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Clotting and how much can a bladder take…..

3 years 10 months ago #48119 by sara.anne
A radical cystectomy is the removal of the bladder. It is relatively serious surgery and there is a long recovery time, but if the cancer is caught before it has spread it is a real cure. But it is not something that anyone really WANTS to do.

Since your uro is retiring, and since you have had issues and lots of recurrences, this would be a great time to get a second opinion and use this to help you chose his replacement. I know that there are also good doctors at Mass General...our president, Cynthia Kinsella, is being treated there.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 10 months ago #48117 by slocapo
Believe me I have been thinking a lot of what I need to ask… do… or don't do.
I am getting a bit frustrated with my B&W Boston doctor… its just back and forth emails for answers… I heard he is retiring in June so I will be getting a new doctor then.

The doctor I had in Key West - very small hospital with big big hearts! Dr Fariss was wonderful very informative and stopped in all 4 days I was there as well as performed the cauterization.

I am very concerned as to why they keep coming back.. and yes have wondered if I have to do a next step… what is the procedure you mentioned? my guess is a pocket cathier…of some sort.

I am still in florida and quite frankly can't wait to get back to the cold north… It is home and always will be… end of the month can not come soon enough… no biking no golfing no lifting no stairs no swimming really just sit around so I do not clot again. I would never wish a manual plunging of clots to anyone!

5-12 TURB
5-13 TURB
11-13 TURB
1-14 BCG
7-14 TURB
8-14 BCG
12-14 TURB
1-15 Cauterized for clotting
2-15 Removal of Right Kidney and Lymph node

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3 years 10 months ago #48116 by sara.anne
You have really had some bad luck lately! You are a prime example of what is the "dirty little secret" of bladder cancer....IT TENDS TO COME BACK. I wasn't able to tell exactly from your list of TURBs exactly how many times it has come back, but I gather at least 3 times? And you have had BCG twice?

I really really hate to mention this, but has your urologist mention radical cystectomy? It is a very difficult decision to have to make, but if the tumors keep coming back it might be the best decision.

Wishing you the very best of luck

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 10 months ago #48115 by fighterm
Thanks for sharing this experience. I will have my first turb next week and now I know to be careful about exercises.

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.

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3 years 10 months ago #48114 by slocapo
I had my 5th… 5th TURB - surgery on Dec 23.. in Boston.. well let me back up.. my scope in Oct after my July TURB came back clear.. but middle of November my side back started to hurt a lot… ct scans.. no stones.. nope nothing… pee test.. no cancer cells present…. towards end of Nov early Dec.. I start to bleed..
Go easy… drink drink drink water…
hey… I am leaving on a month to Key West Dec 26th.. I need to know what is going on Boston!
Okay in for a scope - oh a little one maybe causing the bleeding… okay come in Dec 23rd for TURB #5
So I do… I go…. what I thought was easy for christmas.. and dec 28th I am in the local ER with massive clots and scared as hell!
They call Boston… get your fluids and rest….no Key West for about a week.
Well I drank the whole water company till I peed clear.. and headed south…
I played one round of golf on Jan 12th and rode my bike for a few days… 3 - to about 10 miles… a cruise bike mind you not a racing bike…
Jan 16th I wake up to peeing lots of blood and clots again..
I email Boston …. rest... get off the advil ( for the back pain) no bike no golf ...drink more water…
Midnight - I cannot pee and end up in ER with a flushing catheter. I cannot describe the clots! they pasted right around the catheter and were 8" or more curled up… At one point they had to manually PLUNGED them out of me…..I have never ever in my life felt pain like I did with that!

Well the 4th day they cauterized my bladder in 4 spots… and I went back to my vacation home…
How much can a little bladder take?? I am worn out and so afraid to even pick something up or even afraid to pee or look at it to see blood or clots….

5-12 TURB
5-13 TURB
11-13 TURB
1-14 BCG
7-14 TURB
8-14 BCG
12-14 TURB
1-15 Cauterized for clotting
2-15 Removal of Right Kidney and Lymph node

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