For years, Jacqueline Smith, PhD, had patience with — and a sense of humor about — people who just don't get her medical history and say and do annoying things. A Black woman who developed stage 3 melanoma twice before her 30th birthday, Smith acknowledges that she is "totally an anomaly" and an "outlier" because of the combination of her skin color and age — and a number of other factors.
"At first it was amusing when people looked at me like I was some kind of mythical unicorn incarnate. But seriously people, it's not like I said I have prostate cancer," says Smith, who is director of grassroots advocacy and state government affairs at Vertex Pharmaceuticals in Boston, Massachusetts.
Smith had the most common form of melanoma, known as superficial spreading, and admits that she too had incorrect beliefs at one time.
"Until my diagnosis I never believed me or someone who looked like me was at risk for developing any form of skin cancer — I had never seen anyone with olive or darker skin tones addressed in a single awareness campaign," she observes.
Now in her early 40s, Smith says her good humor and willingness to be understanding eventually transitioned into "exasperation." That's because it wasn't just regular folks who were "shocked" by or insensitive to her disease. It was also healthcare professionals and fellow patient advocates.
It has been "disheartening and dehumanizing," she comments, to sit on a melanoma panel where Pale Skin Rocks stickers were handed out and to attend an advocacy event "where people praise others for their pale skin and distribute t-shirts reading 'Pale Skin Is In.' "
The same holds true for healthcare providers, some of whom have gasped and exclaimed, "Wait, your skin actually burned?!"
Those kind of comments have a deep impact, Smith attests. "Not only have such interactions…worked to marginalize me in communities where I should feel welcome and safe, they also silence me."
As her patience has been tested, Smith has developed a vision of what good healthcare is, in part because she been on the receiving end of some bad healthcare.
It all starts with "checking your assumptions at the door," she told an audience of oncologists during ASCO Voices, a storytelling session at the recent annual meeting of the American Society of Clinical Oncology, held virtually again this year because of the pandemic.
In her talk, Smith expanded on how that act of restraint leads to a cascade of good things that ultimately holds the promise, she believes, of promoting "equity for every patient, every day, everywhere," which was the theme of this year's ASCO meeting.
Smith's message appealed to ASCO Voices audience member Heather Hannon, MSN, RN, ANP-BC, of the Women's Wellness & Cancer Institute in Richmond, Virginia. "Thank you Jacqueline Smith for sharing your voice. Your wisdom & insight are invaluable and we must carry them to action. 1. Check your assumptions at the door. 2. Consider QoL in every decision," Hannon tweeted.
A List of Assumptions and Misconceptions
Smith says she tries to practice what she preaches. "Before I challenged others and their assumptions, I had to check my own," she explains, referring to her past lack of knowledge about melanoma risk and skin color. She then described a set of assumptions and misconceptions that she has repeatedly experienced from healthcare professionals and other people.
First, Black people do develop melanoma, despite it being relatively uncommon, she says.
Indeed, the incidence of melanoma in Black people is much lower than in Whites or other ethnic groups. Overall, the lifetime risk of getting melanoma is about 2.6% (1 in 38) for Whites, 0.6% (1 in 167) for Hispanics and 0.1% (1 in 1000) for Black individuals, according to the American Cancer Society (ACS).
Also, while the risk of melanoma increases as people age (65 is the average age at diagnosis in the United States), melanoma is "not uncommon even among those younger than 30," says the ACS. In fact, it's one of the most common cancers in young adults, especially young women.
Genetics appears to play a role when melanoma develops in young people, say William Anderson, MD, of the National Cancer Institute and colleagues in a 2009 study. "Melanoma of the skin in adolescents and young adults appears to occur among susceptible individuals through genetic interactions with early-life UV exposure," they write. The team also explained that "melanoma in older adults likely reflects cumulative lifetime ultraviolet light exposure among those with less susceptibility."
However, this is the second misconception that Smith suggested, as melanoma is not always associated with excessive UV exposure. She was not a "sun worshipper" and had never been to a tanning salon, as some had assumed.
Third, Smith also does not have, as some assume, acral lentiginous melanoma, a rare form that Black people are more susceptible to than others, and tends to manifest in the palms of the hands, soles of the feet, and under the nails. Reggae legend Bob Marley died of this form of melanoma after having the disease first appear under a toenail.
Fourth, Smith is and always has been health conscious. "I spent years performing breast self-exams, watching my salt intake, trying to be saved from diabetes," she reveals.
Fifth, Smith's melanoma spread beyond the skin. "Yes, skin cancers can and do travel and…melanoma can be more than just a mole," she says.
In a profile published by the Claire Marie Foundation, Smith said that at age 28, during the first semester of her doctoral program in sociology at Syracuse University in New York, she had a recurrence of stage 3 melanoma. "I was devastated. The disease I thought I had beat at age 23 was rearing its ugly head again. Furthermore, the lump I had detected in my bikini line almost a year and a half earlier was not the inflamed lymph node that my gynecologist assured me it was and it was not the result of some minor infection that my primary care provider's assistant diagnosed. It was a lymph node filled with cancer."
Sixth, Smith, who appears to be the picture of health, has "proof" of her disease, she says, including scars from surgery, radiation, and interferon injections as well as lymphedema.
Seventh, Smith asserts that "merely surviving is not enough" for a patient with cancer. That's an assumption that her radiation oncologists had. "As I asked about any potential harm that pelvic radiation might have on my ovaries, and inquired about fertility preservation I was told, 'We don't have time to worry about that Jackie, we're trying to save your life.' Being complicit and compliant during that conversation is a choice I regret even today."
American medicine and society are working to "usher in equity in healthcare and beyond," Smith observed in her concluding remarks. "It's time we work together to foster inclusive spaces. In so doing we must open our minds. It is time we understand that outliers do exist and deserve to be treated with respect and dignity."
Smith concluded: "As we work to foster openness and uplift marginal voices we will begin to truly center the patient and cultivate mutual respect, openness, and understanding, which promotes equity for every patient, every day, everywhere."
American Society of Clinical Oncology 2021 Annual Meeting: ASCO Voices Session. Presented June 5, 2021.
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Cite this: 'Check Your Assumptions at the Door,' Advises Outlier Patient - Medscape - Jun 15, 2021.