Anyone have cancer with unknown primary?

Posted by rita8898 @rita8898, May 20, 2019

Anyone suffering from cancer with unknown primary?

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@loribmt

Richard, I’m so sorry to hear about your wife having cancer. You are both going through a such a stressful period right now. And it’s so darned frustrating when insurance turns down a request for tests or procedures. I’ve had that happen and my oncologist wrote a narrative to the insurance company as to why I needed a test and it was then approved. So don’t take this as the final word. Keep pushing for the PET/CT scan. Call your insurance company and speak with an underwriter or contact your wife’s oncologist office to have them re-submit the request. It’s ok to be the squeaky wheel! I hope you’re doing well…sending a hug to both of you.

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Hi Lori, it's been appealed. My wife's oncologist even had a peer-to-peer telephone call with the company performing these approvals for the insurance company and they still turned down the request. I'm going to write letters of appeal to the company and to the state Department of Insurance although I doubt anyone will pay attention. Thank you for your support.

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@richardab

Hi Lori, it's been appealed. My wife's oncologist even had a peer-to-peer telephone call with the company performing these approvals for the insurance company and they still turned down the request. I'm going to write letters of appeal to the company and to the state Department of Insurance although I doubt anyone will pay attention. Thank you for your support.

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It is one of the greatest frustrations of life, to have to beg for medical care…
I wish the best for both you and your wife and hopefully the appeal works.

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@richardab

Wife has retroperitoneal cancer, primary unknown. She's had MRIs, Cat scans, both without contrast as she can't tolerate them. Her oncologist tried to get her a PET CT scan and the insurance company turned it down. Very frustrating.

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Hello:
My question is why your doc didn’t request PET scan in the first place instead of trying to get it as a last resort. PETs pick up hot spots in the body that might not be seen using other diagnostics. I would suggest pushing a little harder or if necessary pay for it out of pocket. For proper treatment you need to know as much as possible about the situation.

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@gisellef

Hello:
My question is why your doc didn’t request PET scan in the first place instead of trying to get it as a last resort. PETs pick up hot spots in the body that might not be seen using other diagnostics. I would suggest pushing a little harder or if necessary pay for it out of pocket. For proper treatment you need to know as much as possible about the situation.

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@gisellef, this is a new oncologist for my wife, she's given up on the others for reasons including what you say, that they didn't even do the basics needed to locate the cancer. She did not want me to get into it with her old docs although I was more than willing. I'm going to find the cost of a PET CT and will pay for it myself if our final appeals don't work.

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Excellent decision. It sounds as though you have been a wonderful support to her.

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