Bladder Cancer Group: Introduce yourself and connect with others

I’m new here. I’m here because I have bladder cancer and I’m in maintenance mode. Except for the fact that I’ve got bladder cancer my treatment for the last year has been so far so good. Mainly I got used to it.

I look forward to finding out more from this group.

It will be about 3 months from last bcg

I'm on a similar path. 2 surgeries & 6 BCG finished. Cystoscopy end of Oct. How long was it from your last of 6 induction treatments to the first of next 3 maintenance treatments?

Hi. Diagnosed high grade NIMBC last April. Two surgery’s and 6 BCG treatments so far. 3 scheduled in November. Cancer is gone for now but high rate of reoccurring. My treatment protocol is pretty much standard. Next look in bladder scheduled for Jan.

Thank you for the feedback. I've read where others have said that the BCG treatment wasn't bad. That's comforting to know. After several biopsies, mine they do not think that mine is muscle invasive. Because of that, maybe I'll have better luck with BCG (fingers crossed). One of my concerns is cost also. I'm living in Costa Rica now without insurance. I've heard others don't take the full dosage; maybe I'll try that to save money.

I haven't scheduled my next surgery yet but it will likely be towards the end of this month. The recovery times the after the first 2 surgeries were extensive, but the doctor says that since these lesions are tiny the recovery time should be no more than 10 days. That gives me some motivation to have it done sooner than later.

Hi @blazermaniac. My husband started out that way and tired of it quickly. Also his first tumor was muscle invasive. He was a BCG failure but the treatment was not a problem for him. A short (hours) feeling of urgency right after the infusion and then no other side effects. He also had chemo right after his first surgery to remove a diverticulum off the bladder that contained the tumor. After a few years of continued recurrence and a Keytruda trial, he elected to have a radical cystectomy with neobladder formation. He is cancer free for 2 years plus and must catheterize daily and it was a huge surgery with multiple complications. His care has been at Mayo Rochester MN and he is quite satisfied with the results at this point. Read through the previous posts for more information. When is your next surgery scheduled?

Hi all. I'm new to the group. I've had 2 surgeries within a year and now need a 3rd. This time there are only a couple of very small lesions. Mine is non muscle invasive but my doctor wants me to start BCG treatments. because of the high recurrence rate. I will be interested in reading your stories.

to Sue@swh Update. My cystoscopy on 9/24 was clean so now doing 3 BCG treatments then another cystoscopy, then repeat and repeat. No problems so far. Still getting just 1/3 dose of BCG.

Hi Sue,
I had same surgeries and diagnosis. I completed my 6 BCGs without anything more than mild bladder irritation from #'s 5 & 6 which resolved by the following morning. I just went for my recheck (still cancer free!) and will have second cystoscopy in mid-Nov followed by 3 more BCGs.
Unfortunately the waiting and worrying about results appears to be the hardest part for me.
I wish you settled nerves and best results!

Hi Sue, The BCG treatment on the bladder really are not that bad. I received the full dose of BCG on my 1st visit that made me nauseous and achy. The Dr then cut the volume in 1/2 and other than being a bit tired and embarrassed having 3 people run different gadgets up my privates, it was not that big of a deal. Having my kidney removed, 5 months of chemo and 1 year of immunotherapy had it's significant challenges.