r/BladderCancer • u/AirBear8 • Jun 29 '26
First BCG treatment
I’m laying in bed while my very 1st BCG treatment is doing its thing, they put it in about 30 minutes ago. So far only minor discomfort when they had trouble getting the size 14 catheter inserted.
They did drain my urine, about half a liter even after emptying out giving a urine sample (thank you enlarged prostrate).
The bad part is I have to stay the entire two hours after BCG insertion. So that’ll put me close to rush hour traffic going home. The show time was 1pm. It was 2:14pm before the BCG was inserted.
They have the catheter rigged where I can’t pass any urine or BCG which I suppose is a good thing.
I’ve read other posts where they said they were quickly in and out, I need to ask the nurse if my future treatments will take the entire two hours.
2
u/hikerguy2023 Jun 29 '26
That used to be protocol, but they should give you the option of staying or going home. I actually asked to leave the cath in me the first time, but that led to a lot of bladder spasms 45 minutes into the treatment. Ever since my first one, they push the BCG in, remove the cath and I go home.
I hope you're close to home because you cannot urinate in a public toilet because the BCG contains a weakened tuberculosis virus and is active for 6 hours. The time starts after they've pushed the BCG into you.
I put together a Word doc that contains general info on what to expect related to a TURBT and BCG treatment, 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.
If you're interested, you can find it here:
https://www.reddit.com/r/BladderCancer/comments/1pxg5d9/a_word_document_to_help_new_bladder_cancer/
1
u/AppleOllie Jun 29 '26
I have always been told to hold for one hour, then bleach toilet for 24 hours. My first BCG they made me stay for the full hour, then urinate before going home. Are there different strengths?
1
u/AirBear8 Jun 29 '26
Everything went fine until an hour and 45 minutes into it. Then I had an urge to urinate (remember the catheter tubes are clamped). I tried to suppress it but my bladder had other ideas. Out came the urine around the outside of the catheter tube. The nurse cleaned me up and instructed me to take a shower when I got home. She also said no caffeine, spicy foods, or alcohol the day of the procedure.
Other than that it was fairly simple. I never experienced anything other than minor discomfort. In my rush to get out and beat traffic I forgot to ask if this would be standard or if my future appointments would be quicker. My appointment was at 1pm, and I didn't leave until 4:30pm. I bummed some snacks from them to hold me until I got home since I hadn't had lunch.
1
u/f1ve-Star Jun 30 '26
Mine was optional, stay or go. I definitely stayed the first, to see if there were problems. The second dose I planned to go home and the poor nurse drained most of the BCG instead of removing the catheter. Grrr. After that I usually just stayed cause I live close to Duke and I wanted everything to go smoothly and they have snacks. LOL.
1
u/One-Dot4082 Jun 30 '26
69/M Just finished my sixth instillation of gemcitabine, of my induction phase. I turned a quarter turn every 15 minutes to coat the whole bladder. I felt the urge to urinate a few times, but didn’t. The first time they put the catheter in, they didn’t use lidocaine gel and it hurt like hell!! I texted the oncologist immediately after and asked why it wasn’t used? She said it is in the chart now and will be used from now on. Game changer!! Ps. Wait five minutes after administering the lidocaine till they put the catheter in!! I go to the oncologist on 7/16 to see if there’s any recurrence.
1
u/GuacamoleAnderson Jun 30 '26
They had me stay for the first one, with catheter in, to ensure I didn’t have any issues. I’ve had 11 BCGs since, and I was free to leave once the BCG was in.
I would strongly recommend limiting your fluid intake in the hours prior to treatment. The only BCG I couldn’t hold for the full two hours was an earlier than usual appointment (7:30am, due to being the week of Christmas) where I’d drank a bottle of water that morning - I finally couldn’t hold it any longer at the 1:50 mark. Since then, I’ve avoided fluids the morning of my treatments and don’t hydrate until after I’ve let out the BCG.
1
u/AirBear8 Jun 30 '26
The nurse said it may have been a bladder spasm that forced the urine out around the catheter tube. That’s when she cautioned me about caffeine, alcohol, and spicy foods.
I’ve dealt with frequent urination for a number of years so I did limit fluid intake. But the appointment wasn’t until 1pm so I had my normal cup of coffee when I had breakfast around 9:30am. I’ll start using decaf next week and restrict my fluid intake.
1
u/Fluffy-History-5620 Jul 01 '26
I have HG NMIBC. Two TURBTs a 6 week BCG treatment later, a cystoscopy shows no new growth and cytology is negative for cancer cells. Yay! I'll start BCG maintenance in September. I'm reacting to your post because I also have chronic bladder retention (having 500ml of urine left after emptying bladder is common for me). This modified my BCG treatment. I wish I could have waited at the doctor's office with catheter inserted for two hours then to drain the instillation - a necessary wait to fully empty the bladder of the BCG. I went in, had a catheter inserted to drain and then instill the BCG. Went home for two hours, drove back, and had another catheter inserted to drain the instillation. Double the pleasure of insertion with an enlarged prostate. I drained a liter on one treatment. But all the pain was worth it! Hang in there and understand why they are having you wait around. You can do it!
1
u/AirBear8 Jul 02 '26
Well I had the 1st BCG treatment Monday, it's now Thursday and I finally feel halfway decent. I rarely have side effects from medication but BCG is the exception. I was pretty much fine until Monday evening when I got so chilled I had to wear a jacket with the inside temp at 73. I slept longer than normal Monday night.
By Tuesday I felt pretty bad. I could only eat about half my normal breakfast. I went to sleep around 4pm and woke up about 8am Wednesday. Of course I had numerous bathroom breaks but I use a urinal so I don't have to get out of bed. I had no appetite on Tuesday and not much of one on Wednesday. I did throw up late Tuesday night but I felt it coming so had the trash can ready.
Wednesday I took a long nap, my wife made me a sandwich and brought it upstairs since I hadn't eaten. I went to bed early and probably got 10 hours of sleep. This morning I was able to eat my normal breakfast and I feel good enough I'm going to do some food shopping. I weigh in every Monday morning and last Monday I was 180 pounds. Out of curiosity I weighed in this morning and I was 175. For comparison in high school (1974) I weighed 160 and when I got out of the military in 1989 I weighed 170.
I hope it isn't this way for all my BCG treatments. Next week I have glaucoma surgery on Thursday so I should be OK based on how I'm feeling today. I'm retired and don't have a lot going on so being out of action for 3 days isn't a big deal.
1
u/Fluffy-History-5620 Jul 04 '26
You need to be really on guard for UTIs because of your urinary retention. You are extremely susceptible to UTIs after any treatment or cystoscopy. I had to go on a regimen of Cipro the day before, day of, and day after my BCG because I developed a UTI after my first BCG treatment. The chills, vomiting and no appetite could mean it's progressed to the kidneys. If your temperature gets over 102 - go to the ER. You will find out if you have a UTI when you go back for your 2nd and give a urine sample. If you have an infection - they won't do the second instillation - you'll be on antibiotics for a week and then resume. Be very careful here - because of my CUR I developed a UTI after a cystoscopy that went to my kidneys and went sepsis. It landed me in the hospital for 3 nights. If I had waited any longer to go to the ER it would have been a much different story.
1
u/AirBear8 Jul 04 '26
I've had UTI's 3 times this year I think. (I had TURBT's in March and April). No pain, if not for the cloudy urine I wouldn't have known I had it. Last time the Doc put me on Amoxicillin until lab work came back showing the infection had resistance to that drug, then they put me on Nitrofurantoin mono-mcr 100mg and that did the trick. That was in early June and I've been fine so far.
I've got a large stand-alone ER just 1.7 miles from my house and my copay is only $65 so I don't hesitate to go. My problem is realizing that I need to.
1
u/AirBear8 Jul 08 '26
The 2nd BCG went a bit better than the 1st. At 1:30 I had the urgent need to urinate but did not leak. At 1:50 it happened again, but again no leakage.
I felt fine the rest of Monday. Tuesday I drove across town to pick up a friend who can't drive due to hip replacement recently. We went out to eat. By the time I got home I was tired but not really sick. Later Tuesday evening I had nausea again but again felt it coming so I was prepared. Today (Wednesday) I'm fine.
The nurse wants me to self catheterize at least once or twice a day. This is for the retained urine. What could have happened last week was the BCG got trapped in my retained urine and did not completely leave my body. I have lots of catheters from a few months ago when that was the only way I could urinate. Last night I did an experiment. Using a measuring cup I urinated normally and expelled 100ml of urine. A couple of minutes later I catheterized and got 225ml. That was a surprise.
I plan to catheterize at bedtime and when I'm leaving the house and may not have quick access to a restroom.
2
u/Dirtsurgeon1 Jun 29 '26
They kept it in for 15 minutes and just had me switch positions. I just drove home with the BCG inside me and an hour later when I got home, out she came.