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Newly with bladder cis

5 years 4 months ago #46235 by GKLINE
Hello

Welcome to "The Club"
Sorry have you here.

This is the "flow Chart" line to bladder cancer cure.
The Dr. will "scope" your bladder. Then he will do a TURB operation and remove any tumor. He will send this to a pathology lab to determine if it is cancer.
They diagnose you with bladder cancer through pathology.

If the cells are positive for cancer the Dr will do a second TURB to remove another layer of cells and have them sent to the lab.
If these cells are cancer free...... You are happy. And cancer free.
To keep you c free, you will find the protocol is BCG and regular scope inspections (My words) Congratulations! But keep having the visits.

If, after the second TURB pathology, they find c cells (I hate even giving the c word any respect) You need to think about getting that bladder "OUTTA THERE!!!"

I hope you don't have to make the Radical Cystectomy decision. But... If you do have to........ Don't fall in love with your clunky old bladder.
I had a radical Cystectomy with nerve sparing procedure. Almost 6 years ago.
It was tough at first.... Lots of leakage,(still get up at nite 3 times) Took a year to get an erection going again(nerve sparing) Have a nice scar to show at family gatherings (Don't do that)
But.... I am Alive! I would not be alive without it. I ski, play golf, and race a sports car(I'm a Champion. 2 years in a row) and I enjoy life to the fullest.

Get Good treatment at the Best bladder c hospital. Fight it aggressivly.
Don't let them "take their time" All it takes is one tiny cell to find it's way out of your bladder and into another part of your body.... And then you got real issues.

Lets hope your treatment is BCG treatments. You will be a lucky man indeed.

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]

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5 years 4 months ago #46230 by sara.anne
Welcome to a club you didn't want to join!!!

I just passed my 6-year exam with flying colors!! Was diagnosed with CIS in 2008 and underwent the complete BCG protocol...6 weeks of BCG once a week and then the maintenance doses every three weeks for a period of two years.

BCG is very effective, especially with CIS. When I started in on this journey, I also read the statistic that you mentioned, and I still do not quite know where it originated; I have seen others that are much more optimistic. My urologist strongly recommended BCG as the first line of defense; only if it failed would we go to bladder removal, and that has not been necessary.

Be sure that you are being seen by a urologist who specializes in bladder cancer, since many are mostly familiar with prostate problems and may not be up on the best and most recent advances in bladder cancer treatment.

Best of luck to you

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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5 years 4 months ago #46229 by raider
I'm a 52 year old male and just finished my 6th treatment of BCG. There is a 75% success rate for CIS with BCG, I believe the reoccurrence rate is about 50%. I wouldn't think about removing the bladder and I'm fairly certain that wouldn't be the advice from your Urologist. My symptoms before treatment were really bad, I could only hold 3.5 oz of urine and would void approx.. 22 times a day. I had really bad urethral pain and would get up 5-6 times a night so never got good rem sleep. Since treatment I have “NO” urethral pain and I’ve doubled the amount of urine that I can hold. I’m getting up no more then 2-3 times a night and I expect improvement on this as time goes on.

I highly recommend BCG as a first option for your treatment, ask as many questions as you can with your Urologist.

Good Luck & keep us posted!!
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