Bladder Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, May 17 3:57pm

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 | Jun 23 12:27pm

In reply to @jcold5619 "I’m glad you are doing well. Kind of an off the wall question but thought I..." + (show)

Hello @jcold5619
My husband had the neobladder surgery at Mayo Clinic in 2021. It was fully covered by Medicare and our secondary insurance Med Mutual at that time. Most of the coverage was Medicare. He has had several complications from immediately after surgery until last spring, but is still glad that he chose this surgery and does not deal with a stoma. Others have had better luck with their surgery ,but it is still a huge undertaking and a rough week in the hospital postop. Do you have surgery scheduled?

Sue, Volunteer Mentor | @sepdvm | Jun 23 11:35am

In reply to @crtrucker "just diagnost with invasive bladder cancer in the muscles of the bladder really worried thanks" + (show)

Hello crtrucker. So sorry to hear of your diagnosis. My husband had that diagnosis in 2019. After partial cystectomy, chemotherapy, BCG, and an immunotherapy trial, he chose to have a radical cystectomy with neobladder creation at MAyo Clinic. he is cancer free currently. That is a massive surgery to go through with many potential complications but he is happy that he made that choice. There is more research currently into bladder sparing treatments that you should inquire about. Travel to a major cancer center for a second opinion is always worthwhile. Do you have one nearby? We drive 10 hours for our cancer care at Mayo in Rochester. We feel like we are both alive today because of their care. I have been a patient for 12 years there.

dldinsd | @dldinsd | Jun 22 4:01pm

In reply to @shester "I completely understand being overwhelmed with the news. No one in my family has ever had..." + (show)

I will not be having a 2nd TURBT. I start BCG on July 9th. This forum has been very helpful. @shester - are you doing all your procedures locally or are you at a Mayo facility? Wondering if local doctors recommend Mayo or you just proceed on your own. Thanks for your reply. Every one helps.

Robert Steen | @steenrl | Jun 22 1:25pm

In reply to @schew5515 "We will meet with Dr to discuss treatment. Slightly worried the Dr mentioned the reading was..." + (show)

I'm thinking that grading tumors is a little subjective and these change with time. Perhaps the first reading of low was on the cusp of something higher and between then and the most recent reading it transitioned higher. From what I understood, it was whether or not the tumor had penetrated the muscle that was most important.
I wish your husband all the best going forward but losing the bladder is not the end of the world as I can testify. Mayo will do the best for him and if it comes to it; I would encourage he consider a neobladder procedure. Mayo is on the leading edge.

schew5515 | @schew5515 | Jun 22 11:45am

In reply to @shester "Hi, been a bystander in the group for a little bit. It took me a while..." + (show)

My husband journey with started April 12th. We were with one Dr who was so rude and direspectful after initially hearing this. Glad we got into Mayo June 7th had second turbt.
Yesterday we learned it is not low grade as previous thought but high grade. My husband appetite has plummeted he seems more tired we have not even started treatment. I'm worried.

They also said he results where unusual not sure what to think of this. Not in the muscle but present. We will have an appointment soon. The initial stage was T1. Now I'm not sure.

schew5515 | @schew5515 | Jun 22 11:36am

In reply to @steenrl "I was diagnosed with bladder cancer about 4 years ago and tried to beat it with..." + (show)

We will meet with Dr to discuss treatment. Slightly worried the Dr mentioned the reading was unusual. Not sure how to take this. He did say it is not invasive but originally first Dr not at Mayo said it was low grade. Now Mayo said it is high grade.

Colleen Young, Connect Director | @colleenyoung | Jun 21 8:53am

In reply to @soniamargarita "Hola, mi nombre es Sonia, tengo 61 años y fui diagnosticada en octubre 2023 con CARCINOMA..." + (show)

@soniamargarita, it so good to hear positive stories. Thank goodness you did not delay in seeking medical attention when you saw signs of blood in your urine. Early detection is not always possible with bladder cancer. I'm glad to hear your story.

I wish you all the best for the upcoming follow-up appointment in August and look forward to hearing your update.

Sue | @swh | Jun 19 10:03am

In reply to @shester "I am also HGT1 - I don't want to jinx myself but my BCG treatments have..." + (show)

Thanks so much. That's encouraging. I have a month to heal & then start 6 weekly intravesical treatments.

dldinsd | @dldinsd | Jun 18 11:56pm

In reply to @swh "2nd opinions are good. My diagnosis changed from low grade non-invasive to HGT1 with the 2nd..." + (show)

@swh - thanks so much for your input.

Sheila | @shester | Jun 18 10:11am

In reply to @swh "2nd opinions are good. My diagnosis changed from low grade non-invasive to HGT1 with the 2nd..." + (show)

You are right, it is a good idea!

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