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Just Diagnosed -- What Next?

3 years 3 months ago #53610 by NotDoneHereYet
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.

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3 years 3 months ago #53540 by RJake1
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.

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3 years 3 months ago - 3 years 3 months ago #53533 by dtat60
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!

08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG

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3 years 3 months ago #53532 by GKLINE
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

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]
The following user(s) said Thank You: cltyxx

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3 years 3 months ago #53530 by sara.anne
I really don't know the answer to your question...but I doubt very much that it is because he thinks it is BAD. I often wonder why some urologist do the complete CT scan routine before they know exactly what the diagnosis is. but as Alan says this seems to be common. I am not an MD, but I do not like CT scans unless absolutely necessary. My urologist ordered it AFTER the TURB when we knew we were dealing with high grade bladder cancer. Then again every five years....AND we had a long discussion of the pros/cons of a procedure with high radiation exposure.

As for having to wait three weeks? If indeed you do have bladder cancer, it has probably been there for years. Three weeks is not going to make a difference, and this is truly relatively fast timing. Usually the doctors/operating rooms are booked up farther ahead than that. I believe I waited 8 weeks.

I am afraid that the only thing you SHOULD do during the next two weeks is try to relax (ha ha), read more escape novels, and stay away from the internet!!

You will do fine and your doctor is doing what she should.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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3 years 3 months ago #53528 by RJake1
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?

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