Amanda West’s journey with breast cancer began unexpectedly, as she received the diagnosis of early-stage breast cancer in her late 30s soon after accepting her dream job at Salesforce.
About 4% of all new invasive breast cancers diagnosed in the U.S. occur in women under 40. A breast cancer diagnosis is shocking for young women. At a time in life most often focused on family and career, issues of treatment, recovery and survivorship suddenly take top priority.
As an adopted young adult with no knowledge of her family history, Amanda experienced a lack of resources and support tailored to her age group. This realization, combined with her own personal journey, fueled her determination to make a difference and help others facing a similar situation.
“At that time, I wondered why we couldn’t share data easily so that researchers and doctors could have my unique breast cancer information to make better decisions on treatments and one day finding a cure for the disease,” Amanda said.
Amanda underwent chemotherapy, radiation, two lumpectomies and reconstruction surgery over the course of five years, as well as two rounds to freeze her eggs. Throughout the course of her treatment, she found it difficult to talk to her friends about the range of emotions she experienced.
“My friends were so young and couldn’t relate to what I was going through,” Amanda said. “I didn’t have anyone to turn to for answers to my questions. I wasn’t sure where to get information. Every support group I found was geared toward older adults. So I went through the course of my treatment quietly and unsure of where I could go to get the support I needed.”
Amanda’s experience with breast cancer led her to reflect on the importance of helping others who may not have access to trusted resources. After a transformative hike in Hawaii inspired her to be “koa,” which means brave in Hawaiian, she decided to speak out and share her story publicly so that other young adults with breast cancer could have the support she never had.
Her nonprofit, Koa Life, will provide a user-friendly online portal of resources for people who are diagnosed with breast cancer. The platform aims to connect individuals with relevant and trusted information, services and support based on their age, stage and type of cancer.
“I’ve always been very passionate about giving back,” Amanda said. “I learned that from my parents. I always believed if we can help people from diverse populations share their breast cancer information with researchers, we can help future generations avoid what I went through.”
This realization led Amanda to partner with Susan G. Komen, where she joined the Patient Outreach Committee for ShareForCures. Susan G. Komen’s ShareForCures is an innovative research registry designed to facilitate the secure sharing of health information for the purpose of advancing breast cancer research. By giving individuals the option to contribute their health data voluntarily, the initiative aims to accelerate scientific studies, foster collaboration among researchers and ultimately improve outcomes for those affected by breast cancer.
“As a young adult with breast cancer, we need to do more to encourage young adults to participate in research,” Amanda said. “My experience showed me that the older generation reacts differently to a diagnosis, and it’s so valuable to give the right tools to the younger generation. I hope data sharing through ShareforCures will resonate with all people.”
Being part of the ShareForCures Patient Outreach Committee provided Amanda with an opportunity to contribute her patient perspective and technical expertise. She recognized the immense value of a trusted organization like Komen driving the initiative, ensuring that data would be handled with care and used to benefit breast cancer research. The ability to see the impact of shared data on research outcomes became a crucial motivator for Amanda to encourage more individuals to participate in ShareForCures.
“Because of Komen’s world-renowned track record in research, I’m personally encouraged that the data I send will be used by researchers in a way to hopefully help someone else,” Amanda said. “It’s legitimate. I know Komen is going to do this initiative justice, and I can feel safe and trust that something positive will be done with my data.”
Amanda also emphasized the need to focus on younger generations and provide them with the necessary tools and information to navigate their breast cancer journey. By tailoring resources to the specific needs of young adults with breast cancer, ShareForCures can help bridge the gap and ensure that no one feels lost or unsupported.
“When I got diagnosed and was going through treatment, I didn’t tell anyone at work because I wanted to pretend it wasn’t happening to me,” Amanda said. “I was scared and embarrassed. But now I am comfortable telling my story and advocating that survivors, particularly young survivors, participate in research. I want other young survivors to know that they don’t have to be afraid to share their story.”
Through her advocacy work, Amanda continues to raise awareness about breast cancer in young adults and ShareForCures. She firmly believes that empowering individuals with information and enabling them to contribute their data to research efforts will create a future where breast cancer is better understood and effectively treated.
“My hope is that all people who are diagnosed with breast cancer can be ‘koa’ – brave enough to share their story, participate in research and be involved in finding the cures for the generations that come after us,” Amanda said.
By participating in ShareForCures, individuals can join Amanda and countless others in a united effort to transform breast cancer research and ultimately save lives. Learn more about ShareForCures today.