Connect
Anyone have small cell bladder cancer?
Anyone here been diagnosed with small cell bladder cancer. I had a cystectomy in later February (at a non-Mayo hospital) and was told that all visible cancer had been removed. Today at a 2nd opinion session at the Mayo I learned that the original diagnosis missed the fact that I have small cell bladder cancer. I'm in shock that the original pathology work missed this. I will be starting chemo ASAP. I know the outlook is not good and I'm looking for some positive threads to hold onto. Thanks
Like
Helpful
HugInterested in more discussions like this? Go to the Bladder Cancer Support Group.
Connect
@sandielegal yes. I remember your posts. I am blessed from all your thoughts and prayers. I
Hi @mcgonzalez36, I wanted to check in with you. How is your grandmother doing?
I was diagnosed with a tiny tumour in my bladder
I had op to remove then 6 rounds of chemo
I have my first check up on Monday
What happens if it has come back
-
Like -
Helpful -
Hug
2 ReactionsI’m a 14 year bladder cancer survivor. I’m no urologist, but I can share my personal thoughts in hopes it will help. Live positively with today! Absorb joy now, and find kernels of joy in every day. Today, you are cancer free! No reason to fear what you do not have or worry over something you hopefully won’t ever have again. Grateful ! Stay physically active/ move (and our muscles love to work for you ), stay hydrated, be extremely aware of UTI symptoms and other bladder cancer symptoms . Most importantly, if u have ANY bladder CANCER symptoms ( Mayo Clinic has a thorough write up in bladder cancer on their web site) get an appt with your UROLOGIST as soon as possible! Don’t delay or think “ maybe it will go away”. Your appt will allow u to give a urine specimen, and the office/lab will diagnosis if u have a UTI or not. If u do, your urologist will give u an RX TARGETED ANTIBIOTIC that works best/ TARGETED for the specific bacteria identified from YOUR LAB results plus share any other additional information. Finally, I schedule my ANNUAL cystoscopy months in advance where my urologist gets a magnified look inside my bladder plus sends my urine sample to lab. Good maintenance
annually for his/ her “ look and see” in my bladder for any changes .
Let’s hope we will never get bladder cancer again. However if either of us do, our ongoing vigilance will help us “ catch it early”.
Congrats on being bladder cancer FREE!
-
Like -
Helpful -
Hug
8 ReactionsHi @carolelen, welcome. I can understand that you were nervous going into your first check up. That's understandable.
How did it go? What is the follow-up plan from here on in?
-
Like -
Helpful -
Hug
1 ReactionIf treated for bladder cancer, such as myself, "Filgrastim" seems to be a common medication, usually self-administered via needle injection.
It's a simple, painless procedure, which you can do at home.
-
Like -
Helpful -
Hug
1 ReactionMayo Clinic has a thorough write up in bladder cancer on their web site. Can you share the link please? what were your initial symptoms? did you thought it was UTI? How it was detected??
@shoaib1990, great questions for @perky and their experience with bladder cancer.
I can provide the link to Mayo's information here:
- Bladder Cancer https://www.mayoclinic.org/diseases-conditions/bladder-cancer/symptoms-causes/syc-20356104
Hi David,
I also have small cell bladder cancer & transitional urothelial bladder cancer.
I guess it depends on where the biopsy is taken from in the bladder (random). In 2021, the specimen just TCC, but in 2024 In 2024 I was diagnosed with TCC & small cell. Supposedly limited to lamina propria & not the muscle. PET CT all negative. I was prepared for radical cystectomy…but they wanted to spare bladder & I received chemo + radiotherapy. In Australia they keep the pathology samples for 5 years. I had a NeuroEndocrine Oncologist tell me they can access & do more specific testing on specimens that can guide in treatment. Also you can have genetic testing.