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Cancer: Bladder Message Board
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Old 02-02-2013, 02:17 AM   #1
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Angry frightening letter from consultant

Haven't posted in a while. I am a 64 yr old male living in London.
Here's my latest issue. I have had lower left abdominal pain for a couple of months now which goes down to my groin and sometimes round to my back. At first this was diagnosed as IBS as I had constipation. Given laxatives which cleared the constipation but the pain stayed. Then the doctor suggested kidney stone, took a urine sample and found microscopic evidence of blood in urine. Went for a simple Xray and they saw two small 'densities', suggesting the existence of kidney stones, and suggested a CT scan. Was referred last week to a consultant urologist who was very thorough and kind, but he said it didn't sound like kidney stones to him as the pain wasn't extreme and it had been going on for so long. I have a CT scan booked for next week, and also a more detailed urine test - a 'urine cytology' test it's called, where I guess they look for more than just blood.
Then yesterday I got a letter. It was a copy of a letter that the consultant had written to my doctor. It was startlingly honest in its diagnosis. Main point was the last paragraph which said that because of my history of smoking I may have a 'urotherial tumor'. I know what that is. It's bladder cancer. He also said that he may arrange a 'flexible cystoscopy'. I know what that is too. It's when they stick a tube up your penis to see what's going on and maybe take biopsies.
Naturally I'm scared as hell. I see him again Monday week.
What interests me most is WHY he copied me in on such a frightening letter. Is it to prepare me for the worst, or maybe to terrify me into stopping smoking?
As an inveterate googler of symptoms and outlooks for illnesses I know that the prognosis for bladder cancer isn't good.
I haven't lost weight, I don't feel unwell - except for the pain, which doesn't stop me sleeping, and which tends to go away when I lie down, and gets worse during the day. The worst is driving. I notice it hurts more when I hit a bump in the road.
Any thoughts welcome.

 
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Old 02-04-2013, 09:31 PM   #2
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Re: frightening letter from consultant

Actually, bladder cancer is, in many cases, highly curable. Depends on the stage and grade.

The best course of action now is to have that cystoscopy asap so they can see what's going on. Hopefully, even if it is cancer, they've caught it early enough to do some simple surgery and be done with it.

As for why he copied you on the letter...well, I'd be darned upset if I WASN'T copied...it's my body, and my feeling is that I should know everything that's going on. But then, I'm not much of a worrier. My philosophy is that worry is NOT preparation!

Ruth

 
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Old 02-04-2013, 09:34 PM   #3
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Re: frightening letter from consultant

Actually, bladder cancer is, in many cases, highly curable. Depends on the stage and grade.

The best course of action now is to have that cystoscopy asap so they can see what's going on. Hopefully, even if it is cancer, they've caught it early enough to do some simple surgery and be done with it.

As for why he copied you on the letter...well, I'd be darned upset if I WASN'T copied...it's my body, and my feeling is that I should know everything that's going on. But then, I'm not much of a worrier. My philosophy is that worry is NOT preparation!

Let us know what happens Monday.

Ruth

 
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Old 02-13-2013, 10:50 AM   #4
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Re: frightening letter from consultant

Pleased and relieved to report that the CT scan came up with nothing but a slight thickening in the left lower ureter and 'some nodularity just below the left ureteric orifice'. The urine cytology test was negative - which means no scary cancer cells, and also no blood any more. The urologist thinks the pain may be a residual effect of a kidney stone having passed without my noticing it, as there was no stone on the scan. He does recommend he take a closer look through a cystoscopy but doesn't think there's any great urgency and will perform it under general anaesthetic in about a month, IF my insurance will pay for it - they're getting back to me on that one. So I guess I'm pretty much okay. Thanks Ruth for your interest and concern.

 
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Old 02-14-2013, 10:32 AM   #5
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Re: frightening letter from consultant

EXCELLENT news, Mr. Hypo...congratulations!

Ruth

 
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Old 03-10-2013, 06:17 PM   #6
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Re: frightening letter from consultant

So far so good, Mr Hypo.

I've had bladder cancer, and am now 7 years past the last tumor. I've had two TURBs (trans-urethal resection - bladder) under general anesthetic. After 7 years clear, now I simply have a cystoscopy plus cytology yearly as a check.

If I were you, I'd insist on a cystoscopy. Even cytology can miss a tumor, and nothing beats actual inspection of the bladder lining.

 
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Old 03-15-2013, 08:20 PM   #7
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Re: frightening letter from consultant

That's an excellent point, Fizzickle. Even when they took out my bladder tumor (early stage...Ta), the cytology still came back as negative.

So, Mr. Hypo, I agree that a cystoscopy is definitely in order. They're really not that bad, and it's well worth it to make sure there's nothing there.

Ruth

 
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