4 years with a neobladder - Happy, but Confused

13 years 10 months ago #32418 by kcnorthstar
Replied by kcnorthstar on topic 4 years with a neobladder - Happy, but Confused
No I do not take aspirin. The only drugs I take are hydrochlorothiazide for blood pressure and Previcid for acid reflux. I know its blood and last year they checked and there were taces of blood in my urine. It always clears up only to return months later. All the tests I have done show NED.
My last kidney scan came up clear. I am scheduled for another scan in September. I would think that if this is something serious,that it would show up on a scan by now. I will talk to the doctor about it again, but nothing has been found in the past. The doctor does not seem to have an answer.

KC

Age 59
DX Jan 2006 - T1B G3
RC - Neobladder June 2006

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13 years 10 months ago #32416 by mmc
KC,

Congratulations on the 4 year mark!
Glad that you continue to do well.

I'm at the 1 year 8 months mark and I have't had any blood.

Mike

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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13 years 10 months ago - 13 years 10 months ago #32414 by Patricia
kc..just wondering if you're on a daily regimen of aspirin? or anything else that will thin the blood...Vitamin E included.???
And was it determined that it was indeed blood? Some foods like Beets can make it look like blood.
Kidneys OK?
Have not heard of blood 4 yrs out....immediately after yes...unless it involved the urethra, kidney or infection???
another mystery!!
pat

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13 years 10 months ago #32410 by kcnorthstar
First the good news. Last week I passed the 4 year mark for my neobladder. My life with a neo has been great. I am really no different now than when I had a real bladder. I remain just as active and feel very lucky that things turned out this good.
There is one thing though that bothers me. I ocasinally have a small amount of blood in my urine. This happens about every 4 to 6 months. This has been happening the past 4 years since I got the neo. I have passed all my tests and checkups and one time last year I went staight to the uro when this happened and got tested and ct scanned. Everything checked out OK. My uro did a cysto and said that my neo looked "a little pinkish and irritated"
he said the blood may be comming from the neo itself because intestines have lots of blood vessels and it just may be irritated. I was tested for infection and that came up negative.
(I have never had a urinary tract infection since getting a neo)
My latest 6 months tests and scans all came out OK. Has anyone else experienced anthing like this??

KC

Age 59
DX Jan 2006 - T1B G3
RC - Neobladder June 2006

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