BRCA testing?

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Strawberry8
Strawberry8 Member Posts: 35

So, I was diagnosed with LCIS almost a year ago, had the lumpectomy, started the tamoxifen, have begun my mammo/ultrasound 6 month rotation...

Just 4 months prior I had a hysterectomy (kept ovaries). I went back to my OBGYN for a well woman visit today. He was surprised my BS or Onc. Didn't do the brca testing yet. So today he drew blood for the testing and explained that the results will inform my treatment going forward regarding if he should take my ovaries sooner or later. He also wants me to get a colonoscopy at 45 instead of 50 because breast/ovarian/uterine/colon cancers are somewhat linked.

So how many of my LCIS girls had the gene testing? I am waiting to hear if my insurance covers it before the sample gets processed.

Comments

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited November 2016

    I was tested, but I was tested for PTEN & CHEK2 before the genetics counselor tested me for BRCA because she thought it was very unlikely I was positive. I was tested because I had ovarian cancer and my dad's mom and sister both had colon cancer. I've never really heard that LCIS is much of an indicator for BRCA, unless you have other family history.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2016

    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

  • Wicked
    Wicked Member Posts: 141
    edited November 2016

    I was tested because along with LCIS, I had ILC. I had the Breast Next testing which tests for 17 genetic mutations. Didn't have a one. My dad's mother and one of his sisters also had BC. The genetic counselor told me that if I had only had LCIS, my insurance would not have paid.

  • lekker
    lekker Member Posts: 594
    edited November 2016

    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.


  • Strawberry8
    Strawberry8 Member Posts: 35
    edited November 2016

    Thank you for all of the quick replies. I will let you all know if my insurance covers any genetic testing in my case, and also seek out a counselor. I have distant family history only with ILC (maternal second cousin), and so far for me noinvasive, just LCIS so perhaps my doctor has jumped the gun.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited November 2016

    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.

  • Strawberry8
    Strawberry8 Member Posts: 35
    edited November 2016

    that is probably why my BS and oncologist had not mentioned it yet. I will be making some calls tomorrow to my insurance company and the rest of my treatment team. Luckily the company that runs the test holds the sample to wait for authorization from insurance. My OBGYN is a skilled and intelligent doctor who has helped me tremendously but he is most likely out of his depth with LCIS.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited November 2016

    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

  • Jss2332
    Jss2332 Member Posts: 1
    edited November 2016

    Thought about testing for years, never got around to it. Within days of being dx'd with LCIS/ALH, I did the profile. did Myrisk. Brca and others were all neg but I was prepared to do dbl mast if positive.

  • Strawberry8
    Strawberry8 Member Posts: 35
    edited January 2017

    just an update, my BRCA test came back negative. The testing was through Myriad. I got the results on New Years Day, by phone from my doc, then he mailed me the report. I got my explanation if benefits yesterday. Turns out the test was completely covered. Myriad billed them a little over 4k and my insurance paid them about 2200. My insurance is for new york state employees. In case anyone is curious.

  • InStitches
    InStitches Member Posts: 80
    edited January 2017

    Hooray for a negative on BRCA. And Leo that it was covered by your insurance!

    Nancy

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