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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jaxfl | @jaxfl | Aug 24 10:59am

Why not alternative treatments including the latest and greatest time release local chemotherapy?

quahog | @quahog | Aug 24 12:42pm

The immunotherapy seems to have the best stats for preventing recurrence. Right now I’m NED so chemo is not a real option.

jaxfl | @jaxfl | Aug 25 7:59am

Depends on whether you are truly NED. Did you have blue light TURBTs and repeat cytologies?

talltxlady | @talltxlady | Aug 25 8:16am

No, they are not "comfortable ". There is nothing comfortable or easy about it, but I cannot imagine not doing what my doctor suggested. If I can make it through 3 years of it, you can too! Pull them boot straps up and trudge on!! You got this!! You're stronger than you think and loved more than you know. Do what you have to do is my suggestion. Three years will pass like the blink of an eye. Good luck and stay strong 💪✌️🙏

wifey9 | @wifey9 | Aug 25 1:19pm

After NED and cystoscopies following at 3 and 6 months, still NED, I am now waiting a year for next cystoscopy. Once clear, the Dr did not order any more BCG. I am anxiously waiting till Nov. 2025 for my next cystoscopy. My symptoms following BCG were never as severe as yours. But, personally, I prefer BCG to intravenous chemo and radiation required for other cancers. I had 2 TURBT in the hospital and 2 more removals in the office.; then 6 weeks BCG, then at least 2 more rounds (maybe 3) of 3 weeks each before being clear. I know recurrence is a large possibility, but I feel like the 3 then 6 then 12 month cystoscopies to monitor is adequate. There are other treatments available should you have a recurrence. Prayers that you stay NED and don't require any more treatments.

jaxfl | @jaxfl | Aug 25 3:46pm

It is very personal. So the oncologist/urologist should determine it on a case by case basis.

krgordon | @krgordon | Aug 27 9:50am

Diagnosed three yrs ago. I’ve had three major surgeries, cystoscopy every 3 months, lost count of the TURBT’s, 6 wks of BCG and had tumors after, 6 wks of GEM/DOC chemo with no tumors but CT showed a tumor outside my bladder where the left ureter was removed with the left kidney in 2023. About 10 wks ago had RC/Neo-bladder construction. I’m really tired but NED. The NED is so worth everything else. It is so important to have a doctor you trust. I did a lot of research to find my physician and then trusted him to make the best decisions for me and followed his recommendations. No regrets.

chebo1954 | @chebo1954 | Aug 27 9:01pm

Hi, y’all will probably hate what I gotta say about cysto. They gave me a uti every time which b-lined it straight for my kidneys(already at stage 3b kidney failure) and cannot, no, Will not allow for that to happen AGAIN!! I’ve locked horns with my urologist and told him there would be no cysto without a script for antibiotics, preferably cipro. I went to Cleveland clinic for a few reasons but the biggest reason was for validation of my stance on this matter and got it- she couldn’t believe that any urologist would have a problem with that til I introduced her to my urologist vicariously thru clinical notes on my chart. So, she gave him a little kick in the butt, but I’ll only do 1 a year and that is reluctantly. But in what way does this help you? So well then do you still get some kind of periodic abdominal scans? Ultrasound, anything besides the cysto because I know it’s SOP but I noticed that they seem to take their sweet time setting up an OR to cut the tumor out, so is the cysto all that necessary if, and that’s if you are getting any other type of scan which will catch anything irregular in your bladder, but hey, that’s just me! I hope that you’ll get that resolved one way or another. To your health!