BCG maintenance or periodic cystoscopy?

Posted by quahog @quahog, Aug 24 7:34am

This is an update on my issues with BCG maintenance. My original diagnosis with a single small (2 cm) high grade NMIBC was successfully treated with Turbt and six BCG treatments. Cystoscopy showed no new growths and biopsies showed no CIS. My Urologist urged BCG maintenance to decrease the chance of a recurrence and I agreed to the 3, 6 and 12 month maintenance program. Unfortunately I had become very sensitive to the treatments toward the end of the first six and the maintenance program increased my sensitivity to the point that the side effects had become extremely difficult and more so after each instillation. Flu like symptoms, urgency, burning, abdominal pain, bleeding, nausea, fatigue, etc., lasting several days. Cystoscopy after the three month treatment showed NED and after discussion I'm thinking to stop the maintenance program and instead opt for cystoscopy at three months, then every six months. What do you think? Right choice or should I reconsider the BCG maintenance program?
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chebo1954 | @chebo1954 | Sep 3 1:27pm

In reply to @pegpal "Please explain what NED means....?" + (show)

Well pegpal as I did not use the acronym NED in any location of my comment I’m uncertain of why you would ask me what the acronym means. However, I suspect you already know what it means so what puzzles me is why did you ask me to explain it to you?

pegpal | @pegpal | Sep 3 1:42pm

In reply to @quahog "No Evidence of Disease" + (show)

THANK YOU!

jaxfl | @jaxfl | Sep 3 2:22pm

An echo or CT scan or even PET scan may not catch a recurrence that is tiny but visible through a cystoscopy. Especially a blue light cystoscopy for CIS.

quahog | @quahog | Sep 3 2:26pm

In reply to @chebo1954 "Well pegpal as I did not use the acronym NED in any location of my comment..." + (show)

I think that comment was for me. I used NED in my initial post

chebo1954 | @chebo1954 | Sep 3 6:43pm

In reply to @quahog "I think that comment was for me. I used NED in my initial post" + (show)

Apologies quahog, I can see now where I mistook pegpal’s comment was directed towards me. This site as wonderful as it is can often mislead or confuse exactly what direction it is coming from, if in fact that makes any sense. At any rate I meant no disrespect towards anyone, but for the record I learned something new as I’ve never encountered that particular acronym before, and as a lifelong student of medical science that is refreshing to know. Kinda reminds me of my early training when the acronym TLC was used and of course everyone knew the instruction meant tender loving care but I playfully injected “oh, I know what that means- total lung capacity, right?” Just my way as without a certain amount of humor I would not have been able to survive what I’ve been through and probably will go through. Peace and sincere wishes to all of us who have been demonized by this terrible disease!! For those offended please forgive?!

quahog | @quahog | Sep 3 9:29pm

In reply to @chebo1954 "Apologies quahog, I can see now where I mistook pegpal’s comment was directed towards me. This..." + (show)

No problem, the site can be a bit cryptic.
I’m still at sixes and nines on continuing the BCG maintenance or going to periodic cystos. My urologist thinks I’m ok with cystos only but keeps showing stats that indicate a better long term outcome with BCG maintenance. The kicker is my increasing intolerance to BCG, even at 50% dosage.

talltxlady | @talltxlady | Sep 4 6:53am

In reply to @chebo1954 "Well pegpal as I did not use the acronym NED in any location of my comment..." + (show)

Loosen up a bit @chebo1954 !! We're all in this together and here for help and answers. No need to be ugly...

chebo1954 | @chebo1954 | Sep 4 9:10am

In reply to @talltxlady "Loosen up a bit @chebo1954 !! We're all in this together and here for help and..." + (show)

I’m loose as a goose in St Louis. A tendency toward sarcasm but ugly is a bit of a stretch, but I certainly can agree with you on the nature of this site but I will definitely not tip toe with my comments as I am unaware that anyone going through what we all are going through would have such a fragility concerning an honest comment that actually concerned another individual who corrected me with a kindness and understanding of who we were actually talking about. Yet I suppose all forums could use a self appointed referee! Is that loose enough for you?

chebo1954 | @chebo1954 | Sep 4 9:25am

In reply to @quahog "No problem, the site can be a bit cryptic. I’m still at sixes and nines on..." + (show)

Thank you for your understanding quahog as apparently some folks were taken aback by what I thought but that doesn’t change the way I am. I’m hopeful that you’ll find a resolution to what I can clearly see is a dilemma for you, but I always say and will continue to say, “everything gonna be alright!” You’re an intelligent individual plus many times I have personally noted that an answer will be forthcoming when you least expect it. All my prayers for you and a rapid resolution to your situation! Godspeed