Long term outcomes

Thanks for being frank Wendy.  Its just hard for me to figure out what to do.  I do realize that if I had my bladder/prostate removed there is a good chance I'd be cancer free at this point, however having a urinary diversion has a whole new set of problems, especially if I want to live another 50 years.  If it were a clear cut case i.e. multiple G3 tumors and CIS I'd probably consider going for the neobladder or pouch..

But as it is I had a solitary T1G3, 2cm, no evident CIS (and first 3-month cysto clear) - which according to the EORTC risk tables gives me a 5-year recurrance probability of 46% and a 5-year progression proabability of 17% (Probably even a little less now since I passed with a clear 3-month cysto). They have a handy calculator to figure out your 5-year risk profile here:

www.eortc.be/tools/bladdercalculator/default.htm

I was curious as to whether these statistics included BCG treatment for T1G3's and other higher grade tumors, so I bought a pdf copy of the associated EORTC report and determined that they did include BCG treatments as a standard of care, but BCG maintenance had not yet been implemented.  The authors surmise that  the overall statistics can be reduced an additional 15% for recurrance and 4% for progression (I wasn't sure how to apply this blanket statement or whether I buy the maintenance benefit claims).  The report had some interesting graphs on time to recurrence and time to progression stetching out 16 years which appear to indicate a real flattening of my specific progression risk at about 20% and reccurance risk at about 60% for a 16 year risk profile. (Not sure I believe the curve flattening as other studies I have seen show a somwhat continued increase in risk of progession and risk of recurrance)

So, as far as I understand from the EORTC risk tables I have a roughly 20% overall risk of progression, which probably translates into an overall 10% chance of death over the 16 year period.   If these odds are to be believed I think its a no-brainer to try a bladder sparing course of treatment versus bladder replacement.

However, that doesn't explain why I can't find anyone with an intact bladder 30, 20 or 15 years after a T1G3 bladder tumor.  I'm not sure I have read anyone's story that has made it for even 10 years?  Is it because the majority of people that get T1G3 are 70+ years old and pass away from something else before the tumor get them? Maybe.  You have known several younger people that had bad outcomes with bladder sparing..  I wonder did they have multiple tumors or co-contiminant CIS?  That would alter (up) their risk profile by quite a bit.  

Could it be due to the fact that if someone was diagnosed T1G3 10-20 years ago, it was pre-internet and they either died or have moved on with their life being cured before seeking out answers at the BLC Webcafe?

I'm pretty sure I know the source of the carcinogens which contaminated my bladder (chewing tobacco) which has been stopped, and I really want to have hope that there is a good (perspectively) chance for a "cure" as the graphs seem to indicate... But of course there don't seem to be many 25+ year studies..

So, I guess I have convinced myself that bladder sparing is warranted in my case.  Am I nuts?  Is there some basic fallacy in my logic I'm failing to see?  If you haven't figured it out already I am an engineer and get way too involved with numbers

>So, I know the docs have been using BCG for 10-20 years now, and that has improved long term progression/recurrance free survival for many. <

Hi Chris, It's actually going on 40 yrs since BCG was first used for bladder cancer. Weird to think there is still no universal protocol for it's scheduling, but there's a wealth of studies on its usefulness now.

>Myself, being in my mid-30's with a history now of agressive T1 disease (T1G3), I have sort of been wondering what the long-term implications fo having bladder cancer are for seomone my age. <<

I hate to be the bearer of worrisome tidings but feel I should tell you that younger people often have more aggressive cancers than what hits older people. My theory is that hormones come into play...probably because I had breast cancer at 43 that was hormone-fueled and the treatment was to induce menopause. I just think this could apply to other cancers, and to men as well. But I could be wrong, I'm not a medical professional.

>>I mean I wonder if I really have a chance at being cured? Or for someone my age is it just a matter of time before it catches up to me.. Is an eventual cystectomy unavoidable? Will my cancer progress or metastisize 5, 10 or 20 years down the line?<<

There are a wealth of studies showing that cystectomy gives the best option for total cure when the dx is high grade blc (invasive or not). In fact, the earlier the surgery is done, the better the long term survival stats get. There's some charts on this page, discussing risks:
blcwebcafe.org/cystectomy.asp#cystectomystats and there's a system that's been developed to evaluate risk factors for recurrence and progression:
"Markers of Recurrence and Progression:
blcwebcafe.org/synergoworkshop1.asp#witjes

>I don't know of any 30 or 40-year survivors with T1G3 bladder cancer. I mean I am sure that there were people in their 30's and 40's that had similar diagnosises to me back in 1965-1975. Are any of them still alive? Alive with their bladder? Any on the BC Webcafe forums? <<

After more than 7 yrs of hanging arounnd bladder cancer survivors (so to speak) I don't know of anyone who has survived a grade III dx that long while still preserving the bladder. I do know of people who've gotten cured and gone to live 30-40 yrs more, but they had undergone surgery. One died of old age, the other had upper tract spread that was treated with more and more surgery but finally got him, I'm sorry to say. He had tried to preserve his bladder as long as he could with BCG; finally gave in to surgery and got another ten or more years before the trouble began again for real.

30-40 yrs ago there were no options like a neobladder or Indiana pouch. These two techniques are changing the way bladder cancer is treated. I know more young men (early 40s...mid 30s is VERy young for this game, I'm sorry to say) who have had bladders removed as soon as invasion (T2>) was seen, and have passed the five yr mark cancer free. I've also met younger men who've had BCG to treat T1, G3 tumors and unfortunately have progression put them into stage IV overnight...once the prostate is invaded. The cancer is no longer curable then.

>I'd be really interested in hearing from anyone with G3 superficial cancer that has gone 20 years without a recurrance/progression..<

Whether the diagnosis is grade 1 or grade 3, it's highly unusual for bladder cancer NOT to recur, it's almost expected.

All the best to you, and please be very careful.
Wendy

Chris,
I still can't really answer your question. I guess I need to go to my three pathology reports and try to figure out what my grade is. Last week, Doc said high grade. I should be right in there with you really worrying about this. (Though, I think I really do think about it a lot...and worry, too)...

I remember my Doc telling me, when he first diagnosed me, to be careful about what I read on the internet...about worse case scenarios and everything.

I'm glad you quit the snuff or chewing tobacco or whatever it was, though.

Rosemary, thanks.. I think the majority of the people with superficial non-invasive bladder cancer find it more a nuisance than anything else.  Statistically I believe people with Ta and low grade bladder cancers have a very low risk of progression or ever dying from the disease.

I'm just real curious as to the long term outcomes for G3 superficial cancer..

Also, my local doctor (tho, not the prominent bladder cancer specialist),
told me that a tumor can come back after 20 years, but, the BCG's reduces that risk, and also, if it does come back, it is less likely to go as deep as it might have...

Hey Chris,
I don't know statistics, but I remember a friend about 25 years ago who had bladder cancer. He must have been about your age at the time, cause his kids
were about 12 and under.

When I got my bladder cancer, I remembered him, and I did a search in a state wide directory to see if he was still alive, and there he was, still in the same town, 25 years later.


Rose