Not sure what to do now??

Options
thankfulmom
thankfulmom Member Posts: 2
edited June 2014 in HER2+ (Positive) Breast Cancer

I am 35 years old. I was diagnosed with what I was told only DCIS 4 years ago. I had a double masectomy because my DCIS was so extensive and high grade, lumpectomy wasn't enough. Fastforward today. I changed insurance and made an apt. with a new oncologist at an actual cancer hospital, I have had a cough for months and months and in pain in shoulder almost every day. They took all my slide and tissues and retested.

I was misdiagnosed four years ago at the age of 31. I in fact had IDC and not just DCIS er-pr -. I actually am er+pr-and HER/2+. Now what??? Has this every happended to anyone?? Wating to talk to oncologist about these results. I have a PET scan I am paying out of pocket Thursday since insurance denied it. 

· Share on FacebookShare on Twitter

Comments

  • Jennt28
    Jennt28 Member Posts: 2,021
    edited April 2013

    I don't know what your plan will be, but I'm sure that your doctors will come up with one when they have worked out where you stand right now with the cancer.



    I am so sorry you are having to face this...



    Jenn

    · Share on FacebookShare on Twitter
  • flatpikr
    flatpikr Member Posts: 16
    edited May 2013

    I am sorry to hear that you were misdiagnosed the first time.  That would make me angry if it happened.  I was recently diagnosed also ER+ PR- and HER2+ so I will follow your post to see what happens with you.  I had stage 1a IDC and also high grade DCIS but not as extensive as yours and had a lumpectomy 2 weeks ago.  I'm waiting to meet with my oncologist about the treatment plan.

    · Share on FacebookShare on Twitter
  • Rubyluby
    Rubyluby Member Posts: 74
    edited May 2013

    So sorry to hear about what you're going through.  The waiting part is so hard.

    When I was waiting to find out what my full diagnosis was in 2009, I watched this documentary on YouTube, about an extraordinary survivor of BC, which bolstered my spirits hugely. Hope you find it helpful too.

    http://www.youtube.com/watch?v=-Wme518TBV4

    · Share on FacebookShare on Twitter
  • MiracleMileM
    MiracleMileM Member Posts: 103
    edited August 2013

    Hi thankfulmom,

    A PET scan sounds like standard protocol for someone in your situation and key for restaging.  For your appeal of the isurance company denial, I would ask for help from both the cancer hospital and your state agency with insurance oversight.  In my state (california), the toll free help line will counsel you on your rights in the appeal process.   For instance, was the denial by someone with the clinical expertise to make that decision?  Are there any written guidelines used in the review or determination process?  You should have a right to any written guidelines and information on the professional expertise of the person who said "no."  After you get the guidelines and professional expertise and clinical expertise of the person who said "no," ask the hospital to write up something explaining the medical necessity of the PET scan for the restaging. Just make sure you are not blowing any deadlines waiting for this information.  If you have to proceed without, make certain you indicate you will be augmenting your appeal when you get the additional information.  And find out if your state has an independent medical review system.   Do not let the ins. company get away with denying what is pretty standard protocol.  And in terms of what you pay, do not let the hospital charge you the private pay sucker rate.  Ask to pay no more than their lowest carrier contract rate or the state Medicaid rate. 

    My heart goes out to you in this difficult situation.

    · Share on FacebookShare on Twitter

Categories