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Julia Hughes: Serving Others as an MBC Patient Advocate

Julia Hughes pursued an aggressive treatment plan following her stage 2 breast cancer diagnosis in 2015. Three months later, her doctors confirmed her cancer had metastasized, estimating she had six months to live. Her cancer has since spread to her bones and brain, leading to double-hip and brain surgeries. Julia has now been living with MBC for seven years.

“I made it through both kids graduating high school and both kids graduating college, but there is still that bitter-sweetness of, ‘I’m still here, but now what?’ I’m on a different treatment plan now, and there have been new treatments and a lot of new studies since my original diagnosis,” said Julia. Komen has changed a lot in seven years since I was diagnosed with MBC, too.”

Julia’s involvement with Komen began with the local Race for the Cure in Hawaii, her home of 20 years. As she came to know Komen staff and her local race director, Julia gradually became more involved with Komen Hawaii as an MBC patient advocate.

“I feel like I’m supposed to say yes to opportunities as a patient advocate in the sense that I believe that I’m supposed to lend my voice to the cause. There’s got to be a reason I’m still here. I believe God has put me here for this purpose: to serve others, whether it’s with Komen or wherever I’m needed.”

When asked to join Komen’s MBC Steering Committee, Julia agreed to once again lend her voice to promote critical initiatives for people living with MBC. She hopes her work on the committee will provide a national platform for MBC and initiate more programs to better serve the MBC community.

“I was discouraged for a little while when I started advocacy work because I realized that MBC wasn’t a big part of the story that was out there. It was all about early prevention, early cures. I thought, ‘No, that’s not really how it works for people with MBC,’” Julia said. “I went to a breast cancer event at a local hospital, and it was all about the stories of how people had been cancer-free for five years or 10 years, and how remarkable their stories are. I left there in tears because I’m not in that group.”

Julia became heavily involved in educating her local community about MBC, and she still sees a vital need for further MBC education nationwide. She hopes to bring her passion for MBC education and defining “what MBC looks like” to the committee and broader community.

“I hope that it becomes more common knowledge that MBC is a possibility. It’s a real thing; it’s out there. Gaining more funds for research is critical, because if you end up curing MBC, you’ve cured breast cancer,” Julia said.

“Equality is also a major issue. There are a number of groups that aren’t getting screened or getting the care they need. It breaks my heart that there are people dealing with the disease who can’t afford the medication. If you don’t have insurance, or you don’t have the means to pay for treatment, or you don’t have a support system or you just don’t know how to get information – the list of needs people with MBC have goes on and on.”

Learn more about the MBC Steering Committee and meet the members here.

Statements and opinions expressed are that of the individual and do not express the views or opinions of Susan G. Komen. This information is being provided for educational purposes only and is not to be construed as medical advice. Persons with breast cancer should consult their healthcare provider with specific questions or concerns about their treatment.