Speaking as a patient, I want you to know that patients in Canada and around the world are connected very much by the Internet, and through the Internet we read about clinical trials in other countries. We read about approved procedures in other countries. So we read about how successful certain isotope treatments are, we read the abstracts. Our support network throughout Canada...it's not so much that we're doing things like yoga. We don't really have the luxury of just being stroked. We are out there hunting for research, reading research, learning about research, and then we discover that what's happening over here is absolutely wonderful. What's happening in Sweden or Germany with a certain type of scan, say, the gallium scan, is wonderful.
In my case, I'm a patient with what's known as an undiscovered primary tumour. I was discovered with distant metastasis 10 years ago. I go through imaging. When I go through imaging, the imaging is okay, but it's not that great. It can't find my primary tumour. It might find 80% of primary tumours. If I lived in Sweden, it would find 99%; it most likely would find my primary tumour. The current thinking is that it's good to have your primary tumour removed. It offers a better prognosis for the future, but if you can't find the primary tumour, then that chance of having an improved prognosis is much reduced. I'm just basically walking around thinking, so far, so good, but wouldn't it be nice to know some of the uncertainty could be taken out of that?
Meanwhile, our community has created a worldwide network. I'm on a steering committee called the Worldwide NET Cancer Awareness Day Steering Committee, and we have representatives from about 15 countries on that committee. We met in Berlin, we're meeting in New York, and we're going to have Worldwide NET Cancer Awareness Day on November 10.
A website is going to be unveiled next month with basically information from patients around the world, so we will be able to read what is happening in every country with regard to this cancer and how patients are faring and what's happening in the medical world, what developments are occurring.
Our particular neuroendocrine site will be connected to that and discussions will be going across borders all the time. At my last meeting I sat next to the representative from Poland, so I learned about what was available in Poland, first-hand.