At what point would you be frustrated

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Mommy2Six
Mommy2Six Member Posts: 119
edited May 2016 in Diagnosed and Waiting for Test Results

I was diagnosed at 29, double mastectomy, complete hysterectomy+salpingectomy because of very strong family history. I've been waiting 1.5 yrs to get insurance approval for broader testing than just the BRCA 1/2 test, based on advice from my oncologists. Finally found a lab with a reasonable self pay option, had the test done a month ago. Genetic counselor said it would to take up to 3 weeks to get results, but if I was notified by the lab they were in and had not yet heard from her, to give her a call so she could check for them and go over them with me on the phone.

The results came in 2 days ago, I can see online that my dr/genetic counselor received them. I called yesterday and the secretary was totally rude to me, said she doubts the genetics team will want to discuss results over the phone and they are booked for appts through end of August. I politely explained I'm just doing what I was told by calling, and she laughed and said "well I don't know what you think I can do for you." I asked her to just please give the message to the genetic counselor. She said she would. I still have not heard anything. I saw another of my drs this morning, who was frustrated about the situation and emailed the genetics team to try to find out the status of everything, but they haven't responded to him either.

Am I being unreasonable? At what point is it unacceptable that they still haven't shared the results or even clicked the button online to release the results to me electronically?

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited May 2016

    Wow, how incredibly rude. She needs to review her Disney pledge. I would say if it is in your town, just drive over and ask for a copy of your results. Legally, they are yours

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  • Mommy2Six
    Mommy2Six Member Posts: 119
    edited May 2016

    that's a good idea. If they go home again today without calling with my results, I will go tomorrow. I'm also irritated with the lab, who is refusing to give me the results directly. I thought that under the ACA, labs are now required to release test results directly to the patient if asked.

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  • jenn32214
    jenn32214 Member Posts: 89
    edited May 2016

    Good for you!. I also have a family history of cancers and just had a 21 panel genetic testing, which came back negative for mutations.

    But I'm still glad I did it, especially since I have BC. If you don't mind, can you update us on what your results were?

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  • Mommy2Six
    Mommy2Six Member Posts: 119
    edited May 2016

    Jenn, the report came back with no known pathogenic mutations. They found 40+ mutations with no known pathogenicity. Their recommendation was to enroll in some research studies, and be tested again in two years.

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  • jenn32214
    jenn32214 Member Posts: 89
    edited May 2016

    Thanks for the update. I may do the same.

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