocacy.”
For more information on BRCA gene mutations and genetic testing, click here.
If you or a loved one are experiencing breast cancer at any stage and need more information, visit https://www.cancer.org/cancer/breast-cancer/understanding-a-breast-cancer-diagnosis/questions-to-ask-your-doctor-about-breast-cancer.html for tips on how to self-advocate and the questions you should be asking your doctors.