Blood mutation + huge family history

Does your doctor know your breast cancer history?  If (s)he is only offering you mammograms starting at age 40, then I'd seek the opinion of a breast surgeon, who could refer you to a certified genetics counselor.

Since you are at high risk of having an unknown mutation, we don't know the genetics of that mutation.  *If* your mother has a single unknown deleterious BRCA mutation, and assuming your father doesn't carry a BRCA mutation, then each child of your mother has  about a 50% chance of inheriting the gene.  That means that each child has about a 50% chance of NOT inheriting the mutated gene.  For known BRCA mutations, all carriers do not inevitably get breast cancer.  There may be other influences such as environmental or lifestyle factors.

Traditionally, the advice I've seen most commonly for BRCA mutation carriers is in general to start screening about 10 years before the age that the relative got breast cancer.  I'm sure there are exceptions, and can be a risk vs benefit thing the younger you start getting mammograms.  Most papers I've seen recommend yearly breast MRIs for people in this high risk situation.

I think its important that you see a doctor who knows a lot about breast cancer genetics and handles high-risk people.  

Definitely this stuff is way outside the area that an on/gyn can handle. If you have a major cancer center near you, they will probably have genetic specialists and oncologists who specialize in high risk breast patients. There is enuf history in your family to justify going to a pro on this. I would go now, rather than wait til older.

Laura, on the question of whether you need a referral to see a breast surgeon, that depends on your insurance plan.  Check online if your plan gives you online access to coverage, find-a-doc, etc., or call the customer service number that's probably on the back of your insurance card. It's a simple question that your insurance company will be able to answer.  I think it's pretty common these days to let us self-refer to specialists.  Good luck with this!

Why don't you start a thread on bco asking about high-risk clinics in your general area or in your state.  It is also likely that the NCI cancer hospitals, like Memorial Sloan Kettering (which does have one of those clinics), MD Anderson (Texas) and Dana Farber (Boston), as well as others:Mayo Clinic, Johns Hopkins, Roswell Cancer Institute (Buffalo, NY), UCLA, Yale-New Haven, etc. etc. have these high-risk clinics, where a team follows you.  Diagnostic tests would be give appropriate to your specific situation.  I really recommend finding one of these clinics, even if it means travelling once or twice per year for follow-up.  Without a serious problem, you may not need to be seen more frequently at first.  Hopefully you would gain some comfort in doing this.

A genetics counsellor will, also, be able to give you advice on managing your risk going forward, i.e., the type of screening programmes you can set up to ensure that you are closely monitored.

Good luck, Laura! You can also get some good info on GCs serving you area on FORCE website (facingourrisk.org)

Any patient can request a copy of their lab report, to see for herself what the report actually says. It may be a good idea to get the copies of the reports before you discuss it with a genetic counsellor. Maybe there is a BRCA genetic variant of unknown role in the family, or maybe the BRCA test didn't find anything unusual at all ... so all there is is a suspicion that some other gene might be broken. What is the actual story in those lab results, it may make a huge difference for your screening plan.