By: Ina Joseph
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.
One out of four of Melanie's original artworks, made in honor of her mom.
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 harrowing doctor’s visits and draining 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. When she finally received her results, Melanie’s mother found out she carried a risk for contralateral breast cancer. In other words, despite having previously endured both a unilateral mastectomy and a hysterectomy years ago to prevent future bouts with cancer, a tumor could still show up in her remaining breast. After years of strenuous deliberation, Melanie’s mother had her breast prophylactically removed. This choice then impacted every one of Melanie’s decisions moving forward.
“My mom made both survival decisions and preventative decisions for her own body,” Melanie said of the prophylactic mastectomy. “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.”
Melanie's 100th drawing - a reflection of her mom's BRCA experience.
Five years of screenings later, Melanie’s concerns became her reality. 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, that certainty swayed after receiving “outdated information” from surgeons over the course of five years.
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. It's not a problem. You can wait on surgery until you're 35. If you want to have kids first...’ Everyone stresses - get married first, have babies, breastfeed...whatever,” Melanie explained. “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, shaped her surgeon’s advice concerning why she should hold off on a preventative mastectomy. However, when she switched surgeons in 2017, she received an entirely new set of 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, harder to detect, usually only show up on an MRI...and 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 information 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.
“I feel like there's a very big learning curve, especially before you find a community,” Melanie said. “There's a big learning curve on interpreting what doctors tell you and [knowing] how to make your decisions.”
In this particular instance, the learning curve highlighted the limitations of “preventative” screening and the misinformation on early detection versus true prevention. From there, the learning curves would keep 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. 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 and desire to start a conversation 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], that I wasn’t completely crazy, 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. "I think it was just so helpful to see that and also to start seeing options because, [although] I really adore my reconstructive surgeon... he did not tell me about all of the options. Instagram told me about the options.”
Although her search started by strictly seeking out other women undergoing the same preventative experience - as the depictions preventative mastectomies were quite narrow in 2017- Melanie ended up building a rather diverse community of her own. 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 – and highly specific - use of language to describe these experiences. She used her typographic art to depict these women and their stories, which then allowed her to define her own story.
A piece that Melanie made in honor of her close friend Emily, who battled metastatic breast cancer (MBC). The piece showcases how Emily's back pain was dismissed despite it been a symptom of her subsequent MBC diagnosis.
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 people will use such varied terminology and 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."
For Melanie, her terminology distinction came with the term “previvor”. Although she will occasionally resort to it given the term’s popularity, 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. Having the BRCA1 mutation can have effects outside of your breasts – from reproductive issues to increasing skin cancer risks. To Melanie, “previvor” doesn’t encompass that reality, and thereby doesn’t encompass her story.
“Claiming your story is one of the most powerful things that a person can do,” she stated definitively.
Community Ties...and Community Riffs
Fortunately, forming such a close-knit support group with other members of the breast cancer community has been affirming in Melanie’s journey to assert her story. However, this hasn’t been the case with every story.
Like any group, the breast cancer community has subsects based on varied experiences: stage four patients have endured very different obstacles from stage one patients, whose experiences differ from women who received preventative mastectomies and so on. The contention over language Melanie mentioned earlier will occasionally create riffs within these subsects.
For example, in Melanie’s experience the term “thriver” has ruffled feathers in the community, specifically in terms of who should be using it. “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, anyone 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 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.’ And that's really how I feel about that.”
In Words and In Art
Melanie carries that same vehemence in her advocacy for stage four research and in her art. Nothing and no one can tell her to “pipe down” about the uncomfortable issues in the breast cancer community. In fact, Melanie describes her Instagram feed as “one perpetual trigger warning”, due to the brazen effrontery of her artwork.
“I kind of like to push buttons, I've done a lot of work calling out the medical community because I have a lot of... let's call it baggage in that department... I just really like to push the envelope a little bit. 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. No one has ever shown the scars that I have before because they’re not the ones that are normally depicted.’ Maybe my artwork is its own little unsafe safe-space [laughs].”
That “unsafe safety” is in Melanie's artwork, in her advocacy for stage four breast cancer, and in her identification of her own experience. Although using other people’s words to depict their stories comes intuitively to Melanie in her art, it’s by no means easy finding the right language for herself. Whether she uses “previvor” for the sake of ease or she delineates having received a preventative mastectomy after testing positive for the BRCA1 mutation, it’s her story that she wants people to know and understand. Not for her sake, but for the sake of other women out there whose journey may align with hers.
A piece that serves as a reminder to "think before you pink" and "to continue to push for and fund research."
“Sharing just 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, maybe, 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.