When Kathryn Walker was told she had breast cancer when she was 28, she learned what it meant to feel alone.
Despite the support she got from family and friends, she felt very few people could relate to her struggles of being the youngest person at the cancer center. She had questions and concerns about having cancer but no one she felt she could turn to.
When she reached out to After Breast Cancer Diagnosis, a breast cancer support group based in Milwaukee, she was able to find a solution: more specifically, a person. She was paired with a breast cancer survivor who had gotten her diagnosis around the same age who became her mentor. Now, five years later, she’s a mentor herself.
Although October is Breast Cancer Awareness Month, those who are survivors and those who support those who have the disease know that cancer is a daily endeavor.
After Breast Cancer Diagnosis, or ABCD, was founded by Milwaukee broadcast journalist Melodie Wilson, who was diagnosed with breast cancer in 1992. Ellen Friebert Schupper, executive director for the group, said Wilson discussed her diagnosis on the air, which was unprecedented at the time.
“She realized there was just this void of emotional support for people with breast cancer,” Friebert Schupper said.
Wilson, who died in 2009, led a campaign for public awareness for 17 years.
Friebert Schupper said the organization has about 750 mentors nationwide.
“Sometimes you just need people there to validate what you’re going through,” said Walker, now 33, who treasures being there for women in some of their darkest moments.
The struggles don’t end even if the cancer is gone. Walker said survivors can need mentorship just as much as those in the middle of treatment.
“People think now you can resume where life paused,” Walker said. “In reality, this changed who I was and who I am. It changed the fabric of my life and my priorities. It’s hard to reconcile with what you just went through.”
With fewer women getting mammograms during the pandemic, many cases are going undetected, Friebert Schupper said.
Mayhoua Moua, executive director for the Milwaukee Consortium for Hmong Health, said breast cancer is one of the deadliest diseases her community faces for that exact reason.
Her organization provides screenings for cervical and breast cancer, which both have a disproportionate mortality rate among Hmong women.
“To my people, when you hear the word ‘cancer,’ it’s a death sentence,” Moua said.
Moua said many clients don’t get screened until they start experiencing physical symptoms, and by then, it’s often too late. Much of the consortium’s efforts stress education on the benefits of early detection.
“We try to tell them that cancer is not like a headache or a stomach ache,” Moua said. “You don’t feel it until it’s already in late stages.”
Carol Cameron, program manager at the Wisconsin Intertribal Pink Shawl Initiative, a nonprofit that focuses on breast cancer awareness for Native American women, said similar issues also exist in the Indigenous community. When she first started, she recalled some people dismissing breast cancer as a “white woman’s disease.”
Cameron said her organization tackles the issue by presenting it through a cultural lens. The group, for example, goes to Native American cultural events like powwows to spread the word wearing vibrant pink shawls and performing traditional dances, hence the name.
Cameron said the need for resources in communities of color is great as “cancer doesn’t discriminate.”
Working toward equity
Lakesha York, administrator for the Wisconsin Breast Cancer Coalition, a Milwaukee-based public policy and advocacy group, said her organization attempts to spur conversations around racial equity.
In Wisconsin, Black women have a higher mortality rate than their white counterparts and are diagnosed at later stages of cancer on average, according to reports from the Wisconsin Department of Health Services and Wisconsin Medical Society.
The coalition trains people to advocate for change in breast cancer policy. And it also hosts informational sessions. For example, a session called “breast cancer and the environment” details everyday items in homes that could lead to a higher risk of breast cancer.
Lindsey O’Connor, a survivor of breast cancer and board secretary for the coalition, said breast cancer’s persistence makes it an issue that needs to be addressed long term.
“It’s not just about a pink ribbon,” O’Connor said. “It’s not just about awareness. This is a disease that can come back. I can never stop thinking about it.”
Resources you should know
The Wisconsin Well Woman Program provides screening services for uninsured or underinsured women. Call 414-286-2133 for more information on how to apply.
To reach After Breast Cancer Diagnosis for mentorship services, call 414-977-1780.
The Milwaukee Consortium for Hmong Health can be reached at 414-212-8087.
The Wisconsin Breast Cancer Coalition can be reached at 414-963-2103.