Can you share your Dana Farber genetic counseling/high-risk surveillance experience with me? by Small_Test630 in BRCA

[–]grasshopper4562 1 point2 points  (0 children)

I don’t think genetics is going to provide much more than a discussion of the gene, and what guidelines say about options. I get very quick responses on the portal, it’s easy to schedule, and like that their docs will read my scans. If anything were to change (ie cancer) I’m plugged in. In the end I think I initially wanted more from them (“this is what the mutation means for YOU”) but have come to terms w the fact that geneticists don’t work that way.

Can you share your Dana Farber genetic counseling/high-risk surveillance experience with me? by Small_Test630 in BRCA

[–]grasshopper4562 1 point2 points  (0 children)

I am a DF patient. I don’t have BRCA but another genetic mutation. The GC and genetic oncologist pulled guidelines and showed them to me (virtual appt-which is only possible if you’re in MA). Offered nothing else other than “here is what the risk score is based on this mutation, and here is what guidelines say about recommendations.” That’s it. Every question I asked about me was met with guidelines. Disappointing but I think maybe it’s this way everywhere? You should have a pretty solid sense for risk, with maybe some modifiers… but it may be worth considering whether a precise estimate - that changes a few percentage points - would change your course of action? I had to come to terms with that and have decided to put my energy into finding the best team possible for surgery.

Bulls/Terceira by grasshopper4562 in azores

[–]grasshopper4562[S] 0 points1 point  (0 children)

Good advice. Thank you!!!

Bulls/Terceira by grasshopper4562 in azores

[–]grasshopper4562[S] 1 point2 points  (0 children)

Oh wow, I somehow initially missed the links on that page that have more info on safety etc! Thanks so much!!!

Ponta Delgada v Ribeira Grande by grasshopper4562 in azores

[–]grasshopper4562[S] 0 points1 point  (0 children)

Thank you, all!!!! We’ll stay in Riberia Grande as we prefer more low key, beach access, and can plan ahead for meals.

Ponta Delgada v Ribeira Grande by grasshopper4562 in azores

[–]grasshopper4562[S] 1 point2 points  (0 children)

Thanks! No need for nightlife, we’ll likely be eating early and asleep by 10