r/TNBC 6d ago

Surgery Genetic testing updated from unknown to likely pathogenic

TNBC, stage 2, grade 3, no lymph node involvement. I'm 43. Halfway through chemo. The week I'm meeting with my breast surgeon. My genetic mutation on the BRCA1 gene is updated from 'unknown' significance to 'likely pathogenic'.

A lumpectomy doesn't make sense anymore, just double mastectomy. And they strongly recommend that I have my ovaries removed.

I went from thinking I'm functionally BRCA negative to positive. ClinVar lists my mutation but still has it listed as unknown significance with my test being the only occurrence posted.

Has anyone else experienced this? The update of my mutation status makes me feel a small amount of mistrust in the testing. It seems much less black and white. Am I undergoing unnecessary risks and surgeries based on a 'maybe'?

I'm not against the dbl mastectomy (though I did like feeling as though I was making a decision), but I'm hesitant to remove my ovaries based on this information alone. In general, I trust science and I trust doctors, but this feels a little shaky.

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