Cancer Survivor Spotlight: Meet Alicia

Alicia Staley: Three-Time Cancer Survivor

Alicia Staley was only 19 years old and working through her sophomore year at Syracuse University when she was diagnosed with Hodgkin’s disease, a cancer of the lymphatic system. In order to diagnose her sickness, the doctors ordered biopsies on every major organ in her abdomen. They even removed her spleen, appendix, and a section of her hip.

The diagnostic process was bad enough, but the treatment and recovery was much worse. Alicia endured eighteen weeks of radiation and twelve rounds of chemotherapy, which consisted of four different drugs and brutal side effects. “I lost all my hair and lost a ton of weight,” she says. Despite being desperately ill, she persisted in her engineering degree. When Alicia finished her treatment for Hodgkin’s after three years, she thought her bout with cancer was done.

Alicia Staley Patient Advocate

Alicia Staley Patient Advocate

But as a 21-year-old cancer survivor, she felt somewhat adrift. “I just remember how alone I felt, how isolated I felt,” she says. “I had the best friends and family in the world, but there was still something I knew that was missing from my recovery.”

She knew that she needed to connect with others who had similar experiences, but she didn’t know where to turn. Survivorship came with a lot of unexpected changes. She learned that there was no more “normal” for her life. “Normal is a vaporous state that’s never achieved by anyone,” she says. “Your life evolves.” She also had to learn to let go of her treatments, which felt like stepping away from a safety net. “For some people, chemo can act as a security blanket; it reinforces that you’re doing something to deal your cancer,” she says.

Looking for Community

Unable to find the community and support she was searching for, Alicia’s recovery path was still not over. More than ten years later, on April Fool’s Day in 2004,  Alicia went in for a routine checkup. “When the technician came back into the mammography room to request a second set of films, I hoped she was joking. When she returned ten minutes later for a third set, my stomach sank. My gut instinct told me it was cancer,” Alicia remembers.

Alicia Staley Patient Advocate

Alicia Staley Patient Advocate

She was right. She then underwent surgery and five days of intense radiation for breast cancer. And for two years, she took Tamoxifen, a common anti-estrogen drug that helps to reduce tumor growth and minimize chances of the cancer returning. “Sometimes the cure is worse than the disease,” Alicia says. “I dealt with horrific side effects from Tamoxifen—dry eyes, night sweats, bone pain, weight gain, migraines, insomnia, fevers.”

Despite efforts to contain and eradicate her breast cancer, Alicia was diagnosed yet again in November 2007. This time she went the hard route. “I opted for major surgery—a double mastectomy,” she says. Afterwards she spent three months in recovery and rehab. But she was cancer-free, and has stayed that way for the last eight years.

Dealing with cancer is a grueling experience, and Alicia believes that patients need more help preparing for life after recovery. “I don’t think that enough time and energy is spent on educating cancer survivors about life after cancer,” she says. “In my own case, it took some time for me to accept my cancer diagnosis and build a confident life as a cancer survivor.”

Cancer changes you in unexpected ways, and joining a community of survivors is an important part of recovering—emotionally and physically. Alicia found that community by connecting with other survivors through blogging and social media. Today she mentors others as a part of the Cure Forward community.

If you’re a cancer survivor, you don’t need to work through this alone. Our community at Cure Forward can connect you with others like you who have had similar experiences and give you the chance to learn from their wisdom and experiences. “We’re not defined by geographic boundaries, we’re not defined by the hospital system where we might have received our care, we’re not defined by the support groups that are set up just in our local communities. We are a global, worldwide support group,” Alicia says.