Talking to Loved Ones About Your NMIBC Diagnosis: Communicating the News and Finding Helpful Support

Polygon Health Team
May 13
13 min read

Updated: May 14

Receiving a diagnosis of Non-Muscle Invasive Bladder Cancer (NMIBC) can evoke a range of powerful emotions. In the midst of processing this news, communicating with loved ones becomes a crucial aspect of navigating the journey ahead. Open and honest communication from the outset not only allows family and friends to understand what you are going through but also enables them to provide the most effective support. Furthermore, sharing your diagnosis early can prevent feelings of hurt or upset that might arise if loved ones find out later without your direct involvement.1 The ability to articulate your experiences and needs will play a significant role in your overall well-being, treatment adherence, and quality of life throughout this process.3

Before embarking on conversations with others, it is essential to allow yourself time to process your own feelings about the diagnosis.4 Experiencing a mix of emotions, potentially including shock, fear, or confusion, is a natural response. Attempting to communicate with loved ones while still feeling overwhelmed or unclear about your own emotions can lead to less productive and more stressful interactions.4 It is important to remember that there is no pressure to immediately share the news. Taking the necessary time to come to terms with the diagnosis will enable you to communicate with greater clarity and composure when you feel ready.4

Once you have had some time to process your initial emotions, consider who in your life needs to be informed and when the right time might be to share this news.6 Creating a list of individuals to tell, perhaps prioritizing those closest to you, can be a helpful first step.6 Often, a spouse or partner is the first person to inform, as they will likely play a significant role in providing care and support throughout your treatment journey.4 Close family members, such as children, parents, and siblings, as well as close friends, are also important individuals to consider informing early on.4 Deciding when and whether to share the news with extended family, coworkers, and acquaintances is a personal choice that should be made based on your comfort level and anticipated needs for support in those areas of your life.4

As you prepare to talk with your loved ones, take some time to think about what information you want to share initially.5 It can be helpful to focus on just a couple of the most important aspects of your diagnosis and treatment plan at the beginning.2 Anticipating the kinds of questions your loved ones might have can also help you feel more prepared for the conversation.7 Remember that it is perfectly acceptable to state that you are not ready to discuss certain aspects of your diagnosis or treatment at any given time.5 This allows you to control the flow of information and protects your emotional well-being.

When you feel ready to communicate your NMIBC diagnosis, choosing the right time and place for the conversation can significantly impact how it is received.6 Selecting a quiet and private setting where you can talk without fear of interruption is advisable.6 Opt for a time when you feel emotionally prepared to share the news and when your loved ones are likely to be able to focus and listen attentively.5

Initiating the conversation with sensitivity can help ease any anxiety surrounding the discussion.2 Starting gradually and in a way that feels comfortable for you is key. You might consider beginning with a simple opening line, such as, "This is going to be difficult to hear, but I need to tell you something".2 Alternatively, you could ask what they already know about your recent health concerns, which can prevent you from repeating information they are already aware of.2

Throughout the conversation, it is important to be open and honest about your diagnosis from the start.1 Using direct and simple language, while initially daunting, can prevent misunderstandings and ensure clarity.10 While you don't need to delve into excessive medical detail at the beginning, using the word "cancer" can be helpful in conveying the seriousness of the situation.10 Explaining the specific type of cancer, in this case, Non-Muscle Invasive Bladder Cancer, and the part of the body it affects in straightforward terms will aid their understanding.6

Be prepared for a range of emotional reactions from your loved ones, which might include shock, concern, sadness, or even anger.4 It is important to remember that everyone processes difficult news in their own way and at their own pace.2 Similarly, be honest about your own feelings, whether they include fear, anxiety, or stress.2 Allow for moments of silence during the conversation, and recognize that it is okay if either you or your loved ones don't immediately know what to say.2 Let them know that it is perfectly acceptable for them to feel upset, angry, or scared, and encourage them to express their emotions openly.12 By being attuned to each other's feelings and responding with empathy, you can foster better communication and mutual support.2

Tailoring your communication approach to different relationships is also important. When talking with your partner, prioritize open and honest communication about all aspects of your diagnosis and treatment.10 Involving them in medical appointments, when possible, can provide them with a firsthand understanding of your condition and treatment options.10 Be open to discussing any potential changes in your physical intimacy, as bladder cancer and its treatments can have an impact on sexual health.10 Remember that your partner may also be experiencing a range of emotions and may feel overwhelmed or uncertain about how to best support you; checking in with their needs is crucial for maintaining a strong relationship.11

Communicating with children about a cancer diagnosis requires a particularly sensitive approach. Total honesty and transparency are generally recommended, regardless of the child's age, although the level of detail should be age-appropriate.4 Use clear and simple language that they can easily understand, avoiding complex medical jargon.6 It is essential to reassure them that they did nothing to cause the cancer and that it is not contagious.10 Let them know that they will continue to be loved and cared for.6 Encourage them to ask questions and answer them honestly and in a way they can comprehend.6 Be prepared to explain any physical changes they might observe as a result of your treatment.13 Reassure them that it is okay for them to feel sad, angry, or scared about the situation.12 Maintaining familiar routines and boundaries as much as possible can provide a sense of security during a challenging time.11 You might also find it helpful to use children's books about cancer as a tool to guide these discussions.13

When communicating with other family members and friends, strive to be open and honest while also acknowledging if you find it difficult to talk about the cancer.1 It is perfectly acceptable to let them know that you may not feel able to share every detail.2 If you find it tiring to repeatedly share the news with multiple people, consider asking a trusted friend or family member to help relay the information.2 Remember that it is okay to have conversations that are not solely focused on cancer; chatting about everyday topics can help you feel a sense of normalcy.2 Be open to accepting help when it is offered and don't hesitate to ask for support when you need it.2 Let them know if you are comfortable with them asking questions or sharing their own feelings.12 It can also be helpful to remind them that sometimes, simply being there for you is the most meaningful form of support.12

Anticipate that your loved ones will likely have questions and concerns about your diagnosis, treatment plan, and how it will impact your daily life.6 Prepare to answer these questions honestly, acknowledging when there is uncertainty about the future.10 For children, be ready for questions about the possibility of death and address these with truthfulness, comfort, and understanding.12 Reassure everyone that your medical team is dedicated to providing the best possible care and ensuring your comfort.12

Understanding the types of support that can be helpful is essential for both you and your loved ones. Emotional support plays a vital role in coping with a cancer diagnosis. Often, the most valuable support is simply being present and offering a listening ear without judgment or the need to solve problems.12 Encourage your loved ones to simply be themselves and feel at ease with you.12 Let them know that you appreciate them listening when you need to talk.12 Simple expressions of care and concern, such as saying, "I'm not sure what to say, but I want you to know I care," or "How are you doing today?" can be incredibly meaningful.15 It is important for loved ones to avoid making light of your feelings, judging them, or trying to change how you feel.15

Practical support can significantly ease the burden of daily life during your NMIBC journey. Be clear about what you need, as others may not always know the specifics of your situation.10 Don't hesitate to delegate tasks that you find challenging or overwhelming.10 Examples of helpful practical support include assistance with preparing meals, providing transportation to appointments, helping with childcare or pet care, managing household chores, grocery shopping, or taking care of yard work.6 Encourage loved ones to offer specific forms of help rather than a general offer of assistance.14

Informational support involves sharing resources and seeking knowledge together. When possible, involve your loved ones in medical appointments so they can gain a firsthand understanding of your diagnosis and treatment plan.10 Consider creating a health care journal together to keep track of important information, such as doctor's names, contact details, and treatment schedules.19 Preparing a list of questions for your medical team together can ensure that all concerns are addressed during appointments.19 Encourage your loved ones to learn about NMIBC and your specific treatment options.19 Taking notes or recording doctor's appointments (with permission) can be a valuable way to review information later and ensure everyone is on the same page.8

Setting healthy boundaries and respecting your privacy are crucial aspects of support. Remember that you have the right to decide what, when, and how much you share about your diagnosis.5 It is perfectly acceptable to set boundaries around the types of information you feel comfortable discussing.20 Your loved ones should respect your decisions regarding the sharing of your health information with others.15 Don't hesitate to tell someone, "I'd rather not talk about that right now," if you feel uncomfortable or overwhelmed.5 Loved ones should refrain from sharing personal stories about other people's experiences with cancer unless you specifically ask them to.15

The journey with NMIBC often involves long-term surveillance and the possibility of recurrences, making it essential to maintain open dialogue throughout this time.22 Your communication needs and the types of support that are most helpful may evolve as you progress through treatment and surveillance.26 Regular check-ins and open conversations about both your physical and emotional well-being will be important.6

It is important to acknowledge that bladder cancer and its treatments can have an impact on sexual health and intimacy.10 Having open and honest conversations with your partner about any changes you are experiencing is crucial for maintaining intimacy and a strong relationship.10 Remember that intimacy extends beyond sexual intercourse and includes physical touch and affection in other forms.32 If you and your partner are facing challenges in this area, seeking professional help from therapists or counselors specializing in sexual health and chronic illness can be beneficial.10

Recognizing that your support needs can change over time is vital.10 Depending on the stage of your treatment, any side effects you might be experiencing, and your overall emotional well-being, the type and level of support you need may fluctuate. Encourage regular conversations with your loved ones about your current needs and any adjustments that might be required in the support they provide.10 You should feel empowered to communicate when you need more or less support in specific areas of your life.6

Numerous resources and support systems are available to individuals diagnosed with NMIBC and their families. National bladder cancer organizations offer a wide range of support. The Bladder Cancer Advocacy Network (BCAN) (19) provides information, online and in-person support groups, a Survivor-to-Survivor program connecting patients with those who have had similar experiences, a call center staffed by oncology social workers (1-888-901-BCAN), local chapters, expert videos, caregiver resources, a patient handbook, nutrition support, and fact sheets. CancerCare (19) offers counseling, resource navigation, financial assistance, support groups, community programs, specialized programs, coping circle workshops, and publications (800-813-HOPE). The American Cancer Society (13) provides a 24/7 helpline (800-227-2345), information, support programs, lodging during treatment, navigation support, an online survivor network, and a clinical trial matching service. The World Bladder Cancer Patient Coalition (62) offers patient information, a global network of patient organizations, and engages in awareness and advocacy efforts. The American Bladder Cancer Society (42) provides information, resources, and a support forum.

Connecting with others who have experienced bladder cancer can be incredibly beneficial. Support groups, both in-person and online, offer a space to share concerns, learn coping strategies from peers, and reduce feelings of isolation.6 These groups provide a sense of community and shared understanding that can be invaluable throughout your journey.36

Seeking professional counseling or therapy from oncology social workers, counselors, or therapists can provide you and your family with essential emotional support and coping strategies.8 These professionals are specifically trained to address the psychological impact of cancer on both patients and caregivers.19 Many cancer organizations and healthcare institutions offer counseling services to support individuals and families navigating a cancer diagnosis.19

Open and honest communication serves as the cornerstone of coping effectively with an NMIBC diagnosis. By taking the time to prepare for these conversations, communicating with sensitivity and clarity, and understanding the various forms of support available, individuals can foster stronger connections with their loved ones. Remember that you are not alone in this journey, and numerous resources exist to provide guidance and assistance. The strength found in shared experiences and supportive relationships can be a powerful tool as you navigate the path ahead.

Organization	Contact Information	Types of Support Offered
Bladder Cancer Advocacy Network (BCAN)	1-888-901-BCAN (2226), bcan.org	Information, support groups, online community, Survivor-to-Survivor program, call center, local chapters, expert videos, caregiver resources, patient handbook, nutrition support, fact sheets
CancerCare	800-813-HOPE (4673), cancercare.org	Counseling, resource navigation, financial assistance, support groups, community programs, specialized programs, coping circle workshops, publications
American Cancer Society	800-227-2345, cancer.org	24/7 helpline, information, support programs, lodging during treatment, navigation support, online survivor network, clinical trial matching service
World Bladder Cancer Patient Coalition	worldbladdercancer.org	Patient information, global network of patient organizations, awareness campaigns, advocacy
American Bladder Cancer Society	bladdercancersupport.org	Information, resources, support forum