First BCG treatment: What to expect?

@jlp27
Hello
I'm behind you on this as I am having my second cystoscopy under anesthesia
next week to take a biopsy of my bladder muscle to see if the cancer invaded that or not. After the result we'll we what happens next.
Was your bladder muscle invaded?
I am not looking forward to having a cystoscopy without anesthesia but I can take a Lorazepam to relax me.

Hello @lauriejw and welcome to Connect. There seems to be a wide range of individual reactions to the BCG treatments. My husband started his after a partial cystectomy and chemo, as his tumor was muscle invasive. Catheterization comfort depends on the nurse's ability and experience but application of a local anesthetic made it more comfortable for him. The first treatment we spent the 2 hours there but he had a regular hospital bed at the infusion center and was not uncomfortable. After that we left right after the infusion and he did his turning at home on the couch. He had minimal reactions to BCG, just an increase in urgency for the first 12-24 hours afterward. No burning, pain, or bleeding. He was worn out but he was also healing from previous procedures. Unfortunately his cancer was very aggressive and returned during the maintenance BCG treatments. He ended up with a radical cystectomy with Neobladder to be cancer free. The new normal now includes self catheterization 3-4 times a day and Depends at night but it's a far sight better than cancer.
This form of immunotherapy seems to be fairly tolerable compared to some others, despite the invasive catheterization. Always address any symptoms that you have with your medical team and you will get through this next step successfully. Be strong.

My first BCG instillation (30%) was 9 days ago Tuesday. They are skipping a week and doing the next 5 treatments starting next Tuesday. I think the worst part was having the catheter inserted for the first time while I was awake versus under anesthesia. Also, the first time they insist you remain for the full 2 hours so laying on a hard metal table with a cloth cover was tedious. Thanks to other posts I had brought my AirPods with me and played tunes from my iPhone for the 2 hours. I really had no reaction to the first BCG but I've read where the side-effects increase as the 6 weeks goes on. After my first TURBT, I had a catheter in for 6 nights at home. The BCG experience (so far) is a walk in the park compared to that. Best wishes for a successful treatment!

A lot of people on this page have had BCG including myself. BCG made me very tired. No bleeding or pain tho. After 6 wks of treatments I had more tumors in my bladder. Had TURBT then had 6 wks of intravascular chemo. One time it was almost unbearable but the rest were OK. Once again I was very tired for several days after each treatment. No tumors in my bladder but my doctor had me do a CT and found a tumor on the outside wall of my bladder. I had a RC and a NB a week later. Life changing, nothing I can’t live with. No regrets.

@gkarsin

No, it was not. In the first cystoscopy & TURBT, the doctors actually thought that the tumor in my bladder was benign, and were surprised when it came back T1 high-grade non-invasive. The second cystoscopy & TURBT confirmed that the cancer was non-invasive and no additional cancer was found upon pathology. However since it was T1 high-grade NMIBC, BCG immunotherapy was scheduled. The catheterization was uncomfortable, but only briefly. BCG round 2 is scheduled in 4 days.

I was first diagnosed in April 2024 after breaking my hip when I tripped on the curb, and fell onto the pavement in the street while checking my mail. Yes I’m accident prone….. 😂. When the hospital did my CT scan for my hip they also happened to discover what they termed a mass on my bladder. After being referred to a wonderful urologist, I’ve had 2 surgical outpatient procedures to remove the spots from my bladder lining, one of which was due to a reoccurrence of spots after a 3 month office procedure check. Thankfully so far neither time has shown any spread outside my bladder wall, But since I did have a reoccurrence, my urologist wants me to do 6 weeks of BCG. My very first one is scheduled for next week. I guess since this is new to me, I’m just asking for tips, suggestions, and what to expect from actual patients although I know the staff will be explaining some things to me. I’m nervous and not sure what to really expect. Any and all suggestions, shared experiences, or just good thoughts would be appreciated. Happy to be here and hope you or your loved one are doing well 🥰

I was first diagnosed in April 2024 after breaking my hip when I tripped on the curb, and fell onto the pavement in the street while checking my mail. Yes I’m accident prone….. 😂. When the hospital did my CT scan for my hip they also happened to discover what they termed a mass on my bladder. After being referred to a wonderful urologist, I’ve had 2 surgical outpatient procedures to remove the spots from my bladder lining, one of which was due to a reoccurrence of spots after a 3 month office procedure check. Thankfully so far neither time has shown any spread outside my bladder wall, But since I did have a reoccurrence, my urologist wants me to do 6 weeks of BCG. My very first one is scheduled for next week. I guess since this is new to me, I’m just asking for tips, suggestions, and what to expect from actual patients although I know the staff will be explaining some things to me. I’m nervous and not sure what to really expect. Any and all suggestions, shared experiences, or just good thoughts would be appreciated. Happy to be here and hope you or your loved one are doing well 🥰

My first BCG treatment experience was 7 years ago and was caught early due to blood in my urine that was due to a 25 mile bike ride.
The high grade tumor was removed and yes the catheter was the worst part. I went through bcg treatments at full dose. Cystoscopy were 3 month, 6 months and then 1 year for the last 2 years. However, this April, tumor came back. Again tumor was removed, catheter was only for 1 day and still worst part. I have completed 6 initial BCG treatments and 3 maintenance treatments all at half dose due to bcg shortage. This was a blessing as my body was able to better tolerate this. I have 3 more maintenance treatments after scope in November. Praying it comes back clean.
As for BCG, everyone is going to react differently. The 1st 6 were not bad, just a little bit sore but always felt like I had to pee. The last 3 were more difficult but I can’t say enough to take AZO right after the treatments. They are a life saver but will turn your urine orange.
Good luck with your treatments.

@tom26 Thank you!

I was first diagnosed in April 2024 after breaking my hip when I tripped on the curb, and fell onto the pavement in the street while checking my mail. Yes I’m accident prone….. 😂. When the hospital did my CT scan for my hip they also happened to discover what they termed a mass on my bladder. After being referred to a wonderful urologist, I’ve had 2 surgical outpatient procedures to remove the spots from my bladder lining, one of which was due to a reoccurrence of spots after a 3 month office procedure check. Thankfully so far neither time has shown any spread outside my bladder wall, But since I did have a reoccurrence, my urologist wants me to do 6 weeks of BCG. My very first one is scheduled for next week. I guess since this is new to me, I’m just asking for tips, suggestions, and what to expect from actual patients although I know the staff will be explaining some things to me. I’m nervous and not sure what to really expect. Any and all suggestions, shared experiences, or just good thoughts would be appreciated. Happy to be here and hope you or your loved one are doing well 🥰