Hypatia's Story

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What led you to testing? "My gynecologist suggested testing due to my mother dying from ovarian cancer, my history of cysts, and a fibroid that started growing. Insurance required genetic counseling prior to testing. Since my mother was my only history for ovarian cancer and she was diagnosed a couple years over the benchmark age, it took the breast cancer of a cousin to sway the counselor to recommend testing."

What were the results and choices made based on the findings? "BRCA1 positive. Chose to have a hysterectomy and increased monitoring of my breast. Two and a half years after the hysterectomy, breast tumor found on MRI. Had bilateral mastectomy, no reconstruction in September followed by four cycles of TC chemo."

Was payment an issue? "No, insurance covered after genetic councilor recommended testing."

How have you discussed with family? "During the genetic counseling phase, I contacted family to get health history. It was difficult to uncover some of it as 'cancer' was not something older family members talked about, but younger ones tried their best to fill in the gaps. Contacted them again to share results. My sister's doctor tested her for the specific gene mutation I have. Her test was positive as well. She had already had a hysterectomy and is now having increased monitoring of her breast."

What suggestions would you have for others? "Don't put off seeing your doctor for routine check-ups. Be kind to yourself. Be persistent! The genetic counselor felt that the lack of history on my mom's side and her diagnosis of ovarian cancer at age 53 (50 and below is the benchmark) was not enough to test me. It took the early diagnosis and death of a cousin on my father's side from breast cancer to get the recommendation. After the positive result, the counselor stated it was probably from my mother. We also discussed how the lack of history can be because:

  1. Not everyone with a mutation gets cancer
  2. 'Cancer' being a dirty word that older generations may not share with family
  3. Family members dying of other causes before a breast or ovarian cancer developed
  4. Hysterectomies prior to ovarian cancer developing
  5. Passed down from a male family member (no ovaries, lower chance of breast cancer than female)

"Knowing you have a mutation gives you the power to do something about it."

-- Hypatia, tested positive for BRCA1 genetic mutation

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