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Cancer,BCG & me

12 years 8 months ago #6856 by timb
I was just thinking that the other day Zach. Challenging and life-changing though the cytectomy has been, I'm on a much more stable footing and living a better life since I had it. For me, it seems ironic now that I was using the BCG to stave off what I thought was going to be a much worse situation. In my particular case, the BCG definitely held me in a mindset characterised by uncertainty and fear. But, then again, it gave me valuable time to get my head around my situation and, as a person with a bladder, gave me the hope that I may hang on to it. Which was good. I'm sure glad not to be having the quarterly treatment anymore though.

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12 years 8 months ago #6843 by Zachary
Henry Kissinger once said--and I'm paraphrasing--that a lack of options brings a remarkable clarity. That certainly seems to be the case in this situation, at least as far as superficial versus invasive BC.

I can't tell you how relieved I am not to have to make the decisions you folks are faced with. BCGs, TURBs, Mitomycin (I don't even know what it is), constant vigilance... I never thought I'd be grateful to have a "worse" stage of cancer, but ironically, I am.

Zach (who is wishing you all the best)

"Standing on my Head"---my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein

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12 years 8 months ago #6840 by wendy
Rosie, what I meant to say is that there is discussion about modifying the follow up for those whose original dx was Ta, G1, single, smallish tumor. I've read things saying that for those who don't recur after 2 or 3 yrs that it may be ok to go to 5 yrs between follow up. Scary, I know. But it could save those at extremely low risk unnecessary cytsos.

My sister says the yearly cystos are making her stress incontinent, but even though she's been cancer free for about 7 yrs and no more Ta,G1 recurs, she is not too keen on the idea of going more than a year or two at most.

Wendy

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12 years 8 months ago #6839 by Rosie
Wendy you said: Well, phew, Rosie, you are a pioneer, I have not met anyone else brave enough to 'watch and wait' with a low grade papillary, but have read the reports about the safety of this, and heard experts discussing it at conferences. It's a valid approach with science to back it up. I hope it pans out well for you and others who may qualify.

I am not particuarly brave nor pioneering but I think acted logically in my situation.
The reason I did watchful waiting was not only because it was low grade but also because I did not have a choice of just having it cauterized due to the threat of scarring and blocking the ureter orifice, and there was never a complete resection with a TURB for the same reason. I was in a catch 22 situation. This time, I decided to try the laser removal which is supposed to give clearer margins without threatening scarring. There were no indications that I needed to have it done at this time but I felt I might as well have that done rather than just another 4 month cystoscopy check up. Could you clarify the 5 year question. I don't understand what you are referring to. Thanks, Rosie

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12 years 8 months ago #6833 by Rosemary
After all the back and forth here about Mitomycin C and my Urology Clinic discontinuing usage, I would very much like to get the detailed skinny about this issue from the Docs. Right now, the answers that I get from them seem very vague.

I do know this... If my cancer returns, you can bet that I will go out of town to get my dosage of Mitomycin after TUR.

Evidently, in my case, it has already done some good. At least, I see it that way.

Best regards,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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12 years 8 months ago #6827 by wendy

Thanks for the http://www.eortc.be/tools/bladdercalculator/default.htm
sight. I had not seen that before. I also read the complete write up on about Dr. Lamm's protocol on webcafe and was surprised to see that even in 1999 he was treating a solitary papillary tumor that appears low grade with one instillation of a chemo agent shortly after resection.


Yes, that's true and now I wonder just how long this approach goes back. I also have references from Lamm raising questions about the long term *risks* of intravesical chemo, also a reality. The new guidelines are now advocating intravesical chemo for every TUR (unless there is suspicion of perforation or very deep resection done). It reduces recurrences and that saves money and reduces patient morbidity. I suppose the balance is between the side effects of repeated TURs against risk of side effects from the treatment.

I think I'm glad my sister never received intravesical chemo after her dx of Ta, G1 in '98, or after her recur, because that was the end of it. She's been clean since with no treatment. But...if she had been recurring as often as you, or so many others I know, I suppose I would looked on more as a blessing and forget about the possible (not probable) risks.

I have now set a laser date for removal of the papillary tumor we have been watching for a year and a half. This time by laser and probably a chemo instillation shortly afterward. I have set it for September 19th. I am ready to learn and possibly tell others of a way to avoid recurrences and a safe way to get good margins without the threat of scarring and closing off the ureter orifice if the bladder tumor, is like mine, close to the ureter. http://blcwebcafe.org/drlammsprotocol.asp Rosie


Well, phew, Rosie, you are a pioneer, I have not met anyone else brave enough to 'watch and wait' with a low grade papillary, but have read the reports about the safety of this, and heard experts discussing it at conferences. It's a valid approach with science to back it up. I hope it pans out well for you and others who may qualify.

As for using the laser, I've seen so many have good long term results in your setting (single, recurrent low grade papillary tumors)I am sure it will soon be in the guidelines as a recommended and safe approach.

BTW, have you noticed lately how articles on the subject of non-invasive, TA, low grade papillary tumors that do not recur after X amount of time can have follow up cystos extended to 5 years?

All the best to you!
Wendy

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