Misdiagnosis, Missed Opportunities, and Mistrust: How Race Influences Cancer Treatment in Black Women

by Carolyn Bick

Linda Koerber isn't tall. Sitting at the table in the back room of the Cynthia Green Family Center in South Seattle, Koerber can just barely comfortably rest her arms on the table, as she calmly describes her ongoing fight against cancer as a Black woman. She wears red lipstick, because "I'm not dying today. So, that's why I wear red lipstick every day."

Even though Koerber was diagnosed with breast cancer in 2014, and underwent a double mastectomy, she was diagnosed again in 2017 with metastatic breast cancer, which means it has spread to her bones. But Koerber isn't facing the disease alone. She belongs to a close-knit group of Black women called the Cierra Sisters, a 501(c)(3) nonprofit founded by fellow breast cancer survivor Bridgette Hempstead in 1996. The group provides resource and community support for Black women who have cancer.

Hempstead founded the group, after she was diagnosed with breast cancer on her 35th birthday, because, as she put it, "there was no resources for Black women. All you saw was Caucasian women celebrating life after breast cancer."

"When I was diagnosed, I went to get a mammogram, and my doctor told me, one, I didn't need to get a mammogram, because it didn't affect the Black community, and I needed to come back in 10 years," Hempstead said. "After I was diagnosed, she called and apologized, and said, 'This was what I've been taught in school.' That was 1996."

Though there is now more medical literature, regarding cancer amongst Black women, more than two decades after Hempstead's diagnosis, little has changed for when it comes to their experiences using the medical system and their subsequent survival outcomes.

A study by researchers at the Hutchinson Institute for Cancer Outcomes Research (HICOR) Conference in May found that, amongst other social determinants of health, race and residence determined not only cancer survival outcomes, but also the stage at which cancer is diagnosed, as well as the quality of care patients receive. In South Seattle, this translates into poor outcomes for Black women.

Dr. Kemi Doll has been a gynecologic oncologist and health services researcher at the UW for the last three years. At the conference, she presented some of her findings, which showed that Black women diagnosed with endometrial cancer had a 55 percent to 200 percent higher mortality rate than their white peers.

It also doesn't help that Black people are more likely than white people to be diagnosed with cancer at a much more advanced stage of the disease. For instance, a 2013 study of breast cancer patients found that, despite Black women having a lower rate of invasive breast cancer, they were still more likely to die from it, due in part to a later-stage diagnosis.

This is part of the reason why Hempstead continues to this day to work as a community health advocate and educator for her fellow Black women. Hempstead said that some of the Cierra Sisters weren't diagnosed with cancer until late stages, and their subsequent treatment was mishandled. She recalled a specific incident, in which a Cierra Sister from Pierce County was diagnosed with stage four cancer, but felt that something was off, after the doctor prescribed her a chemotherapy drug. She got in touch with Hempstead, who referred her to the Seattle Cancer Care Alliance, "and come to find out that the drug that doctor wanted to give her would not even touch the type of cancer she had."

"Unfortunately, when someone is newly diagnosed, they don't know. They are not educated on what kind of treatment I should have. All they know is, 'This doctor has said this, they must be the expert, and they must not know what they're talking about.' And that's not always the case, especially when it comes down to our community," Hempstead said.

Misdiagnosis exacerbates the issue. For Cierra Sister Sandra Evans, it took multiple visits to her doctor to get a proper diagnosis of breast cancer. In 1974, Evans had found a lump in her breast. The surgeons ended up removing "six lumps the size of eggs," she said. After that, Evans said she regularly checked to make sure the lumps hadn't returned. But, almost two decades later, in 1992, a month after a February visit to her doctor, during which he did a breast examination, Evans found a lump. She doesn't know how her doctor missed, it either.

"That was more than one. It was, like, three. One was the size of a grapefruit. Two were like eggs," Evans recalled.

Evans was diagnosed with breast cancer in the left breast, though both breasts had lumps.

Though her insurance would have covered it, Evans was also automatically put on a generic brand of her chemotherapy drug, instead of getting the option to have the name-brand drug. Evans said this made her extremely sick.

But despite her reporting all her symptoms to her doctor, it wasn't until she asked to go off the chemotherapy entirely that her doctor offered the name-brand medication.

"I said, 'What do you mean, change the medicine?' I told him, 'I have double coverage. I have good insurance. What do you mean, you were giving me generic?'" Evans recalled. "He stumbled and said, "Mmmm. I don't know.' He didn't have an answer."

After that change, Evans said she felt much better.

"I stopped throwing up. I wasn't sick. I wasn't crawling from the bathroom to my bed. And I was able to eat right after," Evans said. "But that was in July, and they didn't change it until November. So they went that long."

Still, even after the doctor switched Evans over to the non-generic brand, he still treated her intravenously, instead of putting a subdermal port into her chest or arm to administer the chemotherapy drugs, which can be done to avoid damaging the vein due to multiple needle sticks. Evans said she was never given the option of a port; she didn't even know they existed, until after the fact. This destroyed her veins, leaving Evans unable to donate blood.

Black women are also less likely to receive pain medication than white women. Doll pointed to a 2016 University of Virginia study that showed the underprescription of pain drugs amongst Black patients who reported pain was due to the deep-seated, racist belief amongst medical students and residents that Black people don't experience pain the same way or to as great a degree as white people. Doll said that she isn't aware of these beliefs being explicitly taught, but does believe that students "pick these things up, observing who gets the extra milligram of Dilaudid, and things like that."

"We know that Black patients who go to the emergency room, for example, are much less likely to be treated with opioid pain medications, even when they are reporting similar pain levels," Doll said. "Whether it is spoken or unspoken, there is a continued pattern of either one of two things: we think that people have equivalency, but one group of people don't deserve pain medication; or, you're looking, and you're interpreting someone's pain as having less pain or suffering less than somebody else."

Hempstead has heard from some Cierra Sisters about how this disbelief extends to an outright refusal to diagnose a patient. She remembered one Sister's recent experience, which started in December 2018 with Swedish Medical doctors who didn't believe her when she complained of abdominal pain, and told her to see a therapist, telling her the symptoms were all in her head.

Seeking a second opinion, the Sister went to Seattle Cancer Care Alliance, which sent her to the University of Washington, under the impression it was ovarian cancer. But while the doctor removed the tumor that was found to cover her entire abdomen, it wasn't ovarian cancer. Hempstead said. It was colon cancer, which required a completely different team of gastroenterology surgeons.

Despite the team finding another cyst in her colon, they opted not to remove it, instead sending the Sister to recovery. And even though this led to the Sister requiring another emergency surgery, while she was still in recovery, the hospital still made her go home to finish her recovery process, Hempstead said. Days later, the Sister ended up back in the hospital, where they discovered even more polyps.

"Today she is having such health challenges and it appears the health care system is not taking care of her medical needs," Hempstead said in an email. "She is an older black woman with limited income,"

Treatment like this creates mistrust toward the medical profession amongst the Black community, Hempstead's community health colleague and Cynthia Green said, because it's "very disheartening".

"They are not looking at us as though our lives is valuable enough," Green said. "They feel like, 'What's the point? I'm not going to get the best treatment. I'm not going to get the best meds.'"

Though her doctor didn't refuse to diagnose her, Koerber still knows what it's like to struggle to get a proper care, following a diagnosis. Like Evans, it was Koerber who found the lump that led to her 2014 diagnosis, not her doctor.

Koerber said her doctor also didn't treat her cancer aggressively, despite knowing Koerber's family history of breast cancer. Koerber believes that it was her vocal support system, particularly her daughter, that forced the doctor to properly treat her initially in 2014. It is also Koerber's daughter who keeps her medical care on track, as Koerber has run out of energy to ask all the questions she has, so she takes her daughter to every appointment.

"It's not like I am giving up, it's like I am halfway accepting," Koerber said. "I am definitely tired. And it changes from day to day. It's like, 'Okay, I am not dying today, so I might as well do this, and do that.'"

This mistrust also stems from a long history of unethical medical practices in the Black community at the hands of white doctors. These unethical practices include the infamous Tuskeegee experiment in the 1970s, in which both a diagnosis of syphilis and its cure were kept from Alabama study subjects, all of whom were Black men, as well the case of Henrietta Lacks, a Black woman whose cancer cells were used without her or her family's knowledge or consent in the 1950s for research at Johns Hopkins University. The university profited off the discoveries and medical breakthroughs made with these cancer cells, while Lacks' family continued to live in poverty.

Thanks to her experience navigating the medical system as a Black woman, Koerber has come to trust the medical system less and less over the years. Koerber said she takes "a lot of natural stuff" at the advice of her naturopath nephew, whom she believes has a better approach to her healthcare, because he takes into account her whole body, rather than just the cancer.

"I was talking to him on the phone the other day, and I was telling him about the diagnosis. And he said, 'Well, let me send you these [cordyceps] mushroom tablets. And so when I started taking the [cordyceps] mushroom tablets, then I didn't need to take some shots I was taking to up my white blood cells. After I started taking them, I didn't need the shot. Before, I needed the shot once a month."

Koerber said she had her white blood cell count re-evaluated, after stopping the shots. She said that her white blood cell counts would always be low, but was high enough to continue with the powdered mushrooms.

The active immune-boosting agent in the powdered mushroom, Cordycepin, hasn't been widely studied in humans, but some studies have shown promising outcomes amongst mice in laboratory settings.

Still, even proven cancer drugs are problematic even amongst Black women who want to take them. Despite the fact that people of color make up 40 percent of the United States' population, they make up less than five percent of medical research participants. Almost all research participants who are recruited and participate are white men.

Moreover, participating in trials is expensive and time-consuming, because most of these trials don't take place in locations convenient to communities of color, and people of color also disproportionately lack insurance coverage, as compared to their white counterparts. Even though Congress passed a law in 1993 called the National Institutes of Health Revitalization Act, requiring the National Institutes of Health (NIH) to include more women and people of color in their studies, it only covered the NIH, which funds just 6 percent of all clinical trials.

This creates a major issue, when prescribing drugs, because they are metabolized differently across sexes and races. For instance, Albuterol, the most widely-prescribed asthma medication, was not effective for almost 48 percent of young Black men studied.

Leaving people of color out of clinical trials also has financial consequences: in 2013, the Centers for Disease Control published a morbidity and mortality report that cited a 2009 study by the Joint Center for Political and Economic Studies, which found that "eliminating health disparities for minorities would have reduced direct medical care expenditures by $229.4 billion and reduced indirect costs associated with illness and premature death by approximately $1 trillion during 2003—2006."

The systemic racism in the medical field also has implications for end-of-life care amongst cancer patients. Data presented at the HICOR conference showed that Black patients with long travel times to their oncologists are more likely to have more ICU stays at the end of their lives.

Hempstead remembered one now-deceased Cierra Sister who found herself forced to use emergency rooms for her end-of-life care in 2015. The Sister was diagnosed with stage four breast cancer, but when she asked for time off, her employer refused. So, she kept trying to work between taking time off to deal with her illness. Hempstead said this Sister was eventually fired, and applied for disability — but, because the process took so long, she became unable to pay her rent, and found herself on the street.

And without insurance, she also wasn't able to pay to continue with cancer care. Even though she eventually got approved for disability, it was too late.

"By the time that all came through, she was days away from dying and homeless," Hempstead said. "She did not die on the street. Her family took her in and she died at her family's home."

Bridgette Hempstead is a South Seattle Emerald board member.