Life After NMIBC Treatment: Adjusting to Your New Normal

Polygon Health Team
May 13
5 min read

Updated: May 14

Introduction

Non-muscle invasive bladder cancer (NMIBC) represents approximately 75% of all newly diagnosed bladder cancer cases and includes stages Ta, T1, and carcinoma in situ (CIS) [1]. While the survival rates for NMIBC are generally favorable, with 5-year survival rates exceeding 90% for Ta and T1 tumors [2], the journey after treatment involves significant adjustments and ongoing care. This guide aims to help NMIBC survivors navigate life after treatment, focusing on follow-up care, physical and emotional well-being, and strategies for maintaining quality of life.

Understanding Your Follow-Up Care Plan

Surveillance Schedule

After NMIBC treatment, regular surveillance is crucial due to the high risk of recurrence, which can be up to 70% within five years [3]. The American Urological Association (AUA) and European Association of Urology (EAU) recommend the following surveillance schedule based on risk stratification [4,5]:

Low-Risk NMIBC:

Cystoscopy at 3 months, then annually for 5 years
Upper tract imaging typically not required unless clinically indicated

Intermediate-Risk NMIBC:

Cystoscopy every 3-6 months for 2 years, then every 6-12 months for years 3-4, then annually
Upper tract imaging every 1-2 years

High-Risk NMIBC:

Cystoscopy every 3 months for 2 years, then every 6 months for years 3-4, then annually
Upper tract imaging annually
Urine cytology with each cystoscopy

What to Expect During Follow-Up Visits

Follow-up appointments typically include [6]:

Cystoscopy: An endoscopic procedure to visually examine the bladder lining
Urine tests: Cytology to detect cancer cells and sometimes molecular marker tests
Imaging: CT urography, MRI, or ultrasound to evaluate the upper urinary tract
Physical examination: Assessment of overall health and treatment-related side effects
Discussion: Review of symptoms, concerns, and quality of life issues

Managing Physical Changes and Side Effects

Urinary Function

Many NMIBC survivors experience changes in urinary function following treatment, particularly after intravesical therapy [7]:

Frequency and urgency: Up to 80% of patients report increased frequency following BCG treatment
Dysuria (painful urination): Common during and immediately after intravesical therapy courses
Blood in urine: May occur temporarily after procedures or treatments

Management strategies:

Scheduled voiding to manage frequency
Pelvic floor exercises to improve control
Staying well-hydrated while avoiding bladder irritants like caffeine, alcohol, and spicy foods
Consulting with your urologist about medications that may help manage symptoms

Sexual Function

Sexual changes are common but often underdiscussed aspects of bladder cancer survivorship [8]:

Men: May experience erectile dysfunction or changes in ejaculation
Women: May experience vaginal dryness, pain during intercourse, or reduced desire
All genders: Body image concerns and psychological factors affecting intimacy

Management approaches:

Open communication with healthcare providers about sexual concerns
Consultation with sexual health specialists when needed
Exploring intimacy-enhancing strategies beyond traditional sexual activity
Considering psychological support to address body image concerns

Fatigue and Energy Management

Cancer-related fatigue affects approximately 30-40% of bladder cancer survivors [9]:

Practice energy conservation by prioritizing activities
Engage in regular moderate physical activity, which paradoxically reduces fatigue
Maintain good sleep hygiene
Consider complementary approaches like mindfulness meditation

Emotional Well-being and Psychological Adjustment

Common Psychological Challenges

NMIBC survivors frequently report psychological distress [10]:

Fear of recurrence: Affects up to 50% of bladder cancer survivors
Scanxiety: Anxiety specifically related to surveillance procedures
Depression: More prevalent among cancer survivors than the general population
Post-traumatic stress symptoms: Can develop in response to cancer diagnosis and treatment

Coping Strategies

Evidence-based approaches to psychological well-being include [11]:

Professional support: Psycho-oncology services, counseling, or therapy
Peer support: Connecting with other bladder cancer survivors through support groups
Mindfulness-based stress reduction: Shown to reduce anxiety and improve quality of life
Cognitive-behavioral techniques: Help manage negative thought patterns and fears

Lifestyle Modifications for Long-term Health

Nutrition

While no specific diet has been proven to prevent bladder cancer recurrence, healthy eating habits support overall well-being [12]:

Emphasize plant-based foods, including fruits, vegetables, whole grains, and legumes
Maintain adequate hydration with 6-8 glasses of water daily
Limit processed foods, red meat, and foods high in saturated fats
Consider working with a nutritionist experienced in oncology

Physical Activity

Regular physical activity provides multiple benefits for cancer survivors [13]:

Reduces fatigue and improves quality of life
May reduce risk of recurrence for some cancer types
Helps manage weight and improve cardiovascular health
Recommended: 150 minutes of moderate-intensity activity per week, when medically cleared

Smoking Cessation

For those who smoke, quitting is crucial [14]:

Smoking is associated with a 2-4 times higher risk of bladder cancer recurrence
Continued smoking may reduce the effectiveness of treatments
Quitting improves overall health outcomes and quality of life
Resources include medication, counseling, and support groups

Practical Aspects of Survivorship

Financial Considerations

Financial toxicity affects many cancer survivors [15]:

Healthcare costs: Ongoing surveillance and potential treatments
Insurance navigation: Understanding coverage for follow-up care
Employment considerations: Workplace accommodations and disability benefits if needed
Financial planning: Budgeting for long-term care needs

Travel Planning

Bladder cancer surveillance shouldn't prevent you from traveling [16]:

Schedule trips around follow-up appointments when possible
Carry medical information, including treatment history
Investigate healthcare facilities at your destination
Consider travel insurance that covers pre-existing conditions

Building Your Support Network

Strong social support is associated with better quality of life among cancer survivors [17]:

Healthcare team: Maintain open communication with all providers
Family and friends: Educate them about your needs and limitations
Support groups: Both in-person and online communities can provide valuable insights
Advocacy: Many find purpose in getting involved with bladder cancer awareness efforts

Conclusion

Life after NMIBC treatment involves adjusting to a new normal that includes regular surveillance, managing physical and emotional changes, and making lifestyle modifications that support long-term health. By taking an active role in your survivorship care and utilizing available resources, you can maintain quality of life while effectively monitoring for recurrence. Remember that each survivor's experience is unique, and personalized approaches to care are essential.

References

Babjuk M, et al. European Association of Urology Guidelines on Non-muscle-invasive Bladder Cancer (TaT1 and Carcinoma In Situ) - 2023 Update. Eur Urol. 2023;83(1):37-54.
American Cancer Society. Cancer Facts & Figures 2024. Atlanta: American Cancer Society; 2024.
Sylvester RJ, et al. Predicting recurrence and progression in individual patients with stage Ta T1 bladder cancer using EORTC risk tables: a combined analysis of 2596 patients from seven EORTC trials. Eur Urol. 2006;49(3):466-475.
Chang SS, et al. Diagnosis and Treatment of Non-Muscle Invasive Bladder Cancer: AUA/SUO Guideline. J Urol. 2016;196(4):1021-1029.
Witjes JA, et al. European Association of Urology Guidelines on Muscle-invasive and Metastatic Bladder Cancer: Summary of the 2023 Guidelines. Eur Urol. 2023;83(4):352-368.
National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology: Bladder Cancer. Version 1.2024.
Koya MP, et al. Complications of intravesical therapy for urothelial cancer of the bladder. J Urol. 2006;175(6):2004-2010.
Goldfarb S, et al. Sexual health and rehabilitation after ovarian suppression treatment (SHARE-OS): a clinical intervention for young breast cancer survivors. J Cancer Surviv. 2020;14(1):26-30.
Mitchell SA, et al. Cancer-related fatigue: state of the science. PM R. 2010;2(5):364-383.
Mohamed NE, et al. Muscle invasive bladder cancer: examining survivor burden and unmet needs. J Urol. 2014;191(1):48-53.
Piet J, et al. The effect of mindfulness-based cognitive therapy for prevention of relapse in recurrent major depressive disorder: a systematic review and meta-analysis. Clin Psychol Rev. 2011;31(6):1032-1040.
World Cancer Research Fund/American Institute for Cancer Research. Diet, Nutrition, Physical Activity and Cancer: a Global Perspective. Continuous Update Project Expert Report 2018.
Campbell KL, et al. Exercise Guidelines for Cancer Survivors: Consensus Statement from International Multidisciplinary Roundtable. Med Sci Sports Exerc. 2019;51(11):2375-2390.
Crivelli JJ, et al. Effect of smoking on outcomes of urothelial carcinoma: a systematic review of the literature. Eur Urol. 2014;65(4):742-754.
Zafar SY, et al. The financial toxicity of cancer treatment: a pilot study assessing out-of-pocket expenses and the insured cancer patient's experience. Oncologist. 2013;18(4):381-390.
Morag A, et al. Medical recommendations and travelers behavior. J Travel Med. 2002;9(5):270-273.
Kroenke CH, et al. Social networks, social support, and survival after breast cancer diagnosis. J Clin Oncol. 2006;24(7):1105-1111.