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Foundation One Testing Question

woodstock99's picture
woodstock99
Posts: 116
Joined: May 2021

When I first joined this group after initial diafgnosis, someone recommended having Founadtion One test done at the front end after surgery so I reqiested this from GO.  This was before I had surgery and final path. 

I recently messaged their office to inquire about this and they nurse said they had to get my pslides back from MDA where I had a second opinion.  The nurse also told me that inusrance usually will not cover FO testing unless you have had a recurrence but that they would still submit for a prior approval.  I asked her to find out for me what my cost would be if insurance does not cover. She got back to me with an amount and I told her I could think about it and get backl to them. 

There may have been a disconnect somewhere as I got a call from FO today to tell me they got my order (although the person did not know if they got my sample) but told me that my insurance is out of network plus they do not know upfront if they will cover so I asked this perosn what my cost would be and she gave me an amount conisderably higher than my GO nurse. 

She said the price I was told is the Meducare price but I am not on Medicare.  I have insurance through my employer.  She gave me a number for Client Services to call tomorrow but I contacted the nurse who gave me the origonal cost and she said she knew that the amount she told me was the cash price and that it was what was told to her by the rep they work with and she would look into it tomorrowas well as if my tissue sample had already been sent and if I have option to stop the test if they already received. 

My question to all the smart women here is not so much about the cost (which I will have to decide on based on what I find out as I feel like my insuramce will not pay) but is this soemthing I should be doing now being 1B3 ? 

Is it so if I were ever to have a recurrence I would already know the markers etc and an idea of what treatment would work or not? 

If I did not do this now but had a recurrence later would they normally do another biopsy and send that tissue vs the original? 

I searched to find the post from the person who recommended doing this at thr front end but I cannot find it.

Also is this just opening up Pandora's Box and could there be info I don't wnat to know about now ? 

Any insights would be apprecaited.  Many thanks.   

Dak82's picture
Dak82
Posts: 92
Joined: Dec 2020

My oncologist didn't send a tissue sample to Foundation One for testing until we were confirming my eligibility for immunotherapy. The total cost was cited as 6200.00. We paid 250.00. Could be insurance unique and situationally dependent.

Not sure this helps much but it did confirm I didn't have a high tumor mutation burden but was mis-match repair deficient which qualified me. Foundation One is the only FDA approved lab recognized to conduct this testing.

Good luck!

Deb

woodstock99's picture
woodstock99
Posts: 116
Joined: May 2021

Thansk Deb - not oto be too personal and ok if you don't want to respond but was this after your received your initial pathology or due to a recurrence and/or do you know if this wwas ddue to your stage and/or grade?  

I just found on the FO website that it says stage 3 or 4 or recurrence and I am Stage 1B Grade 3 so wondering if I really do not need to do this at this time. ??? Thanks, 

"If you can get tested soon after your diagnosis of advanced cancer (Stage 3 or Stage 4), that can give you and your doctor a chance to follow a personalized treatment strategy right away. The testing can also be performed when your cancer has progressed or at a point when you and your doctor are looking to decide on your next treatment step. Your doctor will work with you to decide when testing may be appropriate for your specific cancer."

Dak82's picture
Dak82
Posts: 92
Joined: Dec 2020

I had it done after my post chemo CT scan showed lung Mets that had developed during chemo. The Foundation testing was done as we decided to move to immunotherapy and was needed largely for health insurance reasons--to prove I qualified vis a vis my bio markers. Not done after initial pathology report although report noted at that time that IHC testing indicated I'd be a good candidate for immunotherapy. My biggest regret/lesson learned is to ask questions and try to get a mid-chemo scan to see if the treatment is actually working. No sense in looking back though.

Deb

Harmanygroves's picture
Harmanygroves
Posts: 294
Joined: Jun 2021

No sense in looking backward. Hindsight is 20/20, however, and your experience gives us knowledge that may be important to someone, somehow, someday.

Thanks!

Maxster
Posts: 92
Joined: Apr 2020

Memorial Sloan Kettering has something called the IMPACT testing that will tell you the best drugs for your individual cancer.  This is important if you have recurrence.  While I don't know if it is FDA approved, I have been told it has the largest data base.  Because I had a second opinion there, I was able to have the testing done.  Even tho my insurance would not pay, they never charged me.  I think because they are a research facility, they don't want barriers to the testing.  Here is the link:

https://www.mskcc.org/msk-impact

Harmanygroves's picture
Harmanygroves
Posts: 294
Joined: Jun 2021

I got back a big batch of paper, after requesting genetic info / molecular subtesting done on my tissue sample, and it was stuff like PTen, etc. with a big list of other genetic numbers and codes.

My doctor was such a &*() about everything I requested that I left that clinic.

"The Other Deb" : )

 

woodstock99's picture
woodstock99
Posts: 116
Joined: May 2021

I never heard of FO before I read about it ina post when I first joine dteh site.  But as hard as I have tried I cannot find the post wheer someoen said to do it.  

woodstock99's picture
woodstock99
Posts: 116
Joined: May 2021

I decdied to cancel this test.  It spoke to soemone at FO and she told in her 3 years there she has not seen anyone get it who was stage 1.  It would be a lot of $ out of pocket for me so hopefully I will never need it.  

oldbeauty
Posts: 320
Joined: May 2012

Woodstock 99, I was Stage 1C (old system) Grade 2 endometrioid adenocarcinoma in 2005, had surgery and EBRT.  Declared cured!  You can read my story.  I've recurred 3 times since then.  Of course, now I'm Stage IV and treatable not curable. Ha! I got the genomic testing just recently, after my wedge resection surgery bc it was fresh tissue and bc my tissue and slides from 2005 had been discarded in accordance with hospital protocol.  The analysis did not reveal anything dispositive as far as treatment today.   It may be useful on down the road.  If you don't do it now, be sure to keep track of your tissue and slides for future use.  Also, my medical center uses Caris.  You might talk to them.  The kind person I spoke to in the lead up to testing told me they were in the habit of making sure testing got done even if insurance or the patient couldn't pay.  I'm over Medicare age, if that's relevant. I think at the least your surgeon/oncology practice would have tested for Lynch syndrome and mis-match repair status. You might give Caris a call.  It's in Arizona, I believe.  Best wishes, Oldbeauty.

woodstock99's picture
woodstock99
Posts: 116
Joined: May 2021

Thanks everyone.  Good info as always. 

bluehyacinth
Posts: 50
Joined: Feb 2016

I had it done when my cancer hqd spread to liver. I also had a choice of various drugs besides immutherPY. MEDICARE DID NOT COVER IT, BUT THE research hosptal did.

 

6 years ago though.

yetti's picture
yetti
Posts: 70
Joined: May 2019

My onc had foundation one do the testing !  I was never informed of this, and was never given information on the findings.  He took it upon himself to do the expensive test, which I was never aware ! The results were not well founded. But I was angry when we got the bill of what insurance didn't pay ! I sent the onc a letter saying we we're not paying this! Bc of the above reasons!  I always felt like I was in the dark as far as info and communication with this onc ! Hence 2nd opinion CTCA ! 

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