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A Personal Story of Preventative Ovarian Removal

A few weeks ago, at the American Society of Clinical Oncology (ASCO) conference, I walked over to the Bright Pink organization’s booth to introduce myself. In doing so, I met a young woman manning the station as a volunteer for the organization and we hit it off immediately, sharing stories about our kids and families. As the conversation gravitated back toward our respective organizations, she told me that her sister, Kristin Nelson, had undergone fertility preservation prior to having an oophorectomy. She gave me Kristin’s information and told me to contact her to learn more about her experience and possibly help others through her story.

Immediately upon getting in touch with Kristin, she was very open about her experience and the impact it’s had on her life 3 years later. At 34 years old, Kristin tested positive for the BRCA1 gene, making her significantly more susceptible to breast and/or ovarian cancer than someone without the gene . Her parents urged her to get tested for the gene after 3 out of 4 of her paternal aunts were diagnosed with either breast or ovarian cancer, one testing positive for BRCA1 as well as her father.  “I was shocked when I found out I had the gene. I was 34 years old, single, I didn’t know where to turn. I always thought about my fertility and wanted to have children so the thought of having to get rid of my ovaries was devastating.”

On the advice of a Clinical Psychologist specializing in medical decision-making, Kristin began looking into fertility preservation. After several mammograms, MRI’s and biopsy that proved to be negative, she knew she had to be proactive in order to save both her life and her fertility. She met with a fertility specialist and decided to bank both eggs and embryos before undergoing an oophorectomy. She also donated ovarian tissue from both of her ovaries to the Oncofertility Consortium in 2008 for research. A month later, she had a double mastectomy (removal of both breasts) and began showing symptoms of menopause.

Now at 38, Kristin has become the “go-to-girl” at Bright Pink when young women need to have their ovaries removed and are struggling with the repercussions of that. “I have never felt an ounce of regret because I took control of the situation.” This is the message that Kristin tries to convey to the women she speaks with – to be proactive and take control of your health and your fertility. To learn more about the Bright Pink organization or about your fertility options via information contributed by the Oncofertility Consortium, please visit www.bebrightpink.org.

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