Non–Muscle-Invasive Bladder Cancer (NMIBC) Patient Experiences

While there are treatments available for NMIBC, they may not be effective for all patients and are often associated with physical, emotional, and logistical challenges for both patients and caregivers.

Rick, Age 51 Currently undergoing BCG, Not an actual patient
Rick, age 51
Currently Undergoing Bacillus Calmette–Guérin (BCG)
Not an actual patient.
Occupation: Construction worker
Lifestyle: Loves barbecuing with his family
Marital status: Married
Support: Wife and 2 sons are his caregivers

Beyond the physical challenges of bladder cancer and treatment, both patients and caregivers face emotional and logistical challenges. Rick worries about his family being exposed to his BCG.

  • Patients undergoing BCG treatment receive intravesical administration, which requires a catheter to be inserted through the urethra into the bladder1
    • Throughout the initial induction period, treatment is administered once a week for 6 weeks
  • After administration, patients are required to hold BCG in their bladder for at least 2 hours, during which they may experience burning or pain, and they may need to roll from side to side to facilitate coating the bladder with the treatment fluid1,2
    • After completing the procedure, patients need to void/release the BCG1
  • Patients or caregivers must take precautions to clean the toilet so as not to expose others to the live attenuated bacteria in BCG1
References:
  1. Pietrangelo A, Hobbs H. BCG treatment for bladder cancer: usage, efficacy, side effects, and more. Healthline. Updated May 22, 2023. Accessed February 14, 2024. https://www.healthline.com/health/bladder-cancer/bcg-treatment-for-bladder-cancer#efficacy

  2. Treating bladder cancer. American Cancer Society. Accessed March 13, 2024. https://www.cancer.org/cancer/types/bladder-cancer/treating.html

William, Age 72, BCG treatment interrupted, Not an actual patient
William, age 72
BCG Treatment Interrupted
Not an actual patient.
Occupation: Owner of textile factory
Lifestyle: Works long hours
Marital status: Widower
Support: Daughter is his caregiver

William went through 3 rounds of BCG, but experienced difficulty with shortages. He responded to therapy, but worries about recurrence.

  • In a retrospective cohort study of patients with high-risk NMIBC (N=139), those who received a lower dose of BCG due to potential supply issues were at significantly greater risk of recurrence1
    • ~39% of patients who received a reduced dose of BCG relapsed within 1 year
  • Up to half of BCG responders may experience progression or recurrence within 6 months2
    • Many patients will be offered a second course of or maintenance BCG2,3
    • Patients who are unresponsive to BCG, or who experience recurrence or progression, may have limited treatment options3
    • In high-risk patients radical cystectomy may be the preferred treatment3
References:
  1. Ostrowski DA, Chelluri RR, Herzig M, et al. Diminished short-term efficacy of reduced-dose induction BCG in the treatment of non-muscle invasive bladder cancer. Cancers (Basel). 2023;15(14):3746. doi:10.3390/cancers15143746

  2. Kamat AM, Flaig TW, Grossman HB, et al. Consensus statement on best practice management regarding use of intravesical immunotherapy with BCG for bladder cancer. Nat Rev Urol. 2015;12(4):225-235. doi:10.1038/nrurol.2015.58

  3. Referenced with permission from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) Bladder Cancer V3.2024. © National Comprehensive Cancer Network, Inc. 2024. All rights reserved. Accessed April 22, 2024. To view the most recent and complete version of the guideline, go online to NCCN.org. NCCN makes no warranties of any kind whatsoever regarding their content, use or application and disclaims any responsibility for their application or use in any way.

Michelle, Age 44, BCG-unresponsive, Not an actual patient
Michelle, age 44
BCG-Unresponsive
Not an actual patient.
Occupation: Teacher
Lifestyle: Active social life
Marital status: Married
Support: Her husband is her caregiver

Michelle’s cancer progressed after several rounds of BCG, and she is now considered BCG-unresponsive. Her doctor is recommending radical cystectomy (RC). Michelle is concerned about how her body will be different after RC and how it may affect her relationship with her husband.

  • Cystectomy often affects adjacent organs1
    • In females, the surgeon may also remove the uterus, fallopian tubes, ovaries, and sometimes part of the anterior vagina, depending on the location of the tumor
  • Post cystectomy, patients require an alternative method (a urinary diversion) to empty their bladder2
    • Options for urinary diversion include incontinent stoma (ileal conduit procedure), continent urinary reservoir catheterized by the patient, or a continent urinary reservoir connected to the urethra (orthotopic neobladder)
References:
  1. Aminoltejari K, Black PC. Radical cystectomy: a review of techniques, developments and controversies. Transl Androl Urol. 2020;9(6):3073-3081. doi:10.21037/tau.2020.03.23

  2. Mohamed NE, Chaoprang HP, Hudson S, et al. Muscle invasive bladder cancer: examining survivors’ burden and unmet needs. J Urol. 2014;191(1):48-53. doi:10.1016/j.juro.2013.07.062