Patient Perspective and Personal Journey of Treating a "Rare Cancer"

I was diagnosed with rare anal cancer. As overwhelming as the diagnosis was, it was complicated by limited treatment infrastructure and clinical research, side-effect management, and lack of awareness and support organizations. Anal cancer encompasses so much more than receiving prescribed treatment and focusing on recovery. It requires patients to become experts on their disease, its treatment, and side effects. Even more challenging is finding support and advocacy. My experience has been difficult, complex, and arduous. It is hoped that this article will provide a voice for the many that have been silenced by stigma of anal cancer.