I am trying to find women who are BRCA positive but NOT choosing to have prophylactic surgeries. I have no family history of breast or ovarian cancer. This is a lonely place.
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I'm sorry to hear you're in that situation. My family has the opposite problem: a strong family history of ovarian and endometrial cancer but no mutation that we can identify. My mother and both her sisters did have prophylactic hysterectomies 30 years ago before there was genetic testing. But that wasn't an option for my sister and me, since we can be tested and don't have any of the mutations that are tested for.
I was wondering why you decided to get tested? What did the genetic counselor say about your results?
My sister, who is 9 years older than me, pursued” 23 and me “for more in depth health info., then got BRCA positiveness confirmed in medical system. I will refrain from comment on why she did this. She then dispensed this information to everyone involved including my 2 grown daughters, both of whom have the gene. By logic, since my husband does not have gene, this means I too am a lucky owner. My daughters are actively pursuing surveillance and will probably engage in prophylactic interventions eventually. Up until now, I have chosen to do nothing except add ultrasound to my annual mammogram. My youngest daughter begged me to at least consult with an oncology GYN. To do this, I first have to have my genetic test, which is in process now. I only have one ovary ( the other was removed in the 90’s) and am not interested at all in prophylactic surgery, putting myself into a 2nd menopause et etc.. With no family history, I personally do not want to have any health organs removed. I have lived a great life and will fight whatever comes if it does. I will be supportive of my daughters decisions for their health. I know knowledge is power but this knowledge is of the kind I did not want – emotions and ramifications are indescribable.
Ugh, what a mess. You definitely should make this decision yourself and not let family members pressure you. Prophylactic surgery is a big deal and not something you should do unless it feels right to you.
Annual screening seems like a reasonable compromise. My sister is now having an annual transvaginal ultrasound, given our family history (including me).
Thank you! I need all the validation I can get.
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