Asha Miller doesn’t use the word survivor to describe her experience with stage 3 breast cancer. She uses the word veteran.
“I use the word veteran because it feels more authentic to me,” says Miller. “In our community, we are constantly getting phone calls or seeing on social media when another one of us passes away and we have to go back to that traumatic experience. Many of us are diagnosed with PTSD.”
Miller was diagnosed in 2017, when she was just 33 and in the best shape of her life.
When she found a tiny, almost undetectable lump under her right armpit, she didn’t expect it to be anything to worry about. When the doctor called with her biopsy results, she was stunned.
“At that moment I felt like I had lost my body. I completely detached. I hung up the phone and didn’t realize I had begun to scream until my 8-year-old son walked into the kitchen and asked what was wrong,” Miller remembers. “It was so surreal, it felt like a dark joke to say, ‘I have breast cancer.”
For years, she says, she had donned pink and participated in cheerful walks for breast cancer. Now that she had the disease, she found it was nothing to cheer about. Nor were these events particularly meaningful for her. “People think they know the breast cancer world because of these big conglomerates who organize races with names like Save the Tatas,” she says. “I did that before I had cancer.”
Bias, and a Dearth of Information for Black Women
What Miller wanted was a support group that she could relate to. But she couldn’t find one. She didn’t feel represented as a Black woman or in her emotions, or feel that she would be able to get the type of support she needed. Miller also wasn’t ready to hear other stories face-to-face yet, which she knew she’d experience if she joined a support group.
And at that time, what Miller really wanted was to know more about what to expect from cancer treatment beyond a bald head. Chemo was difficult, and when she asked for help from the medical community, she was met with distrust and racism and accused of drug seeking.
The chemo drug Miller was on, called Taxol (paclitaxel), has a known side effect of bone pain. Taking Taxol along with other drugs for her cancer treatment made the bone pain even worse.
But when she brought this up with her oncologist, she didn’t believe Miller. Looking back, she wishes her doctor had taken the time to explain this to her, but instead, she accused her of fishing for addictive pain medication.
Miller had brought her mother to that meeting with her oncologist, knowing the importance of having an advocate. Other times she had brought her husband, who is a white man.
“He was shocked by how I was treated,” she says.
When she started radiation, it burned the skin on her chest, causing her skin to peel off on her sheets. But when she searched for pictures of what radiation does to brown skin, she found only hundreds of photos of white skin with red marks. Even her doctors told her her skin would turn red, which isn’t the case for Black women.
“Mine was Black and my skin was falling off,” she says.
Miller didn’t have a person to turn to for answers.
Finding the Support She Needed
Instead, she scanned social media and followed people from an organization called The Breasties she had heard about through a friend.
“There were certain Breasties in the community who were Black and when I started to follow their pages, I saw real photos of women of color and their radiation burns. When you turn to Google and you type in mastectomy scars or radiation burns, we don’t come up,” she says.
Shortly after that, she made the first in-person connection that shifted her perspective. She met a young breast cancer survivor who understood her particular sense of humor and didn’t make her feel that she had to put on a happy face. “She just sat with me and laughed with me when I made dark jokes because she was like, ‘I’ve made them, too,’” says Miller. Feeling that sense of comaraderie made her think that, if one person could do that for her, maybe she could do it for others.
She started an Instagram account, @dearcancer_itsme, to show people what going through cancer was actually like. She also joined organizations — such as The Breasties — that offer resources for BIPOC people who have breast cancer.
She found more people like her — who had dark skin like hers and who were sharing the real, raw stories of their cancer experiences. At a time when she wasn’t yet ready to hear these stories in person, she was able to read them online and relate to them in the privacy of her own space. “That was huge for me,” she says. “That’s when I felt safe in a community and seen and heard.”
On Instagram, she shares stories of her own experiences, such as learning to flush twice after using the bathroom while on chemo, to avoid anyone else coming into contact with the chemicals the body leeches while undergoing chemotherapy, as well as wiping down the shower and being careful about sweating for the same reason. She made sure people of color would have access to photos and information about what they could expect from cancer treatment, which she had a difficult time finding at the beginning of her own diagnosis.
“I wanted to find pictures of people who looked like me, and know about what helped them when their hair started coming back,” says Miller.
After having her pain dismissed, Miller asked her radiologist to recommend a new doctor to manage her care. “I said I need someone who is a person of color and I need them to be straightforward with me,” she says.
It wasn’t until she started seeing a person of color that she started getting information about how cancer treatment may work differently in Black women — how they may cause different side effects and how those side effects are not uncommon.
“I had never heard any doctor specify that anything in my treatment would be different because I am a Black woman. I know that doctors are human, they make mistakes, but they also have their own biases so we have to keep that in mind. They don’t necessarily get taught in medical school about the different types of skins,” Miller says.
Creating the Community She Needed
Today, Miller is cancer free. In addition to building a community on Instagram, she’s on the Diversity, Equity, and Inclusion committee of The Breasties and encourages health professionals to educate themselves about structural racism in healthcare.
She’s also a regular guest on cancer-focused podcasts, speaks at conferences, and was the spokesperson who debuted Target’s mastectomy swimwear line. Most recently, she’s directing a film about body image issues and how others have learned to love their bodies after feeling betrayed by cancer.
Miller uses each medium as a way to change the breast cancer support landscape for the better.
A few years ago, Miller was speaking at the Stupid Cancer conference when she shared with those in the crowd — many who have had cancer or were currently going through it — her philosophy about the word survivor versus the word veteran.
At the end of the session, she overheard conversations throughout the room. People were referring to themselves as veterans, too.
“I started crying because so many people related to it,” she says.
Resources We Love
Not all resources are created equally, and no one organization is one-size-fits-all. If you’ve been diagnosed with breast cancer or know someone who has been, here are some organizations that stand out to us as being exceptional resources for women of color. They’re all great places to start.
The Breasties run the Pink Is Not The Problem Campaign, which Miller helped create. It takes on pink-washing (companies that make misleading claims about supporting cancer groups) in the breast cancer industry and helps people who want to donate make sure they know what their funds are being used for.
For the Breast of Us
Jasmine Dionne Souers and Marissa Thomas created For the Breast of Us as an antidote to the issues they both faced fighting breast cancer — from diagnosis to remission. They have a growing archive of breast cancer stories from women of color that have shaped a community. The site also includes resources including a list of clinical trials for metastatic breast cancer.
Ricki Fairley is a triple-negative breast cancer thriver. She’s the creator of Touch, The Black Breast Cancer Alliance (BBCA), an organization that not only creates a community specifically for Black women battling breast cancer, but also engages with pharmaceutical companies, healthcare workers, and researchers to address the disparities in cancer treatment, research, and detection that undermine Black women’s survival.
Coils to Locs
Breast cancer veteran Dianne Austin started Coils to Locs with her sister after Austin realized there were almost no resources for natural hair wigs in the breast cancer space. Their goal is to ease the trauma of hair loss during cancer treatment and bring badly needed natural hair wigs to hospitals, clinics, and select wig shops.
Here’s a full list of breast cancer podcasts we think stand out. Asha Miller has been featured in episodes of several of our favorites:
- Sips With Survivors: Miller talks more about how and why she created new community in the breast cancer space.
- Dear Cancer, I’m Beautiful: Miller talks radical body love post-cancer.
- Interlude: Miller details her own experience with medical racism and discusses racism and biases that prevent BIPOC patients from getting the care they need.