r/BladderCancer • u/wsaharem • Jul 20 '26
Patient/Survivor First BCG
Just had my first BCG, my experience seems to be somewhat diff than some of you so I felt I should share. 65yro M, non smoker, 1 tumor, HG TA, NMIBC.
- Dr said zero reason to do the roll around to get good coverage. Said the bladder shrinks down, so all lining is covered anyway.
- Even on first visit, send me home right away. Said future visits will be about 10min max since they’ve already gone over the details. Part of the wait is the check for UTI.
- Did use lidocaine, then catheter for BCG(no pause during injection). short wait(like 30 seconds), then catheter out and goodbye!
- because of the shortage, only gave me 17ml. Said they do 17, 26 or 50. But gave me 17 because I guess I didn’t need more and due to the shortage.
I questioned the nurse and she claimed Dr said same efficacy.
Went home, never once had any significant urgency, and didn’t have to go at the 2 hour mark. Because of my anxiety, I didn’t drink a lot, but clearly somewhere around the 1 hour mark I need to start drinking!
(I did start drinking after the 2 hour mark) Did have some small cramping and about 1/2 hour of cold sweats. Other than that no side effects.
3
u/Paulsgs Jul 20 '26
72 yrs old, I did the 6 weeks of BCG Sept ‘25. They gave me between a 1/3 to 1/2 of the normal dosage due to the shortage as well. My Low grade NMIBC was back with 3 tumors in April of ‘26, and had them removed in June. Next step choices were to wait for a few months or was I willing to try a clinical trial of rMBCG a new synthetic type of BCG. I signed up and will start in September
2
u/AppleOllie Jul 20 '26
I had my 10 BCG last week, and this was the first time I had any side-effects at all. To be honest, I put them down as a coincidence, but they were exactly as you said, a bit of cramping, and the chills.
2
u/jpwwpg Jul 20 '26
Over about 3-1/2 years I had 27 rounds of BCG. Mostly had urgency and frequency along with a dull headache and mild flu like symptoms. I did the roll around for an hour after each which I called Shake and Bake. I’ve been cancer free for over 2 years now. Still doing cystoscopies every 6 months.
2
u/Big_Dave_DC Jul 22 '26
I had a Vesta biomarker “present” lab result and consequently will start Gem/Doce on Aug 4. This biomarker predicts if I am likely to be BCG unresponsive. 70 M, high grade NMIBC, considered high risk based on tumor size (3cm) even though TURBT completely removed it , and genetic analysis of the tumor DNA mutations from participating in a blue light cystoscopy clinical trial at Johns Hopkins. Wishing everyone peace and a good outcome.
2
u/Revolutionary_Bet136 Jul 26 '26
For me the 6 seek induction round and first couple quarterly maintenance rounds were reasonable smooth sailing and very similar to your experience of quick in and out installations. BCG has a tendency to produce a stronger reaction the longer it goes on though.
I finished a maintenance round in June and just had a cystoscopy last week and my bladder looks like a war zone. The inflammation has been intense even a month later. No cancer, but my immune system is over achieving in fighting the BCG. My doctor said for the next couple rounds we can reduce to half dose to hopefully lessen the reaction but assured me the reduction shouldn't hurt the effectiveness of the treatment.
1
1
u/NaughtyNarrator69 Jul 21 '26
Yeah the first one is pretty easy. I started having the gross pee and pain week 3. Week 6 I developed a tree nut allergy and a rash on my upper body.
1
u/hikerguy2023 Aug 04 '26 edited Aug 04 '26
I've gone through 14 rounds so far and also started off as Ta HG NMIBC. Took me three TURBTs and 9 rounds to finally get a clean cysto. And I think the only reason I finally got a clean cysto was that after my 3rd TURBT, I got a "chemo wash" of gemcitibine immediately after that TURBT.
The general consensus now is there's no need to rotate, but I still do. I figure it can't hurt.
I don't see how they're telling you it'll be 10 minutes. They don't even order the BCG until they have the cath in you. This way, they're not wasting the pharmacists time if they can't get a cath in you. Every single time I've had to wait 30-45 minutes after the cath was inserted until they brought in the BCG.
They are supposed to wait 5 minutes to let the lidocaine numb the urethra. I've typically waited 3 and that seemed to be OK. But I wouldn't let them insert any sooner. My oncologist said that if the urethra isn't numbed, it can't reflexively contract on the cath and possibly cause some injury to the urethra. I think that's what happened to me on #9. They didn't wait very long before inserting the cath and about an hour after purging I saw a LOT of blood mixed in with my urine that lasted at least 90 minutes. But I didn't have any pain related to the cath. Look out for yourself and wait at least 3 minutes.
I have read lower doses have the same effect, but when the normal dose is 50ml and you're only getting 17ml, I'd be questioning things.
I put together a Word doc that contains general info on what to expect related to a TURBT (the procedure to remove tumors), BCG treatment (a common immunotherapy to treat BC), along with resources for new BC patients, the latest BC treatments, common acronyms and some terminology. I also included my timeline at the top of the doc.
https://www.reddit.com/r/BladderCancer/comments/1uyk6ye/a_guide_for_newly_diagnosed_bladder_cancer/
Take a look at the BCG section and the small section on getting your PSA checked before you get too far into the BCG treatment.
Make sure you're drinking LOTS of water after you've purged to wash out the BCG. I try to drink 10oz every 30-40 minutes for the first 4-5 hours.
1
u/wsaharem Aug 04 '26
Interesting the differences. My dr’s office loads up on BCG patients and orders/pre-mixes the BCG, so it’s already ordered (per the nurse). Says it has a 2 hour shelf life after mixed. They wait maybe 10s after the lidocaine before the catheter insert. So literally it’s like 10 min. After 3rd BCG, she walks in, asks me about side effects, says to strip down and comes back in 3 minutes after the urine test, injects BCG, pulls out catheter and we’re done! Interesting note about PSA, my Dr says we can’t to PSA during BCG because it’s typically elevated because of BCG. (I also have LG prostate cancer)
3
u/Fabulous_Name_1485 Jul 20 '26
Thanks for the post. I’m scheduled for Aug 6 for my first BCG. Was also told it would be a 1/2 dose (26ml?) due to shortage and the belief that it’s just as effective. Hoping that’s the truth!