CT scan showed 2.9 cm mass and maybe an enlarged lymph node

My husband had very small amounts of blood initially but no other symptoms with his muscle invasive aggressive bladder cancer. After initial surgery to remove part of bladder (because the tumor was in a little pocket like diverticulum off of the bladder) He had chemo but it returned and had it removed via turbt procedure, then a trial of BCG infusions after that but while on maintenance infusions, it returned again. He was tired of all the procedures and elected to have a total cystectomy and neobladder creation. a long 6 week recovery from that big surgery, but he is content with the results and has been cancer free for 3 years. He is restricted on how much weight he can lift, but that is due to incisional hernia repair. He also must catheterize 2-3 times a day to fully empty the neobladder. I have noted patients on Connect who will continue for years doing turbt procedures to control recurrences, but that is usually with a less aggressive form of bladder cancer. You will need more information to learn about your potential tumor. Please share with your family. They want to support you and help as they can through this journey.

It's weird because sometimes I can pee normal, like the last five times I peed last night and this morning were normal and then I just went pee a half hour ago and it was all blood and large blood clots. Did you pee blood for a while before you went in? Or did you have other symptoms?

My cancer was muscle invasive (and 5 cm) which is why I had to have my bladder removed. I didn't really have a choice. Hopefully yours has been caught earlier and you have some other options.

I work from home and am blessed with a great employer so they were very flexible with my time working during chemo. I just used vacation time when I needed to.

With a neobladder there is really no difference in the things I can do. The immunotherapy will last for one year. It is easier than chemo.

What were your symptoms? And what made you go in to get it checked out?

How much work did you miss? Can you still do normal stuff? How long do you think you have to have treatment?

I was diagnosed in June. It's very stressful and honestly I probably made light of it when I told my two adult sons (hoping to prevent stress for them). I've had chemo and then surgery in Nov. I have a neobladder now and am doing immunotherapy for all of 2025. There are so many things the doctors can do now.... it's amazing. Try to stay as positive as you can. You'll get through it!

Thank you, I have no one to talk to and am dreading telling my kids after the cystopy.

I can't sleep, I am stressing so bad.

Hello @mrtony. It sounds like you are just starting into the potential bladder cancer pipeline. You will know a bit more after your Cystoscopy Wednesday. Be prepared to discuss treatment options with your urologist when you meet to discuss the results. Questions about side effects of the various options are important so you can make an educated decision on further treatment. This can be a scary journey and learning as much as possible about your condition will help you to deal with everything ahead.