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When Lisa Marzullo was 29 years old, she felt a pain in her armpit and immediately went to urgent care. The doctors told her that she had pulled a muscle, which, her friend and colleague Charlotte Maumus recalls thinking, was probably not the case, given that Marzullo never went to the gym. 

Yet Marzullo, a corporate comms director, took the medical advice in stride and waited to see if the pain would go away. It didn’t.

Insistent that something was wrong, Marzullo pushed to get a mammogram, despite her age making her an unlikely candidate for breast cancer, Maumus said. On Christmas Eve of 2018, she was diagnosed with triple negative breast cancer. 

When Marzullo died in May 2020, it came as a shock to many of her colleagues at WarnerMedia and friends from her former employer, Hunter, who, like Maumus, weren’t even aware of the severity of her disease.

“There’s definitely dismissiveness when it comes to young adults and breast cancer,” said Maumus, who cofounded the Lisa Marzullo Fly Again Foundation to educate people on how the disease is affecting women and men under the age of 40. “Once you have it as a young adult, you realize that it isn’t so unusual.”

Marzullo’s story is similar to those of many young women. Breast cancer was traditionally believed to mostly affect women over the age of 50, but younger women are now more often being urged to get screenings. In April, the U.S. Preventive Services Task Force finalized new recommendations for breast cancer screenings that advise women to start regular mammograms at 40 years old instead of the previous guideline of 50. 

That decision reflects progress in the fight against breast cancer, but younger women who are diagnosed with the disease are often denied care or met with doubt from doctors about their own bodies. That’s despite data showing that, with the exception of skin cancers, breast cancer is the most common cancer in women in the U.S., accounting for one in every three female cancers each year, according to the American Cancer Society.  

This “dismissiveness” is rooted in a lack of education for both women and doctors that’s missing in breast cancer awareness messaging, Maumus said.

National Breast Cancer Awareness Month began in October 1985 to improve knowledge of the disease and advocate for ways to find a cure. In the decades since, October has become synonymous with pink, in honor of the cancer’s symbolic pink ribbon, and the color can be found on branded merchandise from companies and campaigns spotlighting survivors and thrivers — and even on baked goods. 

Ogilvy EVP of corporate affairs Jordan Lubowitz recalls seeing sugar cookies with pink ribbon sparkles at the grocery store. Nothing about the product marketing was financially supporting the cause via a foundation or charity, but it embodied much of the breast cancer awareness marketing that is ubiquitous throughout the month. 

It wasn’t lost on Lubowitz that she was diagnosed with breast cancer in October. Ironically, she had just purchased a pair of SoulCycle shoes that donated to the Breast Cancer Research Fund — bought purely because they were pink. 

“You see pink and you know what it is right away,” she says, adding the experience is emblematic of “pinkwashing” campaigns. “Whoever created it did a good job from the communication standpoint.” 

Fly Again was very cognizant when it created its branding to only feature a little pink in its logo so it would be recognizable as a breast cancer charity, but not too much — Marzullo hated the color. 

“We don’t like to overuse it, and that is something that I have seen happen a lot with brands pinkwashing,” Maumus says. “You can’t just slap a ribbon on any product or say that you’re supporting breast cancer research just for this particular month.”

A lot of marketing for breast cancer awareness centers on stories from “survivors” and “thrivers,” painting a picture of positivity and empowerment amid what can be a deadly disease. According to the American Cancer Society, about 42,250 women are projected to die from breast cancer in 2024. 

Katie Read, senior manager of global employee communications and culture at PayPal, says she struggles with the language used to describe cancer patients. Having been diagnosed at age 34, she doesn’t want to be 85 and still wearing the badge of “survivor,” she emphasizes. 

“You know the opposite of survivor? You die. Like you didn’t win — you lost. That’s so unhealthy as a thought,” Read says. “I don’t want to feel like I fail if this thing comes back, which it might, and that’s something that I’ve got to contend with.” 

Much of the information available to women diagnosed with breast cancer is dependent on survivors doing advocacy and raising awareness about the cause, says Avenue Z EVP of global strategy Nneka Etoniru. 

Finding authentic stories is difficult, Etoniru says, especially those that she identifies with as a young, Black woman with cancer. 

Social media initiatives like #FeelItOnTheFirst, which encourages women to do a self check of their breasts on the first of every month, not only in October, emphasizes real stories from women.

“I would love for breast cancer advocacy and campaigns to center around real stories of real people, without having some urge to make it a feel-good moment,” Etoniru says. “We need more dark, gritty, realistic interpretations and stories being told about the experience and a lot less of the warm, fuzzy, pink, fluffy, buy-this product.” 

Organizations like Fly Again, which is a 501(c)(3), use October as a kickoff for its end-of-year fundraising. Through its social media and newsletter, the nonprofit highlights the personal stories of Marzullo, as well as the women with breast cancer under 40 to whom it grants dream vacations. Its mission is to offer a reprieve from the responsibility of being a cancer advocate and spotlight the stories of younger women affected by breast cancer — to show that they exist. 

The paradigm has shifted in terms of how and where people receive information, DNA Communications head of North America Sara Jane Baker says. In her professional and personal experience, having served as the caregiver through her mother’s breast cancer diagnosis in 2006 and subsequent metastatic disease, Baker says screening awareness is pushed at the national level. Meanwhile, treatment awareness and decisions often take place in a person’s community or through local resources such as support groups. 

“There’s a lot of stuff that goes on in October which is not particularly meaningful,” said Baker’s mother, Ellen Baker, of the increase in communication about breast cancer throughout the month. 

It’s a matter of picking something consequential, she says, which is why she works with the Breast Cancer Research Foundation, the largest financial backer of research in metastatic disease in the world, because it supports research for her disease.

Baker also shares her extensive history and understanding of breast cancer via Instagram (@thisbreastcancerbabe) as a way to communicate real facts and findings with other patients. 

“There’s a lot of stuff on social media that Gen Z and millennials are able to see now that you couldn’t see when I [was diagnosed] the first time,” Baker says. “However, unless you really make an effort to find the latest, greatest stuff in research, it’s not hanging out there for you. You’ve got to get out there and try to find it yourself.”

Sare Jane Baker urges patients to question the standard of care, including barriers, such as the mammogram screening age, that may not be inclusive of the full spectrum of women, or are widely communicated with the general public. 

“What my mom and I, both myself and also as a professional, are really pushing for is to question if the standard of care is good enough for you?,” she says. 

This article originally appeared on PRWeek US.