Rare Bladder Cancer Diagnosis: What Does It Mean?

“You’ve got cancer,” are among the words that no one wants to hear. Perhaps even more difficult to hear can be, “you’ve got a rare form of cancer,” or “we think you have cancer, but we’re not sure what type.” A diagnosis of a rare bladder cancer can feel like a punch in the gut (sometimes literally).

What are rare cancers?

There is no single definition of rare cancers. Overall, they account for 20% of all cancers, impacting a relatively small percentage of the population. The distribution, incidence rate and types of rare cancers vary in different regions of the world. Diseases are classified as rare as in the United States when they affect less than 1 in 200,000 people at any given time. Most rare diseases have genetic origins. About 20% are the result of infections, allergies and environmental causes, or are degenerative (they increasingly deteriorate over time) and proliferative (they multiply or grow rapidly).

Challenges when diagnosing rare cancers

Rare cancers at any age, including adulthood, adolescence, and childhood, are often misdiagnosed. Medical results are interpreted and then treated based on a poor understanding and limited medical expertise. That noted, the reality is there are often no effective cures for rare cancers, even when correctly identified.

The most common type of bladder cancer

The majority of bladder cancers are TCC, transitional cell carcinoma, which start in the urothelial cells that line the bladder. Non-urothelial bladder cancers fall into several classifications of carcinoma, papilloma, adenoma, sarcoma and other types of tumors. They are generally diagnosed at a more advanced stage compared with the more common TCC.

Rare types of bladder cancer

Squamous cell carcinoma accounts for 3-5% of bladder carcinomas. Adenocarcinomas of the bladder are less than 2%. Neuroendocrine cancers or small cell cancers of the bladder are even more rare, comprising less than 1% of all bladder tumors.

Research for rare cancers

There is less research conducted on rare cancers and there is less financial support than for traditional drug research. The Orphan Drug Act of 1983 encourages research for the improvement of therapies for rare cancers. Low prevalence and difficulty in diagnosis or common misdiagnosis in the clinical setting can pose challenges to supporting the development of new drugs. There are a number of genitourinary cancers, including several types of bladder cancer that fall into this category.

It’s hard to know where to get facts

There are numerous resources available for people diagnosed with all kinds of diseases.
When diagnosed with a rare condition it's often harder to identify sources for information. You may find that doctors, nurses and even other cancer patients are unfamiliar with your type specific of cancer. Rare forms of non-urothelial bladder cancers can pose diagnostic and treatment challenges.4

Consider getting a referral to a hospital cancer center where there are specialists with experience treating the type cancer type you have. The National Cancer Institute (NCI) identifies designated Cancer Centers on its website or you can call 1-800-4-CANCER. You might want to get a second opinion on the diagnosis you received.5

Dealing with emotions

Everyone reacts differently to finding out they have cancer. It is natural to experience psychological reactions as well as physical ones upon receiving a cancer diagnosis. This may include dealing with emotions, including anger and anxiety and high stress levels. It’s OK to get angry, upset, panicked, or overwhelmed.

Family and friends often play an important role in taking care of a person with bladder cancer. Caregivers can provide physical, practical, and emotional support. It’s important to have patience with yourself and others. Ask for help, and accept offers to help from loved ones.

Where to learn more

There are networks and resources devoted to research and support, specifically for people with rare cancers. BladderCancer.net is a community where you can find educational information, share experiences or learn about personal journeys of others with all types of bladder cancer. Additional resources where you can seek information on rare bladder cancers includes:

American Cancer Society
Bladder Cancer Advocacy Network
International Rare Cancer Initiative
National Cancer Institute

You are never alone

Research is ongoing to find better methods to prevent, screen for, diagnose, or treat rare diseases. Clinical trials are an essential part of cancer research; they may discover treatment alternatives for those for whom standard and approved therapies do not work. Ask questions of your medical team, discuss treatment options, and explore clinical trials. A rare bladder cancer diagnosis poses unique challenges, but remember that you’re never alone in your cancer journey!

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