Bladder Cancer In America Survey Results Over the Years

One of the hardest parts of living with bladder cancer is dealing with the risk of recurrence. For some, recurrences pop up every few months or years, and the relief of being "cancer-free" is short-lived. For others, bladder cancer is diagnosed, treated, and the person remains in remission – but the fear that it could come back looms overhead. For others still, remission has yet to be achieved. No matter your experience, there are similar worries, milestones, and ways of coping. Our Bladder Cancer In America 2019 survey found the many ways by which bladder cancer recurrences affect our community. [native] Remission isn't always permanent Over 400 people with bladder cancer completed our survey, and only 28% of those remained in remission after treatment. The uncertainty of living with bladder cancer is one of the hardest aspects to manage. Anxiety before follow-up appointments Follow-up visits sound simple. Just go in every three, six, or twelve months for a scan or cystoscopy and hope for the all-clear? It's not nearly that easy for most people with bladder cancer, and fears about a possible recurrence can plague the days leading up to an appointment. Fears for the future Worries about recurrence aren't the only fears people with bladder cancer experience. Anxieties about cancer progression can be emotionally taxing. Bladder cancer goes beyond the treatment room After bladder cancer treatment, many people might assume that life returns to normal. However, that's often not the case, and many survivors learn to adapt to a "new normal." Emotional support is key Living with bladder cancer can be exhausting, physically and emotionally. Luckily, friends and family often step up to the plate and offer comfort and support to their loved ones coping with cancer. We want to thank everyone who took our survey for sharing so openly about their experiences with bladder cancer. Your responses help us to raise awareness of what life with bladder cancer is really like and provide information and support to others going through similar experiences. The Bladder Cancer In America survey was conducted online from January through April of 2019. Of the 467 people who completed the survey, 420 were people who have been diagnosed with Bladder Cancer and 47 were caregivers to people with bladder cancer. Hit the button below to participate in our 2023 Bladder Cancer In America Survey! [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"] A bladder cancer diagnosis is a shock, but what can make it more difficult is the lack of information and research available for patients and their loved ones. Many people quickly jump online to research the ins and outs of bladder cancer but have trouble finding reliable information. Even more difficult can be finding someone who has actually been through bladder cancer to connect with and share experiences. To learn more about the challenges of living with bladder cancer, we are conducting our In America survey. By taking our survey, you can bring awareness to the realities of life with bladder cancer and help others feel less alone. Take the Bladder Cancer In America Survey! What is the survey about? The survey covers “basics” like your diagnosis and treatment experiences, but also dives into the nuances of bladder cancer, like the emotional impact and day-to-day challenges. In addition, you’ll have the opportunity to not only tell us about bladder cancer but also any other conditions you are living with and how each impacts your life. Why should you take the survey? Each person who takes the In America survey contributes to a better understanding of bladder cancer as well as other health conditions. With better knowledge, we can help others who are navigating health challenges feel less alone. We hope to capture a full picture of all aspects of your health experiences and bring greater awareness to conditions that may be misunderstood. Sharing your experiences through the survey can reveal how similar each person’s journey is, as well as the differences that make each journey unique. What will the survey ask me? The survey will ask about different moments of your journey with bladder cancer, including: Diagnosis Symptoms and symptom management Quality of life Treatment awareness and experience Other diagnosed conditions We do not require your name, address, or other personal information for you to participate. You also do not have to take the survey all at once. Feel free to bookmark the survey in your Internet browser and return when you are able. You may continue where you left off. How do we use the In America survey data? Survey responses help us and our partners better understand the bladder cancer community. All survey responses remain confidential, reported only in total. This means your specific responses will not be reported individually. All information will become the property of Health Union, LLC. What happens after I take the survey? After the survey closes each year, BladderCancer.net will share the responses back to the community and highlight important findings from the survey. You can read the latest In America survey findings here. But that is not all. Throughout the year, we publish articles and videos based on what we learned from the survey. We hope this survey-driven content contributes to the information available to those affected by bladder cancer and helps you all connect with others who walk the same path. Take the Bladder Cancer In America Survey! Sharing your story can make a difference, and we believe each story can change how others understand life with [condition]. Still have questions? Comment below, or email us at [contact email] for more information. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] In early 2019, news of a shortage of a bladder cancer treatment called BCG started circulating. In this year’s Bladder Cancer In America survey, we asked 589 people with bladder cancer how the BCG shortage impacted their cancer journey and treatment. What is BCG? BCG stands for Bacillus Calmette-Guerin. It is made from a non-harmful type of bacteria and is used to treat early-stage bladder cancer. In some cases, it can also be used after TURBT surgery (transurethral resection of bladder tumor). BCG treatment is considered intravesical. This means it is delivered directly into the bladder. BCG is a type of immunotherapy. Once it is delivered to the bladder, it helps turn on the body’s natural immune response. Activating or enhancing this response can help a person’s body fight early-stage bladder cancer that has not yet spread.1 The BCG shortage In early 2019, the main manufacturer of BCG in the United States announced that they were experiencing a shortage in their supply. This shortage was set to impact many individuals with bladder cancer looking to use BCG as a treatment option. In order to maintain the supply as much as possible, many different suggestions were put in place by organizations like the American Urological Association. These included making sure only those who might significantly benefit from BCG got the treatment, reducing waste of the treatment, suggestion of other treatment options, and more. The main supplier of BCG also announced that they would increase production of the treatment as much as possible to help with demand.2 Finding out about the BCG shortage In our Bladder Cancer In America survey, we asked about the BCG shortage, and how people with bladder cancer found out about it. Almost half of all participants found out about the shortage from their doctor or a nurse. Another 11 percent found out on their own via the internet. Less than 5 percent found out when trying to schedule or attend an appointment for BCG treatment. Even though many were aware or directly impacted by the shortage, over 10 percent still did not know about the shortage at the time of the survey. Effects of the BCG shortage on people with bladder cancer Almost half of all survey participants said they were impacted by the BCG shortage in some way. The most common experience related to the shortage was a feeling of anxiety about treatment. Anxiety directly related to the shortage was felt by almost 15 percent of all participants. Changing treatment plans Other common experiences were having treatment dosing schedules changed or pursuing a different treatment plan entirely. About 12 percent had a change in their BCG dosing schedule as a result of the shortage, while almost 10 percent underwent surgery instead of BCG treatment. Another 4 percent said they tried an alternative treatment option when they found out about the shortage. BCG treatment had to be stopped or could never be started in the first place for another 13 percent of survey respondents. Some even reported needing to travel far distances to receive BCG treatment amid the shortage. Overall, the BCG shortage impacted many in the bladder cancer community and changed the face of treatment over the past year. Were you impacted by the BCG shortage? What kinds of adjustments were made in your case? 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