Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Is privately done genetic testing and whole genome testing available in Canada?
Does anybody know if it's possible to get paid genetic testing done privately and quickly for BRCA genes and HRD?
Somehow my biopsy samples did not get sent for this testing when the biopsies were done June 12 and have just been sent off now, so I'm at least 3 weeks behind and since I'm stage 4 I'm anxious to move things along as fast as I can. I don't mind paying myself if the cost is not astronomical. I'm meeting with the chemo team for the first initial consultation next week, and because I know these test results can affect treatment choices, I'd like to find out as quickly as I can.
Also, I've been reading some recent articles about how sequencing the whole genome could also potentially help find targeted treatments to try with very advanced cases like mine, and they said the price for this done in "expedited" fashion has come down in the last decade from $10,000+ to maybe under $2000. Again, because my late detection makes my case dire, I'm trying to explore any possibilities at all that might potentially help me.
Has anybody here gone this route?
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@TotallySurprised
I don't know the answer to that but do know there are private companies that do this. I think when I was discussing it with a Gyn Onc that private starts around $5,000. I could be wrong. I also don't know that if you go private that results will come any sooner.
It might be worth asking at either your next appt or to the reception of your team and inquiring. I am positive someone should know.
The waiting is terrible and there is no "one fix for all" out there, unfortunately.0 -
Thanks for the response, as always, Strongwoman. Sometimes hearing that others don't necessarily know an answer either makes me feel less stupid than I did!
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Hi @TotallySurprised
There is a Vancouver company called CToam that does DNA and RNA testing. How quickly they can respond with a report is a question. Cost of both plus their review of results and a plan is around $20K.
DNA is important for your treatment plan. RNA testing is important when looking at clinical trials.
Hope this helps. Am thinking about you...this road is not easy.
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Thanks for this information, Ellie. After numerous delays (all due to the system not listening to or reading the info I provided, I finally got BRCA & tumour HRD testing done through Myriad labs in the States. In case anybody else is reading this and looking for information, their Canadian distribution branch is called Noviscend and the reps were very, very helpful in chasing up on the medical bureaucracy's delays here. The test is called "My Choice" in Canada and does both the patient's BRCA status and the tumour's HRD status (=repairing deficiencies). It costs around $2000 US. Myriad's tests are FDA approved and were used in all the early PARP inhibitor trials/studies. Unfortunately, since both these mutations are apparently helpful in improving chemo response at least the first 3 years, I proved to have neither potentially helpful mutation. Oh well, it is what is, I say, and then I try to move on. As for clinical trials, I live in Atlantic Canada, where these are few and far between (non-existent for ovarian cancer, I think would be an accurate description). But again, like all of us, all I can do is try to keep putting one foot in front of the other, always in hope (however tempered by reality). Again, thanks for the message; all information is much appreciated. (Sometimes I feel like a squirrel dashing around and hunting everywhere in the hope of finding some new and nutritious nuts in preparation for the winter!)
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@TotallySurprised and @ellie Thought I would check in to see how you are both doing now that the holidays are behind us. Any updates? How are you feeling emotionally/mentally? Anything on the go for the weekend? Drop a line and let us know when you can. Take care
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