Newbie here, but not to cancer

mukamom
mukamom Member Posts: 402
edited March 2014 in Caregivers #1
My DH was dx with stage iv colon cancer mets to the liver 12/08, two weeks after my father passed away(not from cancer). We were blindsided, to say the least. Colon resection, iliostomy, chemo once a week for 26 weeks. In the middle of that, right lobe liver resection and finished chemo in Oct '09. No evidence of cancer til Jan '10 the day before iliostomy reversal when CT of liver showed suspicious area, right up against the diaphraghm. So more chemo...and tumor board decided that since the tumor was where it was, gamma knife stereostatic radiation was the way to go.(Cyberknife) CT guided biopsy, and marker placement scheduled...but no evidence of tumor..YAY!! Oncologist left it up to DH whether to continue chemo..we opted to continue until next scan, reduced drugs, no avastin. Tumor is back..so off we go for marker placement. Placed markers, and surgeon office scheduled cyberknife tx. ONE MONTH LATER insurance denies coverage because it is not a covered treatment. It took them ONE MONTH to say they did not cover this type of tx in the liver, while we sat around and did nothing waiting. I want to scream so bad..all this wasted time b/c ins drug their feet. We see the surgeon tomorrow to discuss other options, but they seem to be limited. We will crash the the oncologist office too..after the surgeon, to get his input. DH was so excited about the cyberknife(there are good results in killing off tumors) and now he is really depressed, talking about wills, and the end of life...don't know what to say or do for him.

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    let me understand
    You are on hold because your insurance company does not cover cyberknife treatment to the liver?

    Is your surgeon a preferred provider for this insurance company?

    There must be a way to appeal this decision. New treatments are introduced every day and if we don't push for the viable ones, they never get accepted. I think it is worth a try.

    The oncologist may be able to offer another treatment to get started on and at least keep the cancer arrested until other issues are resolved.

    Have you checked the cancer specific website to see if there is anyone out there with your issue? It is worth looking at.

    Let us know how things are progressing. I will say a prayer for your and your husband, Mukamom.
  • kimmygarland
    kimmygarland Member Posts: 312
    #3
    Noellesmom said:

    let me understand
    You are on hold because your insurance company does not cover cyberknife treatment to the liver?

    Is your surgeon a preferred provider for this insurance company?

    There must be a way to appeal this decision. New treatments are introduced every day and if we don't push for the viable ones, they never get accepted. I think it is worth a try.

    The oncologist may be able to offer another treatment to get started on and at least keep the cancer arrested until other issues are resolved.

    Have you checked the cancer specific website to see if there is anyone out there with your issue? It is worth looking at.

    Let us know how things are progressing. I will say a prayer for your and your husband, Mukamom.

    So Frustrating
    So frustrating to have to fight cancer and insurance at the same time. I hope you can appeal and you get a good decision.

    Thinking of you, hang in there.
  • mukamom
    mukamom Member Posts: 402
    #4
    kimmygarland said:

    So Frustrating
    So frustrating to have to fight cancer and insurance at the same time. I hope you can appeal and you get a good decision.

    Thinking of you, hang in there.

    appeal
    Surgeon is appealing...I can't get anywhere with the ins co myself..what I have to say doesn't matter. Onc started chemo again full strength with the avastin. So now we play the waiting game again. CEA was down last week from 35 to 17.

    Surgeon says we have no other options other than the cyberknife. Tumor is too close to the diaphgram on the back side of liver. Ablation would involve major sx so as not to burn the diaphgram or destroy any more of the liver that is left. He doesn't think DH could handle another sx.

    All prayers are appreiciated

    Angela
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #5
    mukamom said:

    appeal
    Surgeon is appealing...I can't get anywhere with the ins co myself..what I have to say doesn't matter. Onc started chemo again full strength with the avastin. So now we play the waiting game again. CEA was down last week from 35 to 17.

    Surgeon says we have no other options other than the cyberknife. Tumor is too close to the diaphgram on the back side of liver. Ablation would involve major sx so as not to burn the diaphgram or destroy any more of the liver that is left. He doesn't think DH could handle another sx.

    All prayers are appreiciated

    Angela

    Prayers lifted for you both
    You will both be in my thoughts, Angela.

    Let us know of progress.

    Hugs.
  • JustRenay
    JustRenay Member Posts: 54
    #6
    Find patient advocate
    I had a similar situation with my insurance company refusing treatments for my breast cancer. My doctor's office found me a patient advocate who brow beat my insurance company into covering my treatment. If your doctor cannot help with this, look online. I will do some research for you and post results. Keep looking and fighting this, until you get the treatment you need (and that your DOCTOR says is needed). Don't give up!! Renay
  • JustRenay
    JustRenay Member Posts: 54
    #7
    Noellesmom said:

    Prayers lifted for you both
    You will both be in my thoughts, Angela.

    Let us know of progress.

    Hugs.

    Patient Advocate Foundation
    This might help:

    www.patientadvocate.org

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