Terrified in Toronto

[jon5]

Hello,
I’m in Toronto, Canada, recently had one episode of gross terminal hematuria. Referred to a urologist but refuses to see me till February as he’s fully booked.

I am extremely worried and do not want to wait 6 weeks for an initial consult 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 initial diagnostic testing. I will pay out of my own pocket.
Can anyone recommend a Centre of Excellence for bladder cancer? I am considering Chicago or the Cleveland Clinic, but am open to other cities too.
I notice the Cleveland Clinic is 4hrs by car, rated #2 in USA for Urology and has an office in downtown Toronto too!

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

3. For 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 (the bad rating I see for this specialist online is also not helping) 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. Should I just go by the MD ratings I see on google?

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. I am starting to get my affairs in order too. 🙁

Thanks for reading.

[Jack Moon]

Hi Jon
There are several top bladder cancer Urologists in the Toronto and GTA. I can assist you in locating one. There is really no to go to the USA. There are several top cancer centres in the Toronto area. I would recommend you arrange for an ultrasound through your family doctor.
We have all been in the position your are currently undergoing. You will need to have some patience as this is a step by step process. The 1st step is for an Urologist to see why you do have blood in your urine. Bladder cancer is not the only cause for this occurring. So the 1st step will be the doctor taking a look inside your bladder of which you may watch with him if you so desire. This process only takes a few minutes and is not painful but can be uncomfortable.
I wish you all the best,
Jack Moon

[jon5]

Hi Jack,
Thanks for the reply.
I have sent you a private message, and thanks for your kind words of encouragement.

[cheryl9]

Hello Jon

Been there and done that. Lots on this forum can say the same thing. My history includes 3 main surgeries, 2 minor, 6 main tumors, multiple superficial tumors and some of them were in the process of closing off urine flow from my left kidney, 21 BCG treatments, 5 unclear checkups and now 2 clear checkups. So, when I say “been there, done that”, I really mean it. It was blood in the urine that started the whole journey.

First of all, stop researching on the internet. The sites, including Canadian and American Cancer Societies will have your bladder gone next week and you dead the week after. This is just not true. All those sites will scare the daylights out of you. This site provides way more realistic information. Also check out the various threads on this forum to help you learn about what your future may be.

Jack can provide a lot of help also. Really strange that the uro won’t see you until February. This comment is based on my personal experience. Here in little Saskatchewan (pop. just over 1M), I had a cysto the first day I was available and surgery 10 days later. The uro’s office books whoever is available the soonest so the patient waits as little time as possible. I have had priority cystos booked within 4 days. If I was you, I would befinding out what experience my MD had with bladder cancer as this is one area that a surprising number of MDs are completely oblivious about. Then I would be pushing my MD to get an ultrasound done. This will identify if there is a mass and can indicate if it appears to be a malignancy. Then get Jack to help you get into a urologist sooner rather than later. As with any profession, there are good ones and bad ones. Jack will probably have an ear on about what ones are good.

After my initial diagnosis I ran out and updated my will, did a power of attorney and a living will. Looking back, not necessary but glad it is done. Everyone should have these three things done regardless of their state of health.

In the meantime Jon, stop swinging from the rafters. In addition to it being very lonely up there, it takes a tremendous amount of energy and time to stay up there. It just isn’t worth it in the end.

My best advice: take a deep breath, or two or three or however many it takes; cry; hug those you love; cry again; spend time with those you are close to; cry again but don’t get stuck there; then learn to laugh again. Once you can laugh again, you will start to heal.

Take care

[marysue]

Hi Jon!

Welcome to the site that no one wishes they had to belong to. I too, was terrified at first and quoting Cheryl swinging from the rafters. I second the others, stay in Canada – Toronto does have some of the top people in the country for this and as mentioned Jack can help with connections. As mentioned you won’t know if it is actually cancer until you have the necessary tests. Could it be even just a kidney stone or severe infection? I too, went a bit squirrelly with all the stuff on the internet. Doing Dr. Google isn’t a great idea even if you have some medical knowledge as lots of health issues have similar symptoms. It takes a medical professional (sometimes more than one) to diagnose and be able to tell you exactly what is wrong. Even if it does turn out to be bladder cancer try to be positive in the fact that 75-80% of the cases diagnosed are superficial meaning early stage and quite treatable. Hang in there, buddy. We are here for you. (((((HUGS))))

[jon5]

Hi All,
I’d like to Thank you for the kind words of support.

Its been a rough time and continues to be. I am a worrier by nature and this of-course takes the cake. I do realise I need to take it one step at a time. Its just difficult to do.

Reading online has only made my anxiety worse. Total panic is more like it. I’m sure you all have been there before.

I did visit the emerg initially and they ruled out an infection, they did the standard blood test and urine test and those were clear. They then did an Ultrasound and that came back clear too. They suggested I see a Uro and get my bladder checked. I wish they had done some more specific testing but they didn’t.

I did call the Cleveland Clinic in USA but I cannot afford their prices. So will stick with the Canadian system.

I’ll keep this updated as the weeks go by.

[Farm-Boy]

I too agree with the earlier posts. Stay in Canada as you will get good care.

I was like you in mid 2013 and really scared when I went into my family doctor after seeing some blood. The first urine test confirmed cancer and the doctor said I had a max of 6 months to live (he had worked in urology in Egypt and was now a family doctor here in Ottawa) and said it was important I see a urologist.

He said he had faxed out some referral requests.

I waited a week on pins on needles then went to Saskatchewan to see a doctor friend of mine in person. He said “get on the phone and call until you get a referral.

I went home and started calling. turned out only one of three faxes even went through. So I went back into my family doctor with about a month having past since I first noticed the blood. Together we called a urologist and he impressed upon the assistant the importance and I was then scheduled for a cystoscopy within 2 weeks.

I had three growths, one being large. I went through updating my will, spent a lot of time with each of my 4 sons doing something special with each one, and also went through my parents wills which as it turned out had not properly allowed for me passing away before them.

Through all of this my wife was upset that I was so worried and had immense faith in the healthcare system.

Did my surgery about 10 weeks after my first visit to the doctor to say I saw blood. Three tumours removed, 6 weeks of BCG, 2 full years of quarterly cystoscopies, two of which showed a worrisome red mark which subsequently faded away on its own, and now I am moving to 6 month check ups and doctor is confident I am free.

So, a lot of my worrying was for naught although there was no telling me that at the time !!!!

Good luck, and as others said, take time to enjoy the little things, a glass of wine and your family and have some faith that our modern medical system is very capable of fixing you. (and when reading all the fear-like stuff on the internet, remember that many of us have been through this and those were not our experiences)

[DDep]

Dear Jon5

I am sorry I did not notice your post earlier. I can understand that you are going through a tough time right now.

Some of what I write here is similar to what Jack Moon has written.

It is not clear from your post as to the cause of your gross hematuria. There can be a number of reasons that do not include Bladder Cancer (BC). Usually some confirmation of suspected BC will speed up a referral to a Urologist – such as an Ultrasound or urine cytology. I noted that both your urine test and Ultrasound (US) from a Hospital emergency were negative. The wait for the Urologist consult could be because they do not see a confirmation of BC either by US or urine.

I think you must have some confirmation of a tumor in your bladder – right now your urine and ultrasound were negative. Take heart in that there is no evidence at the moment.

For now my thoughts and personal advice is:
1) I think the Canadian medical system is a good one and there is no reason to go to the US at this stage.
2) Bladder Cancer is highly treatable
3) If the worry overwhelms you (individual symptoms include: indigestion, refuxing from stomach, fatigue, cannot sleep, can’t think clearly, night sweats etc.) go see your GP Doctor if you have any of the individual symptoms. In order to cope, I had to take some pills for a few weeks.
4) Take frequent walks; watch great comedy movies; spend time with and talk to friends and family about how you feel; do hobbies or work around the home that can give you a sense of immediate accomplishment/completion. Continue to live, because no amount of worry will change things. Life is what it is.
5) If you smoke, Stop Smoking
6) Take Vitamins A, D, E and Lactobacillus Casei daily.
7) Think Positive thoughts. Surround yourself in a positive atmosphere. There is very much to be hopeful for.
8) Don’t Spend too much time on the Internet speculating. It is a dark “Rabbit Hole” that creates more questions.

So, the bottom line. Are you sure you have BC? There are many reasons for Gross Hematuria that do not include BC. Example, Certain excessive excersize can do it. Don’t get ahead of the facts. However, if it is confirmed later as BC – you will have to wait for your Pathology report. Remember that the odds are in your favor. If it is BC – it is highly treatable.

May God Bless

DDep

[mr.claude]

Hi Jon,

I recommend what Jack has mentioned. Have you considered looking in nearby cities like London or Windsor? Just a thought. In the meantime, keep positive thoughts and like DDep mentioned, stay away from too much research online.

Claude

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