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Beginning BCG

4 years 10 months ago #49202 by sara.anne
Martin, here is a link to our Glossary of Terms..

http://bladdercancersupport.org/bladder-cancer-help/resources/glossary-of-terms#Transitional%20cell%20carcinoma

It is "hidden" under the HELP tab at the top of our home page. Will answer a lot
of your questions!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 10 months ago #49201 by MadLove
Hello. TURBT stands for trans urethral resection of a bladder tumor. It's the "scraping" procedure. Sometimes the acronym TURB is used.

-MadLove

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...
The following user(s) said Thank You: Martin47

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4 years 10 months ago #49200 by Martin47
Dear Bardcode, I am probably in the same situation as your husband is, I had eight BCG treatments and I am scheduled to have a biopsy in the hospital next month. I'd like to know what all your acronyms mean you used: "TURBT" and all the others I cannot find your email just now. Martin47

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4 years 10 months ago #49195 by MadLove
Hi, Lindalou,

My 52 year old husband completed the initial 6 week BCG series in July 2015 at Johns Hopkins for CIS. He received the treatments in an exam room by an amazing nurse who was assigned to his case. We got to know her very well and the care was excellent. If there had been any concerns, the doctor was available.

Hopkins is a 2 hour one way drive from home. Our routine was to leave Hopkins after the BCG instillation and start driving home. We discovered a new restaurant that became our regular place to eat and pit stop.

Since we were not home before the 2 hours were up, my husband carried a urinal in a discreet bag. He would void in that and carry it back home to dispose of in the toilet and allow for the bleach contact time.

He was able to not void for the 2 hour interval each time.

There was some discomfort due to the catheterization, from thinking about it the day before and literally during the procedure and a day after. He did have some fatigue in week 3 but it was not repeated.

He had a follow-up TURB recently and the biopsy report was "benign". He's scheduled for a three week maintenance series of BCG to begin in late September 2015.

Best wishes to you as you begin BCG!

-MadLove

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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4 years 10 months ago #49192 by OldEngineer
Lindalou - this is more a question for someone who is very knowledge like Sara Anne, but I think it is fair to ask the doctor what concentration he or she is using for the BCG treatment. From what I have read, there is some literature suggesting that lower concentrations than "normal" (around 1/3 of normal) may have almost the same therapeutic effect as the full concentration with much less risk of side effects. I mention this because I am going to start BCG treatment in a few weeks (my TURBT was a week ago, have cystoscopy in two weeks and another TURBT the following week, then the BCG treatment begin after I have healed from that) and I intend to research this further myself. I am making a secondary appointment with an oncologist at Memorial Sloan Kettering (I live in NJ not too far from NY City) to get fully educated on this. Needless to say - best of luck to you, hope everything goes smoothly!

T1 high grade transcell diagnosed 8/14/2015
TURBT 8/21/2015, removed tumor (17mmX14mmX11mm)
Repeat TURBT performed 9/25/2015
Pathology Report: no residual cancer detected
BCG planned starting in October

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4 years 10 months ago #49190 by sara.anne
Yes, BCG is given in the doctor's office. The whole thing takes about 15 minutes.
Mine was administered by a specially trained nurse. Assume you are female...it is not a big deal. The guys are a little more uncomfortable with catheters placed in the bladder!!!

I drove home (20-30 minutes) each time. There is a bit of difference of opinion on the necessity of "rolling." Many reports state that it is not necessary. But hey....if you like to roll over once and a while it won't hurt!

You are supposed to "hold it" for two hours....or, as my nurse told me, as long as I could up to 2 hours. Once I started to "go" it was very frequent...about like when you used to have cramps. You may pee a bit of bloody tissue (bladder lining reacting, as it should, to the BCG.) The next day I always felt a bit of fatigue.

It is very do-able

Good luck

Sara Anne

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

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