I need help understanding my genetic testing results

jennarinehart1985
jennarinehart1985 Member Posts: 1
edited July 2021 in High Risk for Breast Cancer

I'm 36 years old and recently had genetic testing done. It placed me in the 99th percentile for melanoma, and in the 77th percentile for breast cancer. I also have the varient for BRCA1, which through my online searches doesn't seem good. Does this mean I'm ninety nine percent likely to get cancer? Please can anyone help guide me through this. Am I right to be terrified right now? Any feedback is greatly welcomed.The genes in question are as follows:

BRCA1

BRCA2

NBR2


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Comments

  • Rah2464
    Rah2464 Member Posts: 1,647
    edited May 2021

    Jennarine do you have an appointment scheduled with a genetic counselor? That should be step number one to have a trained, knowledgeable, medical professional interpret your test results. Having a known variant in no way guarantees an outcome - it can simply be an indicator of increased risk. My genetic testing did not include any type of percentile risk placement such as you have. I have variants that put me at increased risk for colon cancer but surprise nothing for breast cancer.

    Please take a deep breath, your data indicates you need some more discussion to understand risks. Hugs

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited May 2021

    Seconding rah’s recommendation to see a genetic counselor. My medical facility has those who are undergoing genetic testing take an online class to help you understand what genetic testing reveals, or doesn’t, and the implications in real life. When the test results were ready, I met with the counselor who thoroughly explained results and what they meant for me. Please call your mo and see if they will set you up with a genetics counselor. Take care.

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  • 2019whatayear
    2019whatayear Member Posts: 767
    edited May 2021

    How did you get the testing done, was it via ancestry testing or was it via a hospital/medical center? Did you have testing done based on someone else you are related to having had genetic testing done?

    No you should not be terrified right now. :-)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2021

    Well, knowledge is power but now you have some knowledge, you need a bit more in order to take effective action. A genetics counselor will explain the results and the options available at your age, potential risk factors for preventative measures, and family impact. It does not mean you are 99% likely to get cancer, and this isn't something to be terrified by, it is something to take on board and go do something about. Look at it as having been given the gift of awareness and time.

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  • Emily21
    Emily21 Member Posts: 80
    edited July 2021

    99 percentile means you have a 1% chance of, risk of, getting melanoma. 77 percentile means you have a 23% risk of developing breast cancer. I think you should talk to your team about how best to manage this information. Best wishes.

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