Bladder Cancer Group: Introduce yourself and connect with others

Kirsten: So sorry to hear you are dealing with bladder cancer at age 43 but take heart, it's highly treatable, especially when caught early, in the non-invasive stage. I'm 84 and diagnosed with same condition (high grade, non-invasive). I recently completed six BCG treatments. Insertion of BCG by means of a catheter is only mildly uncomfortable. I was concerned about retaining the BCG for 90 minutes but could not even sense its presence in my bladder. I accepted a warm blanket offer (good decision) brought my cell phone and listened to choral music. The only side effect I had was mild fatigue. I was able to play 18 holes of golf periodically during the entire six weeks of treatment. I've seen comments from folks who have had side effects from BCG, but side effects strike me as generally mild and manageable. My advice: The unknown can cause anxiety, but don't be overly concerned about your six-week course of treatments. You'll know the drill after your first treatment, and subsequent treatments will be easier. If you do have side effects, they will be manageable. Mine were virtually non-existent.

Welcome, @kirsten210. There are few discussions about BCG in the forum. (See all https://connect.mayoclinic.org/group/bladder-cancer/?search=BCG&index=discussions)

But that a pretty long list of discussions. I might suggest starting here to get helpful tips from members as you prepare for you first treatment:
- First BCG treatment: What to expect? https://connect.mayoclinic.org/discussion/first-bcg-treatment-what-to-expect/
- My journey with Bacillus Calmette-Guerin (BCG) treatment https://connect.mayoclinic.org/discussion/first-bcg-treatment/

Hi, my name is Kirsten. I'm only 43 and I was diagnosed with bladder cancer in Feb 2025 and have had three turbts so far. All biopsies came back high grade non-invasive. Am told I will start BCG when I heal from my last turbt, which was a week and a half ago. What should I expect for sode effects from BCG treatments? What advice does anyone have?

I finished my BCG 4 weeks ago. Had the followup with my urologist 10 days ago and he found some more areas that are suspicious. I go next week to the hospital where he will do another TURBT and scrape and cauterize. We shall see what happens with the biopsy.

Last week I had a MRI of my lower back due to a disc problem. The radiologist also noted a cyst on my kidney. I gave the report to my urologist and he said he will do something during the TURBT. Just another problem to worry about for now

Hello and thanks for allowing me to join....here's my situation. A 78 year old male. Around 2 months ago, I noticed strings of blood in my urine. At first, the Urologist thought it was a UTI but after multiple antibiotics, a probe was done.

Bladder Cancer was detected in multiple locations...one relatively easy to get at (TURP was performed) and a much larger mass on the 'dome of the bladder'. Cleveland Clinic confirmed this and I will be meeting with the local urologist on Tuesday to discuss treatment options. I am at a loss as to what these might be and what questions to ask. Additionally, I will be getting a second option from the Levine Cancer Center in Charlotte.

From here on, should I be dealing with a oncologist specializing in urology? Or?

As a side story, I am not fond of the local urologist. He may be a great surgeon but his post operative care and follow-up was non existent. I never received a courtesy 'how are you doing. Anything you need'? call. I was literally left high and dry with pain meds....

At this juncture, I am at a loss and feel totally alone....any guidance?

Hello I have just been diagnosed with non invasive aggressive bladder cancer.
It was found by CT scan for stomach issues. They called me and said I had a spot in my bladder and needed to get that taken care of first. So I went to the urologist and he removed 2 tumors (confirmed) and and I am now scheduled to start BCG in a couple of weeks. My concern with this treatment is that I am on an immunosuppressant for a liver transplant and wondering about the side effects of this live virus they have been telling me for 10 years to avoid taking. My transplant doctor has said it should be ok but I need blood test every couple weeks to make sure I’m okay.
That adds to the stress of the diagnosis and treatment.
I was wondering if anyone is or has dealt with this circumstance.
Thank you,
Mike

I apologize for not getting back to you. It seemed that each week was about the same, but side effects were longer, but never extreme. Mostly, I would have low energy. I always got a headache, but excedrine wiped it out and it didn't come back.
The fourthweek, I became dizzy and stayed that way for a few days. It was a weekend and I couldn't get any information from my doctor or nurse. We have MyChart, but my queries weren't addressed, so I still don't know if that was a side effect or just something else.
Emotionally, I was fine until week 5, which was so close to the end that I could see it, but yet I still had one more to go! For me, the tiredness as a side effect was worse than the treatment itself, because I had struggled for energy when I had the cancer but didn't know that I did. It was a long battle for energy that I didn't win. I am finally, after the six weeks are done, beginning to get more energy back to do the things I've been putting off and begin to catch up. I still don't feel totally back to normal, but it will come.
During the treatments, I was lucky to not experience much pain from the chemo itself. I did experience pain from the catheter though, and I just posted about the general discomfort of being stuck atop an exam table for 90 minutes. After the gemcitibine was withdrawn and docetaxel was installed, I was able to leave and go home, so I was able to finish out the second installation in comfort. All in all, I feel fortunate that I had no really bad reaction to the chemo itself, just to the physical discomfort from the logistics of it all. My follow-up appointment is in two weeks.

I was just diagnosed with LOW GRADE PAPILLARY UROTHELIAL CARCINOMA. Hopefullly it was caught early enough.

Great news on your path to recovery and fighting BC! This helps me going forward with making decisions for my care. Thanks for your reply.

Thanks very much for your response. This helps me going forward with trying to determine my future care. I'm trying to learn as much as I can to help me make somewhat educated decisions going forward.