It's Okay To Not Be Okay: Managing Anxiety After an NMIBC Diagnosis

Polygon Health Team
May 13
15 min read

Updated: May 14

A cancer diagnosis can fundamentally alter an individual's life, and the news that one has Non-Muscle Invasive Bladder Cancer (NMIBC) is no exception. It is a pivotal moment that can trigger a cascade of emotions. Experiencing a wide spectrum of feelings, including significant anxiety, is a normal and understandable response to such news.1 When a physician delivers the words "you have bladder cancer," the emotional impact can be profound.1 These emotional side effects can encompass sadness, anxiety, anger, resentment, stress, fear, uncertainty, and even guilt, potentially leading to a loss of positive self-image.1 Similarly, being told you have cancer can leave individuals feeling shocked and upset, possibly accompanied by feelings of numbness, fright, confusion, and anger.2 Many individuals with bladder cancer report experiencing various emotions that can fluctuate over time as they navigate diagnosis, treatment, and survivorship.3 Therefore, this report aims to acknowledge the significant emotional impact of an NMIBC diagnosis and offer evidence-based coping strategies and resources to help manage the anxiety that often accompanies it.

Beyond the initial shock of diagnosis, the management of NMIBC often involves a strict surveillance program and the ever-present risk of recurrence, both of which can significantly affect a patient's mental well-being.5 The need for frequent hospital visits for re-examination and treatment after the initial transurethral resection of bladder tumor (TURBT) can create a substantial mental burden.6 Even though the five-year overall survival rate for NMIBC is relatively high, the rate of recurrence is also considerable, necessitating successive cystoscopies and adjuvant treatments.5 This chronic aspect of NMIBC management, with its inherent uncertainties and regular reminders through check-ups, acts as a persistent source of anxiety, distinct from the initial emotional upheaval following the diagnosis.

Understanding the specific factors that contribute to anxiety after an NMIBC diagnosis is crucial for developing effective management strategies. One of the primary drivers of anxiety in this patient population is the fear of recurrence, a well-founded concern given the high likelihood of the cancer returning.8 This fear can be triggered by routine follow-up appointments or even seemingly minor health issues, creating a constant background of worry.8 The statistical reality of recurrence in NMIBC fosters a persistent apprehension about the future and the potential need for further medical interventions. This anxiety can become so significant that it interferes with daily life.8

Another significant source of anxiety stems from the uncertainty surrounding treatment outcomes and future health.1 The unpredictable nature of cancer and its response to treatment can lead to considerable anxiety.8 Patients may grapple with questions about the effectiveness of the treatment, potential side effects, and their long-term quality of life. This lack of definitive assurances about achieving remission and maintaining it can erode a patient's sense of control over their health, further intensifying anxiety.2 Incomplete information during the diagnostic and treatment phases can exacerbate this feeling of uncertainty and trigger anxiety.8

Treatment for NMIBC, which may include surgical interventions and intravesical therapies, can also lead to changes in body function and body image, contributing to anxiety.2 Procedures like radical cystectomy can result in the need for a urostomy, a significant change that can impact how patients perceive themselves and interact with others.2 Even less invasive treatments can cause alterations in urinary function, which, due to the personal and intimate nature of these bodily processes, can be particularly distressing and anxiety-provoking.12 Concerns about leakage, the management of ostomy appliances, and changes in sexual function can all contribute to feelings of embarrassment, shame, and anxiety related to social situations and intimacy, ultimately affecting self-esteem and overall mental well-being.2

The diagnosis and management of NMIBC can also have a broad impact on various aspects of daily life, leading to increased anxiety levels.2 The need to attend numerous medical appointments, cope with potential side effects such as fatigue, and manage the financial implications of cancer care can disrupt established routines and strain interpersonal relationships.2 The economic burden associated with medical expenses can be a significant source of worry for patients and their families.6 Balancing work responsibilities, managing household chores, and maintaining social connections while dealing with the physical and emotional toll of NMIBC can create a complex web of stressors that contribute to anxiety.

Finally, the emotional journey following an NMIBC diagnosis is often described as an unpredictable rollercoaster, with fluctuating emotions that can themselves be a source of anxiety.1 Patients may experience a range of emotions, including shock, denial, anger, depression, hope, and readjustment, often cycling through these stages at different speeds and sometimes revisiting previous stages.1 Understanding that these emotional ups and downs are a normal part of the process can help patients feel less anxious about their own emotional responses and reduce the fear that something is wrong with how they are coping. Recognizing the dynamic nature of these feelings can provide a sense of validation and reduce the anxiety associated with perceived emotional instability.

Fortunately, there are several evidence-based coping strategies that individuals diagnosed with NMIBC can utilize to manage their anxiety. Cognitive Behavioral Therapy (CBT) is a particularly effective approach that helps patients identify and manage negative thought patterns that contribute to anxiety, such as catastrophic thinking.8 By learning to recognize and challenge these unhelpful thoughts, patients can gain a greater sense of control over their emotional responses and reduce the intensity of their anxiety.8 CBT provides tangible tools and techniques to modify thought patterns and behaviors that perpetuate anxiety, offering a structured path toward managing worries.16

Mindfulness and meditation techniques offer another set of powerful tools for managing anxiety by focusing attention on the present moment, thereby reducing worry about future uncertainties.8 These practices can help interrupt the cycle of anxious thoughts and cultivate a sense of calm and inner peace.8 Simple techniques such as quiet reflection, deep breathing exercises, and gratitude practices, when performed regularly, can improve overall well-being and happiness.19 Mindfulness meditation, in particular, involves bringing non-judgmental awareness to each moment, which can be a valuable way of coping with difficult emotions.20

Relaxation exercises, including deep breathing, progressive muscle relaxation, and guided imagery, can also be highly effective in reducing the physical tension that often accompanies anxiety.8 These techniques provide practical and immediate ways to alleviate the physical manifestations of anxiety, offering a sense of relief and control.8 By consciously relaxing muscles and focusing on breath, individuals can send signals to the brain that promote calmness and reduce feelings of unease.8

Engaging in physical activity and exercise on a regular basis has also been shown to significantly reduce anxiety and improve mood in cancer patients.4 Exercise releases endorphins, which have mood-boosting effects, and provides a healthy outlet for stress and worry.4 Activities such as walking, yoga, tai chi, or even light exercise can help clear the mind and reduce stress levels.4 Maintaining an active lifestyle can also combat side effects of treatment like fatigue and depression.4

Pursuing hobbies and engaging in activities that bring joy and a sense of purpose can serve as a valuable distraction from worries and contribute to improved overall well-being.4 Maintaining a connection to personal interests and sources of pleasure can provide a much-needed sense of normalcy and resilience during a challenging time.4 Whether it's engaging in crafts, listening to music, reading, or learning new skills, these activities can offer a mental break from cancer-related thoughts and foster a sense of identity beyond the illness.4

Finally, journaling can be a helpful way to process emotions and reduce anxiety by providing a private and non-judgmental space for self-expression.3 Writing down thoughts and feelings can make them feel less overwhelming and can help individuals identify patterns or triggers for their anxiety.3

The support received from social connections plays a vital role in managing the emotional challenges associated with an NMIBC diagnosis. Talking to family and friends can provide comfort and a sense of connection.1 Sharing feelings and experiences with loved ones can offer emotional relief and strengthen bonds.1 However, it is important to recognize that open communication might not always be easy, and patients should feel empowered to seek support from other sources if they find it difficult to talk to those closest to them.2

Joining support groups, whether online or in-person, offers a valuable opportunity to connect with others who have similar experiences.1 Connecting with individuals who truly understand the challenges of living with NMIBC can reduce feelings of loneliness and provide valuable insights and coping strategies.8 The availability of both online and in-person options increases accessibility, allowing patients to choose the format that best suits their needs and preferences.26 Online forums and communities can provide 24/7 access to support and information from the comfort of home, offering a convenient and often anonymous way to connect with others, ask questions, and share experiences.1

Recognizing when professional help is needed is a crucial step in managing anxiety effectively. Oncology social workers are integral members of the cancer care team who can provide counseling, emotional support, and connect patients with practical resources.1 Their specialized training equips them to address the psychosocial needs of patients and their families, offering tailored support, including counseling, resource navigation, and advocacy.46 Psychologists and psychiatrists specializing in oncology can provide targeted interventions for anxiety and depression, including therapy and medication management when necessary.1 They understand the complex interplay between physical and mental health in the context of cancer and can offer evidence-based treatments to improve emotional well-being.29 Specialist nurses also play a vital role in offering support and connecting patients with necessary resources, often acting as a crucial link between patients and other members of the healthcare team.2

Several organizations offer valuable resources and support for NMIBC patients and their caregivers:

Organization	Focus	Key Resources	Contact Information
Bladder Cancer Canada	Support and information for Canadians affected by bladder cancer	Website (bladdercancercanada.org), support forums, webinars, educational materials	bladdercancercanada.org
Bladder Cancer Advocacy Network (BCAN)	Advocacy, support, and research for bladder cancer in the US	Website (bcan.org), helpline (833-ASK-4-BCA), Survivor to Survivor program, online support community, local support groups, podcasts, webinars, patient handbook	bcan.org, 833-ASK-4-BCA (833-275-4222)
American Cancer Society (ACS)	Comprehensive cancer support services nationwide	Website (cancer.org), helpline (1-800-227-2345), Hope Lodge, Road to Recovery, Cancer Survivors Network, ACS CARES app	cancer.org, 1-800-227-2345
CancerCare	Free, professional support services for all affected by cancer	Website (cancercare.org), helpline (1-800-813-HOPE), counseling, support groups (general cancer), financial assistance	cancercare.org, 1-800-813-HOPE (4673)
Mayo Clinic	Comprehensive cancer care and support services	Website (mayoclinic.org), Mayo Clinic Connect online community, patient navigators, integrative oncology, social work, psychology and behavioral health, cancer rehabilitation, palliative care, survivorship clinics, caregiver support	mayoclinic.org
Fight Bladder Cancer UK	Support and advocacy for bladder cancer patients in the UK	Website (fightbladdercancer.co.uk), private online forum (Facebook: FIGHT BLADDER CANCER SUPPORT), helpline (01844 351621), downloadable resources	fightbladdercancer.co.uk, 01844 351621, info@fightbladdercancer.co.uk

Patients can also proactively engage with their medical team to address anxiety. Open communication is essential, and patients should feel comfortable discussing their emotional well-being with their doctors and nurses.1 Healthcare providers need to be aware of the high prevalence of anxiety in NMIBC patients and create a supportive environment for these conversations.56 Patients should not hesitate to ask their medical team for referrals to oncology social workers, psychologists, or psychiatrists who specialize in working with cancer patients.1 Medical professionals play a crucial role in facilitating access to this specialized mental health support and integrating it into the overall treatment plan.1 Furthermore, seeking clear and understandable information about the diagnosis and treatment can significantly help reduce anxiety related to the unknown.2 Healthcare providers should ensure that patients receive comprehensive and easy-to-understand information about their condition and treatment options to mitigate anxiety arising from uncertainty.2

In conclusion, experiencing anxiety after an NMIBC diagnosis is a common and understandable response. It is perfectly acceptable to feel overwhelmed, worried, or fearful when facing this health challenge. Proactively utilizing the various coping strategies and resources discussed in this report can significantly aid in managing these anxieties. Connecting with others through support groups and online communities, seeking professional help from oncology social workers and mental health professionals, and maintaining open communication with the medical team are all vital steps in fostering resilience. Ultimately, with self-compassion and the right support, individuals diagnosed with NMIBC can navigate the challenges of this condition and maintain a good quality of life.