Bladder Cancer Group: Introduce yourself and connect with others

Hello @kittyhawk4 and welcome to bladder cancer support group. My husband had a high grade bladder cancer diagnosed at the age of 67 in 2019. The frequent recurrences, turbts, etc pushed him to have a radical cystectomy with neobladder in 2021. Along the way he had chemo, BCG, immunotherapy and many CT Urograms, cystoscopies and occasional PET scan. I can't say that he ever had all the symptoms you are describing. Some treatments left him with extreme fatigue and poor appetite or temporary bladder discomfort but those symptoms gradually resolved.
Initially his blood in the urine was misdiagnosed by local urologist and despite local cystoscopy and CT his tumor was missed. Only the abnormal cytology, which was ignored, was caught by a thorough doctor during an executive physical at Mayo Clinic. As a result most of his cancer care has been done at the Mayo in MN.
Because of our experience, I am quick to recommend a second and even third opinion when things just don't seem to be going right. Asking for a referral to a big cancer center or referral center can be a most important step. Sometimes, as difficult as it seems, travel for medical care can be lifesaving. We drive 10 hours to Mayo and have for 13 years for my rare head and neck cancer and I feel they are why I am alive today. You are your husband's best advocate and you both must take control of his medical care by researching and asking questions. It is never wrong to request a second opinion. Do you have a big referral center nearby?

Hi, my name is Daniella, my husband is 58 and diagnosed with low grade bladder cancer in August. Had a TURBT, they scraped the bladder and he received chemo. He has not recovered well since they surgery and seems to be declining, even though recheck of the bladder shows good healing/progress. Wondering if bladder cancer returns this quickly? Wondering if there is cancer somewhere else? Wondering if anyone else has had anything similar to this? If yes, please share! We are going down rabbit holes trying to figure out what to do to get him well. His symptoms currently are extreme fatigue, constantly taking deep breaths (sort of a yawn/gasp but not), sore legs, achy bones, bladder and abdomen pain, ongoing pain in left kidney which has been checked repeatedly and does not appear to be cancerous. Thanks so much everyone!

Thanks so much for the welcome and advice. Like everyone else I have a lot of anxiety.

I hope and pray that your BCG treatments go well! Will be thinking of you. Rest & drink plenty of fluids after your treatment.

I was diagnosed in 2020 with a tumor in my bladder. It was surgically removed. I have undergone many follow up minor surgeries to remove reoccurring cancer cells. I was treated with Gemzar for a year and a half until May of 2024. There was no cancer present again until December of 2024. The cancer returned as a high grade cancer, still non-invasive. I had two more surgeries and am about to start BCG therapy.

I send sincere sympathy. I am returning to Rochester today for another test and meeting with an oncologist. Neither were mentioned at my previous appointment and I understand your worry, this is so tough. Big hugs of encouragement as you go forward in treatments.

Hi @quirina, how did your first BCG treatment go? How are you doing?

Thanks very much. Really appreciate the site you moderate. I begin six weeks of BCG treatments March 31. Wondering what to expect by way of side effects inasmuch as our long Minnesota winter is moderating and the 2025 golf season is about to begin. We generally launch our season mid April. I'm wondering if I'll be able to play 18 holes. Also wondering if the treatments will exaggerate the incontinence I've had as a result of prostate cancer surgery.

Hi colleenyoung I did not know that I will do so and thank you so much for the information. The more I search for bc info the more I keep being directed to Mayo Clinic. Out of 125 best bc hospitals NEWS WEEK in 2023 ranked mayo clinic in rochester minn #1. I do truly love to fish for walleye and perch, ice fishing is the best time to fish for perch in sd, and do get out a dozen times a year. iam ready to hit the water. I wish all on this chat site a smooth road on your journey. and be assured you are all in my prayers 🙂

Hi @buena, Dave. Welcome. I encourage you to join one of the BCG-related discussions here:
- My journey with Bacillus Calmette-Guerin (BCG) treatment https://connect.mayoclinic.org/discussion/first-bcg-treatment/
See all: https://connect.mayoclinic.org/group/bladder-cancer/?search=BCG#discussion-listview

You might find this discussion from the Prostate Cancer group helpful with respect to incontinence. The guys have some great tips:
- Post Op Recommendations https://connect.mayoclinic.org/discussion/post-op-recommendations/

How many BCG treatments are part of your plan?