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MDS and BRCA1 variant

Home Demo forums Patient Message Board MDS and BRCA1 variant

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    Bonnie Shaffer

    I’ve recently been diagnosed with MDS with Multilineage Dysplasia (Red Blood Cells and Platelets). I am not on any treatment yet, but my red blood cells are low and I have refractory anemia.

    I also learned that I have the BRCA1 variant. My genetic counselor says I have a 87% of developing breast cancer. I have about a 44% chance of ovarian cancer.

    I am planning to have a double mastectomy and have my ovaries and Fallopian tubes removed once all my genetic tests, sonograms and MRIs come back.

    Has anyone else been in this situation? I’d love to hear your experience.

    I am thinking I should get these procedures done before my MDS gets worse.

    Thank you!

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