Denied PET scan

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Kimmysu
Kimmysu Member Posts: 10
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hello fellow IBC survivors,

I'm in a funk.  I am through with my adjuvant chemo, my bi-lateral mastectomy, my 6 1/2 weeks of rad's. My rehab. My life is trying to get back to normal.  But you and I know, there's no getting back to normal till we get that first check up green light that says "Yes! You do NOT have cancer!"

My first PET scan is due.  Was, in fact scheduled for November 3rd.  Yep, yesterday.  The insurance company won't cover it.  Says it's considered surveillance since I have no signs of cancer.

Hello. Months ago, prior to my surgery, I was told by my health care team not to get reconstruction for a couple years, though I wanted it.  They explained with locally advanced cancer, you have to catch it right away if it recurs.  They said if it moved from stage IIIb to stage IV it would not be curable, only treatable.

I'm going over all this that most of you already know because the insurance comapny wants me to get CT scans to see if there's any cancer, as opposed to a PET that will show cancer cells at the cellular level.  To my way of thinking, if I understood the docs several months ago when they said we would have to catch recurrence right away or it wouldn't be curable, something a ct scan would show (a mass) would be far too late to do anything about when you're dealing with IBC! Thus, only a PET catching abnormal cells has any chance of saving my life.

Does anyone understand this differently?  Has anyone found IBC recurrence with a CT scan and come out fine? 

Also, has anyone been denied a PET by their insurance and gotten the decision changed on appeal? (mine has already been through the appeal process.)

I am so upset.  Maybe more upset than I was when I was first diagnosed.  Since I know IBC has a high rate of recurrence, and my insurance company won't pay for the PET scan, I feel like I'm walking blindfolded.  Like cancer can strike at any time and I won't know it till it's too late.

Any advice, or commisseration is welcome!

God bless you all.

Kimberly 

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Comments

  • Laura_Jean
    Laura_Jean Member Posts: 48
    edited November 2011

    That is so frustrating. If your onc is on board with this I don;t see why your insurance company cannot cover it. 

    I am getting a chest ultrasound first though, and then a PET scan six months after radiation was completed. I was told that I could not do a PET scan earlier as it would pick up from the radiation and be more likely to give a false positive.  When did you finish your radiation? That could be one of the reasons they want you to wait; I am not sure.

    Laura Jean 

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  • OneBadBoob
    OneBadBoob Member Posts: 1,386
    edited November 2011
    Not IBC but my advice

    Appeal. Fight. Ask your insurance company for the name of the "doctor" who is making this decision without ever having met you or examined you. Ask what state she/he is licensed to practice medicine in. threaten to bring a lawsuit against him/her for recommending or denying treatment when he/she has never examined you.



    Demand that that doctor speak directly to your onc and supply reasons for the denial, verbally and in writing, within five days (or whatever the time limit is in your state)



    Who is your insurance carrier and what company do they use for scan approval, and ask them for their website which contains their guidelines fro approving or denying scan requests.



    Did your onc schedule pet scan and ct scan for the same day? That is the first reason my insurance denied my pet scan and my onc gave them a letter of medical necessity that I was unable to emotionally withstand going on two separate days.



    Both pet and ct were approved for the same days.



    Unfortunately I have to go through this for every MRI ct or whatever.



    Please fight and appeal and I am sure you will get approval.



    These stinking insurance companies count on our accepting the denials and their saving money.



    I have found every time I fight the denials I end up with approvals.



    Sorry for the rant but this really burns me!



    Make noise. Write letters and emails to everyone including your state insurance commissioner, your senators and congressmen

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  • BlueCowgirl
    BlueCowgirl Member Posts: 667
    edited November 2011

    Not IBC either, but I totally agree with Jane. Getting my PET scan approved took lots of jumping through hoops after initial rejection. Fortunately for me, I had someone willing to advocate like hell for me at my RO's office, so I wasn't even the one who had to spend hours dealing with this. Is there anyone associated with your prescribing doc that could help out with this? Couldn't hurt to ask, since the doctor obviously thinks it's warranted. 

    Best wishes to you for a covered - and clean! - scan. 

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  • Kimmysu
    Kimmysu Member Posts: 10
    edited November 2011

    Ladies thank you for your replies and your support!

    I finally got approval for tests, but not a PET.  I got three CTs, chest, abdomen, and pelvis.  I have not gotten a clear answer from anyone as to the efficacy of the tests.  Which one is more likely to find metastasized cancer cells?  

    The nurse said if it comes back as a stage 4 there is no cure, only treatment.  So in essence does it matter which test finds its return? Or does one find it easier than the other?  Does one find it at a more treatable stage?

    Does anyone know of CTs working to catch a recurrence?  If so, how did the treatment go?

    I am shaking my head, wondering if I will have to do this battle every time it's time for a check.

    I have enlisted the advice of a patient advocate through American Cancer Society.  She hasn't said whether she can help me yet.  I have to send her some info.  I'll let you know how it goes.  

    God bles and thanks so much for your support ladies! I hope you all are doing well and will remain in remission!

    Kimberly 

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