I have questions about BRCA testing and prophylactic mastectomy

I have Anthem, and they have been wonderful. There has never been a question or roadblock for me to receive treatment. I was diagnosed with breast cancer, which lead to the BRCA test. After finding I was positive, I had a BMX and DIEP reconstruction following chemo. The reconstruction was very expensive and took five surgeries. Anthem never balked at paying. I elected to go out of network so that I could go to a plastic surgeon who specialized in DIEP reconstruction. Anthem paid its fair share. I have a high deductible, so it hasn't been cheap, but the results are amazing.

I have BC/BS for insurance and my genetic testing was covered.  My grandmother died of ovarian cancer (early onset) and my mother has been diagnosed twice (early onset as well).  In addition, the family tree has significant occurrences of breast cancer.

My mother's oncologist suggested she get tested for the BRCA mutuation.  Her insurance covered that testing without issue due to the multiple reoccurrences.  Her tests came back, as we expected they would, BRCA 1 positive.

Her positive result made it much easier for my sister's and I to be tested and have it covered by insurance.  BC/BS covered everything outside my deductible. 

I tested positive in September 2007 for the BRCA 1 mutuation as well.  I moved forward with having both ovaries removed in October 2007 (at age 37).  Insurance covered that as well.

I dond't regret that decision, but I am not going to lie...the hot flahes, weight gain and moodiness were tough in the beginning.  I couldn't take any hormone replacement theraphy to curb the side effects either.

I was being watched carefully by the doctors and every six months was going in for either a mammo or breast MRI.  After 5 years, some worry over test results, I elected to proceed with a double MX with reconstruction (October 2012).  Again, insurance never bocked.  I am about 7 months post surgery.  Physically feeling good but emotionally having some ups and downs.  I think it is all part of the process.  Although I am struggling with my emotions over the reconstruction process thus far, I still don't regret my decision to do this.  At the end of the day, I have my health and will be around to enjoy life.

I have several fat grafting procedures coming up, nipple reconstruction and tatooing that will need to be completed as well.  I don't anticipate insurance denying those claims either.  But, the staff at the surgeons office are wonderful at working with the insurance company.

I wish you the best of luck and please feel free to reach out if you have any concerns or want to talk about it.

Is your mom still alive? It is better if she is tested. If they find she is positive you will be eligible & the test only costs a few hundred dollars.

I was tested because my daughter was worried. I tested negative, thank goodness, and my insurance paid, but it was $4000

From the family history that you describe, it actually sounds rather unlikely that you will be found to be BRCA positive.

"My paternal grandmother was diagnosed with 2 seperated forms of breast cancer" Have any of her siblings or sons or daughters had cancer, and particularly, breast or ovarian or prostate cancer? If not, then this is most likely a 'random' cancer (i.e. not genetic), which is the case for about 85% - 90% of breast cancers. Was she diagnosed post-menopausally? If so, then it's even more likely that this was a random cancer. BRCA cancers tend to develop at an earlier age than random cancers.

"My mothers side my grandmothers sisters each had breast, ovarian cancer and died from it." If the closest cases of cancer on your mother's side of the family are those 3rd degree (to you) relatives, that makes any connection to you quite unlikely. The BRCA gene might well be in your grandmother's family, but this is a gene that we inherit from either our mother or our father. So your grandmother's sisters might have inherited a defective BRCA gene from their father (men are affected too) or mother but your grandmother might have inherited a healthy version of that gene from the other parent. And if she didn't inherit it, she couldn't have passed it on to your mother and your mother couldn't have passed it on to you. Sometimes women who have the gene don't develop breast or ovarian cancer, but for your grandmother to have the gene and not develop cancer, and for her to pass the gene on to your mother and your mother hasn't developed cancer.... the odds of that are pretty low. If both of then had the gene (which is the only way that you could inherit it from that side of the family) then it's quite likely that at least one of them would have had early on-set breast or ovarian cancer.

My suggestion is that before you do anything else, you get yourself an appointment with a genetic counsellor. The counsellor will go through your family history and tell you whether your risk to be carrying the gene is high or low. Based on that discussion, you might feel comfortable that you in fact are quite low risk to be carrying the gene, or you might make the decision to be tested. But you shouldn't be tested without having this discussion with a genetic counsellor first.

By the way, about your mother having had negative lumps in the past, this isn't unusual and it has no bearing on whether or not she might be BRCA positive. Benign breast lumps - particularly fibroadenomas and cysts - are actually very common and do not increase risk.

Ridley is correct. My genetic counselor told me that before anyone is tested, they should have life insurance in place. If you are tested and then later apply for life insurance, they CAN ask you if you have ever been tested, and can deny you coverage based on that result. She told me my kids should be tested when they are 18, so before then we will have to get life insurance for them! Luckily we had just applied for my life insurance last year (I'm 40).