Bladder Cancer Group: Introduce yourself and connect with others

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 Quirina staying positive is so hard to do even when our loved ones are supporting us. you have heard the phase, only those who have warn my shoes totally understand. But it is nice to have family and friends support. I wish you great success with your treatment and a fast recovery 🙂

hello everyone, first time on this chat site. First of all I want to wish you all Gods blessings and a positive outcome. Heres my story, 2 years ago I was diagnosed with noninvasive papillary high grade urothelial carcinoma bladder cancer. (no muscle involvement). Dr removed a tumor, and said come back in six months to do a cystoscopy,I did and no tumor was found. Dr said come back in 6 more months and do another cystoscopy, I did at that time Dr removed a small tumor at that time. Dr said do another cystoscopy in 6 months I did and no tumor found. Now up to date, I did a cystoscopy last week and a small tumor was found and will have it removed at the hospital next week. I'am questioning this 2 year routine I have had. Iam being treated at a small hospital and am wondering what you all think if Mayo Clinic might have a better treatment plan for my situation. .Any comment appreciated,and as I said earlier my prayers are with all of you during these tough times.

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.

hello everyone, first time on this chat site. First of all I want to wish you all Gods blessings and a positive outcome. Heres my story, 2 years ago I was diagnosed with noninvasive papillary high grade urothelial carcinoma bladder cancer. (no muscle involvement). Dr removed a tumor, and said come back in six months to do a cystoscopy,I did and no tumor was found. Dr said come back in 6 more months and do another cystoscopy, I did at that time Dr removed a small tumor at that time. Dr said do another cystoscopy in 6 months I did and no tumor found. Now up to date, I did a cystoscopy last week and a small tumor was found and will have it removed at the hospital next week. I'am questioning this 2 year routine I have had. Iam being treated at a small hospital and am wondering what you all think if Mayo Clinic might have a better treatment plan for my situation. .Any comment appreciated,and as I said earlier my prayers are with all of you during these tough times.

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.

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.

@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

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.