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 hours ago

In reply to @believe11 "My mother 88 year-old was just diagnosed with pathologic T1 high grade urothelial carcinoma of the..." + (show)

Hello @believe11, I am sorry that you and your mother are facing this diagnosis. My husband was diagnosed at age 65 with this similar and muscle invasive cancer. After surgery to remove the bladder diverticulum where the primary tumor was, as well as many lymph nodes, all but one were clear, he had chemo then BCG and monitoring with cystoscopy every 3 months. The frequent recurrence after two years pushed him to undergo radical cystectomy with neobladder looking for the cure. There are more medical options for treatment now than when he was initially treated. He tolerated the chemotherapy and bladder infusions well with minimal side effects. The surgeries were tough and recovery slow and difficult. If I were addressing this issue at a more advanced age such as your mother is, I would be considering her level of health and mobility and whether she could tolerate regular anesthesia for TURBTS as needed, or a big surgery like bladder removal. I might lean toward more conservative measures with medical treatment aimed at control. Many people live many years with regular TURBTS to control their bladder cancer, but they may have a less aggressive type of cancer. Your medical team should help with determining what her current health will tolerate in treatments. Always consider a second opinion at a large referral center if at all possible.

believe11 | @believe11 | 6 hours ago

My mother 88 year-old was just diagnosed with pathologic T1 high grade urothelial carcinoma of the bladder.
Any tips?

jaxfl | @jaxfl | 5 days ago

Thank you! Well done!

Colleen Young, Connect Director | @colleenyoung | 5 days ago

This week's member spotlight features a member of the Bladder Cancer group who many of you have crossed paths with. Learn more about @jaxfl, his bladder cancer journey, as well as some behind the scenes things you may not know like his hobby of tinkering on vintage computers, and why he eats his fries with mayonaise. 🙂

– French fries with mayonnaise: Meet @jaxfl https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/french-fries-with-mayonnaise-meet-jaxfl/

Check out all the Member Spotlights here and follow the About Connect blog for future update: https://connect.mayoclinic.org/page/about-connect/

dks2500 | @dks2500 | 5 days ago

In reply to @colleenyoung "@dks2500, these are great questions to ask your oncologist. Have you had a chance to speak..." + (show)

@colleenyoung yes, of course. But we are also interested in gaining an understanding of the opinions and experiences of patients as well.

lrb67 | @lrb67 | 5 days ago

In reply to @colleenyoung "@lrb67, did you get the results from the biopsies in the meantime and meet with the..." + (show)

@colleenyoung First thank you so much for asking and the interest. That alone makes me more comfortable with my situation. I did get the results of the biopsies.
1. Left Ureteral orifice showed Papillary urothelial carcinoma High grade Non-muscle invasive
2. Urinary bladder left lateral wall also non-invasive papillary urothelial carcinoma, high grade
3 Urinary bladder, right neck showed no cancer just mild chronic inflammation from enlarged prostate

My urologist stated the cancer was still stage A (not even stage 1)

He is having me do another 6 week BCG treatment and then follow-up with 3 week maintenance BCG every 3 months for 18 months

If he gets a window with the BCG treatments he would like to do BPH ablation on my prostate. Other than that, he recommended I lose some weight (I am 5'9" and weight 235 pounds. He suggested the Mediterranean Diet.

I have been talking to my brother and sister-in-law since my brother went through bladder cancer 14 years ago. My sister-in-law suggested Mitomycen immediately after TURBT and follow-up with BCG. Their experience also included 36 months of maintenance. Small differences between our cancers though. His was Stage 1 and mine is stage A. His started with a low-grade tumor grade 1 with no mitomycen or BCG following his TURBT. 6 months later it recurred with High grade stage 1. He received MitoMycen immediately after the TURBT, did the 6 week BCG with maintenance for 36 months. Thankfully my brother has been cancer free for 10 years.

Colleen Young, Connect Director | @colleenyoung | 5 days ago

In reply to @dks2500 "Greetings all. I’m an 82 yo male diagnosed with aggressive non-invasive BC, and am about to..." + (show)

@dks2500, these are great questions to ask your oncologist. Have you had a chance to speak with your team at Anschutz?

Colleen Young, Connect Director | @colleenyoung | 5 days ago

In reply to @dks2500 "Hi Colleen, could you tell me how to jump to a post I’ve bookmarked? Thank!" + (show)

@dks2500 , you can find your Bookmarks in your Profile.
1. Go to your Profile
- Click your username or the silhouette in the top right corner.
2. Select My Profile.
3. Select Bookmarks.