Bladder Cancer Group: Introduce yourself and connect with others

Hi. I was diagnosed with MI bladder cancer in June of 2024. I'm a 55 year old female. You’re right. It is scary. In the past six months I've been through 3 mos of chemo and today marks exactly 5 weeks since my bladder removal/neobladder surgery. It's certainly not easy, but you can absolutely do it, too. I would suggest allowing yourself to lean on the people around you. They will help you get through it. All my best to you!!

Welcome to Connect @jojo2059 . It has to be heart wrenching to see your brother going through so many health issues. My husband had high grade bladder cancer diagnosed 5 years ago. He has had multiple surgeries and did have chemo with Cisplatin after the first surgery. He was recommended to have a port and that worked well for him. It was removed around a year after treatment. Your brother needs help in making the decisions about treatment, but ultimately it is his decision unless he is declared mentally incompetent. Has he had neurologic testing for his potential dementia?

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.

Thank you for your welcome post Sue. He just had a MRI waiting on results. He had a bad fall at work where he fell backwards and hit the back of his head. He has not been the same after that fall. Waiting on a Neurologist appt. He starts January 6th with chemo. He really is confused and can’t make up his mind. Hoping to get clarity soon. But the docs still do not want to put a port in.😭

Good luck Steve. I’m 9 months out. Two turbt surgeries, 6 BCG and 3 more this past month. So far so good but this is a life long battle for many. You need to trust your urologist

Hi Jo, thank you for your post. We are all new to bladder cancer, chemo & surgery. How was your chemo experience? How did they administer it to you? Did you have a port? Which diversion did you choose? Thank you, Jolynn

I was recently diagnosed with Bladder Cancer Stage 2. I have had a TURBT and am now preparing for chemo and radiation treatments. I am 77 years old and a bit apprehensive about all of this. It is moving very fast (4 weeks ago had surgery. I am not even sure about the name of the cancer but will find out on Monday when I get results of PET scan done 3 days ago. Is there a real need for all this rush?

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?

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