Bladder cancer is much more common than you might think. In fact, it’s the fourth most common cancer in the United States. But we don’t hear much about it, so you probably don’t know much about it. As a result, finding out you have it can feel overwhelming.
How treatable is it? What are your treatment options? Will it have long-term effects on your life? Start finding your answers here.
Of course, you also need to talk with your doctor. Your treatment team is your best source of good, up-to-date information. But doctors aren’t always good at explaining things in a way you can understand (although most do try!).
This page tries to point you in the direction of reliable and understandable information to help you get a better handle on what your doctor may have told you and come up with more questions to ask about your specific case (sometimes you may be so lost you don’t even know what questions to ask!
Learning about your disease and possible options at home in a comfortable environment can help you figure things out better than in your doctor’s office where you might be feeling overwhelmed by the news).
Of course, these are not the only resources available to you. They’re intended as a place to start.
You can also do your own search for more information. But be careful that you pick reliable sources. We have a page of search tips to help.
The resources on this page are specific to bladder cancer. There are other resources available to people with any kind of cancer. You may not qualify for all of them, but they’re worth of look, too.
Many of these resources also link out to other resources, beyond what we may have mentioned in the description. If a particular resource/website looks good to you, it can be worth spending some time to discover all it has to offer.
Bladder Cancer Overviews
Bladder Cancer Overview guide from the American Cancer Society: This guide gives a brief explanation of what bladder cancer is, staging, treatment, talking with your doctor and more. There is also a detailed guide with more in-depth information. You can also download the guides as PDFs.
Bladder Cancer Patient Guide (PDF): This guide is from the American Urological Association. It explains tumor stages and grades plus things to consider when choosing a treatment. It also has a glossary of cancer-related terms to help make sure you understand what you’ve read.
Bladder Cancer overview from Mayo Clinic: The Mayo Clinic’s disease overviews are easy-to-understand guides covering many of the most common questions you might have about the disease.
What You Need To Know About™ Bladder Cancer: The National Cancer Institute publishes booklets explaining many different kinds of cancer. The one for bladder cancer covers topics ranging from symptoms and diagnosis to treatment, getting a second opinion and follow-up care.
Organizations Devoted to Bladder Cancer
These are some organization that focus specifically on bladder cancer patients and their loved ones. They may offer a variety of services, from help finding treatment to forums and support groups.
Bladder Cancer Advocacy Network (BCAN): This non-profit organization works to increase awareness of and research on bladder cancer. It offers a resource library where patients can learn more about their disease, treatment options and what to expect during tests and treatment. It also helps you find support through local support groups (in partnership with local organizations) and its online support community.
American Bladder Cancer Society: The Society advocates for the bladder cancer community and offers information and resources on its website. Its bladder cancer forum is a place where you can connect with other patients and caregivers to share stories, information and encouragement. Several of the threads appear to be relatively active. You may also like to follow their Facebook page.
Bladder Cancer WebCafe: This site compiles a wealth of information and resources for patients in the US, Canada and Europe. The site has entire sections devoted to understanding the disease, treatment options and financial assistance. We did have trouble with the site timing out when we visited. But if it’s working, it’s a wonderful resource. It also offers a Bladder Cancer Cafe email discussion list hosted by the Association of Cancer Online Resources.
Clinical Trials in Bladder Cancer
There are many reasons someone might want to be part of a clinical trial. Sometimes the usual best treatment isn’t working. Other times the details of your cancer make you a perfect fit for a current trial. Of course, it’s always up to you whether you want to participate.
If you would like to be part of a trial, these sites can help you find ones you may be eligible for. If you’re not sure exactly what clinical trials do, How Clinical Trials Work, from Memorial Sloan-Kettering Cancer Center can help answer some of your questions.
ClinicalTrials.gov bladder cancer trials: The NIH provides a searchable database of clinical trials. We link to a basic search for bladder cancer. You can modify the search to find trials near you, limit results to trials that are currently recruiting and more.
BCAN Clinical Trial Matching Service: In partnership with EmergingMed, the Bladder Cancer Advocacy Network offers online or telephone matching service to help you find clinical trials you may be eligible for.
MD Anderson Cancer Center Trials: This page lists the trials the University of Texas’ MD Anderson Center is conducting. As of this writing, the center had clinical trials for every stage of bladder cancer.
Memorial Sloan-Kettering Cancer Center trials: MSKCC also leads a number of clinical trials for bladder cancer.
CancerViewCanada: Find bladder cancer trials in Canada. This link goes to a search for the words bladder cancer. You have the option of narrowing your choices by province, city, drug and more.
Forums and Support Groups about Bladder Cancer
You can’t take this cancer journey alone. You need a strong support group. Friends and family are, of course, the foundation of your support. But sometimes only another cancer patient or survivor can really understand how you’re feeling. It’s important to find at least one in-person or online support group to be a part of.
In addition to support groups run by the organizations listed above, you might find these resources useful.
Bladder Cancer Support Facebook group: This is a closed group, so you can share knowing only other group members see your posts. It’s part of Fight Bladder Cancer, a UK charity devoted to supporting bladder cancer patients, research and awareness.
Bladder Cancer Canada forum: These discussion forums appear to be moderately active, with five forums dedicated to coping, connecting with other patients, having a little fun (yes, you still need that) and a relatively new forum just for caregivers.
Other Resources for Bladder Cancer
You might also find this site helpful.
Urology Care Foundation: This organization is the foundation of the American Urological Association. It supports research and patient education for all kinds of urological conditions, including bladder cancer.
It offers an online searchable database of urologists so you can find a doctor near you. By choosing oncology/cancer from the dropdown list next to special Interest Area, you can find a urologist who specializes in oncology (cancer care). All doctors in the database are Association members and certified by the American Board of Urology.
Information for Kids About Bladder Cancer
We didn’t find any resources specifically about bladder cancer aimed at children. But we do have a Cancer Resources for Kids page where you can find resources to help you talk with them about your diagnosis. There’s also support groups and camps specifically for kids dealing with cancer, either their own or a parent’s.
Caregiver Resources
As a caregiver of someone with bladder cancer, you face your own unique challenges and stresses. You need support and understanding, too. Some of the support resources listed above also offer support to caregivers.
For even more support options and resources, see our Caregiver Resources page.