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Paying to have your Molecular testing expedited?

Paying to have your Molecular testing expedited?

Posted by Tiger Lily on Aug 13, 2019 12:12 pm

Dear Friends,
I am sure I saw a post on this site where someone had paid a fee to have their testing re eligibility for targeted therapy expedited. Does anyone else remember this, and if so, can  you please direct me to the poster?

Since there is nowhere in Manitoba to have this testing  done, our pathology is sent to Ontario and there is a 4-6 week delay for results since we are not from that Province.  We are in an urgent situation and would be willing to pay for the testing if possible.

Thanks so much
Karen

Re: Paying to have your Molecular testing expedited?

Posted by Ohno on Aug 14, 2019 8:32 am

Tiger Lily‍ I don't know of anywhere like that, and I'm from Ontario, where I was diagnosed 6 weeks ago and still have no treatment plan due to waiting for the biological testing, probably the same sort of results you're waiting for.  There is such a wait for things like PET and MRI (I still haven't had the MRI, it's scheduled for Aug. 30).  So far, all that has been confirmed is that I have non-small cell lung cancer with mets to 2 areas in my spine.  I have a "probable" treatment plan, but I had one of those with a radiation oncologist a couple of weeks ago until the PET showed the mets.  So I'm hoping tomorrow I will have those results that will allow some sort of treatment to start since breathing becomes more difficult every day.  They tell me that exercise is very important to avoid blood clots and strokes but it's hard to do anything when you can't breathe well.  The plan today is that I will get a catheter put in to drain the fluid from the pleural that keeps building up.  And then maybe tomorrow I'll have a plan.  And that will have been 4 weeks from when the biopsy was taken.  

I have inquired about paying for - well, anything in this whole process to get it done quicker.  There's nowhere in Ontario that I know of that allows for it.  I suggested that I go to Buffalo, just an hour away from me, to get an MRI - the response from the doctor was dismissive, saying it makes on difference, the treatment plan will remain the same.  I suggested going south for a PET but got a whole big rigamarol answer about needing to have someone in Ontario to read it...  

All I can tell you is that any time I have wondered about the delay, I have been told that a few weeks here and there will make no difference in my outcome.  It sure makes a difference in how I feel while sitting with this stuff growing inside me and me doing nothing to stop it for 6 weeks.  

Best of luck to you and your husband, Karen.  Here's hoping we all come out the other side of this in good shape!

Diane 

Re: Paying to have your Molecular testing expedited?

Posted by ACH2015 on Aug 14, 2019 9:15 am

Tiger Lily‍ 

Who has suggested that you seek private (third party) molecular testing ?

If its one of your medical team, throw it back on them to supply you with the source for this testing, and costing information. From whom will they accept diagnostic results and the needed report?

Ohno‍ brings up an important point. If your tests are from a third party, who will not only accept the results, but read them for you?

Many (Canadian) clinical trials involve the testing of our tumors and the results are produced, read and accepted by the investigators and become valuable information to you and the medical team as current and historic information for future use / need.

Below is a link to the (Ontario-wide Cancer TArgeted Nucleic acid Evaluation) OCTANE clinical trial I participated in during my cancer treatment. It provided bio marker's, a registry of targeted gene sequencing and molecular testing information specific to the trial's desired results. But of equal importance, not only did the results benefit research, but the donor/provier of the tumor sample as well re their specific cancer make up.

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=2ahUKEwjf9YeMu4LkAhXQWc0KHX6uDzEQFjAAegQIAhAB&url=https%3A%2F%2Fclinicaltrials.gov%2Fct2%2Fshow%2FNCT02906943&usg=AOvVaw0X_63ar7g__6WnT_LOBQho


I'm quite shocked to learn for your post that Ontario bares the burden of reading Manitoba cancer patient's pathology reports. Not good for you in Manitoba or us in Ontario, given that Health Care resources are being further and unnecessarily stretched - unless Manitoba has contracted their needs out to a private facility.

Another option for you is to contact the Manitoba Ministry of Health office to seek assistance and direction.

I didn't have time to scroll through 106 pages on their Ministry of Health website. I suggest calling the "800" number below as a place to start and seek direction on this issue.

Are you covered?  If you have questions about whether Manitoba Health covers a service, contact: Please let us know how you make out.

ACH2015