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CIS: What are the facts and opinions?

12 years 11 months ago #2590 by pweization
Mike and Tim,
Those are both really good posts and I appreciate them. You know, i guess I was just looking to hear a bunch of miracle patients chime in and say that they had similar diagnosis to mine and still have their bladders after one round of BCG after 20 years.
I know the reality of the situation and I'm trying to prepare for that decision but at the same time clinging to the hope that my bladder may be spared.
What are the most difficult aspects of the cystectomy?
How long before you return to work?
What do you do for work?
Can you run, ride a bike, lift weights, or swim?
Is walking around comfortably normal?
Do protective garments show through clothing?
Any details would be of great help to me. Please don't worry about scaring me or telling me what i want to hear. I'd rather get it straight and it seems like you guys are the right people to talk to.
Thanks so much for the advice and sharing your experiences with me...I really do need guidance through this.
-Vin

34 yr old male
diagnosed 10/13/06
T1G3 CIS

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12 years 11 months ago #2586 by timb
Worth bearing in mind that BCG isn't a free ride either. There are numerous possible side effects and unknowns. I was generally more frequent when I was on the BCG and felt run down a lot of the time. I still had to go for cystoscopies between BCG courses and, in the end, it wasn't stopping the CIS. It may for you. As I said before, for me I figured it was odds on that I was going to eventually lose my bladder and I decided that it was best to lose it when the surgery had a better cure potential. I'll never know whether I made a bad call so now I'm focused on living with my decision. And its a good life. Better than I expected in many many ways.

The BCG did however buy me time to get around to the decision to have the bladder removed. I found that really helped get my head ready for it. I was also able to start amassing the support that has been so valuable; telling friends, making financial arrangements, finding out about supplies I would need, gathering information about bladder removal etc.

My doc, was pretty grim about the CIS when it kept recurring post BCG. He said to me that I could be one of the lucky ones but I could also be dead by 50 (i'm 43). I had a grade 3 tumour, stage ta with CIS after 14 years of grade 2 multifocal disease (maybe 40 or so tumours over the years).Almost all the material I read (and I probably read far too much!) backed up what he said about BCG-resistant CIS. I think I had one grade 2 recurrence after the first maintenance BCG dose and then the CIS came back and I decided to throw the towel in.

So, in a nutshell, I gave the BCG a whirl but prepped myself for probable bladder removal but with the glimmer of hope that it may not come to that. I also gave myself a strict rule that if the CIS recurred after BCG, then I would look at it matter-of-factly and go with the cystectomy. And that's what eventually happened.

If BCG fails to stop your CIS then there are other treatments available; interferon, radiation (my doc told me this was not advisable) and there are chemotherapeutic washes etc(I'm in the UK btw). But if it keeps coming back, I personally wouldn't hang around too long).

All the best

Tim

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12 years 11 months ago #2563 by mikmckna
Pwe...
You are a young person and as my Uro said to me... 5 year survival rates are great for someone on their 60's and 70's but you may consider longer term results.

I had 5 tumors, T1, G3 with CIS. While BCG was an option for me, I opted for the cysectomy w/ neo bladder. I am not about to say it's been a walk in the park but I feel very comfortable that it was best for me. No matter what, you will always be concerned about a new tumor showing up somwhere BUT I never again have to worry about a bladder tumor popping up and suddenly it's T2 or T3 and spreading to other parts of my body.

I can deal with the challenges of my new bladder but the worry over new tumors would have been too stressful for me. I can honestly say after 3 months I am very happy!

Believe in yourself,
Mike
T1-G3, CIS
RC w/ Neobladder 8/22/06

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12 years 11 months ago #2483 by wendy
In cancerland a cure often means 5 years disease free survival. BCG can give that and more. I've only been around 'bladder cancerland' for 8 years. I don't know a lot of people who have got that far out from BCG, like 20 yrs with no recur, to say they are cured. Most people seem to recur.

If you want to get as much info as you can glean on the subject of risk of recurrence and progression, see this:
EORTC Risk Tables for Predicting Recurrence and Progression in Individual Patients with Stage Ta T1 Bladder Cancer
http://www.eortc.be/tools/bladdercalculator/default.htm

Europe has more definitive guidelines out there than the US. There are many references to published guidelines on WebCafe, under both superficial and invasive blc.

Cheers,
Wendy
PS don't drive yourself insane. Like some wise man told you, let the BCG do its stuff.

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12 years 11 months ago #2481 by pweization
Wendy (and anybody else who cares to throw in .02),

Is there any chance of having BCG treatment cure multiple T1G3 w/CIS? Are there cases of people with that diagnosis that actually get to keep their bladders? I'm just trying to get a feeling for some of the choices I'm going to be faced with here in the near future. Give it to me straight...I can take it.
If the concern is that some others may not be able to take it, please PM me.

34 yr old male
diagnosed 10/13/06
T1G3 CIS

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12 years 11 months ago #2479 by wendy
Hey Vin,

CIS won't go away without treatment. With treatment I think it's around 50-50, which in my opinion are decent odds (at least compared to a lot of other cancers). {{{no, wait, I need to modify that...up to 80% of CIS responds to BCG}}}

Tumors or CIS, hmm. There are so many types of tumors it's mind boggling. You have to know the specifics of the tumor to say if it is as dangerous or less dangerous than CIS. It's temptimg to generalise and say CIS is worse to have, but sessile tumors (crater-like) and rare cell types can be just as dangerous.

Papillary tumors are mostly low grade, non aggressive tumors that do not progress or invade.

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