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May is Skin Cancer Awareness Month! Learn how the Cancer Support Community's patient guides help patient health literacy and promote shared decision-making.
Skin cancer awareness is often in the news, particularly around Memorial Day, when much of the country welcomes the start of the warm summer months and people head outside. Accordingly, Skin Cancer Awareness Month is recognized in May to promote awareness of the importance of skin protection while enjoying the sun.
With more than 5 million cases diagnosed in the U.S. each year, skin cancer is America’s most common cancer. Fortunately, skin cancer is also one of the most treatable forms of cancer. Basal cell carcinoma (BCC) and squamous cell carcinoma (SCC) are the most common types of skin cancer. These nonmelanoma cancers rarely spread to other parts of the body.
Basal cell carcinoma, which accounts for eight out of ten diagnosed skin cancers, grows very slowly and is very treatable. Cancer registries do not even collect information about BCC survival rates because most of these cancers are diagnosed and treated easily in a doctor’s office. The SCC survival rate is likewise very high; when detected early, the five-year survival rate is 99 percent.
However, these high survival rates do not hold for all skin cancers. Skin cancer comes in multiple forms, and, when advanced and metastasized, it can be inoperable and incurable. Melanoma is an aggressive form of skin cancer that is more likely to invade nearby tissues and spread to other parts of the body than the more common BCC and SCC. When a patient has melanoma that has metastasized to distant parts of the body at the time of diagnosis, the survival rate falls to 27.3 percent.
In rare cases, a patient is diagnosed with "advanced" squamous cell skin cancer, also known an cutaneous squamous cell carcinoma (cSCC). This means that the cancer is widespread, treatment is difficult, and chances of survival are small. Cutaneous squamous cell carcinoma represents 20 percent of all non-melanoma skin cancer, and it can metastasize to any organ in the body. Large studies demonstrate a mortality rate of more than 70 percent.
Likewise, patients with advanced basal cell carcinoma are more difficult to treat. Although experts don’t agree on one definition for advanced BCC, it’s generally considered more difficult to treat because it involves an aggressive, fast-growing tumor, or is in an inoperable location.
Treatment options and survival rates are far different for patients with advanced BCC and cSCC than for patients with more common types of skin cancer. In general, there is not much patient information available on advanced skin cancers. This can lead to great confusion among newly diagnosed patients. When patients are told they have skin cancer by their physician, their first move is often to search for information about their disease online. There, they are overwhelmed by the “good news” that the vast majority of skin cancers are highly treatable and curable. But that’s not true for everyone.
“Patients do research, and all they read is that skin cancer is incredibly curable,” explains Claire Saxton, vice president of education and outreach at the Cancer Support Community. “Patients may have been told that they have locally advanced cancer or metastases that are not surgically viable, but when they Google their condition, they learn that skin cancer is curable. There is a cognitive dissonance between what they are reading online and what their physicians are saying to them.”
Saxton says it’s not unusual for patients not to know that their skin cancer is advanced: “They are not clear on what the definition of advanced cancer is, and often they haven’t gotten a clear message from their provider.” When the Cancer Support Community conducted focus groups with patients with skin cancer to gauge their knowledge of the disease, Saxton says that although many patients living with advanced disease knew whether they had basal cell and/or squamous cell skin cancer, they did not understand the extent of their cancer. “They weren’t clear that their cancer was ‘advanced’ or ‘metastatic,’” says Saxton, “just that their treatment and prognosis didn’t match what they read online about the treatment and prognosis for these types of skin cancer.”
Saxton says physician offices built around multidisciplinary care teams are more likely to effectively educate their patients about their specific diagnoses and the treatment options available to them. However, Saxton says those practices are in the minority, and many patients remain poorly informed about their illness until they are referred to a cancer program or practice that treats their specific disease. “Reinforcement of messaging after a patient leaves the office is not happening,” she says.
To help counter this, the Cancer Support Community recently released two patient guides for talking to physicians about treatment options for skin cancer. The guides—one for basal cell carcinoma and one for squamous cell carcinoma—incorporate information about treatment for different questions for patients to ask their dermatologist and oncologist about their disease; patient tips for taking control of their care; information about side effects; contact information for financial and community support; and lists of suggested questions to help patients determine their personal and treatment goals.
These new patient guides are part of an arsenal of patient support materials located on the Cancer Support Community's website. Providers can refer their patients there to access a thriving online patient support community, obtain comprehensive patient education materials, and access a support helpline. New patient materials are always being added.