In order to recreate what the tool would have done for me had it been available when I was making my decisions, I used my age at the time I learned about my BRCA2 mutation (42) and then plugged in all the options in the order I considered them: first I planned surveillance with mammography and MRI; next I considered prophylactic oophorectomy while keeping my breasts and continuing surveillance; after my first MRI had a finding that required biopsy and further investigation I switched gears for immediate mastectomies and oophorectomy sometime in the future, which I ultimately did when I was 46. This is how the decision tool worked for these choices:
The key part of this tool is that it provides visual feedback on the impact of specific interventions. The far left column is what would happen to the average BRCA2 carrier with no interventions (when you use the tool be sure to use the drop down box at the top to select your age and your mutation status i.e. BRCA1 vs. BRCA2). On the far right column for comparison is the average woman's risk absent a BRCA mutation. Obviously, the more "green" in any particular column the more likely you are to be alive at age 70 (the endpoint for this tool and the endpoint for many of the studies as we discuss in Chapter 5 of Positive Results). One thing that is clear to me is that as my understanding of my situation and my risk increased, the better my decisions became. My ultimate decision, which was mastectomies close to age 40 (42 actually) and oophorectomies close to age 45 (age 46) resulted in my risk profile (which is highlighted above) being as close to population risk ask I can get considering when I learned about my genetic status. The tool is not perfect, one can only select from five-year increments for age at certain interventions but in light of the fact that the studies at best use five-year increments for analysis it is certainly the best option available currently.
This tool is useful for BRCA-positive women of all ages who have not been diagnosed with cancer and who are contemplating preventive surgery. We have added it to our Resources page and I will be recommending it often. Many thanks to Stanford and to Drs. Kurian & Plevritis for this tool!
Find the BRCA Decision Tool here.
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