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Its starting to sink in.

9 years 9 months ago #24509 by mmc
PS: I only had CIS, so I guess that's why I didn't know about the ultrasound tests. They always did CTs for me. Like Pat said though, CIS doesn't show up in much of any kind of scan. Mine showed up the second time in cytologies (tests done on the urine).

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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9 years 9 months ago #24508 by mmc
Britt,

It REALLY sounds like you need to get to a private hospital cancer center.
Also, 'prostrate' means to lay down; 'prostate' is the gland.

:)

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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9 years 9 months ago #24500 by britt
Patricia. When I originally went in to have the scope done due to passing blood clots they had to stop the test. When the probe hit the prostrate, I went thru the roof. I have had some serious pain episodees in the past but this was like having my heart ripped from chest. Ive never had a pain to compare it to. Asking questions on another post I find that they never gave me any kind of numbing jell or any other prep. the just inserted the probe. For that reason it had to be rescheduled with surgery and they did it under a general. Obviously I wasnt totally blocked as they were able to do the scope and also remove the cancer at the same time. Because of this, I asked the Dr if the next check up(every 90 days) could be done under normal circumstances? I was told that since it was done under general anethsia the first time it would be best to continue the same way.. Now that Ive been shuttled to the VA urology dept. They wanted me to come in just for a cysto as a follow up. I told them what the previos dr had said but could get no answers as I only spoke with a clerk who has no medical knowledge.
I see their ne Dr on Monday and hope to get some answers. I cant wait much longer as Im already past my 90 day window.

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9 years 9 months ago #24499 by Patricia
Wait for the pathology report.
If you just have to go in for what they call a cystoscopy you should not need any pre-testing.......just some numbing gel that they allow to actually work first and a urologist (not a nurse) that actually knows how to insert a flexible scope. You should not be given a general unless you are having a repeat TURB.
Take a breath.......and seriously consider a second opinion from The Cleveland Clinic.
Pat

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9 years 9 months ago #24494 by britt
It really started to hit home to me how serious this is. !st of all Ill have to go thru all the ore-surgical tests every 90 days as well as have to go under a general each time. Now Im reading about the meds and the side effects. Im already taking close to 40 pills a day and wonder how some of this will react with my daily meds.
Add to that the fact that for now it looks like I wont be able to be cathed unless they knock me out I wonder how thaey will treat this. I hope to have at least some answers on Monday. However, as Im dealing with the VA, Im going in with shields up.

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