Foundation One Testing

Cazz
Cazz Member Posts: 106
in Anal Cancer #1

Has anyone else had this testing done?  Was it at all useful to you and did your insurance pay for it?

My onc sent off tumor tissue for testing and they solemnly issued a 19-page report that has 18 pages of medical gobbledegook and one of legal gobbledegook.  They apparently identified five mutations in my tumor, none of which has ever been mentioned anywhere else in the world (CDKN2A/B anyone, how about PIK3R1?).  They identified two drugs that might be coming up for phase 1 clinical trials in various parts of the world that might, just might, have some effect on parts of two of the mutations - oh gee, I can hardly wait to pursue that.  For this they are billing me $5800!  My insurance company states that they won't pay because this service is specifically excluded from coverage.  I wonder when that went into effect, the day after the bill arrived on someone's desk at Blue Shield?  When I asked my onc what the report did for me, I was in the process of applying for the Nivolumab trial at MDA so he just said that we should concentrate on getting into that and not worry about the report for now.  Okay.  $5800.  Worry.  I do have to say that bioTheranostics (Foundation One) sent me a letter saying to call them if insurance turns it down, but they had left for the day by the time I got the mail.  I am hoping they just coded it wrong as the code they used was for genetic testing for Hereditary Breast and Ovarian cancer.  Hello, I don't need to be tested for hereditary anything, I can already tell them I've got terminal anal cancer. 

Sorry for the rant.  What's really bugging me is that the Nivolumab trial is still suspended with no idea when it will start up again, nor how long it will take me, as no. 5 or 6 on the waiting list, to even get in for the testing for eligibility.  As my two largest liver tumors have been growing unchecked by chemo since December of last year, I'm getting a bit anxious.  I think the largest one is now officially sized somewhere between an orange and a grapefruit and I'm wondering how long until it starts to cut off something important - or then maybe the lymph ones will get me first.  sigh.  grouch, grouch.  Somebody tell me something good.  Tell me you have a new grandbaby or just got a clear scan or heard a good joke.  Anything?

Carol

Comments

  • dpatter03
    dpatter03 Member Posts: 23
    #2
    Oh man am I sorry for what

    Oh man am I sorry for what you are going through.   I don't have any funny jokes for you, but we are in the process of planning a family reunion over Labor Day.   If all goes well we will have folks from Texas, Norway, Minnesota, California, Arizona, Michigan, Chicago, and Ohio to our little town in Iowa.  Picnic on Sunday night and all day at our house on Monday!  Young cousins are excited about getting together!!!   I find that fun!

     

    Good luck to you.   I will pray for you.

  • Diane2020
    Diane2020 Member Posts: 1
    edited December 2019 #3
    Foundation One

    Foundation One saved my life, despite MD Anderson's inability to manage the tissue biopsy and lack of testing after waiting 6 weeks for the results.  I moved to Cancer Treatment Centers of America.  They actually submitted the proper tissue to Foundation One.  Within 4 weeks, the report identified 52 gene mutations.  I was approved for the Nivonulab and Yurvoy combo immunotherapy.  I treated from May 2018 thru Dec 2018.  My CEA tumor markers dropped from 796 to 1.6.  I am cancer free and can not tell you the level of care that CTCA provides.  They pay 100% air travel and have discounted rates at participating hotels.  They saved my life. MDA gave me no hope.  I am thankful for slammed doors.  CTCA is amazing.  

  • feckcancer
    feckcancer Member Posts: 189 Member
    #4
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  • yetti
    yetti Member Posts: 82 Member
    edited April 2020 #5
    CTCA is GREAT

    I am also a patient of CTCA. I went to the Newnan GA, location  I had treatment in fla which was effective, on my stage 4 endometrial cancer, I had a laproscopic robotic hysterectomy, that went well and then wanted me to continue chemo, I had 3 treatments combined with avastin and had bad side effects.,  I decided after those 3 I was done. i wasn't getting any feedback as to how many more treatments of this hell they were planning, so after my last treatment March 29 2019 , I called CTCA.  Best decision ever!  I met with their Gyn onc  after they did their own labs and CT scan I was told I was in remission bc there was no evidence of disease.  I returned to fla the local oncologist called to ask when I would be returning for treatment???  I told them I sought a 2nd opinion and had a ct and labs. run. I am NED.!   

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