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11 years 9 months ago #23972 by mmc
Best of luck with the treatments Steve. After the treatments, do not be any less vigilant. Keep up with the regular cystos.

One thing about this type of cancer is that if they catch it early, they can do something about it. Mine was CIS (kind of liquid cancer) and I had problems with BCG and mitomycin treatments. It wound up coming back after two years and pentrated the wall. For MANY people, it doesn't come back and the BCG teaches your body how to deal with it. Do your research on BCG protocals from Dr. Lamm and discuss it with your doc. If you have no problems with the treatment you may be in great shape. Lots of cystos in your future but that's not such a bad thing compared to the alternatives.

I mentioned that mine came back. Even if that happens, all is not lost. While my bladder was removed, they can now build you a new bladder from your intestine (so no rejection of the tissue). They can usually (they did in my case) hook the new bladder up to all the old plumbing so it is pretty close to normal again after a while. I would not suggest jumping to removal, but my point is really, even if it comes back you can still be cured.

When they removed my bladder, they took lots of lymph nodes and they were all clear. There was no spread so now that I have no bladder, I don't really have to worry about bladder cancer anymore.

I hope you only wind up needing BCG treatments and a watchful eye. Go back to your uro every 3 months and then every 6 months according to his/her instructions. You just want to make sure that you are on it quickly if it does wind up coming back. It often doesn't but I suggest erring on the side of caution.

Best of luck!

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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11 years 9 months ago #23899 by michstate89
Welcome Steve,

I found the same as you - thinking about the treatment worse than it is.

Good luck with this cancer thing.


Ross M
TaG1 March 06
Recurrence Jan 07
BCG Maintenance after 6 week treatment

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11 years 9 months ago #23778 by cljjlk
Hey Steve...welcome to our group. I echo the others that encourage to use this group not only as a support but to bounce questions and concerns off of the members. Everyone here has walked in your shoes to some degree or another. On a side note, I too am a Viet Nam vet and was in areas where defoliants were used. I don't remember ever being directly or indirectly exposed to the spray, but were in areas after the chemicals were used. I've had discussions with my urologist and he says there might be a correlation, but most likely the cause was from the years of smoking. At this point it really doesn't matter what the causative agent is, it is keeping a positive attitude and following your treatment plan. Keep that chin up and God's blessings. Chuck :cheer:

dx - Aug 2005
Five reoccurences (last 12/09 Ta high grade)
BCG Started 10/09 (2 6wk treatment)
BCG Maintenance started 4/10

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11 years 10 months ago #23672 by Patricia
Hi Steve.....found this....but when you have so many other cancers linked to Agent Orange it seems probable that bladder cancer might be one of them...Prostate and bladder pretty close proximity. Maybe this is just another one of those underreported things......that seems to happen a lot.

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11 years 10 months ago #23670 by stevegrimes14
Hey thanks to all of you for posting answers. I really appreciate it. First treatment down, anticipation was worse that reality. Ready for the next one.

I did a search for a correlation of bladder cancer and agent orange. There is one for prostate cancer, but none that I could find for bladder cancer. If anyone knows of a Viet Nam vet or anyone with info please let me know.

Thanks again to everyone for your answers and support.


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11 years 10 months ago #23618 by kathyk
Steve, I'm so glad you found this site. There are a whole lot of us here ready to answer questions, support you and cheer you on. And plenty of arms available to help you get a solid grip on this thing we all have. Good luck with your first BCG treatment. I've been there too.

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