Has anyone had experience with FoundationOne?

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.

16 Replies

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  • 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.

  • 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?

  • 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.

  • 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.

  • I meant the tissue sample from my RP.

  • Hey Dan,

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

    Joe

  • 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

  • Whaaaat?!?

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

    Joe

  • 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

  • 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

  • Yes--great experience. If old enough for Medicare as I am--mine was totally free. They take insurance, depends on your policy and company, and how much is covered. Best thing to do--go to their web site, get their 800 #, and call. You will get a navigator, who will explain the entire process. They have lots of info and empathy and will walk you thru the process. You will get an evaluation of 310 genes, and will determine which genes mutated. Your report defines all drug or medical treatment protocols being used today, as regular treatment or Clinical trials, against your specific Gene mutations, all over the world. You can print the registration forms on line--have your Doctor sign it--and your Doctor faxes to Foundation One. In 3 weeks your report is sent to your Doctor, you can indicate you want a copy on a secure link.

    After the test they do not leave you. I have had a couple of conversations, with Doctors there, and one question was so complicated, a Geneticist [PHD], called me at home at 8 PM to discuss some detailed info.

    Though I do not need advanced treatment today--I have plans laid out if I ever do. And the plans of what is being used by my mutations are updated regularly--but it is your job to contact them for updates. This can done thru your secure e-mail link--but I like calling, and getting a real live person with knowledge--and if he/she cannot help they pass it to an Oncologist or Geneticist to get back to you. Foundation One takes care of getting your bodily samples. If you had a RP--you do absolutely nothing--they get tissue samples from Hospital. If you still have your prostate, they can get a blood sample, called Heme. That I do not know how it works since I had a RP.

    Nalakrats

  • 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.

  • 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.

  • 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.

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

    Rich

  • 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.

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