Exasperating Experience

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Pattimills2017
Pattimills2017 Member Posts: 41

I was diagnosed with IDC on Valentines Day.  I had to wait until May 8 for lumpectomy and node removal because I had to first have open heart surgery.  It was stage IIA.  All margins clear. No node involvement. Oncotype DX score 15.  Cut and dry we were told.  Radiation and 5 years hormone therapy. Well...…….we finally get to meet with the Radiation Oncologist.  Yipee, almost to the end of this storm. Not so.  Because my cousin in Iowa had breast cancer at age 45 and my mother at age 71 (25 and 21 years ago) I qualify for Genetic testing.  My RO talks with us, exams me, comes back in the room and says well "I don't want to do radiation until we get the results back from the genetic testing in 3 weeks". "I don't want to do radiation and then you have to have a bilateral mastectomy'".  "No" I said.  "I want to move forward.  My MO and genetic counselor both said my chances of me having the BRCA1 or BRCA2 was slim to none.  My Oncotype score is 15".  It didn't hit us until on the way home what we were just told.  Shocked and angry I went to bed sobbing.  Why was this test not done on the onset of my diagnosis in February.  I gave my family history at that point.  To wait until I'm near the end of this journey, after I already had to make the decision between lumpectomy or mastectomy, had surgery, surgeon and MO say all is great just have rad and hormone therapy, then be told the possibility of a bilateral mastectomy?????? I am angry that I am being put thru this duress at this point.  It is a simple blood test and should have been done at the beginning.  I contacted my MO.  She is only in the office 1 day a week.  Her nurse contacted her and she agreed with the RO that I should wait the 3 weeks and then proceed.  My husband and I are angry and shocked.  I did manage to speak with a nurse navigator and she contacted the RO.  Yes I am having my simulation appointment this next week.  I was told it takes 2 weeks for the staff to develop the plan.  The results should be back about the same time.  Is this normal procedure to wait til the end of the storm to throw the rogue wave in or did this just occur this way to me?

Comments

  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited June 2018

    I had genetic testing soon after I was diagnosed - before any treatment had begun. I don't know why they would just now be getting around to looking into it. Probably someone dropped the ball.

    I don't know how old you are, but I expect it was pushed for me because I had an aggressive HER2 tumor and was only 50 at diagnosis. Depending on your age - genetic testing may not be as important. It sounds like your cancer was probably more slow growing. And if you are not interested in pursuing mastectomy and/or ovary removal then why wait?

    Usually radiation is started 4-6 weeks after surgery. You should firmly make your wishes known and perhaps seek a second opinion.


  • nonomimi5
    nonomimi5 Member Posts: 434
    edited June 2018

    Patti - So sorry that you are going though this chaos. According to your family history, they should have given you a genetic testing sooner. I did not have one done b/c I don't have a family history of BC. Sometimes the doctors just go through the motions and don't look at the details...or assume someone else did it. But at least your RO noticed it and you are getting the test done now. I know it's frustrating but if you don't do it, you will not be at peace. Continue with the original plan and if you have any doubts, seek a second opinion. Like they said, you probably don't have BRCA. My Oncotype was 17 and I am 54.

  • Lula73
    Lula73 Member Posts: 1,824
    edited June 2018

    You should be hugging that RO vs being upset with him. I know what it's like to be all set on a plan and have an Radiologist/RO upset the cart right at the last minute. Yes, someone totally messed up not ordering the test. But he caught it and it can tell you if the path you're on is the right one or not. There are 9 different gene mutations that have been identified that relate to breast cancer ... 9. It's not just the BRCAs. In addition, if you have other cancers in your family besides BC, you need to offer that up too as it will dictate what panels they order and which genes get tested. If you do test positive for one of the BC genes, he just saved you from tissue damage caused by rads that can cause huge healing issues after mx and/or recon. I know you're ready to get the show on the road, BC growth wisetreatment wise 3weeks is typically not a big deal with most BC. Hug the RO the next time you see him as he caught something no one else did, and may just have saved you a lot of physical and emotional grief in the long run.

  • Pattimills2017
    Pattimills2017 Member Posts: 41
    edited June 2018

    I am 62. We were shocked but not until after we left the office did it sink in as to what we were just told.  I firmly stated that I wanted to proceed and not wait yet another 3 weeks.  That is all I have done since January is wait wait wait.


  • Pattimills2017
    Pattimills2017 Member Posts: 41
    edited June 2018

    My MO asked for approval for the test.  She never mentioned anything about possible bilateral.  In fact I asked if the results would change the treatment plan and both my husband and I clearly heard her say no it would not.  I will still hug my RO if I ever get to see her again.  Small town and they rotate in and out of here.

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