Treatments other than Bladder Removal Surgery

13 years 2 months ago - 13 years 2 months ago #36136 by Drew
I had 18 months of BCG treatment, which seemed to be working, but in the end, the tumors grew right through the the last series of BCG maintenance treatments. Had a cystectomy and neobladder construction mid September 2010 at Mayo Clinic in Phoenix. While it hasn't been easy, I am getting better, and quality of life is improving. Will never be the same as pre-cancer, but given the alternative, absolutely wonderful.

Don't live in fear of bladder removal. There is life after cystectomy.

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13 years 2 months ago #35883 by motomike
Replied by motomike on topic Treatments other than Bladder Removal Surgery
After the radical (hate that word) surgery I had a number of tests and my surgeon declared me cancer free. While it certainly seems like a big step to remove the bladder and in my case also the prostate it really is worth it. It is nice to be free of the big C.

I'm 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010

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13 years 2 months ago - 13 years 2 months ago #35881 by BillM
I asked the same thing when my journey started.

Radical cystectomy seems to be the gold standard for the more aggressive cancers. There are procedures that are bladder sparing but the numbers for survival and qualty of life just don't stack up to RC in the long run. If your a good candidate health and age wise for RC and neobladder it could be your best option. Going by the statistics, RC w/neo was the treatment I chose so I could watch my kids grow up.

The consensus for RC, if you go this route, is to go for a doctor that does a lot of RC's a year, the outcomes are better. Talk to your doctor and don't be afraid to ask questions and never be afraid to ask for a 2nd or 3rd opinion.

Bill

5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
7.26.12 Final scans showed no tumor or no...

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13 years 2 months ago #35878 by sara.anne
Replied by sara.anne on topic Treatments other than Bladder Removal Surgery
CIS is considered "high grade" which means it has the potential to spread rather quickly, if it is not stopped. Bladder removal is a true "cure" if it has not spread. While of course it is not a pleasant experience, from what I have read here, it is life-saving. If I ever face what you are facing, I know that this would be the right/only way to go.

I am sure you will be getting advice from others on the list with more personal experience than I have. But I know they will advise you to get opinions from medical centers where there is real expertise in this.

Good luck to you...

Sara Anane

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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13 years 2 months ago #35870 by tonycapp
I was diagnosed with CIS Bladder Cancer in October 2010. Have had two courses of BCG and two biopsies since then. The form of CIS I have is rsistant to the BCG. My Uro has recommended bladder removal. I went for another consult at the Lahey Clinic and where removal of the bladder was also recommended. I had a number of tests to see if I could have a neobladder. I'm told that I'm a good candidate for that surgery. I'm scheduled to have the surgery in late February. Are there alternative treatments for CIS other than BCG or surgery?

Any inof is greatly appreciated.

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