From overlooked to understood, a Black woman’s case gets the attention it deserves

In 2005 after Terri Rau found a lump under her arm while shaving, she was treated for Hodgkin lymphoma. Her oncologist at the time cautioned her that she’d need to be on guard once she reached her 40s for a potential secondary cancer, especially breast cancer due to the chest radiation that was a critical component of her lymphoma treatment. 

Turning 40 seemed like a long time off. Rau, 26 at the time, tucked that information away. Sixteen years later, in the summer of 2021, Rau was doing a breast self-exam when her fingers skimmed over a lump. “I had been mentally prepared for that day for a while, so I wasn’t surprised,” she said.

Rau, now 45, decided to seek care at Fred Hutch Cancer Center. “I figured I would get the best care at Fred Hutch because it’s a dedicated cancer center,” she said.  

It helped that Rau works as a sandcarver in Tlingit glass artist Preston Singletary’s studio, which is located in South Lake Union on the Fred Hutch campus.  “I'm here every day so I’m reading the bulletin boards in the cafeteria and seeing the culture,” she said.

Biopsy results confirmed a diagnosis of triple-negative breast cancer in her left breast: ductal carcinoma in situ and invasive ductal carcinoma.

In a meeting with her medical oncologist, Natasha Hunter, MD, and her surgeon, Kristine Calhoun, MD. Rau said she felt “incredibly reassured that there were highly competent, compassionate people on my team. I heard there was a path forward.”

Equally importantly, Rau said she felt respected and listened to as a Black woman. That stood in stark contrast to stories she had heard from others about their experience with health care providers. “When my mom died, we found a heartbreaking letter she wrote about the ways she had been dismissed by her doctor as an overweight woman of color,” said Rau. “I was looking for a different experience.”

For starters, Hunter worked in tandem with Rau to develop a treatment plan that took into account her previous diagnosis. During Hodgkin lymphoma treatment, Rau had already reached her maximum lifetime dose of anthracycline, which was part of the typical regimen for her breast cancer. Hunter adjusted Rau’s treatment plan accordingly. “Knowing that she had previous treatment that put her at risk of cardiac complications like heart failure, we dropped certain chemotherapies to avoid that potential complication,” said Hunter. 

"We walk the knife’s edge between curing the breast cancer with the most aggressive approach we could take and not causing her further long-term toxicity,” said Hunter. 

Rau also was part of a small subset of people at risk for pulmonary complications while taking pembrolizumab, which was also part of her breast cancer regimen. Rau already had some pulmonary scarring from her Hodgkin lymphoma radiation; when she discussed that with Hunter, they agreed that a pulmonary function test was advisable.

That test detected pneumonitis, an inflammation of the lungs that causes shortness of breath and can impact oxygen levels and require ICU care. Rau stopped taking pembrolizumab and started taking steroids to help resolve the condition. “I have always felt heard,” said Rau, who is an advisor with Fred Hutch’s Patient and Family Engagement Program, which aims to improve care by promoting partnerships between patients, caregivers and staff through feedback and focus groups.

Hunter strives to embody that mission by partnering with patients and empowering them with information. Some patients are more receptive than others. “When you meet someone complicated like this, it’s incredibly helpful when the person is thoughtful and savvy like Terri because they can partner with you in the decision-making process,” said Hunter. “Any sort of therapeutic relationship is a partnership.”

When Rau wondered about research during COVID-19 that found that pulse oximeters didn’t measure oxygen saturation in darker-skinned people as effectively as they did in lighter-skinned people, she asked Hunter what she thought. "She researched it and took it seriously and went out of her way to find all sorts of research about it, then she sent information to me,” said Rau. 

For her part, Hunter appreciated that Rau asked for her opinion. “Physiologically it makes sense, so I was curious about it and told her I would look into it,” said Hunter. “It’s always important to know where your knowledge begins and ends. It turns out there is a legitimate concern, and some technologies are being developed to provide more accurate results for everyone.

“Patients come to you with all sorts of concerns and you have to take all of them seriously,” she said. “The longer you do this, the more humble you get. You really have to acknowledge that there are things you don’t know, things that medicine doesn’t know, and each patient is a potential source of information and has unique experiences that may not reflect the typical experience.

"On one hand, medicine is all about pattern recognition because we are all humans," she said. "But on the other hand, there are ways we don’t always fall into the usual boxes — in particular for people of color, who haven’t been as represented in research studies.”