How do you cope with the wait?

[Ph4ntomas]

*** Edit: somehow, my post was previously cut…***

Hello there,

I have some chronic back and neck pain, so when I was in excruciating lower back pain, a couple weeks back, I just figured that I threw my back…

Massage therapy did not help at all, neither did the chiro and finally had to make a visit to urgent care for some relief. A bag of taradol later, it was “pee in a cup” time since they suspected kidney stones. Tests came back clean for the stones but doc told me there was a lot of blood in there. Ultrasound was next, which found a benign cyst on a kidney, but nothing else.

Got to follow up with my doc last week and he wanted to run his own tests. Urinalysis again showing a lot of blood. Doc tells me he is gonna run some more tests: if there is something growing, it is an infection and if not, he suspects bladder cancer.

Finally got a call back today (been somewhat worried…) and got the results: no viral or bacterial infection. Doc is gonna see me tomorrow evening to discuss next steps.

My question are:
What is the next step? What kind of test? How long does it usually take to get the results back?

And… How did you deal with the anxiety of waiting for the results? I am gonna ask to up my anxiety medication, but not sure that will do…

Bottom line, any info on what to expect next?

Thanks

[marysue]

Hi Ph4thomas:

Welcome to Bladder Cancer Canada. Hopefully you won’t have bladder cancer but if so, we can help.

To answer your question, I need to ask – have you been dealing with just your family doctor or is this a urologist that is running tests?

The usual route for most of us when our family physicians suspect a more serious urological issue is to be referred to a urologist. A urologist in addition to doing urine tests may order a CT or some other type of scan but the most common exam is the cystoscopy exam. This is an exam where you are given a local freezing in the urethra and the urologist uses the cystoscope which is a catheter sized instrument with a mini camera on the end and inserts it up the urethra into the bladder. By doing this he (and you if the monitor is at the right angle) will be able to view the inside of your bladder to see if any tumours or other things are present. Bladder tumours do bleed out. Sometimes the blood is very visible to the naked eye, other times it is microscopic and picked up by a urinalysis.

If tumours are present, the usual next step is to have surgery to remove the tumours so they can be staged and graded by a pathologist to determine a) if they are indeed malignant (most are) and b) if so, what stage and grade the cancer is.

The “stage” of cancer means how far progressed it is and “grade” means how aggressive. It usually takes 1-2 weeks post op to get those results back and next steps from there can be as simple as “watch and wait” with follow up cystoscopy exams to having more surgery depending on the diagnosis.

Anxiety with this, especially at the beginning is for most of us the hardest part of the journey. Many of us just try to keep busy and take time to do some of the things that we enjoy. For example when I was waiting for my surgery date to have the tumours removed, my hubby took me out of town for a few days. It was a really short trip but the distraction took it all away for a while.

I hope this information helps. Let us know if you have more questions. (((HUGS)))

[Jack Moon]

Hi Ph4ntomas

Your doctor may order an ultra-sound to check you kidneys and bladder. If he/she is suspicious of a growth in the area, then you will be referred to an Urologist. Waiting for results and appointments can be stressful, I just tried to keep busy and stay positive when I was going through what you are now.
All the best,
Jack

[cheryl9]

Hell Ph4ntomas

Waiting is way worse than just about anything. Even if the news is bad at least you then know what you are up against and can start taking action.

After three surgeries, I know a thing or two about the stress.

First of all, don’t stress about the cystoscopy description. It isn’t freaky and we have all been there. Lots. Enough that you can call us old pros at it. And we can still pee normal.

My proverbial best advice:

1. Get down from the rafters. Swinging from the rafters takes too much time, energy and resources. Besides, you will end up with a lot of bumps and bruises from banging your head on the rafters. Not to mention the slivers from swinging.

2. Take a deep breath, two, three, four, five or however many it takes; cry as needed; hug those you love; cry more if needed; spend time with those you love; find something to laugh about; and then you will start to heal.

In the meantime, there are lots of resources on this site that you can read. Stay away from researching on the internet. That will terrify you. The info on this site is way more realistic.

Of course, that big cancer scare is really scary. Just remember, if it is cancer, you get to go on the attack and the free-wheeling party those cancer cells have been having in your bladder will come to an end. If you work with visuals, visualize yourself punching out those dastardly little things.

There is really something absolutely wonderful about knowing that, after surgery, you may actually be cancer free.

Take care
Cheryl

[Ph4ntomas]

Well now, I am waiting to get a call from my urologist…

When I asked my doc if we were already talking about cancer he said no… Could be a small stone or little infection he missed… But honestly, who would miss a stone when ultrasound and blood work both returned negative… and who would miss infection when both the blood work and cytology returned negative as well…

And the gross hematuria is ongoing…

I just hope that I get to see the urologist quick… or I may look into passing the cystoscopy at a private clinic…

[Ruth]

Hi Ph4

Just read your message and please believe me when I say the folks here really know what they say. Ive been where you are since last November. I, too, am from London and found the professionals at the hospital sure know how to handle the situation. My TURBT was completed about 3 months from first noticing blood in the urine and ultra sound. My results were low grade non-invasive thank god. I found that reading on this forum what the terms and procedures mean helped immensely especially so I can get my questions ready when meeting with my doctor as well as the urologist.

Please keep us all updated on your progress. Know that we are here to help anyway we can.

Big hug

[Val]

So sorry to hear. We’ve all done the waiting game and it isn’t easy.

You’ve been given great advice by others that I will echo. And I’m thrilled you’ve been referred to a urologist – sometimes the family doctor doesn’t refer until months later.

I hope that you don’t have bladder cancer but if you do, Bladder Cancer Canada is a God-send. People know what you are experiencing – we’ve either been there or have had a loved one go thru it. It was the best thing for me – to talk to others who had been on the same journey ahead of me.

Come back regularly, ask questions. Keep us informed.

[Ph4ntomas]

Hi,

Thank you everyone for the good information!!

Ruth, may I ask how long it took for you to get your 1st appointment? (you can PM me if you prefer) I have previous experience with the urology department at St-Joseph and back then, it took 8 months for the initial consultation, before even speaking of tests, which took an additional 2-3 weeks to schedule, then a 2-3 weeks to get the results, …

So, I understand that a cystoscopy is the 1st step… I have a good benefits plan where I can have diagnostic imaging done ahead of time and the results sent to my doctor… I’ll see if this is one of the imaging service they perform…

[Ph4ntomas]

Hi…

Sorry if I keep bugging people… Not only this is kind of stressful but I am also dealing with huge amounts of stress at my job…

Is the “normal” process to be referred to an urologist 1st?

Because following up with my specialist, I just found out that I was referred to an oncologist directly rather than an urologist…

This kinds of tells me that they already know what’s going on and not telling me :/

Thanks

[Jack Moon]

Normally you would be referred to a Urologist first. Many Urologists are Urologist/Oncologist. So you may have been referred to a Urologist/Oncologist.
If you give me who you have been referred to, ie the doctors name I can let you know whether they are a Urologist/Oncologist or if they are a Medical Oncologist. Private message me if you wish.
All the best,
Jack

[Ruth]

Morning Ph4
I sent you a private message since we both live in London and perhaps will be dealing with the same Urologist/Oncologist.

Hoping for positive results for you. Please keep us posted.

Big Hugs

[Suzanne]

Hi Ph4,
When my doctor referred me, she just put the name and number of the clinic on the prescription with “gross hematuria”, and when I called I was given a name, and it happened that he was an urologist/oncologist. I, too, got worried and wondered, but he said “it could be a stone or inflammation, but even if we find nothing I will follow you up for at least 2 years”. I thought this was a huge relief and a great advantage. Do keep us posted!
Suzanne

[Ph4ntomas]

Well…

Since my last time here… Another ultrasound, urine sample, blood tests, cytology… and a biopsy of a kidney cyst that had been found…

Now waiting for my cystoscopy in the next few minutes… I’m such a ball of nerve

…

…

…

Well, I’m happy, but at a loss…
1. The pathology and cytology were negatives
2. Ultrasound is negative
2. Cytoscopy today was clean
3. My prostate looks good as are my psA levels
4. Tests for glomerulonephritis (my dad has it)are negative

So Good news… I don’t have cancer!!! Yay!!! but.. after 5 Urine Samples, all the Drs keep telling me that I have a LOT of blood in my urine every time…

Where do I go from there?

[Author]

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