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First Treatment Today

11 years 8 months ago #16462 by sara.anne
Slabman, I will have no. 5 tomorrow. So far absolutely no somatic problems...even feel better than I did before. Only result has been several hours of discomfort afterward...burning, have to pee every five minutes....but that doesn't last.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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11 years 8 months ago #16454 by slabman
I can't believe this. Did #3 yesterday and today I feel great! No aches/pains, etc. A touch of nausea, but no biggie. I did hedge a bit by taking some Tylenol both before and after this treatment and it helped a lot.

Bob
T1 G3
Age 66
DX April 2008
TURB April 2008
Last BCG (#15) April 2009

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11 years 8 months ago #16123 by wendy

Hi Wendy. The reason for the 4 week cycto follow up was because it was already 4 months since my initial surgery. The good news was that the cytology and FISH tests were negative for cancer cells. A biopsy showed some atypical cells that the pathology report indicated fall short of a dx of CIS/severe dysplasia. As I may need to have a stent put in because of a ureter being blocked either by scar tissue or inflammation from the BCG, my doctor is going to do another biopsy this time a little deaper to be on the safe side. Visually he could not see any recurrence. I appreciate your insight to everyone's questions. I will then have 3 more BCG treatments.
Thanks Joe


Hi Joe,

This makes perfect sense from what I have read and heard over years of listening to BCG warriors. Getting the 3 maintenance treatments is recommended now in all guidelines for high grade or T1, or Cis. A good biopsy is essential- to be safe.

Sorry about the blockage in the ureter, and I hope it goes away with no trouble. Not visualizing any recurrence is very good!

Where are you going for treatment? Some cancer centers in the US are trialing 'photodynamic diagnosis', where the uro inserts a fluorescent dye in the bladder, lets it sit, following which the cancer much better visualized than with regular cystoscopy using white light can. If you can get access to this new tool (phase III trials, approved in Europesince '05) I'd say go for it!
http://blcwebcafe.org/content/view/93/103/lang,english/
Wishing you all the best,
Wendy

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11 years 8 months ago #16112 by Joey
Hi Wendy. The reason for the 4 week cycto follow up was because it was already 4 months since my initial surgery. The good news was that the cytology and FISH tests were negative for cancer cells. A biopsy showed some atypical cells that the pathology report indicated fall short of a dx of CIS/severe dysplasia. As I may need to have a stent put in because of a ureter being blocked either by scar tissue or inflammation from the BCG, my doctor is going to do another biopsy this time a little deaper to be on the safe side. Visually he could not see any recurrence. I appreciate your insight to everyone's questions. I will then have 3 more BCG treatments.

Thanks Joe

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11 years 8 months ago #16109 by slabman
Right-on, Gina. The thought of all those "entries" is very disconcerting to me. My plumbing is still not right 4 weeks after my cysto. The Doc calls it "a little scar tissue", but I call it abrasive damage to the urethra. These guys are always down-playing things, it seems.

Bob
T1 G3
Age 66
DX April 2008
TURB April 2008
Last BCG (#15) April 2009

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11 years 8 months ago #16107 by wendy

thanks joe!...i hope that's what they do for me...they said something about checking every 3 months...so i hope they don't wait that long!!! it's been almost 3 months since my turb...we'll see..next week is my last bcg!! yippeee!! take care,gina


Hi Gina,

But...it takes a while for the BCG to do its work. Although looking at 4 wks can be interesting, there might still be tumor left, giving the false impression that BCG isn't working, while in fact it takes about 3 months to have the full effect and can even be working up to six months later! It's hard to know what is best, protocols often differ, doctor preference can run the show but patient's preference is also extremely important. Insurance may be an aspect, perhaps that is one reason follow ups differ sometimes. If a person can pay cash, they can get any test they want!

I'm glad you're finished next week, and I hope you can arrange for the follow up that feels best to you. But cystoscopy is an invasive procedure you don't wanna do unless really needed. Experts complain that it's overused, brings risk over the long term (complications such as urethral strictures and damage to the bladder etc), but that patients demand it. Sure...for our own sanity!

We need more reliable non invasive follow up tests, that's for sure.
I wish you much success with BCG.
Wendy

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