Lilypond's Story

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"I was first diagnosed with breast cancer in 2005, stage I, grade 3, triple negative. That should have been an indication. My surgeon shrugged his shoulders and said, 'We have no idea where this came from.' The fact that my grandmother had died of breast cancer and my mother had died of ovarian cancer should have been a clue, but no one suggested genetic testing to me at that time. I had a lumpectomy and went through chemo and radiation. I had annual mammograms for several years which all came back as 'normal.'

"My niece, who was in her early 30's had a very astute doctor who, upon learning of her family history, suggested she undergo genetic testing. Her results came back positive for the BRCA2 gene. She was terrified and opted for preventative double mastectomy. Within a year of her results, my annual mammogram showed 'suspicious' cells in my other breast. Those were diagnosed as stage 0, in situ. Knowing I had the time to do the research, I opted for genetic testing, as well. My niece was kind enough to share her testing results with me so I didn't have to take the broad spectrum tests, but focus on this one thing. I first had to meet with counselors and geneticists who drew up a whole family tree. I think they had a pretty good idea that this was genetic and given my heritage and ancestry, told me right on the spot that it was common. Because my niece had already gone through the whole range of genetic testing, which was covered by her insurance, I could focus on testing for just that one gene, which was far less expensive. I tested positive for BRCA2, as well. Rather than mess around with it, I opted for bilateral mastectomy, as well as total hysterectomy (uterus, cervix, Fallopian tubes and ovaries).

"In closing, all I can say is there are a lot of different breast cancers, but if you come up triple negative and your doctor shrugs his shoulders and says he/she has no idea where this came from, get genetic testing. I would also like to say that men can carry this gene and pass it on to their daughters. My niece's mother has no history of any cancer in her family. My brother (her dad) evidently inherited it from our mother, who inherited it from her mother, etc., etc.

"Knowing there is a genetic predisposition can be helpful and hurtful."

-- Lilypond, tested positive for BRCA2 genetic mutation

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