← Return to Bladder Cancer Group: Introduce yourself and connect with others

Discussion
Colleen Young, Connect Director avatar

Bladder Cancer Group: Introduce yourself and connect with others

Bladder Cancer | Last Active: Sep 16 11:03am | Replies (357)
Comment receiving replies
Profile picture for kirsten210 @kirsten210

Hi, my name is Kirsten. I'm only 43 and I was diagnosed with bladder cancer in Feb 2025 and have had three turbts so far. All biopsies came back high grade non-invasive. Am told I will start BCG when I heal from my last turbt, which was a week and a half ago. What should I expect for sode effects from BCG treatments? What advice does anyone have?

Jump to this post

Replies to "Hi, my name is Kirsten. I'm only 43 and I was diagnosed with bladder cancer in..."
Colleen Young, Connect Director | @colleenyoung | Jun 2 8:48pm

Welcome, @kirsten210. There are few discussions about BCG in the forum. (See all https://connect.mayoclinic.org/group/bladder-cancer/?search=BCG&index=discussions)

But that a pretty long list of discussions. I might suggest starting here to get helpful tips from members as you prepare for you first treatment:
- First BCG treatment: What to expect? https://connect.mayoclinic.org/discussion/first-bcg-treatment-what-to-expect/
- My journey with Bacillus Calmette-Guerin (BCG) treatment https://connect.mayoclinic.org/discussion/first-bcg-treatment/

VIEW AND REPLY
Sue, Volunteer Mentor | @sepdvm | Jun 4 8:51am

Kirsten, I am sorry that you are dealing with this and at such a young age. My husband has had a radical cystectomy with neobladder for 4 years now. He was a BCG failure and got tired of repeated TURBTs and other treatments. His initial tumor was highly aggressive and muscle invasive. His BCG treatments produced minimal discomfort. A feeling of urgency for the first 12-24 hours after instillation was his only side effect. I see others on here who have more symptoms. As he was in the maintenance timing of BCG, he had a recurring spot so Keytruda was tried prior to the cystectomy. I know many people will go for years on maintenance scopes and turbts but I suspect they have a lower grade of cancer.
Keep educating yourself on newer treatments and don't hesitate asking for a second opinion or referral to a large cancer center. You may find options there that a local urologist does not offer.

VIEW AND REPLY