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Just how rare is mesothelioma?

Mesothelioma is often called a rare cancer, but what does that mean? Does its rarity have any impact beyond the number of people affected?

These are questions you might have if you or someone you love is ever diagnosed. And the answers may reveal more than you would expect.

Mesothelioma and other rare cancers

There’s no official definition for a rare cancer. It’s simply a cancer that affects fewer people each year than other cancers. That said, the National Cancer Institute uses the limit of 15 cases per 100,000 people per year. That sets an upper boundary for rare cancers that is almost ten times less common than the most common cancers, breast and prostate cancer. Those cancers affect roughly 123 out of 100,000 people each year.

These aren’t empty numbers. As the National Cancer Institute notes, they carry real weight. A cancer’s rarity can affect patients in several meaningful ways:

  • Victims often don’t receive an accurate diagnosis in a timely fashion
  • It’s harder to find doctors with substantial knowledge and experience
  • There are fewer dedicated cancer centers, and visiting one may take more time and effort
  • Patients have a more challenging time getting second opinions or knowing when to look for them

Science often progresses more slowly, as well. Researchers looking for ways to combat these diseases often have a harder time finding the volunteers and data to fuel their studies.

Mesotheliomas rarity is part of the problem

Mesothelioma isn’t the rarest of cancers, but it isn’t far off either. It affects roughly 1.4 people per 100,000 per year. This makes it the sixteenth rarest cancer noted on the American Cancer Society’s chart of rare cancers.

However, the chart also illustrates a couple of the most serious problems mesothelioma victims face:

  • The cancer ranks last among the cancers that doctors detect at a localized stage. This means doctors most often fail to diagnose mesothelioma until after it has spread throughout the body. They catch only 9% of cases while localized.
  • This translates to a low 5-year survival rate. Researchers continue to look for ways to fight the disease, improve survivability and enhance victims’ quality of life. But the reality is 65% of mesotheliomas have spread throughout the body by the time doctors catch them, making them extremely hard to treat.

All of this reinforces the idea that people at risk for cancer want to do everything they can to help doctors identify it early.

Understanding your exposure to asbestos is the key

Researchers continue to look for better detection methods. These may include testing for specific genetic markers or proteins. But for now, the best path to detecting the disease early is to make sure your doctor is aware of your history of asbestos exposure.

Asbestos is responsible for nearly all cases of mesothelioma. And if your doctor knows you have a history of asbestos exposure, he or she may spend less time checking for more common cancers or diseases. That valuable time might go, instead, toward detecting and treating your mesothelioma.

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