Anyone had genetic testing done?

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  • Eil4186
    Eil4186 Member Posts: 949
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    CR1954 said:

    Testing...
    The thing is that my daughter's (she is 32) ob/gyn has said that if I will get tested and if I am positive for the gene, then it will make it easier for her (the Dr.) to monitor my daughter and do more tests, aside from mammograms.

    I don't mind having the test done. My problem is that I don't know if my insurance will touch it because there is no other breast cancer in my family.
    I'm not sure what the criteria is for being tested.

    CR

    The geneticist takes your
    The geneticist takes your family information and creates a history/and calculates your risk of having the gene mutation. My geneticist told me that the insurance companies will usually cover it if your risk is at least 20-25%. My risk was only about 11% due to the fact that there is no ovarian cancer in my family and I was the only one under 50 to have breast cancer(42).

    She was very pleased and surprised when the ins covered it without multiple attempts/requests from the geneticist. So you never know what will happen.
  • lasimpson
    lasimpson Member Posts: 15
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    ritazimm said:

    Genetic testing
    Hi Jackie,

    I too had the genetic testing done. Apparently, my insurance must have covered it because it was done a year ago and we never receive a bill for it. (We have since changed insurance and so we don't recall seeing it on the EOB either.) It is simply a blood test but they do require the genetic counseling talk prior to having it done as well as being told the results in person so that they can answer any questions you may have. I too have a lot of cancer in my family (breast, pancreatic, and colon). I have my maternal grandmother, 2 first cousins, a sister and myself that have been diagnosed in our 40's. I wanted to know my results in order for my daughter to be able to better prepare for the future. They say 90-95% (chemo brain and can't remember exactly) of those that get breast cancer are negative for the BRCA 1 and BRCA2 genes. I was negative and I know that another cousin with abnormal mammograms is negative as well. To me, this tells me that there are a lot of things yet to be discovered. They do know that there are other factors and probably other genes that there effects on breast cancer are currently unknown. So unfortunately, this doesn't really help my daughter but at least the gene is negative so the other known links (GYN cancers) may not be an issue. (We do not have any GYN cancer in the family.)

    I know that some people do not want to know and would have more difficulty dealing with things if they did know but for me, I like to have as much information as I can so that I can do all that I can to prepare for things.

    Good luck and God bless!
    Rita

    Genetic Testing - Myraid - 60 Minutes - 4/4/2010
    Hi Rita,

    Not sure if you or anyone else happened to see 60 minutes tonight.

    I am newly diagnosed with breast cancer, adopted and contemplating removal of my second breast. My blood sample was sent to Myraid this past Friday for testing for the gene. Supposedly, they do not accept insurance and even though my insurance company is in-network and will pay for this test.

    My understand is that ONLY Myraid has a patent for this test.

    Please let me know what company did your testing - state etc. Thanks in advance.

    Laurel
  • New Flower
    New Flower Member Posts: 4,294
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    Eil4186 said:

    The geneticist takes your
    The geneticist takes your family information and creates a history/and calculates your risk of having the gene mutation. My geneticist told me that the insurance companies will usually cover it if your risk is at least 20-25%. My risk was only about 11% due to the fact that there is no ovarian cancer in my family and I was the only one under 50 to have breast cancer(42).

    She was very pleased and surprised when the ins covered it without multiple attempts/requests from the geneticist. So you never know what will happen.

    How should I approach insurance
    Hi everyone,
    I am glad that this thread was bumped. I am going to have genetic counseling on Tuesday and have been wondering how to approach insurance to pay for the testing.Any advice will be appreciated.
    New Flower
  • scorpio37
    scorpio37 Member Posts: 20
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    lasimpson said:

    Genetic Testing - Myraid - 60 Minutes - 4/4/2010
    Hi Rita,

    Not sure if you or anyone else happened to see 60 minutes tonight.

    I am newly diagnosed with breast cancer, adopted and contemplating removal of my second breast. My blood sample was sent to Myraid this past Friday for testing for the gene. Supposedly, they do not accept insurance and even though my insurance company is in-network and will pay for this test.

    My understand is that ONLY Myraid has a patent for this test.

    Please let me know what company did your testing - state etc. Thanks in advance.

    Laurel

    Myriad
    Myriad did my testing also and at first it was denied by my insurance but ultimately it did cover it.

    cindy
  • New Flower
    New Flower Member Posts: 4,294
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    scorpio37 said:

    Myriad
    Myriad did my testing also and at first it was denied by my insurance but ultimately it did cover it.

    cindy

    Cindy
    Who did appeal when insurance initially denied it? Was it your doc office or you did it yourself?
  • scorpio37
    scorpio37 Member Posts: 20
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    Cindy
    Who did appeal when insurance initially denied it? Was it your doc office or you did it yourself?

    genetic testing
    My doctors' office has done all the work. I did not ask for the genetic testing it was made by the doctor because of me not knowing my birth mother and have 2 daughters, that may be why the insurance ultimately paid the claim too.

    Hope this helped
  • mimivac
    mimivac Member Posts: 2,143 Member
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    lasimpson said:

    Genetic Testing - Myraid - 60 Minutes - 4/4/2010
    Hi Rita,

    Not sure if you or anyone else happened to see 60 minutes tonight.

    I am newly diagnosed with breast cancer, adopted and contemplating removal of my second breast. My blood sample was sent to Myraid this past Friday for testing for the gene. Supposedly, they do not accept insurance and even though my insurance company is in-network and will pay for this test.

    My understand is that ONLY Myraid has a patent for this test.

    Please let me know what company did your testing - state etc. Thanks in advance.

    Laurel

    genetic testing
    My testing was fully covered by BCBS. I don't remember what company did the testing though. This seems unreasonable to me. Have you asked your onc. if there are other labs?
  • slynch
    slynch Member Posts: 82
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    genetic testing
    I recently had genetic testing done because my mother had ovarian cancer. I have DCIS in right breast and was concerned about the left. My test came back negative for what they call "mutant" cells but doctors tell me I am still at a much higher risk than someone who didn't have ovarian in their family. As for insurance, I was told that mine would cover the testing -- I was told it is around $350.000-$400.00 and all they do is take a vial of blood. Test results come back in about 2 weeks.
  • twill6
    twill6 Member Posts: 5
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    slynch said:

    genetic testing
    I recently had genetic testing done because my mother had ovarian cancer. I have DCIS in right breast and was concerned about the left. My test came back negative for what they call "mutant" cells but doctors tell me I am still at a much higher risk than someone who didn't have ovarian in their family. As for insurance, I was told that mine would cover the testing -- I was told it is around $350.000-$400.00 and all they do is take a vial of blood. Test results come back in about 2 weeks.

    Genetic Testing
    I had my genetic testing completed in 2007 and I am positive for BRCA1, I have quite a family history of breast cancer. In my family it appears that it is coming from my father's side. I was not surprised to have returned a positive test. Once the results cam back, I had a mastectomy on the side that did not have cancer, as a preventative. It is hard knowing, but at least my doctors and I could make the best decisions that we could to help prevent a reoccurance on the other breast. Also, I am a Triple Negative and we do not know how that affects the genetics.

    My 25 year old daughter has also been tested and she is positive as well for BRCA1. Once she has confirmed that she is finished having children, she plans to have a bilateral mastectomy and have her ovaries removed.

    My sister had b/c, my great-aunt and several cousins have had breast cancer, all of us were in our 40's when we were diagnosed. My uncle was tested and he is negative so his daughter does not have a need to be tested.
  • n01kar
    n01kar Member Posts: 26
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    twill6 said:

    Genetic Testing
    I had my genetic testing completed in 2007 and I am positive for BRCA1, I have quite a family history of breast cancer. In my family it appears that it is coming from my father's side. I was not surprised to have returned a positive test. Once the results cam back, I had a mastectomy on the side that did not have cancer, as a preventative. It is hard knowing, but at least my doctors and I could make the best decisions that we could to help prevent a reoccurance on the other breast. Also, I am a Triple Negative and we do not know how that affects the genetics.

    My 25 year old daughter has also been tested and she is positive as well for BRCA1. Once she has confirmed that she is finished having children, she plans to have a bilateral mastectomy and have her ovaries removed.

    My sister had b/c, my great-aunt and several cousins have had breast cancer, all of us were in our 40's when we were diagnosed. My uncle was tested and he is negative so his daughter does not have a need to be tested.

    braca test
    I was diagnosed with dcis (stage 0) yrs ago at the age of 36. Last year the cancer returned on the other breast (stage 2). I did the braca test with myriad labs. It costed a little over $3000, my blue cross/blue shield covered it all. Since this was my 2nd round with cancer and testing positive, my oncologist advised me to have my ovaries removed as soon as possible. I was told that If the cancer was to return, there is a good probability it might return in my ovaries. I did a vaginal sonogram as well as the cancer marker blood test. Everything was negative but i opted to have my ovaries removed 6 weeks after my last chemo.

    Karlene
  • New Flower
    New Flower Member Posts: 4,294
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    n01kar said:

    braca test
    I was diagnosed with dcis (stage 0) yrs ago at the age of 36. Last year the cancer returned on the other breast (stage 2). I did the braca test with myriad labs. It costed a little over $3000, my blue cross/blue shield covered it all. Since this was my 2nd round with cancer and testing positive, my oncologist advised me to have my ovaries removed as soon as possible. I was told that If the cancer was to return, there is a good probability it might return in my ovaries. I did a vaginal sonogram as well as the cancer marker blood test. Everything was negative but i opted to have my ovaries removed 6 weeks after my last chemo.

    Karlene

    Back from Genetic counseling
    I just came back from genetic counseling. Yes the Myriad Genetic is the only one at this point. They hold patents for this procedure, including DNA isolation and genes identification. There are three types of testing Comprehensive BRACAnalysis (around $3,000.00) and two abbreviated: Single Site and Multisite 3 ($500 -$700). While for most insurance plans the Standards of care cover BC patients under age 50 with family history, or Eastern European decent, some specific plans negotiated by employers could exclude genetic testing. Myriad usually works with insurance to provide risks factors making them to pay.
    My doctor will write letter of medical necessity, I also sigh a form stating that Myriad will not process of my sample until my coverage is identified.

    If results come back positive ovaries should be removed as soon as possible. The reason is such that unlike beast cancer ovarian cancer is very difficult to detect at early stages, there are not symptoms or any indications until it is very advanced. Prophylactic mastectomy is recommended for prevention from second primary cancer, which is not related to the first one.
    New Flower
  • carkris
    carkris Member Posts: 4,553 Member
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    Back from Genetic counseling
    I just came back from genetic counseling. Yes the Myriad Genetic is the only one at this point. They hold patents for this procedure, including DNA isolation and genes identification. There are three types of testing Comprehensive BRACAnalysis (around $3,000.00) and two abbreviated: Single Site and Multisite 3 ($500 -$700). While for most insurance plans the Standards of care cover BC patients under age 50 with family history, or Eastern European decent, some specific plans negotiated by employers could exclude genetic testing. Myriad usually works with insurance to provide risks factors making them to pay.
    My doctor will write letter of medical necessity, I also sigh a form stating that Myriad will not process of my sample until my coverage is identified.

    If results come back positive ovaries should be removed as soon as possible. The reason is such that unlike beast cancer ovarian cancer is very difficult to detect at early stages, there are not symptoms or any indications until it is very advanced. Prophylactic mastectomy is recommended for prevention from second primary cancer, which is not related to the first one.
    New Flower

    i had it 16 years a go.
    i had it 16 years a go. insurance covered it, it was neg. I am on my second primary, so I must have some gene but not discovered yet.
  • Eil4186
    Eil4186 Member Posts: 949
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    I am the forth in my family
    I am the forth in my family to have breast cancer. I had genetic testing. Results were negative for BRAC1 and 2. The test cost over $4000.00. My insurance covered it with no questions asked. The geneticist said the breast cancer in my family is genetic, but not a gene they are aware of as of now.
  • kathyDDD
    kathyDDD Member Posts: 34
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    I had the test
    There is one lab in Utah that processes this test. The cost of the test is $3200. My insurance covered mine because I already had cancer. My sister's insurance would not cover hers because she was healthy, however she would only have to pay $675 because of me. I can't believe that cost or that there is only one lab in the US handling this. I certainly would check with your insurance company and check their policy. Good luck.

    Kathy
  • mellindy
    mellindy Member Posts: 13
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    testing
    My daughter had the BRCA test because she was diagnosed with the same kind of BC I had. She was negative. Do you know that the test does not tell whether you have the gene,it just rules it out. She has had a double mastectomy and is going through reconstruction and chemo at this time. I am a 14 year survivor, and we are told her cancer is not related to mine. Remember the odds? 1 in 7 or 8???? I guess what I'm saying is as hard as it is not to worry, worrying isn't going to serve you well - try to keep a positive outlook and know that the longer time goes on the better the treatments! And the more positive your attitude, the better the outcome.
    Wishing you wellness and light.
  • sue1957
    sue1957 Member Posts: 1
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    genetic testing
    I was diagnosed with Triple Negative and my doctor recommended it. She told me that there was only about a 10% chance that it was genetic. My insurance refused it first, but my doctor went to peer review with it and they overturned their decision. I think the cost was about $3500. In my case I learned that it was not genetic. It was a big relief and now I don't worry so much about my daughters, sister, and nieces.
  • mamolady
    mamolady Member Posts: 796 Member
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    sue1957 said:

    genetic testing
    I was diagnosed with Triple Negative and my doctor recommended it. She told me that there was only about a 10% chance that it was genetic. My insurance refused it first, but my doctor went to peer review with it and they overturned their decision. I think the cost was about $3500. In my case I learned that it was not genetic. It was a big relief and now I don't worry so much about my daughters, sister, and nieces.

    3 generations
    I have 2 great aunts, one diagnosed in her 20's I believe, 1 aunt diagnosed at 47, my sister diagnosed at 30 and I was diagnosed at 47. All this indicates a genetic factor. I tested negative for both BRCA genes. All this means is that they haven't found the gene for my type of cancer. I wish I had tested positive so my kids could find out if they have to worry. Right now my 28 year old daughter is contemplating a prophylactic mastectomy. The oncologist wants my sister to take some preventive action. (She already had a complete hysterectomy)

    Cindy