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Newly Diagnosed, just after prostate cancer

4 years 1 month ago #51699 by GeorgeWG
Thanks Sara Anne.

I know the BCG treatments are life- saving, and I realize it's not extremely toxic, I will get used to the idea (I've had one treatment so far). It's just the first time coming home and using the bleach and other precautions made me feel a bit worried especially because I am incontinent and have to be careful not to leak outside of the toilet :)

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4 years 1 month ago #51698 by GeorgeWG
Purrkat, yes my doctor is a urologist who specializes is urologic cancer. He belongs to a urologic group and did the robotic prostatectomy.

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4 years 1 month ago #51697 by sara.anne
Hello, George, and welcome! You do have a lot facing you right now. As for having prostate and then bladder cancer, I don't think it is that unusual, except that they are usually discovered the other way around; someone is diagnosed with bladder cancer and then, during the workup or surgery, prostate cancer is also found. As you probably know, prostate cancer is very common and it is often said that if a man lives long enough he will have it.

BCG can be life-saving for CIS, as you have probably read. And, as far as "germs" go, it is pretty benign. BCG is a MODIFIED tuberculosis bacterium which was developed many many years ago as a tuberculosis vaccine that would be safe for children. Of course it was used in very small amounts as an inoculation at that time. We are so fortunate to have it available.

And, just a minor correction on Purrkat's post....CIS is more like a rash on the bladder lining than a solid tumor; it can't be completely removed by a TURB. It is always high grade, and something like BCG is needed to get rid of it.

Good luck to you

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: GeorgeWG

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4 years 1 month ago #51696 by purrrkat
Hi George,

Nice to meet you, sorry for the circumstances!

First off, I should clarify that I myself do not have bladder cancer, but I am a "bladder patient" (I've got an inflammatory condition and recently had a benign tumor removed via TURBT). I'm sure more seasoned experts will chime in, but I have some opinions/questions:

1. Did you have a TURBT to remove the CIS prior to starting th BCG treatments?

2. I absolutely believe you should seek a second opinion from a major teaching hospital. I think this for a couple of reasons: 1). This is YOUR life, and you only get one chance to get it right. Having had 2 different cancers in such a short period of time, as you said, I think warrants further investigation by a team, which is generally how they do it in teaching hospitals. It may just confirm that the treatment you are getting and have gotten to date is completely appropriate, but if I were in your position, I'd want that confirmation. And 2). The incontinence. This is a serious quality-of-life issue and if I were you I would want to make sure there wasn't more that could be done about that.

All this being said, it's great that you have a doctor (I assume it's a urologist?) who you like. There is no reason why you can't stick with this doctor and still seek a second opinion.

Best of luck and keep us posted.

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4 years 1 month ago - 4 years 1 month ago #51695 by GeorgeWG
Hello everyone,

I have been reading the posts here, and I wanted to join. I guess my case would be somewhat unusual; last June (2015) I had a prostatectomy after being diagnosed with prostate cancer. I never regained continence, so in June of this year (2016), my doctor did a urodynamics test and a cystoscopy. Well, he found bladder cancer (CIS). I am having BCG therapy but it's tricky because I am still completely incontinent, but my doctor has me stay at his office with a cunningham clamp on and it seems to work (I've had one treatment so far). The BCG treatments scare me, as my wife and I are mildly germaphobic :) But, we're managing.

I never got a second opinion (I like my doctor), except for the fact that my doctor sends the pathology reports to Johns Hopkins for a second opinion of those.

My wife and I are a little scared and freaked out at me getting two cancers within a year. Should I be seeking care or an opinion at Sloan Kettering or a cancer center?

(I live in NJ, and as I said I like my doctor, and I trust him).

GeorgeWG

68 years old.
Non-smoker
other than CSI bladder and having had a radical prostatecomy, in good health (haha).

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