Bladder Cancer Group: Introduce yourself and connect with others

@141emp
Thank you and that is the reason I decided to join the group, to learn more about the latest treatments and exchanging information.

@hummelb99 welcome to this great group. I have different type of bladder cancer and find it to be a good source of reliable information, advice and support.

I am 82 years old, and have recently been diagnosed with high risk non-muscle invasive bladder cancer.
The Vesta lab reported that I am not a candidate for BCG.
I have had 1 treatment of chemo with gemcitabine/docetaxel and shall have 5 more with 1week intervals.
A cystoscope after 3 months to see if the treatment was successful.
Before I received the diagnosis, I labored 1 year with UTIs, lots of pain and was always told I had overactive bladder. I went for acupuncture, pelvic PT and took 6 different antibiotics during the year.
Had 17 Abdominal Urine Analysis - all the same - blood and protein,
4 CT Scans showing fluid around the kidney, MRI w/contrast, Ultrasound w/nuclear meds, 2 cystoscopes and 1 biopsy, which showed 2 kinds of cancer and diagnosed with urothelial carcinoma of the bladder.
I still have not fully internalized that I have cancer and will have to be treated the rest of my life.
I have never belonged to a support group but hope to communicate with women with similar cancer.

Hello @believe11, I am sorry that you and your mother are facing this diagnosis. My husband was diagnosed at age 65 with this similar and muscle invasive cancer. After surgery to remove the bladder diverticulum where the primary tumor was, as well as many lymph nodes, all but one were clear, he had chemo then BCG and monitoring with cystoscopy every 3 months. The frequent recurrence after two years pushed him to undergo radical cystectomy with neobladder looking for the cure. There are more medical options for treatment now than when he was initially treated. He tolerated the chemotherapy and bladder infusions well with minimal side effects. The surgeries were tough and recovery slow and difficult. If I were addressing this issue at a more advanced age such as your mother is, I would be considering her level of health and mobility and whether she could tolerate regular anesthesia for TURBTS as needed, or a big surgery like bladder removal. I might lean toward more conservative measures with medical treatment aimed at control. Many people live many years with regular TURBTS to control their bladder cancer, but they may have a less aggressive type of cancer. Your medical team should help with determining what her current health will tolerate in treatments. Always consider a second opinion at a large referral center if at all possible.

My mother 88 year-old was just diagnosed with pathologic T1 high grade urothelial carcinoma of the bladder.
Any tips?

Thank you! Well done!

This week's member spotlight features a member of the Bladder Cancer group who many of you have crossed paths with. Learn more about @jaxfl, his bladder cancer journey, as well as some behind the scenes things you may not know like his hobby of tinkering on vintage computers, and why he eats his fries with mayonaise. 🙂

– French fries with mayonnaise: Meet @jaxfl https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/french-fries-with-mayonnaise-meet-jaxfl/

Check out all the Member Spotlights here and follow the About Connect blog for future update: https://connect.mayoclinic.org/page/about-connect/

@colleenyoung yes, of course. But we are also interested in gaining an understanding of the opinions and experiences of patients as well.

@colleenyoung First thank you so much for asking and the interest. That alone makes me more comfortable with my situation. I did get the results of the biopsies.
1. Left Ureteral orifice showed Papillary urothelial carcinoma High grade Non-muscle invasive
2. Urinary bladder left lateral wall also non-invasive papillary urothelial carcinoma, high grade
3 Urinary bladder, right neck showed no cancer just mild chronic inflammation from enlarged prostate

My urologist stated the cancer was still stage A (not even stage 1)

He is having me do another 6 week BCG treatment and then follow-up with 3 week maintenance BCG every 3 months for 18 months

If he gets a window with the BCG treatments he would like to do BPH ablation on my prostate. Other than that, he recommended I lose some weight (I am 5'9" and weight 235 pounds. He suggested the Mediterranean Diet.

I have been talking to my brother and sister-in-law since my brother went through bladder cancer 14 years ago. My sister-in-law suggested Mitomycen immediately after TURBT and follow-up with BCG. Their experience also included 36 months of maintenance. Small differences between our cancers though. His was Stage 1 and mine is stage A. His started with a low-grade tumor grade 1 with no mitomycen or BCG following his TURBT. 6 months later it recurred with High grade stage 1. He received MitoMycen immediately after the TURBT, did the 6 week BCG with maintenance for 36 months. Thankfully my brother has been cancer free for 10 years.

@dks2500, these are great questions to ask your oncologist. Have you had a chance to speak with your team at Anschutz?