Bladder Cancer Group: Introduce yourself and connect with others

I'm sorry to hear of your protracted struggle with cancer, which is difficult, and your struggle with discouragement, which is worse. I am at an earlier stage, involving only the bladder so far, and it began about a year ago when I was 69. The certainty of my mortality and the anxiety I feel for my family and loved ones seem to be ever present. The thought of having to leave the dance fills me with emense sadness. I suspect your are no stranger to these thoughts and feelings, and they are even more immediate and pressing due to the state of your illness and your comparatively young age. Please know that you are not alone. In the quiet, solitary hours when we feel it all weighing in, we are not alone.

just getting statrted.removed my left kidney and ureter last july.cancer came back in the bladder.just had a turbt 11 days ago.will start BCG in 6 to 8 weeks.alot of anxiety and fear over things i read as am only 59

Tom26
What treatment did you get 7 years ago. BCG?
Thanks
Fran

@bethcamp, how are you doing in week 2 of gemcitabine and docetaxel?

Sue,

Thank you for your kind words. Tomorrow is week 2 of 6 for the GEMDOCE.

Elizabeth

I am currently getting my third of six BCG treatments. I don't have many side effects except a huge lack of appetite and some unusual moods. Anyone experience this?
Francis I

I have finished my 6 BCG treatments last Tuesday, April 15th. Have not had any side effects. I don't know if that is good or bad but I guess I will take it as a positive since my Urologist every week was so happy to hear I had no side effects at all.
On July 13th she is going to do a cystoscopy and if my bladder looks good, the next day July 14th my 3 BCG treatments will start.
It does make me feel nervous though with 3 months no check up but I guess I have to enjoy everything and will do my best to do that.

@bethcamp your story contains not just information to quell patients' fears, but great suggestions for bringing comfort to an uncomfortable situation. My husband ended up choosing a radical cystectomy with neobladder after a few years of repeated TURBTS and has been clear since then. He had a very aggressive BC. I look forward to reading about your success story followup.

Hello. I was diagnosed with High Grade Bladder Cancer in January of 2025. It was noninvasive, and categorized as high grade because there were several tumors. They were at the neck of the bladder, which explained a lot!
I popped back up to the top after writing this message to warn and apologize that is is a bit long. I gave details that might help if you are facing this treatment for the first time.

I had sudden bleeding with urination and my doctor told me to go straight to the ER. I did so and got referred to a urologist.

The urologist was very matter of fact but also encouraging. He told me he would scrape it out and I would live another 50 years. Gosh, that would make me really, really old!

There was so much I didn't find out until later, like the need for a follow-up surgery and all the chemo treatments I would need. My sister had a small spot at age 30, which was very young for this, and it was removed and no chemo. She had lots of check-ups over the years, though. She has been clear. I think that helped me to be optimistic, although mine was far more advanced in terms of volume, but thankfully noninvasive.

Now I have had two TURBT's and my first infusion of GEMDOCE. That was today. I was dreading the possible complications, but went through it very easily as far as a lack of burning and things I had feared.

I was advised to bring something to entertain myself. I took my iPad and watched a Netflix movie that I realized I had already seen, but this time I was actually paying attention. A lighthearted movie was perfect to help pass the time. As many have explained, the catheter stayed in for the gemcitabine, and for me that was the biggest discomfort. I hate catheters. There was no real burning as I had feared. After 90 minutes it was drained, the docetaxyl (not sure of my spellings) was put in and I went home. I finished watching the movie and then kept an eye on the clock. For me it was 1:30 PM that I could finally release it. I expected a brass band to start playing, but it was uneventful.

Then, I fell asleep and had a very very long nap. I am tired, and hope that tomorrow will not bring more side effects. 5 more to go on this first go-around of GEMDOCE. It was not even near what I had feared.

The nurse had suggested I bring a blanket. I brought a super comfy throw and it was perfect. It relaxed me as soon as I put it over myself. - like a touch of home. I have already put it into the laundry. It will be ready for next week.
Some very special women friends who had gone through breast cancer put together some goody bags for me to take with me - fluffy socks, a devotional book, a sudoku book, hard candies, chocolates... I felt good having some of that with me, but didn't need any of it the first time. I didn't relax that much because i kept expecting things to take a bad turn, but although uncomfortable and not my first choice for how to spend a couple of hours, it wasn't terrible.

What has impressed me is the number of friends whose cancer stories came out when they heard about my situation. Otherwise, I would have no idea what they had gone through. They shared to be encouraging. One older friend shared two really scary cancer stories. I wondered why she did that, and then she explained that if she could get through that, I would also get through mine. It helped. I guess it was my chat group before I found this group. I look forward to having this in the rearview mirror and sharing a success story.

@hlr, it is hard to be a caregiver from afar. How is your mom doing?