Relieved and frustrated

I got my results from the BRCA 1 and BRCA 2 gene mutation testing today and I am negative! What a relief to know that I haven ‘t passed this on to my daughters. They will have to be watchful and start getting mammograms earlier than most women, but we can do that.  Actually the rule of thumb is 10 years younger than the earliest breast cancer diagnosis and I am 49. That’s about the age they would start anyway.

While I am extremely relieved and grateful I am also frustrated and a little pissed off. I was told at my meeting that results would be available in 3 weeks (I was tested on June 18) and then I was given an appointment to get the results on 7/30 (6 weeks later!). I was told I should postpone radiation until I got the results. I refused to do that.  In 3 weeks I would have been nearly half way done, in 6 weeks when I was scheduled to be given the results I would be nearing the end.  Once I had my radiation schedule I called to cancel my appointment as it conflicted. I asked for my results to be given by phone and was promptly transferred to the counselor’s phone, where I was cut off when attempting to leave a message. So I emailed her at the address on her business card. It came back as undeliverable (turns out the lower case l is really a 1).  Finally I wrote a letter requesting the results by phone or mail. I told them I was not willing to wait 6 weeks and I could not keep that appointment even if I were. This was Wednesday. They either got it late yesterday or first thing this morning (Friday) and called. And they had the results available.  They were going to sit on them for 6 weeks had I not sent that letter. Actually, longer had I rescheduled for after I was done with radiation. There was no apology for that, just a feeling they were doing me a huge favor by giving them to me over the phone.  I expressed my relief that they were negative and had the feeling (again) they were hoping for a positive based on the response.  I was (again) given a list of family members that should be tested for Lynch Syndrome. I have passed the information and recommendations along.  Given my experience I am hardly going to be the poster child for genetic testing.  At least at that facility. Unfortunately it is one of only two in our state.

I am even more grateful for my doctors and the cancer center having dealt with this other facility.  This was truly the first negative experience I have had since the diagnosis. Well, other than the whole cancer thing.

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12 comments

  1. Tracey · June 29, 2012

    Well that sucks. My experience with that test was quite different. They mailed the results to me in a couple of weeks. What they didn’t do was mail copies to my doctors, even though they had the information, so I made copies when I went to my appointments. I was also negative, which was also a relief.

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    • mainelyhopeful · June 29, 2012

      Such a relief! They did assure me my doctors would get copies, but I may bring them along just in case.

      Like

  2. Patricia Ouellette · June 29, 2012

    Well that is wonderful news that you got a negative result for the girls.

    But how terrible of the doctor’s office to be so terrible to reach or the fact that they would’ve made you wait for so long to get YOUR results and for what, they’re scheduling to allow? That’s just ridiculous to leave somebody waiting for such a nervewracking result because you want to see them in office to discuss.

    Hopefully this was the first and last terrible doctor’s experience you’ll have!

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  3. rachturner · June 29, 2012

    Ok, first off, YAY for being BRCA1 and BRCA2 negative!!! That’s great news! As far as your experience with getting the test results – boo! That’s awful that they would make you wait 6 weeks for something like that! If you’ve to been the cancer patient before, you don’t understand how incredibly nerve-wracking it is to wait even a few days for test results – much less weeks! I’m glad that you were persistent and finally got in touch with them and I’m super glad for your good news!

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  4. leona · June 29, 2012

    Sending a hug your way

    Like

  5. jlpaddock · June 30, 2012

    Glad the test results were negative! I actually got my results the same day…fortunately also negative. 🙂 Hopefully you can put this facility in your rear view mirror right quick. Wishing you lots of strength for the rest of your radiation treatments.

    Like

    • mainelyhopeful · June 30, 2012

      You must be so relieved too. The worse thing is thinking we’ve passed this on to our children. Thanks for the good wishes and right back atcha 😉

      Like

  6. sherrysf · July 1, 2012

    I know this feeling and share in your joy! good enough news to overshadow the wait (although, that must have been nerve wrecking!) Xoxo ~S.

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  7. onwardandupwardblog · July 1, 2012

    Yay!! I’m also glad the results were negative, we all needed some good news, so this is fantastic!! Unfortunately the way you were treated is way too common I think. Ugh. Sorry you had to deal with that, but proud you stepped up the game and got the answers you wanted by your terms. I’ve had to do that more times than I care for.

    Woot woot!!! Celebrating the good news with you!! 🙂

    Like

  8. marketaz · July 2, 2012

    Glad you are negative! Bad way to have to go through all that stress to obtain the results.

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  9. The Presents of Presence · July 4, 2012

    I LOVE that you are negative and I LOVE that you listened to your INNER VOICE and did what you wanted! You regained YOUR POWER! WOO HOO! xoxo

    Like

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