Just Diagnosed -- What Next?

Hi Jake,
I just signed on to the forum. I am awaiting a cysto/turbt on June 22nd as well.

My hematuria first occurred last summer. Very mild, and my doc ran some blood and urine tests. No sign of blood or other stuff. Gave me the ok, since the first occurred after a hard workout. I too am a cyclist. 54, and average 50-100 miles a week in good weather.

Second Hematuria occurred in Late Jan 2017. Went back to doc scared. He ordered more blood/urine test and complete ct scan. All clear again. ?

Last week had the third episode: this time chose ultrasound. They found 1.8 cm tumer on posterior wall. From my eye, the shape looks like invasive type....yes, I have self diagnosed...stoopid. and scared the shit out of myself and my wife. She told me to stay off of google, as did my RN Sister.

Anyway, so glad I found this forum some people who have walked this path. We are not alone. Now just anxious and scared about the turbt, etc., but this helps. Havent slept for 5 days, but hope to tonight since I now realize there is hope.

Also, If anyone reading this can suggest questions for the team, I could use some help. Dont want to miss anything.
Thanks in advance.

Thank you, everyone! Dtat60, my experience is similar to yours at least at the beginning. I ride bike, and noticed dark brown urine. Felt it was dehydration, drank fluid, it went away. However, after it reappeared 10 days later, with some dark flakes, I went to Dr. and got diagnosed. At first she thought it was a kidney stone, but I opted to have a cystoscopy done in her office at first visit and the tumor was found.

I appreciate all the encouragement. I'm a bit of a doom and gloomer and its been difficult waiting in this uncertainty. I still have two weeks to go.

Not being a doctor I can only relate my own personal experience but I didn't go to the Doctor until I saw blood in my urine (bright red). However, I had seen dark and very dark urine for months periodically. I would drink lots of water and it would disappear for while. I am a runner and was running/walking 8-10 miles a days everyday and just figured it was dehydration. I first went to my GP who figured it was a kidney stone - had a ultrasound which confirmed a non-obstructing 2CM kidney stone - and then was referred to a urologist. By that time 3-4 weeks had passed. I had a CT scan (with and without contrast) as part of my initial diagnosis. After first Cystoscopy the urologist suspected a low-grade papillary tumor but after the TURBT the pathology showed LG and 5% HG. I then had another TURBT (bluelight/Cysview) a few weeks later and this showed CIS. BTW - the kidney stone is pretty much a forgotten issue at this point.

My point is that in my case I ignored my initial signs (or rationalized why) for quite a while before my diagnosis. I would think that the earlier you find problem the better. You won't really know until you get your pathology. After reading this forum you will see that the "protocol" for treatment is pretty standard for everyone, of course with some variation. Good luck - you're on your way to beating this!

Hello Jake
I have been away from this site for a while and for that I am extremely sorry.
But I was exactly where you are....... Nine years ago! And I'm still here!
Yes it is normal to be scared. And looking at those statistics is only going to make it worse. Even it the odds are 99%
in your favor, you are sure that you are a 1%er. NOT!

You will survive! You will live a long time..... If you don't get hit by a bus this weekend.

If the "c" has not penetrated the bladder wall..... You are a lucky man indeed. But the Dr. will perform a TURB (Trans something) and then they will test that and do ANOTHER one! Just to see if they got it all.

And then you will be a survivor! For many years. Even if they have to remove your bladder (like me) You will be around to dance at your daughter wedding. I've had three wedding for my daughters since I had "c"

George

Thanks, Alan. I suspected as much but am seeing ghosts everywhere right now.

My TURB was scheduled for 3 weeks after initial diagnosis. Is that typical? Seems that they'd want to excise and biopsy asap after diagnosis? Isnt there a risk of spreading during that 3 weeks? Seems like a long time. Should I be worried.

Then again, to quote from the film "Bridge of Spies", whenever the Tom Hanks character asked Rudolf Abel if he was worried, Abel replied "Would it help?" I suppose it wouldn't.

Is there anything I should be doing the next two weeks? Second opinion? Research other Doctors? Continue to read horror stories on the internet?