Addressing Disparities in the Diagnosis and Care of a Rare Breast Cancer

"We want to make sure that, when it comes to inflammatory breast cancer, Black women diagnosed with IBC have the same chance of success and survival as anyone else."

The Warning Signs of Inflammatory Breast Cancer

In patients with inflammatory breast cancer, cancer cells block the lymph vessels to the skin of the breast. Instead of presenting as a lump, IBC typically makes the breast look red and inflamed, with the affected breast larger than the other. Breast skin may also be thicker and dimpled, taking on the texture of an orange peel. People with IBC may also have a retracted or inverted nipple, pain and itchiness in the affected breasts, and lymph node swelling.

IBC is also aggressive. By the time IBC is diagnosed, it's typically a stage III or IV breast cancer. It's so aggressive that it progresses in a matter of months, if not weeks. In about one third of cases, the cancer has already metastasized at the time of diagnosis.

Despite the rarity and aggressiveness of IBC, people are generally living longer after diagnosis than in previous decades. But targeted therapies for IBC remain elusive, even though IBC can share characteristics of other kinds of breast cancers.

"It's not clear yet what the driver mechanisms of this disease are and what makes this disease aggressive in general and associated with worse outcomes," Dr. Lynce says.

Changing the Mindset of Doctors at Diagnosis

Outcomes are worse for some IBC patients than others, which is clear from the disparities in incidence and outcomes between Black women and white women.

Experts say there are many factors that play into these disparities, including a difference in standard of care for Black women. Unlike most cancers, IBC is diagnosed primarily from clinical observation; a diagnosis may not be evident from typical breast cancer screening, like mammograms.

"We really rely on the experience of clinicians to make a diagnosis," Dr. Lynce says. "It's a rare disease and easily missed, especially for people not practicing at centers that treat a large number of patients diagnosed with IBC."

As a result, Dr. Lynce is working to streamline IBC diagnosis criteria to ensure that all doctors — including oncologists, general practitioners, OBGYNs, or critical care physicians, who may be the first person a patient contacts about breast pain and swelling — know how to diagnose the disease in all people. Clinicians, especially those not used to seeing patients with IBC, need to look for the orange peel-like appearance of the skin, general changes of skin tone, or swelling.

"If the images in a clinician's mind are typically white women with redness, and they are suddenly in front of someone who does not have white skin, their brain might not be able to think so quickly and say, ‘She's not going to have the same kind of redness,'" Dr. Lynce says. "It's a matter of us as clinicians having that in the back of our mind as a possible diagnosis, especially when you have some of these characteristics. One of the criteria of IBC is redness of the skin, and the way that skin changes manifest on someone that has skin tones other than white are going to be different."

Ensuring Better Representation

A problem that plays into this is that even with higher incidence rates of IBC in Black women, and the importance of a clinical diagnosis of IBC, illustrations of women with IBC tend to involve white women — an issue that happens across medicine. In fact, a 2018 study published in Social Science Medicine of 4,000 images in medical textbooks found that 77% of images showed patients with light skin, 21% with medium skin, and 4.5% with dark skin.

Dana-Farber is taking action to make sure that every kind of person is represented in depictions of IBC. Patients in Dana-Farber's IBC program are given an educational binder that features illustrations of a wide range of patients — depicting those who are Southeast Asian, Native American, Black, and white. These images are also available to Dana-Farber faculty members.

"We are working on making sure that the materials used to explain IBC to patients and healthcare providers are representative of different races and ethnicities — not only at Dana-Farber but also outside of Dana-Farber," says Dr. Lynce. "That will lead to a better and more timely diagnosis."

Dana-Farber also has an IBC Tumor Board made up of medical oncologists, breast surgeons, radiation oncologists, program coordinators, and statisticians. Twice a month, they meet to review IBC cases that are "either controversial in terms of diagnosis or management," Dr. Lynce notes. The board creates consistency in treatment and better experiences for all IBC patients.

Another important component is the lack of representation of Black patients in clinical trials. Clinical trials are scientific studies in which new treatments — drugs, diagnostic procedures, and other therapies — are tested in patients to determine if they are safe and effective. Clinical trials can provide early access to experimental new treatments and can be beneficial for patients whose cancer is not responding to standard treatment.

"We have plans to expand what is currently offered to our patients to other institutions in the Boston area, both in terms of research opportunities and participation in our IBC Tumor Boards," Dr. Lynce notes.

Like many large academic medical centers, the majority of Dana-Farber patients have historically been white, and clinical trials also tend to be of mostly white patients. Communities of color also historically have reason to distrust medical professionals, a distrust Dana-Farber is trying to overcome.

"If we aren't enrolling patients who are representative of the population with a certain cancer when it comes to race, ethnicity, other medical conditions, gender, and age, then we aren't learning the whole picture about how to optimally treat all patients," said Rachel A. Freedman, MD, MPH, medical director of the Dana-Farber Cancer Care Collaborative. "It means we have to extrapolate research and results in other populations to those not represented on studies. It is imperative that trial populations represent patient populations whenever possible."

Right now, Dana-Farber is engaged in an organization-wide effort to expand community partnerships and improve access to cancer care, Dr. Freedman says, including wider access to clinical trial enrollment.

"I think there are a lot of opportunities for us in the cancer community, and I see great things ahead," says Dr. Freedman.

Dana-Farber is also a member of Count Me In, a nonprofit research initiative that takes tumor samples and medical records from cancer patients anywhere in the U.S. and Canada. This way, researchers at Dana-Farber, the Broad Institute, and the Emerson Collective, a California-based research group, can study a far wider range of patients than would be possible in a single geographic location. This is particularly important for rare cancers, such as IBC.

"We hope that we'll be able to learn more about the driver mechanisms for this disease, and not specifically in the white population," says Dr. Freedman. "Our discoveries must reflect the world we serve, which is a diverse one."

Dr. Lynce hopes that these actions and others help ensure that Black patients are not left out of the IBC conversation.

"We need to know the entire picture of IBC in order to treat and cure it, and that includes helping all patients with this aggressive cancer," says Dr. Lynce. "These steps are part of the larger picture of righting medical disparities, but one where I know we are already making a difference."