How do you find a genetic counselor?

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paxton
paxton Member Posts: 577
edited June 2014 in High Risk of Recurrence or Second Breast Cancer

My mom is considering being tested for BRCA because her biological mother and I (her daughter)have BC. My onc has suggested the test but not until after tx which will be next year. My mom checked into it with her regular physician. They did alittle checking and basically told her she needed to find a genetic counselor and then convince them why she wanted the testing done? Any suggestions? She lives in florida and I'm way up in minnesota.

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  • nash
    nash Member Posts: 2,600
    edited August 2007

    Have your mom check with her insurance--they should have a list of genetic counselors. If she's on Medicare, then she can probably go anywhere, I would think. Usually the university hospitals and major multi-disciplinary clinics have genetic counseling departments.

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  • veggievet
    veggievet Member Posts: 72
    edited August 2007
    Dear Paxton,
    Helping people find genetic counselors is part of what I do! And I live in Florida and know many of the genetic counselors here well. Please e-mail me at:

    sueanddan@att.net

    and I'd be happy to help. Also, I recommend that you check out the website for FORCE: Facing Our Risk of Cancer Empowered at:

    http://www.facingourrisk.org

    FORCE is devoted to hereditary breast and ovarian cancer issues including genetic counseling and testing.

    Warm regards,
    Sue
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  • lisettemac
    lisettemac Member Posts: 213
    edited August 2007

    My OB/GYN simply referred me to the Department of Genetics/Genomic Sciences at the local teaching hospital. They assign you a counselor and arrange the test there.

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  • sharebear
    sharebear Member Posts: 332
    edited August 2007
    That is also how I had my genetic testing/counseling done.

    Sharon
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  • veggievet
    veggievet Member Posts: 72
    edited August 2007
    Dear Friends,
    Unfortunately not all doctors refer to genetic experts and not all genetic experts are equally trained. Also, even more unfortunate is that not all regions of the country even have cancer genetics experts for doctors to refer to. Unfortunately some women are being recommended to have or not have genetic testing based on incomplete or biased information from health care providers who are not current in genetics. I'm always happy to help people find a genetic counselor in their area for those who need that assistance.

    Warm regards,
    Sue
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  • playwriter
    playwriter Member Posts: 316
    edited September 2007

    here's the thing. i'm adopted. no clue who my birth parents are. is there a way i can get my blood tested to see if i'm at risk for any kind of cancer, not just BC?

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  • wallycat
    wallycat Member Posts: 3,227
    edited September 2007

    We have a counselor at one of the local hospitals.

    You may want to check there and see if they have a connection 

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  • leaf
    leaf Member Posts: 8,188
    edited September 2007

    "here's the thing. i'm adopted. no clue who my birth parents are. is there a way i can get my blood tested to see if i'm at risk for any kind of cancer, not just BC?"



    Hi playwriter. I am not a genetic counselor, but from what I understand, I don't think there are tests for people who are at risk for cancers in general besides BRCA1 and 2 (which are by far the most common) and about 3 others, which are rare (at least one of which is PTEN). As far as I know, all of these genetic mutations put you at some risk of some cancers besides breast cancer.



    But most people with cancer do not get cancer because they have inherited a mutated gene. Some cancers are associated with particular exposures (such as lung cancer with smoking) but some are not.



    Not all people with a BRCA mutation get breast or ovarian cancer. So you can have a mutation but not exhibit this mutation in your body (which is called penetrance.)



    Anyone can have their blood tested for these mutations. You may have a lot harder time for your insurance to pay for the test. My insurance would cover it if it was deemed 'medically necessary,'

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  • Indigoblue
    Indigoblue Member Posts: 274
    edited September 2007

    There is a lab in L.A.,Calif. which does anonymous testing.  Talk with your family physician, and they can submit the bloodtests under an assumed name.  Actually, you must pay for the bloodtest, but it avoids so many hurtles, suchas insurance liability, employment, etc.  We're "protected by privacy laws" supossidly, but don't bet on it.  Chances are, if it runs in your family, you already know all about the mutations and chances of having the gene for caner, as well as many other obscure illnesses which can be far worse than cancer. 

    Sorry, genetic councelors, but until we are protected in a viable, honorable way, genetic tests and counseling is a very touchy situation.

     Indi

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