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Thread: Good news! Test results!

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    Distinguished Community Member andromeda31's Avatar
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    Default Good news! Test results!

    Hi!

    I am going to cut & paste my fb post about it...too tired to rethink it all! But yay for good news! Now I just am waiting for Caitlin's blood draw results....(starting cut & paste...)

    What a relief!! Just got the call from the genetic counselor that I am negative for the BRCA 1 & 2 gene!! (though this knowledge doesn't help any of my cousins or my sister as they could still be positive for that) I was tested for it a few weeks ago after meeting with a genetic counselor about it. She will be figuring out what my estimated risk is for breast cancer though. If it is over 20%, insurance will pay for breast MRIs vs just a mammogram. Average women have a risk of 12% and the BRCA gene carriers have risk of 60-80%...my risk will fall somewhere between those 2 numbers based on the family history. They have a computer program that will figure it out after they input all my data. Whew!!!

    The only way my cousins or my sister would know for sure is if my mom gets tested for it and comes out negative. I am hoping my mom will make an appt. The lady said with all the other cancer in the family that there are a few other genes she would test my mom for. Because I did not already have cancer, they only test for BRCA 1 & 2. There are a few more other genes also apparently.

    Yes, I actually have an apt in September with the gyn....I have horrible periods and this kindof was to determine what I would do. There is a thing called NovaSure where they burn out the uterus...only 1-2 day recovery or if I was BRCA positive I would have definitely went for a hysterectomy (ovaries & uterus). They say if you are BRCA positive if you remove the ovaries before menopause, it greatly cuts the breast cancer risk. My mom & aunt had breast cancer...hoping my mom will still get tested to double check this...she could possibly still have the BRCA mutation. I was worried about recovering from the hysterectomy, lifting restrictions for 6 wks....with all the lifting I do with Caitlin and her wheelchair. I was a little afraid about life ins discrimination but we already have a term policy in force for me but I feared if I was positive, that we might not be able to extend it or get another one when the term is up. The counselor said that the BRCA can also lead to other cancers, one of the main ones was also melanoma which there is a lot of that in my family also. I really expected the result to come back positive so I was a little shocked when she said I didn't have it....

    We are just about to the maximum family out of pocket (2800) for our insurance this year so that also is why I did it now. Once we reach that magic number, everything is covered 100%. I haven't seen any EOBs from this yet...the genetic counseling visit will likely be 100-200 range I am guessing. It was an hour long appointment. The actual test that I took for the BRCA 1 & 2 gene costs $4040. There is another lab that does it for about $2000 but they take longer to get results.

    On my mom's side, out of 8 siblings, 2 had breast cancer and 3 had skin cancer and one had oral cancer... (end of the cut & paste! my aunt then commented that only one of the skin cancer ones was melanoma, the other 2 were the basal cell or squamous types). So glad for some good news for a change!! :)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Oh Honey, I just saw this now.. .I am so happy for you!!!! What a great relief. I am surprised too - for once the odds came out on your side. Thank God and saying a prayer of thanks for your good news. xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa))))))

    Fantastic news! Answered prayer! I feel relieved for you, so I can only imagine how you feel.

    Ask your GYN to check you for fibroids. Two of my friends have been battling fibroids. One is 50, and she had a successful removal of the fibroids, without recurrence so far. The other friend is 42, and her fibroid procedure was insufficient (can't get to all the fibroids to remove them), so she is now having a hysterectomy.

    Why is the BRCA test so expensive? Wow! $4k seems mighty steep. Think of all of the women, who need this test, but can't afford it. I find that infuriating and so typical of our medical/insurance system.

    You were so smart to be tested. Now you can put that concern to rest. I will pray that your odds remain low.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Thanks!! Yes, I am glad I have the appointment with a gyn coming up next month....I sure have a lot to discuss with her! I am hoping I can convince my mom to get tested before then, that will be a nice double check and the genetic counselor said with all the cancer in the family, there are a few other mutations she would test my mom for. I am guessing those would be approved by the insurance since my mom actually had cancer already. I think the lab the charges 4K had the patents on it or something like that. I remember reading a little bit about that when the Angelina Jolie surgery news was all over the internet. I feel bad for my cousin as she said she is interested in getting tested (she is the daughter of my mom's sister who also had breast cancer in both sides--one side in 1994 and then in the other side in 2000) but that she could not afford that and that her "insurance sucks" she said. Maybe if I can talk my mom into getting it done, she can talk my aunt into getting it done. We'll see! My parents are going on a bunch of trips next month so I am hoping I can get her to go in before all that. My mom will be starting on Medicare this November...they are doing COBRA thru where my Dad used to work (he retired this spring) until then so she said she wouldn't mind having them pay for that testing to recoup some of the premiums they have been paying. Whatever it takes I guess! :)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    very good news. you must be so relieved to have this done.
    Mary grace

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    Glad to hear the good news!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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