Patient and Caregiver Insights on Basal Cell Carcinoma

Understanding the Journey of Basal Cell Carcinoma

On October 16th, Skin Cancer Champions hosted a patient and caregiver panel. This event aimed to provide a pharmaceutical leader with meaningful insights into the lived experiences of those affected by basal cell carcinoma (BCC). As new drug developments emerge, understanding these experiences is crucial. The session was moderated by Emily Karn, a medical student at UMass Medical School and the executive director at Skin Cancer Champions. The panelists included patients diagnosed with multiple BCCs and other cancers, such as Merkel Cell Carcinoma, Spindle Cell Sarcoma, Melanoma, Advanced Squamous Cell Carcinoma, Lymphoma, and Breast Cancer.

Personal Stories of Resilience

Panelists shared their personal journeys, detailing their progression from initial diagnoses to subsequent treatment plans. They explained how treatment choices were made collaboratively with surgeons and oncologists. The focus was always on maintaining quality of life. The discussion highlighted both emotional and practical aspects of their experiences. Caregivers play a critical role throughout the treatment process, and their support is invaluable.

The session underscored the importance of centering patients and caregivers in the development and delivery of new therapies. Their insights can guide pharmaceutical leaders in creating better solutions.

Key Insights for Pharmaceutical Leaders

Each panelist brought unique perspectives aimed at informing the pharmaceutical leader. A common theme emerged: a cancer diagnosis can become a way of life. It's essential to treat every individual as unique. This philosophy extends to providing educational materials, support services, and tailored clinical treatment.

One panelist, who had dealt with multiple BCCs of varying appearances, emphasized the need for comprehensive educational materials. Visual aids depicting BCCs are crucial for patients, caregivers, and primary care physicians (PCPs). Each diagnosis can be unexpected, as none of her BCCs looked the same.

Distributing educational materials to PCPs can be lifesaving. These physicians may not frequently encounter skin cancer but are often the first point of contact for patients. Engaging PCPs can accelerate referrals to dermatologists for timely diagnosis.

The Promise of New Treatments

Advances in pharmacology offer hope for patients and caregivers. The introduction of new drugs that treat cancer, reduce recurrence, or improve survivorship provides the prospect of a sustained and improved quality of life. Panelists stressed the importance of accessible and well-publicized clinical trials. Participation can save lives and allow patients to contribute to future care. Clinical trials also support increased observation and can expedite additional treatments when required.

The Power of Self-Advocacy

All panelists discussed the value of self-advocacy. Caregivers play a vital role in preparing for and attending appointments and treatments. Working with the care team to develop the optimal treatment plan is essential for supporting the desired quality of life.

One patient and his caregiver faced surgery as the standard protocol for treating his aggressive cancer. This treatment would have severely impacted his lifestyle, eliminating activities such as hiking, skiing, and even climbing stairs. With support from radiation oncologists and oncologists, they developed a treatment plan involving daily radiation and participation in three clinical trials. Today, he is in remission from Merkel Cell Carcinoma and is preparing for another ski patrol season.

Navigating Treatment Side Effects

Panelists noted that treatments for skin cancers can cause various side effects. Clear protocols known to both oncologists and patients help mitigate these effects. For example, one panelist experienced a negative reaction to an effective topical treatment for BCC. After the side effect became painful, it was managed with steroids. With this knowledge, she advocated for a shorter treatment cycle and immediate access to steroids.

Weighing treatment risks can ease decision-making. One panelist and his caregiver opted for a clinical drug therapy that affects thyroid function, reassured by the availability of long-standing, effective treatments for such side effects. Another panelist pointed out that patients with multiple cancer types receiving several therapies may need to discontinue a potentially life-saving treatment if a negative side effect arises from another therapy. Care teams must carefully evaluate how to proceed in these instances.

The Value of Open Communication

The panel proved valuable for patients, caregivers, and the pharmaceutical leader. Panelists appreciated the opportunity to communicate directly with the pharmaceutical company. The pharmaceutical leader thanked the panel for sharing their experiences, which vividly illustrated the daily challenges faced by patients and caregivers. Hearing these stories reinforced the importance of the company's work and its commitment to raising awareness about the various skin cancers their medications treat. They always prioritize the needs of patients.

Skin Cancer Statistics and Types

Skin cancer is the most prevalent cancer in the United States. According to the American Cancer Society, more than five million cases are expected to be diagnosed this year. The National Institutes of Health reports that non-melanoma skin cancers, primarily basal cell carcinoma and squamous cell carcinoma, comprise 99% of these cases. Less common types include Merkel cell carcinoma, adnexal carcinoma, extramammary Paget's disease, sebaceous carcinoma, and dermatofibrosarcoma protuberans.

Conclusion: A Community of Support

As we navigate the complexities of skin cancer, it's essential to remember that we are not alone. The stories shared during the panel remind us of the strength found in community and support. By fostering connections and providing trusted information, we can empower ourselves and each other throughout this journey. Together, we can face the challenges of non-melanoma skin cancers with courage and resilience.

For more information and resources, please visit Skin Cancer Champions.