Bladder Cancer Group: Introduce yourself and connect with others

@louw, there are several discussions where members share about how to prepare for bladder removal. For example, see these related discussions:
- Looking to connect with people who had Cystectomy & Neobladder
https://connect.mayoclinic.org/discussion/cystectomy-neo-bladder-patients/
- Radical Cystectomy: Would like to hear the experiences of others
https://connect.mayoclinic.org/discussion/radical-cystectomy/
Will you have surgery then chemo?

Diagnosed (finally) with invasive, high grade papillary urothelial carcinoma. After Cystoscopy and TURBT urologist suggested cystectomy soon. That’s when I quickly began pursuing care and treatment at Mayo Clinic. Waiting now for triage consult. I have all the symptoms and pretty high level of discomfort, ie. pain. Quite rundown. I’m hoping to get my appointment moved up and get going on a plan. Have seen multiple providers over past months and months who all wanted to believe I either had uti, interstitial cystitis or just low estrogen. Very frustrating and dangerous.

Hi @vars57 Steve, you might also be interested in this related discussion:
- CT scan standard for Papillary urothelial bladder cancer, high grade?
https://connect.mayoclinic.org/discussion/is-ct-scan-standard-care-for-papillary-urothelial-bladder-high-grade/
I can imagine you're anxious to get started with treatment and overwhelmed at the same time. When is your first treatment?

Thank you. I'm 66 and have a great surgeon at UMass. I'm also getting a 2nd opinion at Mass general cancer center today. I met with the Umass oncologist yesterday and she outlined the program for chemo. I'm optimistic with what I've been told and am coming to terms with the bladder removal. It helps to hear other people's stories. Thank you

I've been pleasantly surprised with my neobladder! My surgeon prepared me well mentally for the challenges that I could run into but thankfully things have gone as we hoped. Of course it will take a while for it to work perfectly but realizing that ahead of time was important. It takes patience but I'm pleased at where I'm at and tomorrow will only be 6 weeks since my surgery. I have not had any complications. Recovery the first three weeks is particularly difficult but it gets easier each day.

How has your neo bladder recovery going. I’m interested in the outcome vs
Other options if and when I need to do it. Thank you

Hi there,
We were told by MSK that they didn’t have BCG back in November. Our local urologist had it though and my husband was able to start treatment. Through the nurse I heard they have another patient who had been traveling long distances (Allentown to Philadelphia)for BCG which was too difficult for him. He was able to be referred and get BCG at our local urologist as well. So maybe there might be urologists near you with BCG supply that aren’t at the major medical centers. It might take calling around or seeing a local urologist and asking for help locating BCG through their professional networks. Just a thought.

Yes, I have a port. I was glad to have it for chemo as it made things easier on me.

Chemo was difficult. The farther along, the harder it got. Nausea and overall fatigue were my biggest issues. So glad to have that behind me. I had surgery in Nov and now have a neobladder.

Thank you! Glad all is going well for you. Keep up the good fight!

Good morning
I am 64, diagnosed with malignant urothelial bladder cancer 11/2 year ago. Had a TURBT and bladder chemo, which up til now seems to have taken care of it.
However, i have new lower mid abdominal pain which I keep being told is not associated with this! However, i had a hysterectomy, so nothing else there to give pain. Anyone else experiencing this kind of pain and told it is cystitis, yet urinalysis and culture normal?