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Curt

3 Week Lobectomy Follow Up Tomorrow

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My two cents on the biomarker tests: it saved my life.  When the local hospital test was EGFR negative, PDL-1 0% & ALK was indeterminate my onc sent the biopsy to Foundation One.  FO used a different test & concluded what the onc suspected from day one- ALK Positive.  

So enter the insurance company.  They denied the FO studies three times for different reasons.  I just got the results back from the External Review Organization last night in the mail.  Much to my surprise the ERO upheld the insurance company’s determination that the FO testing was not medically necessary.  Totally unbelievable.  The review determination was completed by a doc board certified in Internal Medicine with a speciality in medical oncology. So much for the peer review process.  LOL. 

The ERO found the local testing to be sufficient. I would have been in Shel’s position & gotten a lot of chemo at over $100k a pop.   All of that instead of a $6k test.  

What I learned:

1. Ensure the ordering provider precertifies the FO testing (mine dropped the ball)

2. Apply for FO financial assistance straight away. 

3.  Reapply for financial assistance at the time of the 1st insurance denial (they will increase the support) 

I was totally prepared to pay out of pocket & was fortunate to get 100% patient assistance.

This was a six month hassle so be prepared to make time for all the administrative hoops.  

We’re lucky to have access to a NCI but it doesn’t seem as if the insurance companies can keep up with the science as their medical necessity criteria is not current & the doctor’s they employ don’t understand the emerging treatment models.   Onward! 

 

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Curt,  I agree that the germline genetic testing is a good idea, especially for people who have significant family histories of lung (or any!) cancer, or who, like me, have multiple primaries. Besides being helpful to individuals, it would help to clarifiy the status of specific Variants of Unknown Significance--  statistically is the variant significantly associated with a specific cancer diagnosis or not? For this to be determined, a lot of people need to be tested.

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I'm with Paula - nothing to add - but I have definitely learned a lot from the posts. Just excellent. Very helpful and clarifying. Thanks to all of you.

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Curt.

I am just beginning my journey with lung cancer so I feel kind of naïve commenting. I am so glad for you that your news is good. It is great to be inspired by someone else's strength and success. I wish you all the best of course. Suzanne

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Thank you @Suzanne Gibb.  Welcome here, but sorry you have to be.  I read your other post.   I don’t have any experience with radiation treatment but there are others that do that I’m sure will respond.  It was too cold to go outside after my surgery so I took to cleaning the house to be active.  Keeping the house in order felt good when the rest of my life was feeling quite a bit out of order.  Good luck with your treatments.    

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