Breast Cancer Veterans and Survivors Call to Move from Awareness to Action This October and Beyond

Each October, individuals, organizations, and institutions across the country recognize Breast Cancer Awareness Month. But as many breast cancer advocates can attest, there is much more that can be done to meaningfully support patients and survivors than what we typically see promoted in advertisements or on social media.

“Breast cancer is not just October, it's not just the easy cancer,” said Asha Miller, breast cancer veteran and advocate. “It's not just the gimmicks, the pink ribbon, the pink tutus, ‘save the tatas.’ And I get it, because that’s all I knew before I was diagnosed. But there’s so much more to it.”

Miller and fellow advocate Brooklyn Olumba use social media and a variety of other platforms to share their unique experiences as black women and young adult breast cancer survivors/veterans, highlighting the underdiscussed issues that impact these often-underrepresented groups. They also provide guidance to various advocacy and research organizations, including the Adolescent and Young Adult Scholarship, Training, and Research (AYA STAR) Lab at the UTHealth Houston School of Public Health. Both Miller and Olumba currently serve as members of the AYA STAR Lab’s Community Advisory Board (CAB).

“It's been very rewarding and impactful as a breast cancer survivor, knowing that people care about my input, my opinions, and my experience,” said Olumba. “The researchers have been really good about asking us questions and getting our input early on. Not just saying, ‘Hey, we're doing this and we just want your opinion on this one thing,’ but including us from the very beginning.”

CAB meetings for the AYA STAR Lab often involve discussion of effective advocacy and awareness, including where existing efforts fall short. Both Miller and Olumba have observed that the most popular and widespread messaging tends to be limited in scope, giving people an incomplete picture of breast cancer. For instance, chemotherapy treatment tends to get more attention than radiation treatment, leaving people unaware of the treatment and its side effects, which can range from skin discoloration to severe burns. And while general statistics and survival rates are often shared, these only tell part of the story.

“I first started doing this to share the reality of what it’s really like to have breast cancer, the things that no one talks about, that the movies don’t show,” said Miller. “My provider told me that I had a 93& chance of surviving in the first five years, but I didn’t know until later on that for black women it’s actually 84%. That’s a huge difference. That's something that the pink ribbon doesn't say. The 93%, that's not me.”

In some cases, the specific and limited focus of awareness raising and popular discussion can even be harmful. Olumba points out that an overemphasis on breast lumps as the primary sign of breast cancer can reduce people’s awareness of other signs, like discoloration or discharge, in turn causing people to get later diagnoses because they didn’t know what to look for.

“I think we’re seeing the same thing with young adults,” said Olumba. “People are told they’re too young and getting turned away and dismissed even when symptoms are happening. The young adult community is really being underserved.”

Another common issue, known as “pinkwashing,” is companies selling breast cancer awareness products or running campaigns that primarily benefit themselves. These companies will contribute only a small percentage, or no percentage, of the proceeds from these efforts back to breast cancer research or survivors.

“Companies will even use the stories of breast cancer veterans for free to help sell their products,” said Miller. “It's a huge marketing tactic, and it honestly gets me heated. That’s why I’ll work with a lot of companies and try to educate them in more authentic brand marketing, educating them that they have to pay these veterans for their stories.”

Fortunately, there are things the average person can do to push back on pinkwashing and encourage more tangible support.

“We’re encouraging everyone, our friends and family and supporters, to question these companies,” said Olumba. “To ask them, ‘Are you actually giving the proceeds back to organizations that are supporting this community?’ ‘How much are you giving and to whom?’ Because that matters. And I think the more we talk about it, the more brands will think twice when Breast Cancer Awareness Month approaches.”

For people who want to know what they can do to support breast cancer research and survivors, both Olumba and Miller encourage giving to organizations that allocate 100% of donations towards research and other initiatives, or giving directly to breast cancer patients and survivors who may be struggling with things like medical debt. They also recommend checking in on the survivors in your life.

“For this month in particular, breast cancer veterans are very tender,” said Miller. “We are literally seeing the most traumatizing thing that's ever happened to us on bananas in the grocery store, on every TV commercial and every movie, in parades, on TV, in walks and in slogans. So just checking with us, asking ‘How is it for you this month?’ or ‘How are you doing?’ is huge.”

Overall, Olumba and Miller believe that the focus Breast Cancer Awareness Month can and should go beyond what we so often see in the media and from major companies. Their suggestions include educating people on all the signs of symptoms of breast cancer, encouraging genetic testing and making it more accessible, providing resources for mammograms, and teaching people to be their own advocates and to push back or seek a second opinion when their concerns are dismissed.

“We focus so much on the awareness for Breast Cancer Awareness Month, but it really needs to be Breast Cancer Action Month,” said Olumba. “It’s one thing to talk about the statistics, to say ‘look out for lumps,’ but we really need to be turning awareness into action. I think we talk too much about what it is and not enough about the next steps of what to do now that we are aware.”

Despite the issues and shortcomings they’ve observed in popular approaches to breast cancer awareness, both Miller and Olumba say they are grateful for the organizations, researchers, and practitioners working to support breast cancer patients and survivors.

“Thank you for what you do, because you’re saving lives,” Miller said. “And thank you for anyone who is reading because you’re hearing the story. I truly believe the power of our story is transformative, it humanizes the work that you’re doing. And I’d just ask you to remember your why. Remember why you started doing research in the first place, why you became an oncologist or a healthcare provider. Put a face to what you're doing and keep listening to our stories.”

For more information on UTHealth Houston School of Public Health's AYA STAR Lab, visit their website or contact them at [email protected].