BRCA testing?

I was diagnosed with LCIS 13 years ago and my risk is further elevated by family history of bc (mom had ILC).. I had lumpectomy, took tamox for 5 years, have been on Evista for over 7 years now, have done high risk surveillance of alternating mammos and MRIs for years, had a TAH/BSO (complete hysterectomy with removal of ovaries) 11 years ago, but that wasn't due to the LCIS (I had large ovarian mass that turned out benign).. My first oncologist never pushed for BRCA testing, but 2nd and 3rd did (first 2 retired !), I finally went last year and they did the counseling, but said my insurance co. wouldn't pay for the testing, "since LCIS is not considered cancer". so it stopped there. HOwever, the genetic counselor said they would cover testing my mother, since she was the one with the invasive bc (ILC), and that would help give me (and my sisters) more answers, so we will probably get her tested this winter. There certainly is no rush to be BRCA tested with LCIS.

anne

I have posted here many times encouraging women to speak with a licensed genetic counselor before considering any genetic testing. Unless your OB is also a geneticist, he/she shouldn't really be ordering any tests. In addition to treatment decisions, genetic testing can impact your ability to get disability, life or long term care insurance. An LGC can also explain potential issues with your family members if you test positive for a harmful mutation. An LGC can help you understand what a variant of unknown significance might mean for you going forward. Or if a negative is a true negative or an uninformed negative. A LGC also will create a case file for you that would be used by your insurance to determine coverage (family pedigree including family and personal history of cancer and other diseases, ethnic background, what genes should be tested - BRCA might not be the first test you should have, etc). Whether or not your insurance covers you for the test, please consider speaking with a counselor to get the full picture of what genetic testing entails.

There have been several times on the boards that I have seen women's gynecologists "jump off the deep end" when it seemed to me they had very little or at least poor understanding of LCIS.

Most insurance companies have a set protocol for who qualifies for genetic testing, based on family history. A maternal second cousin probably comes nowhere close to being considered a risk factor for you.

Yep, their specialty really isn't above the waist, and I wouldn't expect them to have much knowledge of LCIS. It is really not well understood, even by breast specialists. Everything about it seems to be contoversial. I just hold on to the fact that the majority of women with LCIS do not go on to develop cancer