Bladder Cancer Group: Introduce yourself and connect with others

Hello everyone,
I have joined on behalf of my husband. He has non invasive carcinoma bladder cancer. He had a turbst in june and in sept the cancer was back. Drs have been slow with starting any treatments. He was suppose to start BCG treatments nov 14 but they do not have availability due to the WW shortage.
Next app is dec 3 @ sloan k. For cystocopy.
As of right now sloan does not have the bcg.
I am hopeful and will insist the alternate treatment i have read about on here is used.
Nice to meet all of you.
Catherine

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.

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

Hello @louw and welcome to Connect. My husband has dealt with invasive bladder cancer for 5 years now. Initially he had surgery and chemo to remove a small diverticulum off the bladder where the cancer was found. Lymph node removal at that time showed one positive node so the chemo was done, as well as Gemzar in the bladder. Continued recurrence and a failure on BCG and Keytruda ended up with a radical cystectomy and prostatectomy with Neobladder creation at Mayo Clinic in Rochester. He did not want a Urostomy so this was his choice. He has experienced many complications due to this surgery but now that all have been dealt with, he is happy with the outcome. He does self catheterize 3 times a day. He was 69 when he had this surgery. Others with this surgery have had better results but perhaps scarring from his initial surgery was an issue.
I recommend researching your options and forming questions for the surgeon. You want a urologic surgeon who has done many of the procedures. Referral to a large specialty center is an option. It is a big surgery with a week or more of hospitalization. It can produce a cure, though, and that is what is most important.

Hi. My name is Steve. I was diagnosed with high-grade papillary urothelial cell carcinoma back in September this year. I’ve had two TURBT resections since then. The first one I also received Gemcitabine. I’m getting ready to start a clinical trial the end of this month. I’ll either be receiving BCG immunotherapy or Gemcitibine/Docetraxel chemotherapy. I’m still trying to process everything. I’m anxious to get things started but a bit overwhelmed with what’s ahead. I’m hoping to find answers to questions and support on the site. Thanks!

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

@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.

Yes, women are not diagnosed as quickly as men from what I understand and this makes us more likely to be farther along once it's caught. Very frustrating to think it could have been caught earlier. I just had my bladder replaced with a neobladder in November. Unfortunately I didn't get the all clear and will start immunotherapy next week. I do feel better mentally knowing the bladder is out though. All the best to you!!