Bladder Cancer Group: Introduce yourself and connect with others

Hi all,

I am new to the group and wish I had known about this 7 years ago. I am an avid biker and after a long bike ride back in 2018, I saw blood in my urine. The local urologist I went to said he saw a tumor in my bladder. I was shocked as this does not run in family and am very healthy.
The surgeon removed the tumor which was a high grade but had not gotten into the bladder wall. I can thank the lord that it was detected early. Another month and it could have been a different recovery. I started BCG treatments for the next few months and made it through 90% until my body started to reject them.
Bladder was monitored via cystoscopy over the next 7 years, every 3 months , then 6 months and last 2 years it was yearly, all negative. It was starting to feel like I had gotten past this and my dr felt the same.
However, this last month, the scope revealed a small growth on the back wall of my bladder. After 7 years!!!
The surgery was yesterday and we are waiting on the pathology report to determine the next steps, bCG or other immunotherapy.
I wonder if there are any case studies or data to support using bCG as a preventive. The prior year, the scope was clean.
Has anyone had similar experiences?

Thanks for the kind words and golf invitation. Courses here in Rochester are beginning to open, but March can be a snowy month in Minnesota. I played in snow in my younger years, but wiser now. Hope your BCG treatments chase those cancer cells away. Also hope you have access to our Mayo Jacksonville facility. Thanks again for your well wishes.

I'm scheduled for six beginning March 31, then cystoscopy in June to check results. I've also had prostate and skin cancer and am wondering if cancer cells are looking for additional opportunities in and around my body. Also wondering how long it takes to determine if BCG immunotherapy is successful for my bladder cancer and what's next if it is not. I'm 84 and otherwise in generally good health. Thanks for your site recommendations. Helpful and much appreciated. Anxious to clean up my golf clubs for the 2025 season but wondering about energy levels and fatigue.

Good luck Dave. I start my BCG on April 10. I live in Florida. I'm fully expecting to hear that you are playing golf when your golf season begins. If you want to play in Florida, I have plenty of room.

My name is Jennifer, I am not the patient I'm here hoping to find information out to help my 78 year old father. He's not technologically savvy so I told him how helpful this website was when I was going through breast cancer and an aortic aneurysm surgery that I would put his story out and see if I can get him some advice.

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.