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Husband diagnosed in January 2015

3 years 9 months ago #48488 by the wife
Thanks DougG! I actually spoke to my husband's nurse today as we had to get the first BCG treatment scheduled, and she said they've had other patients with noninvasive high grade cancer who have not had to have their bladders removed after failed BCG treatment as they have a few other medications they can use that have worked. I think I must have misunderstood the Dr. on some level. I feel more confident now that it won't be the next step in this process. The BCG seems to be the logical first step for most people. If the Dr. says his bladder has to go after that, then we will seek another opinion first.

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3 years 9 months ago #48460 by DougG
I disagree with the statement "However, IF the BCG doesn't work, and the cancer returns, there usually is no option but to remove the bladder." Doug had the cancer return after BCG and then continued with the BCG. As long as the cancer is not invasive, the bladder need not be removed. Just my opinion. Doug was DX in 2001, has had 6 TURBTs, been through Mytamiacin and BCG. He has been cancer free for 6 years.

Best wishes,
Anita

Anita
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Caregiver
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3 years 9 months ago #48451 by the wife
Thank you Sara Anne. I am calmer today and can certainly see your point. I still hope my husband wants to get a second opinion just to be certain of his options, but I also know that he trusts his Dr. and there is comfort in that for him. I appreciate your reminding me that others have led full lives without a bladder; I think I am still just a bit in shock. My husband is only 45 years old; I worry about his quality of life but the important thing is that he has a life to live. He has a great attitude about all this...he's a tough guy. Lots of stories of amazingly strong people on this site. Thanks again and I'll keep reading. :)

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3 years 9 months ago #48450 by the wife
Aha. Okay, thank you for explaining that! I wish you the best of luck with your husband and his recovery!

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3 years 9 months ago #48441 by sara.anne
Since it is not clear that, at this stage, your husband would be facing bladder removal (the term is "cystectomy") the urologist no doubt thinks that it would not be in your best interest to discuss in detail things that probably have no bearing on his case. However, I know that you can't help wondering about it. Just let me say that there are many people here on this forum who have had this procedure done and are leading full lives. If you have to face this, which we trust that you won't, there is lots of information available.

The usual BCG treatment schedule is for a 6-week once a week series. This is then followed by maintenance treatments ...once a week for three weeks..every three months until two years have passed. This may be where you got the idea
that it is used multiple times. I think the urologist indicated that if the SERIES didn't work, cystectomy would be the best option. Sometimes, if the BCG series doesn't work, BCG plus interferon is tried.

However, IF the BCG doesn't work, and the cancer returns, there usually is no option but to remove the bladder. Your husband, however, is a long way from thinking about this remote possibility now.

Wishing you both the best of luck. He is fortunate to have you on his side!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 9 months ago #48436 by MadLove
Hello. My husband just had this done today. It stands for transurethral resection of the bladder. Sometimes its referred to as TURBT with the last T for tumor. The doctor inserted a scope while my husband was under general anesthia and removed suspect tissue for analysis. The pathology report should be available in a week.

Husband's journey:
01/2015 1st cystoscopy
03&04/2015 TURBTs-CIS
07/2015 Finished BCGx6
08/2015 biopsy-BENIGN!
10/2015 Finished BCGx3
12/2015 Cysto, redness
01/2016 TURBT, Benign
04/2016 Cysto
05/2016 Finished BCGx3
07&11/2016 Cysto's
1/2017 Finished BCGx3
2/2017 Cysto, redness
3/2017 TURBT, Cysto...
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