Has anyone had experience with FoundationOne?

[cfrees1]

I sent my urologist an email asking him about genomic testing, the Cancer Moonshot, Blood Profile Atlas project etc. to see if there are options to get genomic tests for me, prior to being castrate-resistant. My doc came back with the suggestion of FoundationOne, which costs about $1000 and i assume would not be covered by insurance. I investigate the website a bit and I'm intrigued. I'm wondering if anyone has had any experience with this company and would recommend for or against it? I'm thinking it is probably worth $1000 for my piece of mind but it would be nice to get a recommendation from someone who might have some experience. Thanks.

[Dan59]

C, Did you get a quote of 1,000? Mine was 5,800. They will work with you if you are on limited income. Did not find any genetic mutations.

[Neal-Snyder in reply to Dan59]

They will also submit it to Medicare if you're old enough, but it's not clear to me how Medicare decides how much to cover. You can start with their quickie financial aid application, which I'm going to do. If you don't have a tumor sample anymore (my RP was in 2003 so my sample was destroyed in 2013), they have a FoundationAct blood test, which covers far fewer mutations, but perhaps the most important ones. HAS ANYONE DONE FOUNDATIONACT?

[Hidden in reply to Neal-Snyder]

I wonder if there is enough material from just the prostate biopsy to be useful for this. Do they keep biopsy samples for a while? My biopsy was mid June of 2016.

[Neal-Snyder in reply to Hidden]

I don't know the answer. Hopefully someone else will let you know. All I know is that my RP was kept for 10 years, & I believe that is standard. The folks at Foundation are very helpful, so you could just call or email & ask.

[Neal-Snyder in reply to Neal-Snyder]

I meant the tissue sample from my RP.

[Hidden in reply to Dan59]

Hey Dan,

Would you put that cash out again, for piece of mind? I couldn't do it. On S/S.

Joe

[Dan59 in reply to Hidden]

Joe, I would not do it again, as I already did and they only found a hedgehog mutation of no clinical significance, I had was supposed to be an outpatient robotic surgery to get the sample, but it turned out to be a full open surgery and I was detained in the hospital for 8 days. So I would probally not do it again.

Dan

[Hidden in reply to Dan59]

Whaaaat?!?

Dan, sorry to hear that. What is the sample? I'm afraid to ask? Tell me slowly.

Joe

[Dan59 in reply to Hidden]

Joe, the sample is one of my cancerous tumors in my abdomen as that seemed easiest to get, the sample was sent to foundation 1, the actual good news is that I did not have the different mutations that would indicate poorer outcome, even though they have drugs for these, it is basically getting a sample of my cancer to see what I would respond too. On another note he took out a big soft tissue tumor and either because of that or because of stopping estrogen after many years I had a 33% psa drop that I am still riding. I am not exactly sure what happened , that made them switch from outpatient robotic to full open, I think it was a lot of blood loss.

Dan

[Dan59 in reply to Hidden]

Joe , I am pretty sure if you are just on ss foundation 1 will waive the cost, they are very kind and understanding, see post on this from 2 months ago

You may have to call ahead of time

Dan

[sfboy58]

My oncologist received my report from Foundation One last week. I had 5 genomic alterations: AKT2, TMPR552, ASXL1, CDKN2A/B and TP53. The report even gives clinical trials that are available for any of these alterations. I had two clinical trials identified. The cost was $5800. The cost was submitted to my insurance, BCBS, and Foundation One told me it should be covered. My oncologist submitted the initial paperwork to Foundation One to get the ball rolling. It took about 4 weeks to get the results. Hope that helps.

[bb66hotflash]

I had a Foundation One analysis and report last August. Reply was very specific with a list of genetic alterations found in tumor and found one phase 1 clinical trial that was local. Very pleased with results. Insurance covered the cost.

[jimk_mb]

I had the Foundation One test done not too long ago, but used a stored sample from my 2012 surgery pathology. They only found one genomic alteration - NOTCH1. The company is very good in terms of working with you on cost if insurance doesn't cover it. Note that I've also had the Decipher test done.

I went to the 2016 PCRI Conference in Los Angeles and listened to Dr. Kwon (Mayo Clinic) talk. One of the points that he made and stuck with me had to do with the heterogeneity of cancer within a metastasis. I've read this elsewhere as well. Given this, I am suspect that the genetic test findings are dependent on what particular pathology sample is used for the genomic test. For example, my pathology had Gleason components of 3, 4 and 5. To my knowledge there is no way to request that the most aggressive cell samples be sent out for testing. I questioned my med onc about this and he indicated that it was something that I had no control over. Anyway, I have had 2 genetic tests, but will hold off on others until I am more convinced of the value. I believe there is great future in genetic testing and personalized medicine, but it may be a ways off. Just my thoughts. It may be that for others the tests have been helpful and decisive in their treatment path.

[BigRich in reply to jimk_mb]

You are correct in your brief regarding your tissue sample. I am awaiting my blood sample evaluation from Gene Dx, DNA Diagostics Experts'

Rich

[cfrees1]

I think what I'm hearing is that Foundation One is a good thing to do, at the right time. Since my PSA is still very low and not increasing at the present, perhaps it makes sense for me to wait. I will discuss with my urologist in February at my next appointment. I am not at a "next treatment decision point" yet, so knowing what mutations I have right now doesn't really do anything for me. Plus, perhaps the test will be even more revealing 3 years from now when I really do need to make a decision, so it's better to wait.

[paulcross4]

I did one at the request of of multiple doctors a few months back. It came back with multiple mutations and the doctors were very pleased with the results and adjusted treatments based on it. The insurance company was arguing about this cost a few weeks back to Foundation One told me that they would fight that multiple times and I should leave it with them. Heard nothing since.

Overall seems like a good thing to do.

[Drew1 in reply to paulcross4]

Same here. Oncologist ordered the test panel on my behalf (without my knowledge) or insurance approval in Jan 2018. A month later I get notified by BCBS that F1 is out-of-network and they won't pay any of the $5800 charge ($6k OON deductible). So I call F1 to discuss options and they ask me to sign something so they can work with BCBS on my behalf to get paid.

Now (Dec 2018) I get a bill from F1 for ~$4k with ~$1700 price adjustment by BCBS (BCBS still paid $0). I recall when I initially talked to F1 in Feb, they mentioned something about price to individuals can be adjusted to about 1/3 of the cost of what they bill insurance ($1800 comes to mind). I'll be calling them again shortly with their $4k bill at hand.

[paige20180 in reply to Drew1]

They covered my husbands. They love to deny to see if you will fight. Do not give up. For us They covered a Pet scan. Then 1 year later said PET scans are experimental. You just have to appeal and beat them at their sick game.

[paige20180]

BCBS covered my husbands Foundation One somatic tests. We know his tumor from RP had PTEN expression. Interesting his recent Biocept blood test did not detect PTEN so we know he has a somatic mutation. Now I research PTEN and read studies and hopefully will be ready to try drugs developed to fight his lack of tumor suppression.

[Back2future]

My results just came back with no genetic mutations. I will ask to see the report at next appt. They do have financial assistance and my insurance covered even if out of state.

[tallguy2]

I had FoundationOne testing done on a sample of a recent lymph node tumor biopsy. Only finding out of 310 possible mutations was P-TEN loss. My oncologist tells me that there are no drugs available yet to tackle this specific mutation. It is good to have the data for when the time comes.

My group insurance paid for everything.