Wait times for TURBT in Ontario (GTA)

[VinceA]

Hello everyone,

Found a lot of extremely valuable information on this forum, thank you guys.
Here is my story – on Aug 24th my cystoscopy revealed a tumor in my bladder, and my urologist told me that the TURBT will follow soon. For the next 20 days nobody contacted me, and when I finally reached the office I was told that the procedure hasn’t been scheduled and they even can’t give me a time when this is going to happen.

I feel that this situation isn’t normal and this uncertainty makes me more and more anxious with every day passing. What are my options here? Should I just inquire my urologist office again until they give me a date? In case if the delay is caused by the local hospital (Mississauga) does it make sense to try to switch to a bigger one in Toronto (and how long will it take)? Please share your recent experience if you were in a similar situation.

Any suggestions would be greatly appreciated.

 

[marysue]

Hi VinceA:

Welcome to Bladder Cancer Canada but sorry that you have need of us.  I live in Calgary, Alberta.  Back in 2008 when I was at the start of my journey it was a similar scary scenario.  When I was at my very first cysto and my then uro and I saw the tumours on the monitor, he told me that I’d have to come back for surgery to have them removed.  When I asked when the surgery might be, I was horrified at his answer.  He said, “I think that you can wait the usual time.”  When I asked how long that would be he said, “We are fully booked for the summer.  It will be sometime in the fall.”  Since this was early July I freaked out that I’d be potentially waiting months and the fact that I had absolutely no idea when the surgery would be, like you my stress levels were through the roof.

About a week after the worst of the shock wore off I decided that I couldn’t live with the unknown so I phoned my uro’s office and asked for an office appointment because I had a lot of questions.  BCC wasn’t up and running yet so there was really no place to go to for information.  I didn’t know how to use the computer very well yet so I didn’t know that I could have done some Google searches.  I was given an appointment for the next week and I sat down with him and got my questions answered.  I also told him of the great mental stress that I was under due to the unknown of not knowing when my surgery date would be.  He responded by telling me that I was on his urgent list and he was hoping for early September which would make it an 8 week wait.  If he had responded even with this answer at the cysto exam, I would have felt at least a little bit better because it would have confirmed that I was in the queue.  I don’t know if sitting down with him made a difference to the scheduling but I did get a call the next week that I’d be going in for September 5th which was just under 6 weeks away.  Not great but at least I had a date.

I went to my family doctor to get some information about potentially going out of province or even out of the country for the surgery to see if I could get it done sooner but costs and all the uncertainty with that made me change my mind.

I’m currently waiting for my 3rd TURBT.  I’ve had a recurrence after 12 years of being clear. When the current tumour was discovered at my September 8th cysto and my new current uro told me I’d have to come back for surgery I asked how long the wait would be fully expecting it to be another 6-8 week wait making it around early November, he replied that I wouldn’t be waiting long and that his office assistant would be in touch on Monday or Tuesday of the following week with a date.  Sure enough, she called Monday afternoon telling me that my surgery was booked for October 4th just under a month from the cysto check.  I was floored but extremely grateful.  This response has made all the difference.

I would call your uro’s office to see if you can get an in person appointment or at the very least speak to you uro on the phone to try to get a better understanding of when your surgery might be and emphasize the mental stress that you are under.  Whether this situation of yours is like my first and second ones and are/were due to staff disorganization or not we can’t say, but there is no excuse for keeping you totally in the dark and under this level of mental stress.  The proper timeline for TURBTs is generally within 4-6 weeks max from the time the tumours are discovered. It would definitely not hurt to ask if it could be done sooner at another hospital maybe in the GTA.

Don’t be afraid to get ballsy but keep your cool and don’t get nasty with staff.  Be polite but firm.  You have the right to get answers so that you can be proactive with your health.  Best Wishes.  (((HUGS)))

 

[Nightingale]

Hi VinceA,

MarySue’s suggest is a good one.  Supports what I’ve indicated to you when we corresponded privately.

My best,

[VinceA]

Thanks a lot for your very detailed answers,
I was thinking along the same lines, but was a bit hesitant – to annoy your doctor is the last thing you want to do when your health is at stake. I will try to follow your “to be polite but firm” advice and talk to my Uro. I will keep you updated…
Really appreciate your help.

[marysue]

Hi VinceA:

No worries.  As mentioned, I totally get where you are coming from having been down a similar road.  My first uro did get annoyed at the office meeting with all my questions but I stood my ground and quietly reminded him that bladder cancer was an everyday thing for him but for me, I had not even heard of it until I was diagnosed.  I told him the reason that I was asking questions was because I wanted to be an educated patient and that was part of the reason for my stress level being as high as it was due to the fear of the unknown, not only of what the future held regarding a surgery date, but not understanding the disease itself and what was involved.  I needed to get an understanding of the process and what was coming so that I could be proactive about my health.  Once he understood this, his attitude softened some.  For some reason he interpreted my asking questions as a judgement of him as a doctor.  Nothing could have been further from the truth.  When he finally got the message that this was about me and not him, conversations got a little better.

It is not “bothering” the doctor to ask him/her.  It is a patient’s right to be able to get answers and a health care provider’s duty to provide answers to the best of their ability.

I’m a need to know the whole scenario person.  Some people function better on learning the facts a little bit at a time, but I like the whole enchilada.  Having the context and the big picture of a situation relieves a lot of mental stress for me.  You might be the same way so hopefully once you get some sense of when the surgery might happen and some more knowledge about bladder cancer it will help at least some in lessening your stress.

Best wishes making that call and please keep us in the loop.  (((HUGS)))

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