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New Terrified and From Canada

2 years 11 months ago #50245 by sara.anne
Hi Jack! And Jon!

Sorry I had to delete your personal contact information, Jack. Our liability requirements don't allow posting it publicly.
Jon, if you post your questions for Jack on the Canadian site, Jack can reply to you there....

Best wishes to you both

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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2 years 11 months ago - 2 years 11 months ago #50242 by Moonerj
Hi Jon

I am from the Toronto area and I co-founded Bladder Cancer Canada in 2009.
www.bladdercancercanada.org
I can assist you with your questions, just go to Bladder Cancer Canada site (link above) join the discussion forum.
All the best,
Jack

TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007
The following user(s) said Thank You: CatherineH

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2 years 11 months ago #50241 by jon5
Hello,
I'm in Toronto, Canada, who recently had one episode of gross terminal hematuria. Referred to a urologist but he won't see me till February as he's fully booked.

Due to the Canadian system I am stuck as you need a referal to see specialists and it seems urologists are very rare up here.

I am extremely worried and do not want to wait 6 weeks to see a specialist and then who knows how long after that to get some diagnostic tests. It could easily take well into April or longer.

This is really affecting my quality of life, I can hardly sleep or eat from the stress and worry.

Questions:
1. I am considering going to the USA to see a urologist and get some diagnostic testing. I do not have insurance so will pay out of my own pocket. Can anyone recommend a Centre of Excellence for bladder cancer? Ideally affiliated to a large university. (I am considering Chicago, but am open to other cities which are within a 3-4 hour flying time from Toronto). I am not even sure if the US centers would take private paying Canadian patients for diagnostic consultation & testing?

2. Any particular urologist at the above Centers of Excellence that come highly recommended?

3. Any idea on costs for cystoscopy and CT Scan with dye? And generally how long it takes after seeing a specialist to get these tests done?

4. For any Canadians - are there any Centers of Excellence in Toronto or Hospitals that are good for urology? I am not happy with how my referral has been handled thus far and am looking to get referred to another specialist (ideally affiliated to a hospital) but have no idea which specialist would be the one to see.

5. Are there any diagnostic tests that I should book myself for at a private clinic in the US immediately (e.g Pelvic MRI, CT Scan etc) or should I wait to see a urologist first?

Please do give me your advice and help, I am feeling most desperate and low at the moment.

I don't know which way to turn and the more research I do online the more scared I am getting.

Thanks for reading.

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