Never tested - should I?

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wrsmith2x
wrsmith2x Member Posts: 410
edited June 2014 in Genetic Testing

So I asked my Onc. about testing and he said that it might have implications with my insurance and my sister and mom would need to be tested also......is this right?  They have never had breast cancer.  Why can't I, who has had BC, have the testing and leave them out of it?  What are the rules and the implications of testing?

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  • InTwoPlaces
    InTwoPlaces Member Posts: 354
    edited December 2010

    My insurance didn't cover a BRCA test but I didn't have any family history to relay on. My Onc told me there was no need for me to take the test.

    Maybe since I'm a "high risk" anyway ??

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  • gfbaker
    gfbaker Member Posts: 173
    edited December 2010

    I had a BRCA test and my insurance did cover it. I have no history of BC in the family, but went to a genentic councelor and due to young age was told I should get. Maybe you need to go to a genetic councelor first. My councelor was through the hospital and free. You get tested first, and they have to test all areas of BRCA 1&2. I was negative, so no need to test any family. If you are found positive, then they would test female relatives, but only for the BRCA areas you had a defect in, so a much cheaper test for them (and under their insurance, not yours). I mostly did it because I have a daughter and a niece and wanted to make sure their risk wasn't increased. My father also had prostate cancer and sometimes that can have a BRCA tie in.

    As for insurance, I think there are national rules that say you cannot be denied treatment if you have cancer in the future due to BRCA. The genetic councelor went over all that stuff. If you have a cancer social worker they would have all the information about this stuff. Good luck!

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  • DiDel
    DiDel Member Posts: 1,329
    edited December 2010

    to add to all that...I was told that I should have it because it creates a baseline for future family members. So if my sister or nieces wanted to get tested it would be cheaper and they would be covered because they would be comparing to my baseline genetic testing. My onc said it's like finding a needle in a haystack but once you know where to start looking the process goes faster.

    It should be covered and your oncologist office or genetic counselor should be the one fighting for approval not you. My guess is they always deny then you fight it and they approve it. Don't you just love the Insurance Companies.

    Good luck!

    Diane

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  • LISAMG
    LISAMG Member Posts: 639
    edited August 2013
    wrsmith, u are the one with BC and u r the family member who should be tested first. Its always recommended for affected family members to establish a possible mutation and then others can test for the same possible gene. I strongly urge u to seek genetic counseling thru a certified counselor and NOT thru a doctors office. CGC's are the most up-to-date professionals to guide your decision making. Your BRCA tests should also be covered  by insurance and be a non-issue. However, if u meet resistance by the insurance co. to cover the cost for testing, most women have success just by having their physician(s) submit a letter of medical necessity and gaining approval. The GINA Act was enacted to protect the rights of those pursuing genetic testing, but the law differs state by state. Was your tumor triple negative? If so, this raises the suspicion for a possible mutation being present since your tumor is high grade as well. Sending you lots of well wishes too.
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  • lago
    lago Member Posts: 17,186
    edited December 2010

    My insurance covered the testing. The genetic counselor wasn't really recommending it but my BS was once he found out I was Ashkenazi Jewish (higher incidence of BRCA+ in this group. 80% of all Jews are Ashkenazi, even higher number in the US).

    I actually found my genetic counselor useless. When she ran the stats she said I had a higher risk of having the BRCA gene if I didn't have breast cancer. My BS said that just didn't make sense. No the genetic counselor didn't run the numbers again.

    I tested negative. There is no other history of breast cancer or ovarian cancer in my family. Once I tested negative my sister and brother didn't need to be tested.

    But it seems more triple positive and younger women (under 40) test positive. I'm not sure how old you are but this might be a factor too.

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  • Kouragio
    Kouragio Member Posts: 55
    edited December 2010

    My personal view is that if there s a real possibility you may have a defect, one should test themselves (irrespective of insurance). Health is one area which transcends all financial issues. If you were positive, then management for your relatives changes. I have heard people say thet their daughters will be screened anyway...this is not true. If your daughter/niece etc was also positivem screening would be different, scrutiny would be more, possible prophylactic surgery would be considered, having babies earlier would be protective...so management is always different in real life, no matter what people may say. One tested, and you know the result (whether postive or negative), at least you can put your mind at ease, then proceed with the correct managment....Goodluch with your decision...Merry Christmas and Happy New Year!  xox

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  • hrf
    hrf Member Posts: 3,225
    edited December 2010

    The issue around insurance is not whether they pay for the test. It is that if you test positive, will it affect your ability to get life insurance. So, if you are thinking of getting tested, load up on your life insurance first. That may not be an issue for more mature people whose families are launched but if you have young kids or other dependants, & you want to make sure they are cared for you need life insurance. That's the issue.

    In most cases, if there is no family history of cancer (either male or female) the odds are that there is no gene mutation and no need for testing. However, the anomaly is that there are Ashkenazi Jewish women with no family history who are still testing positive so here in Toronto, all these women are being given the test if they wish.

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited December 2010

    There are no rules that anyone else needs to be tested. If you should test positive it would be your decision whether to share that information with any other family member.  Then it would be their decision whether or not they choose to also be tested.

    I'm positive and my mom's positive.  My sister didn't get the tested prior to her passing away from BC because back then it was possible for the medical insurers to use that information against you.  The GINA law changed that in 2009 so my mom and I went for testing.

    My daughter turns 30 next month.  She has choosen to wait a while before she gets tested.  In the meantime she has conveyed the BC history and positive BRCA 2 gene to her doc and she is in the high risk survelliance program.  Starting next month she will have alternating mammo and MRI tests every 6 months.  This is her choice.  She is very well informed and has done extensive research.  Not my preference but I respect her choice.

    My neice appears to be in the same boat.  A few years behind my daughter but she has also choosen to wait on testing.

    My mother and I choose to share this information with as many family members as we could contact.  Had one cousin who also tested positive for our gene mutation so she got the prophylatic BMX with reconstruction and couldn't be happier about it.  Another cousin came back negative and was very relieved for his daughters.  Others choose to not do anything.

    The genetics counselor didn't add much value to our situation because we had done our research, knew the odds were likely for a positive result and had already discussed whether we wanted to share the information or not.  But I guessing that a genetics  counselor might be helpful for you to get accurate information and help you decide whether or not to proceed.

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  • wrsmith2x
    wrsmith2x Member Posts: 410
    edited December 2010

    Thanks for the info and replies.  LisaMG, my tumor was triple negative and grade 3 and Iago, I was 44 when diagnosed.  I think I will walk with a Genetics counselor and see what they say.  Maybe I was just an isolated case in my family who is full of folks who lived a very long time and were/are generally healthy.

    Thanks again for the info.

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  • TifJ
    TifJ Member Posts: 1,568
    edited December 2010

    wrsmith- you and I have a similar diagnosis. I met with the genetic DR. at my cancer center a couple weeks ago. He recommended I be tested 1) because I was dx at 44- under 50. 2) I had both IDC and DCIS in same breast (you may not have had this). 3) triple negative.

    He said he had not seen an insurance company deny the test for anyone dx under 50 and especially if triple negative. My insurance co. denied my PET scan, but approved the BRCA test.

    I have no history on my mother's side, but did not know my father or his side. My counselor suggested if I am positive (won't have results until mid-Jan.) that my brother be tested- I have no sisters or any other family left - and my daughter tested one day. She is only 5 right now.

    Hope this helps some!

    Tiffany

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