Bladder Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, May 17, 2024

Welcome to the Bladder Cancer support group on Mayo Clinic Connect.

This is a welcoming, safe place where you can meet people living with bladder cancer or caring for someone with bladder cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

Feel free to browse the topics, use the group search to find answers to your questions or start a new discussion.

Pull up a chair. Let’s start with introductions.

What type of bladder cancer were you diagnosed with? What treatments have you had? How are you doing?

Interested in more discussions like this? Go to the Bladder Cancer Support Group.

Sue, Volunteer Mentor | @sepdvm | 2 days ago

In reply to @ronniek "@sepdvm Did your husband have robotic surgery? How old is your husband? Does he have episodes..." + (show)

@ronniek He had a partial cystectomy initially to remove a diverticulum (containing the initial tumor ) off the side of bladder plus many lymph nodes and it was an open surgery. This was followed by chemo and then BCG. Cancer kept returning in bladder once on the BCG maintenance. He tried Keytruda but no response. He got tired of repeated TURBTs and Neobladder was done 2 years after first surgery and it was open surgery. The hernia repairs were done robotically. The recovery from robotic surgery is so much faster, and much less pain. He was 68 at the time of first surgery and is 73 now.
He takes precautions at night with an undergarment and bed pad as he will have occasional minor leakage with a very full bladder when in deep sleep. Nothing during the day.
I recommend discussions with surgeons and nurses about potential complications and odds of them happening. The issues we dealt with would have been tough for caregivers with no medical background. Are his surgeons offering neobladder as a potential cure? It sounds like he is going into this surgery in good condition and I'm sure it will make his recovery phase shorter.

ronniek | @ronniek | 4 days ago

In reply to @sepdvm "@ronniek My husband had much experience in his business with various stoma patients and did not..." + (show)

@sepdvm
Did your husband have robotic surgery?
How old is your husband?
Does he have episodes of urinary incontinence?

Sue, Volunteer Mentor | @sepdvm | 4 days ago

In reply to @ronniek "@sepdvm Husband is scheduled for neobladder robotic surgery on September 17th. History of BCG treatments with..." + (show)

@ronniek My husband had much experience in his business with various stoma patients and did not want to live with a urostomy. He is very glad that he chose this route even tho he must self catheterize 3-4 times a day. He had an initial abscess 10 days postop that ruptured and then had urine draining from his incision at this site. A trip to the ER and great doctor there speaking with clinicians at Mayo who suggested proper scans and then a trial of increasing balloon pressure of Foley catheter which controlled the leak. He had a closure of one ureter/neobladder junction which required nephrostomy tube placement and repair. He had a large incisional hernia that had to be repaired and a smaller one later on. He has had the appearance of stones on scans, but when attempts were made to remove these surgically they couldnt be found. our first 2 years after his neobladder surgery were challenging but he is not regretful. I think the worst part for him was having hiccups continuously day and night for almost 2 weeks after surgery. We remedied that once he returned home after hospitalization.

ronniek | @ronniek | 5 days ago

In reply to @sepdvm "@dianeoh26 I see that the blood cancer post was likely a spell check correction. My husband..." + (show)

@sepdvm
Husband is scheduled for neobladder robotic surgery on September 17th. History of BCG treatments with recurrence high grade Stage 2 with invasion of bladder wall. Next step was chemo. He had 4 treatments and they canceled his last treatment due to an upper respiratory infection requiring oral antibiotics. He is 72 years old, very strong willed and self-disciplined. Other than bladder cancer he is healthy and active. What made you decide on the neo bladder procedure as opposed to other treatments. What were the complications that you mentioned. Do you have any regrets in any of your decisions. What did you find the most difficult?

midiexpert | @midiexpert | Aug 8 10:01pm

Glad to help. I just had my 2nd post-op follow up and my doctor removed all restrictions on activity, etc because I am doing well, better than I expected, actually. I’m just short of three weeks since my TURBT. First week was hard, since then gradual improvement. I have a follow up pathology visit at the end of Sept, followed by the first cystoscope exams in office, then every three months, for a couple of years. As of now I don’t require any other treatment unless I have a reoccurrence. Just what we have to live with, but still I feel fortunate. I am starting to (cautiously) resume normal activities.

Colleen Young, Connect Director | @colleenyoung | Aug 8 3:41pm

In reply to @midiexpert "Was diagnosed with non invasive low grade carcinoma on dome of bladder, had Turbt on July..." + (show)

@midiexpert, welcome to the group. Your post is helpful and hopeful for those who may be facing TURBT. I hope things continue to improve as you recover. Will you have any further treatment? When is you next follow-up?

midiexpert | @midiexpert | Jul 27 7:36am

Was diagnosed with non invasive low grade carcinoma on dome of bladder, had Turbt on July 20th. As of today, July 27th, I am feeling better each day, and very little to no pain anymore, after experiencing extreme pain and discomfort for the first 5 days post-op.