Frustrated...

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Sherri_V
Sherri_V Member Posts: 159
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I've been fine with the "schedule" of things so far.  First, the suspicions.  Next, the confirmation after ultra sound and needle biopsy.  Then...lymph node biopsy and core biopsy along with placement of my port.  But, my labs haven't come back (the more detailed ones) and my appt. with oncologist is tomorrow.  I was about to cry from frustration today then I called the pathology place as the surgeon's office didn't have information about exactly when my report would come in.  It's so nice when you get someone to go to bat for you...the lady who answered the phone there called the place where my sample was and they are going to complete my tests tonight so they will be available in the morning!  So, the appt. at the oncologist's office that was going to have to wait until next week will now take place tomorrow AFTERNOON!!! 

Good news/bad news...I just need to know what's going on and get the ball rolling!  Inaction is killing me!!!

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  • dogsaver
    dogsaver Member Posts: 201
    edited November 2009

    i have learned that when ordering tests, ask your doctor to order an emergency (fill in the blank, MRI, biopsy, ultrasound) and have the request STAT on the results. this protocol will be the difference between waiting two days or waiting two weeks to either get in and get the results. my new favorite word is STAT.

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  • Sherri_V
    Sherri_V Member Posts: 159
    edited November 2009

    I posted a "frustrated" post earlier.  My surgeon called me at home tonight @ 7:15!!!  I can't believe that.  I will sleep MUCH better than I have been AND I won't have to delay tomorrow's oncology appointment!!!

    Here's what he told me:

    My tumor is ER/PR+, which he says is favorable.  I also have P53 (no idea what that means but he says it is also favorable).  Finally, the tumor IS HER2/neu, neither good nor bad, just is.

    Does anyone have ANYTHING you can tell me about the above?  I'm so new to all of this BC stuff and it's confusing :)  Especially, P53...

    Thanks!

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  • Lisa_S
    Lisa_S Member Posts: 7
    edited November 2009

    I understand your frustration as well.  I was diagnosed on 10/7 and have found you need to be your own advocate.  Following my diagnosis, I had a breast MRI that indicated 2 additional areas of concern.  They biopsied one of them (ultrasound guided) and found a mammory lymph node that was positive for cancer as well.  However, the radiologist told me they couldn't detect the third area on ultrasound because it was a linear pattern, not a tumor.  Afterwards, I asked the surgeon's nurse about the third area and she looked into it.  She called me back and said they decided to do an MRI guided biopsy on the third area.  If I hadn't asked about it, I don't think they would have given it another thought!  It's a bit disconcerting.  Similarly, I had a PET scan earlier this week.  After 2 days with no results, I called and they told me the results were done and had been sent to the doctor.  But then the person on the phone said "that's weird, they didn't send it to the doctor".  They took care of it at that point, but I would still be waiting if I hadn't followed up!  So, I highly recommend asking LOTS of questions, keeping track of things and following up repeatedly on everything you have a question on.  All of these folks are busy and deal with lots of patients.  You will know your case better than anyone else.

    I'm also frustrated because, although I was diagnosed on 10/7, my surgery will not take place until DECEMBER!  After meeting with two surgeons, I selected the very experienced surgeon because he does this surgery every Monday, Wednesday and Friday, over and over again and he seems really on the ball.  The problem is that he's incredibly busy and his surgery calendar is full through Thanksgiving.  This seems like a ridiculously long time to wait.  Unfortunately, I don't really feel like starting my surgeon search all over again, so I'm hopeful my surgery will be in early December, but I plan to be persistent in making sure this happens as quickly as possible.

    Good luck with everything and hopeful the wait won't be too long.

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