On her 37th birthday, Anna Rathkopf was in the middle of reading a book when she innocently scratched her breast—and felt a lump. “Immediately, my stomach dropped,” she tells Health. Just three months earlier, she'd asked her gynecologist about getting a mammogram. She didn't have any breast cancer symptoms at the time, but she had a friend who had been diagnosed with the disease, and that weighed heavily on her mind.
Her doctor brushed her off, she says, because she had none of the risk factors that would have necessitated an early screening. (Breast cancer organizations generally recommend that women with no risk factors have a first mammogram at 40.)
Less than two weeks later, however, Rathkopf was diagnosed with triple positive breast cancer, one of several subtypes of the disease. She had a difficult time understanding why breast cancer happened to her. “My breasts at one point provided food for my son. And now, I didn’t know why my body was trying to kill me,” she recalls.
Rathkopf and her husband are both photographers (@rathkopfphotography). Following her diagnosis, they started taking photos of each other to document their journey, which helped them process what was happening: the chemo, radiation, hair loss, surgery, and amid it all, precious time with their toddler son. The photo series, titled “HER2: An Intimate Breast Cancer Experience,” can be viewed on the Susan G. Komen breast cancer blog and also at www.rathkopf.com.
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Now in remission at age 40, Rathkopf will remain on estrogen suppression treatment for seven to eight more years to reduce the risk of a cancer recurrence. She will never be able to have another biological child, a reality she finds painful.
But while she could tell her own story, not all women are able to. “Many faces of cancer are nonexistent,” she says. With this in mind, Rathkopf and her husband took on a new project that chronicles four people from underrepresented communities who have breast cancer. “Younger women get breast cancer. Black women get breast cancer. People in the LGBTQ community get breast cancer. But where are they in the brochures? It’s always a smiling older, white lady,” she says.
The duo partnered with a nonprofit called the Young Survival Coalition (YSC) to produce a campaign that showcases these underrepresented faces of breast cancer. Unfortunately, the campaign was paused due to the COVID-19 pandemic. “Still, I feel a responsibility to put [the photos] out there. We need to show other people who are on the margins of the breast cancer conversation,” says Rathkopf.
The campaign features four people—Yoko, Natalie, Kelly, and Patricia—who Rathkopf met through the YSC, at community events, and via Facebook. It tells their own personal stories of advocating for treatment and imagining a different future for themselves, especially in the middle of a pandemic, where people are more isolated and those with compromised immune systems (like cancer patients in general) are at highest risk of contacting the coronavirus.
Rathkopf's goal now is to make her project accessible to the public. “We want to educate people that breast cancer can happen to anyone. Telling the stories of people who are underrepresented can save lives,” says Rathkopf.
Here are four stories and photos from the series. Each profile is a powerful personal take on coping with breast cancer during a pandemic when you don't always see survivors who look like you.
New York City @heal_in_heels
Yoko, 42, an immigrant from Japan who teaches at the Fashion Institute of Technology in New York City, survived breast cancer once. After reaching that crucial five-year cancer-free mark, however, she was diagnosed with metastatic breast cancer in October 2019. She’s currently getting chemotherapy and teaching remotely for her health and safety.
Having cancer during a pandemic makes living with the disease harder. “I feel more vulnerable than ever before. Knowing that having cancer and [undergoing] treatment is making my immune system compromised, the situation is seriously dangerous to me. In a way, mentally, I already felt isolated because of cancer. It was so hard for me to process this metastatic cancer stage, I just decided to build my own isolation from what used to be known as the normal world.”
Adding to that isolation is the lack of Asian representation in ads and events surrounding breast cancer. "I feel Asian populations are underrepresented in the cancer world. Partly because, culturally, especially in Japan, I know that it's not open to talk about cancer topics in the public."
Diagnosed with breast cancer four years ago, Patricia, 34, a beautician for Sephora, has been cancer-free for the past three years. Making the experience more of a challenge is having multiple sclerosis. "I was violently experiencing the onset of multiple sclerosis at the time," she says. She was unable to walk and care for herself, and she now has mobility issues as well.
The threat of COVID-19 weighs heavily on her. “I have experienced emotional triggers from this pandemic because it just reminds me of my mortality. And sometimes I can get really in my head about that. So I am just doing everything I can to make sure I remain present. I connect with loved ones. It inspires me to remain present and to look at the sunshine through the window.”
Patricia has advice for other Black women with breast cancer: She found she had to advocate for herself throughout the treatment process to get the appropriate standard of care and bedside manner. "It's very important to share your experience and share your voice with other people so that they can know they can advocate for the best care that they need. They can advocate and say, 'This is what I'm feeling. Here's my research. This is what I think is best. Tell me what you think about that.' And if the medical professional that you're hiring is not adhering to that or answering those questions, then find someone who will."
New York City @gaybreakfast
Natalie, a non-binary art therapist in Queens, New York, was diagnosed at the end of 2019 and they finished radiation treatment just as the COVID-19 outbreak hit New York City. For the last five years, Natalie, 34, and their partner were saving money to pursue IVF in hopes of conceiving a child. Because of COVID, IVF is no longer a possibility for them.
“The coronavirus pandemic is extremely stressful for everyone. This is the final nail in the coffin of the idea that I could ever have a biological kid, because I'm on tamoxifen for the next 10 years. There was a possibility I could have gone through IVF and banked some eggs and taken a break from tamoxifen when I'm in my late 30s. But nobody is going to take anyone for IVF during a pandemic. It's not essential. So I've started grieving the fact that that door is officially closed.”
Breast cancer patients who are not straight white women can feel like they're on the margins, she says. "Cancer group focus has often been just so focused on the cis, straight, female experience. Like, 'this is female cancer.' And it's not. I don't fully identify as a woman. I'm queer. I'm gay and I consider myself somewhat non-binary. So having access to the online community of my queer friends has been really helpful during this time."
Nine years ago, Kelly, now 41, was diagnosed with breast cancer. Living with breast cancer and going through treatment has left her with depression, but she’s determined to take on the mental health issues that can develop after diagnosis.
The pandemic brought up her memories of the pain of isolation during cancer treatment. “Having to wear [masks] outside has sparked the biggest piece of sadness within me,” she says. “I had to discipline my mindset and just say, "OK, you know, this is just a piece of life as a whole.”
She urges other Black Americans, a group that's been disproportionately affected by the coronavirus, to be their own advocates when it comes to COVID-19 treatment and care. "It is unfortunate that even in this pandemic, the health of African-Americans is still not being taken seriously. So it's really high time for us to stand on the frontlines and get it together."
As for being a Black women with breast cancer, Kelly is well aware of the statistics, which show that Black women have higher mortality rates from the disease, per the CDC. "Unfortunately Black women are dying at a higher rate than white women. And I do know that some women, when they want to go in and get things checked out, it's brushed to the side in the medical community, unfortunately. They get sent home and [doctors say] oh, we'll watch it for two or three months. As women of color, we just have to fight and fight as hard as we can to get the same approaches as every other woman in America diagnosed with breast cancer."
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