37 year old desperately trying to save bladder

13 years 4 months ago #12151 by Sol
Hello everyone....

This is my first post. I have wanted to do this for a long time but was too overwhelmed with my diagnosis and couldn’t get myself to write. I did read alot of your posts and it helped me a great deal. So now is the time to collect myself and reciprocate. I hope my experience will help others in my situation.

I am 37 years old and was diagnosed with non invasive bladder cancer back in May 2007. It was explained to me as having CIS and some high grade superficial tumors. The larger tumor was removed in July, and for the small flat tumors we decided to go for BCG treatments.

I completed the initial 6 week BCG treatments with little side effects and was told to wait 6 weeks before doing a cystoscopy. The cystoscopy was done in October 2007. The bladder looked great except for some scar tissue at the area where the tumor resection was done. No sign of any tumors. I was also sent for a CT scan and everything looked great. I thanked god that I had a very good response to the initial BCG treatments.

I had another Urine Cytology, CT scan, and Cysto completed last week and was shocked to hear that there are some new areas that have a slight redness.

My doctor didn't want to take any chances so today he performed a Biopsy with re-scraping of the surface that had new redness.

My doc didn’t say for sure that this is a reoccurrence. He is taking every precaution that he possibly can, in case it is cancer.

So now I am sitting here and hoping to god that this is not a reoccurrence.

I am still weak from today’s procedure, will post additional correspondence with the great Dr. Lamn at a later time.


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13 years 4 months ago #12152 by timb
you have to wait for the path to come back which is obviously pretty nerve wracking. you remind me a lot of myself as I had a similar diagnosis - superficial high grade BC and concomitant cis. also im not a lot older than you. I was 29 when first diagnosed and am 44 now. I eventually went for an elective neo which is probably not very encouraging for you to hear but after absorbing all the stats (which no doubt you have) on refractory (bcg resistant) cis I decided that, for me, it was the safer option. If you do ever go down that road it's a well trodden path, you have age on your side and you'll bounce right back up again. That said, I was also ready to gussy up, take my vits, improve my diet and mind and take the BCG as far as I could before getting to bladder removal. wait for the path. BCG can also cause red areas that are ulceration and inflammation. I had several scares like this during my year and a half of BCG and they turned out to be nothing at all.

all the best


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13 years 4 months ago #12153 by Sol
Thanks Tim for your response,

Yes, even though I hear that you went for elective neo its encouraging hearing that you are here with us and hopefully healthy with no side effects from the neo surgery. I will wait for the results of the path and hopefully the redness is a result from the BCG treatments. How long after you were diagnosed did you do the Neo?

Even though I know some facts I don’t know everything and would be very curious to know the facts that you have so I can determine what was your main deciding factor to go for the neo rather then staying with your bladder? What "refractory (bcg resistant) cis" you mentioned in your reply?

Thanks for your time.


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13 years 4 months ago #12154 by wsilberstein
Replied by wsilberstein on topic 37 year old desperately trying to save bladder
Dear Sol,
I also had superficial high grade (TaG3) plus CIS. My urologist opted for Mytomycin C instead of BCG. Over the past 7 years I have had numerous instances of red areas. My biopsies have always been negative.

TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014

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13 years 4 months ago #12158 by Sol
Hi Wsilberstein,

Wow........This is incredible. That is why this forum is so powerful. Being clean for 7 years with negative biopsies gives me alot of strength and courage, that with gods help I will make this thru.

Did you opt for Mitomycin because BCG can’t do the same?

Do you have a write up of your history somewhere on this forum on these 7 years? I am sure there is alot of informative information that I can benefit from.

Thanks again for your 2-line response that will make a huge difference for me going forward


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13 years 4 months ago #12168 by timb
My initial diagnosis was about 14 years before I went with the neo. Id had many recurrences in that time but only high grade and CIS in the last two years. I guess there was a marked progression. I reasoned that if I was going to have to have the op then I wanted to have it when it had the best possible chance of providing a cure. The problem and main headache for me wth this disease is that its a total gamble. you have to read all the info and somehow arrive at a conclusion with which you feel happy. it isn't easy! there are some people who have adopted a conservative approach and succumbed to invasive disease and then, as the above post demonstrates, others for whom it is working out. I hope that it works out for you.


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