Anyone with ILC who is BRCA+?

geneskirt

I was in a familial screening program by the age of 32 as my mother was diagnosed with BC at 32, and had mets to liver by 37.  She died when i was 10(1975), and she was an only child. Her mother had BC as well, but not until 74 yrs old. Strangely enuf, my Paternal grandmother died of Ovarian cancer at 46. Gene risk appears to be in both maternal and paternal side...... but, i am the first and only to be tested(BRAC2 is confirmed - BRACA1 results are still pending. Tested 6 months ago). 

I have a surgical  consult on Sept 28 to discuss the possibility of Ovarian removal, Still undecided.

I have three beautiful daughters and a son!!!! too young to be tested.   My sister(52) and my neice(32) are currently seeking gene testing. 

Sigh.....

My thoughts were mixed upon confirmation.  Sad for the risk factor for my beautiful children... empowered that I opened the door for them to expert genetic testing and councelling re: ethics, confidentiality, and of course, education on prevention(my 16 yr old quit smoking!!!! thank God!),OUr genetic councellor has made herself available to my husband and children, as well as the whole preventative oncolgy dr.s.  They are our FRIENDS AND VERY personable!  Professional and cutting edge in research and prevention.  They help us feel empowered and guide us when it comes to ethical issues, legal issues and descrimintaion!  They are more than just 'lab techs'.... they are medical scientists! I hope that when my children  are tested (if they make that informed choice for themselves) they will be NEGATIVE and be relieved of the unnecessary FEAR that i lived with my entire life, b4 we had gene indentification. 

BE BRAVE!!!!! BE INFORMED!!!!! CONQUER CANCER AND ITS FEAR!!!!!!

Captswife

I have ILC - i had a lt mastectomy and lymph node dissection (32 removed 2 positive) on 09/03/14

BRCA results came back after surgery and I do have the BRCA 2 Mutation.  I meet with surgeons later this month to plan on removing rt breat and ovaries (uterus already gone).  I am completely overwhelmed!

vlnrph

Couple thoughts since Captswife bumped up this older thread for us: genetic counseling issues/concerns have greatly expanded in the past 18 months since the Supreme Court set aside the Myriad company patent & Angelina Jolie shared her story. Costs have come down so insurance is more likely to cover these investigations, considering it part of a disease prevention strategy. 

More things such as the less common mutations can also be looked at.  If your basic BRCA tests were negative some time ago, it might be good to consider having one of the newer panels run. Even those with minimal family history may qualify. I especially like the options Ambry offers - there is lots of excellent information on their website.