newbie - questions about BPM & reconstruction

LL99LL

Hi everyone,

I'm new here and I'd love to learn from you all about some things I'm trying to sort out. I'm strongly considering bilateral prophylactic mastectomy (w/ either DIEP, implants or no reconstruction). This is due to family history, a recent LCIS dx, increased risk due to possible neurofibromatosis type 1, and wanting to be around & healthy for my toddler son. Can you enlighten me about the following?

• I think I'd be eligible for nipple and skin sparing since no cancer has been identified at this point. But I've heard it also has to do w/ breast size? Any other factors to consider?
• I've heard tissue expanders can be really painful. Are they only used for implants? Ever used for DIEP?
• Have you asked DIEP surgeons what their failure rate is? (I think this means how often the blood vessel connections fail and some tissue dies?) What range of failure rate are you comfortable with?
• With BPM (no cancer yet identified), is there risk of lymphedema? Are lymph nodes ever removed?
• What are the potential long term problems resulting from BPM apart from appearance and lack of skin sensitivity? I've heard some women mention continuing pain even several years later, or long term loss in muscle strength even when abdominal muscle is not used w/ DIEP or implants…
• Can anyone with Kaiser in the SF Bay Area let me know what facility/doctors you had for mastectomy and/or reconstruction, and how you felt about them? (We can private message if you prefer.)

Thanks so much for your help!