Inflammatory Breast Cancer Survivor: Catching Up With Valerie Fraser

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Topics include: Patient Stories

From our coverage of the 2017 ASCO Survivorship Symposium in San Diego, Patient Power caught up with inflammatory breast cancer survivor and patient advocate, Valerie Fraser. Valerie is passionate about advocacy, especially research advocacy and survivorship. She talks about the impact that patient advocates can have on others living with cancer and the role of advocacy in survivorship.

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Valerie Fraser:

Well, I think you interviewed me and my doctor, Massimo Cristofanilli, in about 2009, and at that point, I had finished my treatment for inflammatory breast cancer. I had had an outstanding outcome. And Massimo and I talked with you about how aggressive the disease is and why it’s important to seek out expert opinions—and also how patients should educate themselves on the disease because of the differences in the way inflammatory presents itself and also the treatment that can be different for inflammatory breast cancer. 

Well, I became very passionate about advocacy and survivorship. One of the passions I had, survivorship, but also research advocacy. And so I really delved into it, wholeheartedly, and I started working with Dr. Cristofanilli on a number of initiatives for inflammatory breast cancer, because I met so many women who had the disease through my own treatment that were struggling with the disease, the challenges that present with the disease, and many lost their lives. And so my compassion for that led me into becoming a research advocate. And I felt that I could use my research skills that I had in the legal field for 30 years to help in the medical field.

Well, I just hit my 10-year anniversary this month in survivorship, and so I don’t talk about that a lot, but it’s a huge milestone for inflammatory breast cancer. So I know many women still recur after that period of time, but I feel, and I felt in the beginning and feel now, that my outcome and the outcome that I had that’s so incredible is because I had an immune response. And I was unique in that way, and the treatment that I had was unique. And so I think all of that benefitted me. So, as a result of that, I became very involved on the research advocacy end and helped Massimo and many other doctors come together to collaborate on research for inflammatory breast cancer. 

So we formed an international organization, and so I speak nationally and internationally. I’m here at this conference, because I think this is wonderful what ASCO is putting on for survivorship, and I’m very involved with the National Coalition of Cancer Survivorship, too.

Well, the power of your voice as a survivor, telling your story, connecting with other patients, researchers and clinicians, is so powerful. And when I was diagnosed in 2007, little did I know that I would be at this crossroads in my life where now I’m making such a big impact in the advocacy world. So I would encourage patients to explore the option of getting involved in advocacy and going out and telling their story, because it really transcends your disease. And it helps you, too, to get through some of the challenges of having cancer. And I know when we all hear those words, it’s like a bomb dropped on our life.

And I was just talking to a patient here the other night about post-

traumatic stress and how she felt that that had impacted the journey that she had through cancer. And I told her, I said, well, in my case, being an advocate helped me to go through my journey in that regard, and it transcended my disease. And so it was great, and it was where my heart was, and so I would really encourage patients to educate themselves and then become involved. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on March 7, 2017