Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the non-melanoma skin cancer community. Skin cancer treatment options are ever-increasing with new testing, treatments, and research information, and it’s important for patients and families to educate themselves with health literacy tools and resources on the latest information in skin cancer care. With this goal in mind, PEN initiated the [ACT]IVATED Non-Melanoma Skin Cancer program, which aims to inform, empower, and engage patients to stay abreast of the latest in skin cancer care.

The [ACT]IVATED Non-Melanoma Skin Cancer (NMSC) program is geared to newly diagnosed skin cancer patients, yet can be beneficial for patients at any stage of disease and for patient advocates. [ACT]IVATED helps patients and care partners stay updated on the latest options for their skin cancer, provides patient activation tools to help overcome barriers to accessing care and powerful tips for self-advocacy, coping, and living well with cancer.

Skin Cancer Disparities

There are important skin cancer risk factors and vital differences to know about how some skin cancers can look and where they occur in different populations. Mary Leer, a cancer survivor and empowerment lead at PEN interviewed Dr. Silvina Pugliese as part of the [ACT]IVATED Non-Melanoma Skin Cancer program. Dr. Pugliese discussed some skin cancer risks including occupational risks of those who work outdoors, at high altitudes like pilots and Air Force personnel or veterans, and older white men. Additional risk factors include those who have undergone solid organ transplant, arsenic in well water, smoking, chronic wounds, wounds or scars, genetic mutations, exposure to radiation, leukemia patients, living near the equator, freckles, and naturally blonde or red hair. Dr. Pugliese further shared about current or previous occupational risks, “…if you are within one of these occupational categories where you work primarily outdoors or have worked primarily outdoors, have had sunburns while working outdoors, have worked at high altitude, it’s important to have your skin checked, to make sure that you have not developed any spots that could be worrisome for non-melanoma skin cancer.”

The appearance of basal cell skin cancer and squamous cell skin cancer may often look different or occur in different locations in skin of color patients in comparison to white patients. It’s important for both patients and patient advocates to raise awareness about the key differences. Dr. Pugliese explained how more studies on squamous cell cancers have shown how locations may vary for non-white patients. “…We know that in skin of color patients we might see more of these skin cancers on the lower legs or on the feet or in genital or perianal skin. And that’s important, because we as dermatologists need to make sure that we’re examining all of these areas when we’re doing a full body skin exam. In addition, about 20 to 40 percent of all squamous cell cancers diagnosed in Black patients are occurring within scars or areas of chronic inflammation such as wounds.” It’s also important to note that squamous cell cancers are often advanced when they’re diagnosed, and so larger sections of skin are more often removed, which may have more long-term impact on the patient.

Basal cell cancer is the most common type of skin cancer and has a different appearance in skin of color patients. Dr. Pugliese explained the key differences in appearance and a rare tumor called Dermatofibrosarcoma protuberans (DFSP). “So it might have more of a purple or blue appearance than the classic pink shiny bump that we talk about. And then finally there is a rare tumor that we call DFSP that is actually more likely to occur in Black patients and can often have a scar-like appearance. This is a rare soft tissue tumor that can involve the deeper skin sometimes into the fat and even muscle.”

Solutions for Improved Skin Cancer Care

Patient education and empowerment are key parts on the path to informed and optimal care. These efforts can take many forms but include approaches like improving clinical trial participation, learning more from credible resources, asking questions to ensure your best care, and helping to educate others about skin cancer.

Clinical trial participation by diverse populations is especially important for the more rare types of skin cancer. Dr. Silvina Pugliese shared about the value that can be derived from research, “…we think about less common skin cancers like Merkel cell carcinoma or DFSP. And when we think about how uncommon these skin cancers can be in skin of color, we realize we’re really drawing from a very small pool of patients. So my point here is that you can make a true impact by enrolling in a clinical trial, especially as we’re looking at what are some of the best treatment options for these more advanced skin cancers or metastatic skin cancers? Because we do need the right patients to be enrolled in order to study these research questions.”

[ACT]IVATED Non-Melanoma Skin Cancer Program Resources

The [ACT]IVATED Non-Melanoma Skin Cancer program series takes a three-part approach to inform, empower, and engage both the overall lung cancer community and patient groups who experience health disparities. The series includes the following resources:

• Occupational Exposures and Non-Melanoma Skin Cancer: Understanding Risk Factors
• How Do Non-Melanoma Skin Cancers Impact Non-White Populations?
• Which Non-Melanoma Skin Cancer Treatments Are Available for Patients?
• Non-Melanoma Skin Cancer Subtypes | Are Some Populations More At-Risk?
• Explaining Skin Cancer to Newly Diagnosed Patients | An Oncodermatologist Weighs In
• Melanoma vs. Non-Melanoma Skin Cancer: What’s the Difference?
• Do Non-Melanoma Skin Cancers Differ in Diverse Patient Populations?
• Non-Melanoma Skin Cancers and Clinical Trials | Advancing Science for Everyone
• [ACT]IVATED Non-Melanoma Skin Cancer Resource Guide
• [ACT]IVATED Non-Melanoma Skin Cancer Resource Guide en español

Though there are skin cancer disparities and variation in location and appearance of skin cancer, patients and care partners can be proactive in gaining knowledge to help ensure optimal care. We hope you can benefit from these valuable resources to aid in your skin cancer care for yourself or for your loved one.

[ACT]IVATION Tip:

By texting EMPOWER to +1-833-213-6657, you can receive personalized support from PENs Empowerment Leads. Whether you’re a non-melanoma skin cancer patient, or caring for someone who is, PEN’s Empowerment Leads will be here for you at every step of your journey.