PALB2 positive no cancer diagnosis

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iheartlucy
iheartlucy Member Posts: 2
edited December 2016 in Genetic Testing

Hi, I am 44 years old and recently tested positive for the PALB2 gene. My mother died of ovarian cancer at 52 and my grandmother died of breast cancer (after 3 recurrences) at 82 and my uncle died of brain cancer at 58, my aunt (64) is awaiting her genetic testing results...great aunts-uncles have had these cancers as well. It's been suggested that I have prophylactic breast and ovary/fallopian removal surgery soon. I had a clean breast MRI last week and am in good health. I am torn between having both these surgeries now (they can do everything in the same surgery), only having ovaries removed now and waiting a few years on the breasts since the risk seems to rise significantly after 50 or screening?

Would so appreciate hearing others experiences, thank you.

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2016

    Hi iheartlucy and welcome to Breastcancer.org!

    You've come to the best place for support and to meet others who are facing the difficult decisions you're dealing with. We're sure others will be by soon to offer their advice!

    In the meantime, you may want to check out the main Breastcancer.org site's pages on What to Do if Your Genetic Test Results Are Positive and Testing Positive for Less Common Gene Abnormalities.

    We hope this helps, and look forward to hearing more from you! Please let us know if you need any help at all while navigating these discussion boards!

    --The Mods

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited December 2016
    Was it your genetic counselor who suggested the surgeries? If so, you may want to consult as well with a surgical oncologist regarding prophylactic mastectomies. You may well get the same input but it might be more nuanced. You could also discuss whether risk-reducing treatment such as tamoxifen would be appropriate. Good luck.
  • iheartlucy
    iheartlucy Member Posts: 2
    edited December 2016

    Thank you for the reply. I got the prophylacticsurgery suggestion from a genetic counselor and surgical oncologist....I am going to get another opinion as well and not rush into anything. Very best to you!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2016

    Sounds like you're getting feedback from multiple places, so that's good. I had a variance on the PALB2 gene, so I'm in the waiting period to see if it's actually a mutation. Good luck in your journey, and if you can update that would be great.

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