Newly diagnosed with high-grade NMIBC. Anxious for support.

Posted by littlemom @littlemom, Jan 1 11:08am

Hi, My name is Anne. I was recently diagnosed with high grade nmibc and am half way through my BCG treatments. If I find out my cancer has returned, should I look at other medications, second opinions? Trying to be as proactive as possible. Just turned 71 and in good health…not wanting this to go into the bladder muscle due to not seeking out the best options

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Colleen Young, Connect Director | @colleenyoung | Jan 1 7:26pm

Welcome @littlemom. I'm bringing in a few members like @krgordon @ricardin2 @quahog @bethcamp @deb2024 @djr5 who have experience with non-muscle invasive bladder cancer (NMIBC) and can offer tips and support.

Anne, I can imagine you are anxious for support. It's so scary to hear the words "you have cancer" and to be launched into treatments. I see you are halfway through BCG (Bacillus Calmette-Guérin) treatment and you are concerned about the cancer returning.

Am I correct in assuming that you've had 3 treatments and you are scheduled for testing to see how the cancer has responded to treatment? How are you doing?

quahog | @quahog | 6 days ago

I was in the same situation as you except I’m 80 but also in very good health. I have had the initial six BCG treatments after TURBT, three maintenance doses at three months and I am on my second three maintenance doses at six months. Cystoscopy had been clear and I’m confident that BCG is doing its job. The data for its efficacy in preventing reoccurrence is very very positive. I think if u submit to BCG maintenance and periodic cystoscopy you are taking the best path available but every case is unique and you have to make up your own mind after getting as much info as possible. For me the standard protocol has worked, at least so far. It’s been a year since my initial diagnosis and I’m NED so that works for me regardless that I have short term side effects from the BCG. It’s much better than the alternative. Good luck.

scott232 | @scott232 | 5 days ago

Ann. Ive had bladder cancer almost two yrs. Two surgeries, regimen of BCG. Did not work for me. Finishing 12 month Gem/Doc chemo. Cancer not evident as of yet. Lots of options for you going forward. Keep the faith.

djr5 | @djr5 | 4 days ago

Hi Anne. My experience with NMIBC the last two years has been more a journey than an event, so far. I have confidence, based on my own experience, in my doctors, the treatments I have received and am receiving, and the advances being made in developing new treatments. This is my experience, so far:

I am 71 and was diagnosed with low-grade NMIBC in December 2023. I had a TURBT in January 2024, immediately followed by one Mitomycin treatment. I had six BCG treatments and was in remission by June 2024. In January 2025, the doctor found high-grade NMIBC with carcinoma in situ. Rather than surgery, I began Adstiladrin treatments, receiving the first in March of 2025. A cystoscopy in early June 2025 came back clear and I received a second Adstiladrin treatment later in June. A follow-up cystoscopy in early September found a tumor. A CAT scan performed later in September showed tumors, and a biopsy was scheduled. I had an another Adstiladrin treatment in late September. I had surgery in late October but no biopsy, as no tumors were found. My doctor couldn't explain how the tumors disappeared. The doctor did find thickened tissue in my right ureter near the kidney and biopsied it by "brushing," not cutting. Pathology testing results showed no malignancy, but was based on a sample containing too few cells for a confident diagnosis, the pathologist said. Some of the cells examined were squamous, some had no nuculi. The doctor placed a 10-inch stent in my right ureter (later removed.) By November, the doctor said no upper urinary tract urothelial cancer was found, or expected. I had a PET scan done in early December, and my prostate showed a very high SUV (6.6). Last week, a PHI test was done (results pending), and a prostate biopsy may be next. If it is prostate cancer , it will likely require a second, different course of treatment, in addition to the ongoing bladder cancer treatment. My next Adstiladrin treatment is Tuesday.

For me, day-to-day challenges in the mental, emotional, psychological and spiritual realms take up far more of my cognative capacity than the strictly medical decisions. Discouragement is the real danger.

I hope that your encounter with cancer is brief, and that your treatment is wholly successful. But, whatever may come, never give up. Life is a gift and it is good.