Oncotype funding in Ontario

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  • Beesie
    Beesie Member Posts: 12,240
    edited March 2010

    Great news!  Thanks for posting.

    This day would have come sooner if the #%$@&*!!! company that owns the patent to this testing had authorized a Canadian lab to do the test, which would certainly have cut down on the cost. And even now that it's approved, I suspect that more doctors would recommend the test if only there was an easier way to get it done.  Currently the process that our doctors have to do through to get an oncotype test done is pretty onerous.  In the U.S. doctors have offices full of admin staff to process paperwork and insurance claims so they are used to having to jump through hoops to get anything done.  Our doctors aren't used to that and they aren't staffed for that.  Our system is built to funnel healthcare dollars into actual patient healthcare, not on administration.  Oops, sorry, I shouldn't get political here but I worry that we won't see the use of this test that we should for because of the onerous process inflicted on us by a company that is trying to maximize it's profit on the backs of cancer patients.

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited March 2010

    Seems to me that this company would want to open up "branch labs" in other countries to take full advantage of the numbers of patients and docs worldwide who want the test.  I wouldn't be surprised to see this happening within the next year or so.  Just wish it had been available for me 2 years agoFrown.

    Beesie, I think you've written about this before, but could you refresh our memories as to the process our docs need to go through to get this test done (aside, now, from the approval process).

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2010
  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2010

    Thanks for posting the article about funding in Ontario for the Oncotype test.  This is great news!

    Bessie, I am wondering if I could get your perspective on my situation? I was enrolled in the TailorX clinical trial, in hopes of getting the Oncotype test done. Obviously I had hoped to get a very low score, but just knowing the score would have been very helpful. Unfortunately I am told California has asked for more tissue, and the hospital in Toronto where I had my surgery is saying there isn't any more tissue to send. I contacted California myself to ask how much tissue they need to perform the test, and how much did they receive of my tissue. I thought that they needed .5cm, but it turns out they only need 2mm in order to do the test. I have my pathology report, which states I had 6cm of tissue taken out which was extensive PLCIS with 5mm of PILC within it. Therefore there is more than enough invasive tissue, yet Toronto is saying there is no more to send. I am not from Toronto, so my hospital which is involved in the clinical trial makes all of the arrangements, and when they asked Toronto to send more tissue they claim there isn't anymore. California has told me they received 14 slides and the report I have says that there are 27 slides. 

    Do you think it is possible that Toronto just can't be bothered to jump through all of the hoops? So as it stands right now, I have waited over 3 weeks for results, but still don't have any.  My file apparently is still open. Is it that they make it so difficult for the pathologist to get it to them exactly the way they want it?  I read through the link you provided above, and it does seem intense.

    Appreciate any feedback,

    Thanks Cathy

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2010

    Cathy, I wish I could help or offer advice but I can't.  I don't know what I would do in your situation, other than shake my head and maybe scream.  It sounds like you are getting two different stories, one from the lab in California and another from Toronto.  There's really no way to know who is telling the truth.  What does your doctor say?  Since you are in the TailorX trial, I would think that the doctors involved would want you to get the Oncotype score and maybe they can figure out what is going on. 

    Could it be that some of the 5mm of invasive tissue has been used for other testing and therefore perhaps is not available and/or doesn't meet the criteria for the Oncotype test?  Or maybe California got 27 slides but only 14 are considered usable?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2010

    I am ready to scream.  I just got off the phone with the lady who is running the clinical trial here at the hospital.  Finally the pathologist from Toronto has called her back and states they do not have anymore invasive tissue to send.  She is trying to explain to me that just because the pathology report says there was 0.5cm x 0.4cm x 0.3cm of pleomorphic invasive lobular carcinoma that was found in the specimen sample of 5.8cm x 4.2cm x 3.2cm, this doesn't mean that all of the 0.5cm was invasive.  I am by no means a pathologist, but would you not have to put EXACTLY what the size of the invasive is.  If all of the 0.5cm is not invasive then that is not what should have be written down, and therefore my pathology report is not worth the paper is is written on. If California is stating that they received 14 slides, supposedly Toronto sent to them what they had of the "invasive" tumor, then they should be able to do this test.  So it leaves me to believe that the pathology report is incorrect.  Now I think I need to have it sent somewhere to be reviewed.  Just not sure where.

    Thanks for trying to offer your help. 

    Cathy

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2010

    It might be that the entire 0.5cm area contained invasive cancer but that all the area wasn't purely invasive - some part of it could have included a blend of cells, some invasive and some not.  I know that my pathology was a hodgepodge of lots of things all mixed together.  If that's the case, the pathology report would still be accurate (as I see it, but I'm not a pathologist) but there might not be enough pure invasive samples to send more to California.  

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