I have questions about BRCA testing and prophylactic mastectomy

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erchick22
erchick22 Member Posts: 5
edited June 2014 in Genetic Testing

Hello I am happy I found this discussion board. I am thinking about getting tested for BRCA 1 & 2. My paternal grandmother was diagnosed with 2 seperated forms of breast cancer 6 months after a "clean" mammogram. She was stage 3 but as of right now has made a full recovery. My mothers side my grandmothers sisters each had breast, ovarian cancer and died from it. My mother has not been tested for the gene but she is concidering it. She has had negative lumps in the past. I am concerened about getting tested and being positive and if insurance will cover a bilateral double mastectomy. I have Anthem insurance. I wanted to know if anyone had been tested was positive and how it went with their insurance. My mother has a different isurance. I tried to call and ask and they were not very helpful. I don't want to be tested if I cannot afford to have the double mastectomy with recontructions. I am a single registered nurse and I can affored medical bills just not what a PDM would cost. Any advice or past experiences would be helpful. Thank you!

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  • Miller1353
    Miller1353 Member Posts: 84
    edited May 2013

    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.

  • erchick22
    erchick22 Member Posts: 5
    edited June 2013
  • BRCAgirl
    BRCAgirl Member Posts: 1
    edited June 2013

    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.

  • lreith62
    lreith62 Member Posts: 18
    edited October 2013

    I have bc/bs I want to have the brca testing my mother had bc at 45 do yo thnk they will pay for it

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited July 2013

    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.

  • SherryR39
    SherryR39 Member Posts: 1
    edited October 2013


    Im having a similiar problem, my mother was diagnosed with breast cancer in 2009, her sister was also diagnosed a well as a great paternal aunt. In April of this year i found out, after 5 breast biopsy and excisioal biopsy that i have atypical lobular hyperplasia. I had a followup office visit one time with oncology. She suggested my mother have the brac test due to insurance. Her ins denied the testing and if she gets the test ( for me and my sister) she will hav to pay $400 a monyth for 2years. Any advis on this?

  • Wilsie2
    Wilsie2 Member Posts: 441
    edited October 2013


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

  • Ridley
    Ridley Member Posts: 634
    edited October 2013
    Just adding a quick note on thinking about whehter you have the appropriate life insurance in place before BRCA testing. I'm not in the US, but was told that being BRCA+ can impact your ability to get life insurance and/or the premiums you will need to pay.

    Ridley
  • Beesie
    Beesie Member Posts: 12,240
    edited October 2013


    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.

  • sarahmriah
    sarahmriah Member Posts: 1
    edited December 2013


    Hi and thank you all for being a part of this forum. I am new here and I'm hoping to get some info and also be supportive to others.


    I was recently diagnosed with IDC. I'm wondering... If I test positive for brca1/brca2, does that increase the recurrence risk? And by knowing if I do test positive for either, will that help in deciding which treatments/meds will be optimal? Thank you.

  • lighthouselady
    lighthouselady Member Posts: 752
    edited November 2013


    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).

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