Bladder Cancer Group: Introduce yourself and connect with others

just diagnost with invasive bladder cancer in the muscles of the bladder really worried thanks

Hi everybody! I am 66, born and raised in The Netherlands and living in the USA for 22 years now. December 11th 2024, I saw blood in my urine, alarm bells went off, and the next day I was at my doctor's. Doctor first thought it was maybe a UTI but after some urine tests it was not. Within 10 days I had an appointment with a urologist, a week later a Cat Scan. Back to urologist nothing to be seen on Cat Scan but urologist, just to be sure, checked my bladder with camera and found a small tumor. Of course, I was in total shock since I hoped it was a kidney stone that caused the bleeding. 10 Days later I had a TURBT in combination with a 1-time chemo. Urologist told me that during the operation it was difficult to find the tumor but found it, took it out and saw my bladder looks fine and healthy, except for the small tumor on the edge of my bladder. Still, I hoped that would be it but out of prevention I will start BCG treatment coming Tuesday, March 11th. She is positive but I am absolutely not looking forward to it and to be honest I am scared to death. I try to stay positive but wow that is difficult even if my family is telling me I will be fine. My thoughts are with you all too and will follow your journey.

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?

@walleyebob, if you haven't done so already, you can request a second opinion from Mayo Clinic by calling them or filling out the online form. You can get started here: http://mayocl.in/1mtmR63

Do you ice fish too?

My journey with bladder cancer began last January. BCG # 1 is March 31 and ends May 5. Wondering about what to expect with BCG therapy discomfort/complications. I have substantial incontinence and live in a condo and am concerned about how best to deal with pads and diapers. Also wondering if I'll be up for golf once the Minnesota weather moderates.

Hi sepdvm Thank you for your wonderful and knowledgeable comments,I learned a lot from you. Please wish your husband and boys a wonderful 2025 fishing season,i fish south dakota lakes and the Missouri River. i have fished Lake Erie 6 times staying on Kelleys Island, a wonderful experience. A BCG infusion is something i will ask about.Thank you for answering my questions on Mayo Clinic I do believe Iam going to follow up with them. I will Pray and wish the best for your husband and family. Lake Erie should be getting good fishing about now ::))

Hi everybody! I am 66, born and raised in The Netherlands and living in the USA for 22 years now. December 11th 2024, I saw blood in my urine, alarm bells went off, and the next day I was at my doctor's. Doctor first thought it was maybe a UTI but after some urine tests it was not. Within 10 days I had an appointment with a urologist, a week later a Cat Scan. Back to urologist nothing to be seen on Cat Scan but urologist, just to be sure, checked my bladder with camera and found a small tumor. Of course, I was in total shock since I hoped it was a kidney stone that caused the bleeding. 10 Days later I had a TURBT in combination with a 1-time chemo. Urologist told me that during the operation it was difficult to find the tumor but found it, took it out and saw my bladder looks fine and healthy, except for the small tumor on the edge of my bladder. Still, I hoped that would be it but out of prevention I will start BCG treatment coming Tuesday, March 11th. She is positive but I am absolutely not looking forward to it and to be honest I am scared to death. I try to stay positive but wow that is difficult even if my family is telling me I will be fine. My thoughts are with you all too and will follow your journey.

@walleyebob praying to the Lord for you. It sounds as if you are doing really well. My husband had a cystoscopy which showed muscle invasive bladder cancer. He finished his first cycle ….which consisted of 1 day of Gemcitabine and Cisplatin . The next week just Gemcitabine and then 3rd week he had off. He did really well, thank God…no side effects. He starts Cycle 2 tomorrow, Monday…gem/cis. Praying everything goes well and he can continue working. He has 6 more treatments. Then, he gets a CT Scan…then a RC. We are so thankful to God that it was caught before the cancer spread. You are in my prayers and thank you for keeping my husband in your prayers….Prayer is very Powerful. God bless you, Rose

Hello @walleyebob. My husband and sons would like your moniker as they are frequent walleye fishermen on Lake Erie. Walleye in the freezer is a wonderful thing!
My husband followed much the same path that you are except for initial chemo and then BCG because the first tumor was muscle invasive and one positive l. node. Diagnosed in 2019, he was on 3-4 month rechecks at Mayo Rochester and every time there was either a tumor or a site to watch that developed into one. He got tired of the constant scopes and surgeries and elected to have a radical cystectomy/prostatectomy with neobladder formation in 2021 also at Mayo. Despite many complications postop for 2 years, he is still cancer free and glad he did the surgery. Self cathing becomes a part of your life that you might never have imagined pre cancer.
In our experience the same basic pattern seems to be accepted at Mayo as well. They have a survivorship clinic that monitors the rechecks, performs the cystos, and arranges further surgery as needed. Some patients continue this for many years. Having a high grade aggressive tumor most likely increases the risk of recurrence. Have you had any BCG infusions to see if that local immunotherapy will decrease the frequency of tumors? My husband was a BCG failure because once on maintenance infusions, the tumors started back. It has been hard to come by so a smaller hospital may not be able to offer it. You can also try to arrange a video visit with a Mayo urology surgeon after sending in all your records. Im not sure if they have a Urology Oncologist yet or not. We were told they were working on having that position filled at Rochester.