genetic testing

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Halah
Halah Member Posts: 352

Quick question. I am 51 and was wondering if I could benefit from genetic testing. Is this for every woman or is this only for young women? Thank you.

Mindy 

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  • belleeast
    belleeast Member Posts: 653
    edited October 2011

    i am 58, they are testing me not because of family history altho i have several cancers on both sides but because i am triple negative. it will benefit me and my children.

  • Jaybird627
    Jaybird627 Member Posts: 2,144
    edited October 2011

    Do you have children? If so they could benefit from the info otherwise since you've already had a bmx I'd say "no", but that's JMO. I had the genetic testing done, am brca2+, and it's only pushed my docs to try to convince me to have my ovaries out, nothing else. Good luck with your decision.                        

  • lagaviota
    lagaviota Member Posts: 13
    edited October 2011

    Generally the genetic counselors will suggest genetic testing for someone who has not had breast cancer but has a family history of the disease, or for a younger woman who has had bc.  Even with the bilateral mastectomy, if you are positive for one of the genetic mutations, even the "variants of unknown significance", you have a higher risk of developing other cancers, specifically related to the genetic mutations you are diagnosed with.

    If you have children, then it would be beneficial for them to know, if they so desire to have that information.  If you're considering it and you can get referral to see a genetic counselor, then you should meet with one and discuss it with them.  They can give you tons of information.  I have done research with the head of genetics counseling where I go to school and she's fabulous to talk to.  It's really very specific to each individual's family history, personal history and desire of information.  Some people don't want to know that they're at risk for other cancers potentially.

    For example, if you test positive for BRCA2, they would most likely recommend you to look into having a hysterectomy/oopherectomy if you haven't had one already.

    Hope that helps. 

  • Halah
    Halah Member Posts: 352
    edited October 2011

    Thanks ladies! No, I don't have any children. But I would like to know if I am at risk for other cancers. If I need to have a hysterectomy I'd like to know sooner rather than later. So I shall see if I can find a genetic counselor. Thanks again!

    Mindy 

  • Soccermom4force
    Soccermom4force Member Posts: 631
    edited October 2011
  • Halah
    Halah Member Posts: 352
    edited October 2011

    I talked to my ONC and he said he would look into the testing but would first see if my insurance would pay for it since it costs $3000. Once they have determined my eligibility, they will call me (soon).

    Marcia, thanks for the link! What would a genetics counselor do for me that my ONC could not? Isn't all that is needed to be done is to order the tests to see if I am positive for the genes? 

  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited October 2011

    I'm not Marcia, but a genetic counselor will start by asking you to put together (and send to them before your first appointment) family tree-type information, including causes of death, health conditions affecting family members, and ethnic heritage information.  Then they will analyze the information you've provided, together with your medical records, looking for clues to genetic syndromes which may affect you and your family. Based on that information & analysis, they will discuss the possibilities with you, and (possibly) suggest testing to you. They will discuss with you what the effect would be of either a positive or a negative result, so that you can make an informed decision about whether or not you want genetic testing.

    I'm not saying that your oncologist couldn't do all of this, but most of them refer patients to a genetic counselor, whose job is to keep up-to-date on genetic syndromes and the various tests which can assist patients.

    BTW, I believe you can submit a sample for BRCA testing with a note that you only want the sample analyzed if they can confirm your insurance coverage. And the (only) lab that does that testing is very good at getting testing coverage approved.

    HTH,

    LisaAlissa

  • Halah
    Halah Member Posts: 352
    edited October 2011

    Thank you for the clarification LisaAlissa. I think I do need a genetic counselor. 

    Mindy 

  • Soccermom4force
    Soccermom4force Member Posts: 631
    edited October 2011

    So sorry I didn't get back to this thread until now,Winter!

    LisaAlissa is right on the money with her explanation of the benefits of Speaking with. Certified Genetics Counselor.

    I really got a lot out of my sessions with them ( have spoken with a number of CGCs over the years) I find them to be extremely compassionate as well as being current on the latestgenetics information pertaining to breast cancer. CGCs can specialize in many different areas and it is important to see one that has chosen cancer genetics,specifically hereditary breast and ovarian cancer, to glean the best information.

    My very best wishes for a positive outcome no matter what you decide,

    Marcia

  • Halah
    Halah Member Posts: 352
    edited November 2011

    Well I have been approved for the genetic testing. What if I am positive, what more can be done to avoid cancer in the future? More scans, perhaps PET? Full hysterectomy? I have no breasts.

  • LISAMG
    LISAMG Member Posts: 639
    edited November 2011

    One step at a time, winterstorm.  Do you have a family history of BC or OVCA??  U have taken care of your breasts so, nothing further is warranted. Your genetic testing results can determine if ur high risk for ovarian ca. If so, a BSO with/without a hysterectomy would be recommended. Good luck to u for negative results!!

  • mybodymydecision
    mybodymydecision Member Posts: 19
    edited November 2011

    I also am triple negative and waiting for results it has been weeks since I took the test.  Problems with insurance.  I have been waiting and waiting so I no if I should do both breast or just one.  How long is the average time waiting for this test.  

  • Halah
    Halah Member Posts: 352
    edited November 2011

    My aunt on my mother's side died of BC, my dad's mom had BC, my dad's brother died of lung cancer, and my brother was just dx with lung cancer a couple of weeks ago. My MO said it doesn't matter what type of cancer is in the family. He wanted to know about it all. I really don't know about OVCA. I will ask my cousin on my mother's side of the family. I didn't think to ask about that. She knows everyone and that side of the family is very large. I see my MO tomorrow so I shall see how long of a wait it will be.

    Hang in there mybodymydecision.

  • Halah
    Halah Member Posts: 352
    edited November 2011

    Can my brother's daughter benefit from knowing the results of the genetic testing, or would it be just the women on my mom's side? On my dad's side, my male cousin has two daughters. What about them? Thx... Mindy

  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited November 2011

    Yes, your niece can benefit. I've been told that everyone inherits two BRCA genes (one from each parent), so it's not possible to tell in the abstract, whether you got the damaged gene from your mother or your father.  It won't be dispositive for either your niece or your cousins if your test is negative, but it could be useful in ruling things out in their future. So talk to your genetic counselor.  When you meet to get your results, you should discuss not only the effect on you, but whether you should disclose to your family.  

    If you have a positive test result, that may encourage them to undertake genetic testing themselves.  When the lab is looking for an already-identified mutation, the testing costs are substantially less.

    HTH, 

    LisaAlissa 

    etc: spelling

  • Halah
    Halah Member Posts: 352
    edited November 2011

    Thanks, LisaAlissa. I called my insurance company this morning and they pay 100% of the cost of the test! Now it is just the waiting.

    You wouldn't believe what I had to go through yesterday to get blood drawn. Since I am diabetic, the only place to draw blood is from the arms. I usually get blood drawn from my left arm. Short version: after a half hour and 3 nurses, I finally showed the last nurse where the vein was and she could then feel it too, but she was STILL afraid to stick me for fear of missing the vein. But she finally did it. By the time they were done, I could hardly bend my elbow. How's that for adding additional risk of LE??

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