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37 year old desperately trying to save bladder

11 years 4 months ago #12246 by bjmac
Hi Sol

I had 10 years of 3/6/12 monthly checks after having BC diagnosed and two courses of BCG - with no side effects - in the last year before I had the RC. When I was first diagnosed I was not offered the BCG treatments (I don't think they knew about it then). When I was in hospital for my last check before my RC I spoke to some other urology patients who were just being diagnosed and they were then given a BCG dose at their first check. I don't know if this would have changed things for me but often wondered if I had been able to have BCG earlier it may have got rid of the cancer.

The reasons given to me to have the RC were to proceed before the cancer invaded the bladder wall.

I have had a lot of help from this forum and wish I had found it earlier. I would have liked to have used it to help make my decisions - not that I am unhappy with the way things have gone now.

As someone else said - everyone is different - and the disease can also affect everyone in a different way - but lots of us have survived!!

Good luck

BJ

Good luck

I am much older than you, and female, and my advice to you would be to get as fit as you can.

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11 years 4 months ago #12245 by Sol
Deb,

Thanks for the info although not the kind of story I wanted to hear but it’s still important to know that the bladder sparing option is a dangerous route.

How old was your father?

What does RC stand for?

Where did it spread to?

Thanks for having me in your prayers.

Sincerely,
Sol,

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11 years 4 months ago #12241 by driscolls
Sol,
Be very dilligent with this disease, no matter what your age is. My father was diagnosed with high grade CIS in 2004 and chose the bladder-sparing approach. He was started on BCG, but couldn't tolerate the side effects. From there, Mitomycin-C was the next treatment and he tolerated that well. However, the cancer came back and had started to invade the muscle wall so a RC was done in Septmeber 2005. Making a long story short, it had spread so fast and he died 11 months after his bladder was removed. EVERY case is different - we know people with exact same diagnosis who are doing fine five years later and beyond - but I can't help but think if we had immediately removed the bladder that he may still be here today. Do your homework and follow your instincts and know that you will be in my prayers every day! Debi

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11 years 4 months ago #12240 by Sol
Hi Julie,

How is your husband doing now?

This is unbelievable, being free of this disease for 7 years and then have metastic BC now must be very tuff.

How many BCG treatments did he have?
What’s your course of action now? Is he going for a neo?
Be strong and with god’s help he will make this thru.

Sincerely,
Sol,

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11 years 4 months ago #12231 by Julie
Sol, I think one of the hardest things to get used to it the need to have your bladder checked every 3 to 6 months and then the wait for the results. My husband had CIS diagnosed in 2001 and had BCG and most of the biopsies since then were inflammation but his year CIS was found in his upper tract.
Even with frequent cystoscopies and scans and cytologies he now has metastatic bladder cancer. We had read that the recidivism rate for CIS was 70% but one always hopes they will be in the 30% that have no recurrences.

Volunteer Coordinator
ABLSC

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11 years 4 months ago #12176 by wsilberstein

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.

Dear Sol,
My storyboard contribution can be found at http://blcforum.com/smf/index.php/topic,985.msg6053.html#msg6053 , but I'm not sure it will add any insights. I'm actually a fairly recent member to this forum even though my history goes back more than 7 years. I was fairly ignorant about bladder cancer and have learned a great deal from this forum.
I didn't opt for Mitiomycin C. My urologist chose it and said he had had the best success with it. His personal and professional experience not withstanding, a valid scientific study requires a lot more patients than one physician's experience. BCG was, and still remains, the standard of care. Before I agreed to the Mitomycin path, I did discuss it with a urological oncologist from Harvard who agreed to the treatment. I don't know if his advice would be the same today, but it's nice to know that Mitomycin is an option. My urologist is equally pleased that BCG remains an option for me should the need arise.

-Warren
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...

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