Rare Cancers Account for 20% of All: Why You Don’t Hear About Them

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Even during the COVID-19 pandemic, cancer remains one of the top two leading causes of mortality in the United States. That pattern hasn’t changed since the signing of the National Cancer Act in 1971 by then-president Richard Nixon.

In 2020 alone, experts believed that at least 1.8 million people would be diagnosed with the dreaded condition in the United States. According to the American Cancer Society (ACS), by 2021, that number will go up to 1.9 million. Within the same period, over 500,000 people die from the disease.

Many people don’t know that not everyone will develop or succumb to breast, colon, lung, or ovarian cancers. Some of them will be diagnosed with a rare type of cancer that treatment or management is even more challenging.

Why Rare Cancers Can Be a Problem

To be clear, the world has made some significant progress in diagnosing, treating, and managing cancer. One conference in Brussels, Belgium, noted that the survivability rate for the most common cancers is already 80 percent in several countries, particularly developed nations.

In fact, the positive strides are so big that some experts can even confidently claim that cancer is no longer a death sentence.

However, the same conference also highlighted an issue that is not often discussed: the ability to survive the disease is higher for the most well-known cancers. How about for the rare ones?

Treating and managing the less-known cancers can be tricky for a variety of reasons:

1. Not Many Are Correctly Diagnosed

A growing number of groups are succeeding in patient recruitment for rare conditions by building their networks. They partner with vast organizations like the ACS, participate in support-group and advocacy events, reach out to hospitals, and look into massive amounts of data.

By knowing these individuals who suffer from rare diseases, they can perform different types of research that will help pave the way for more knowledge and hopefully a treatment or even a cure.

But because the incidence rate is low, finding these people also poses a problem. According to a European statistic, of the hundreds of known cancers, only 20% are rare. To qualify as such, the incidence rate is just 6 out of every 100,000 people.

2. Getting into Clinical Trials Is Not Easy

Clinical trials are performed not only to test a new drug in the market. They are also helpful in determining whether existing medications or therapies may be repurposed to treat or manage other diseases, such as cancer.

But this type of research needs a good sample size. Based on the FDA guidelines, phase I may require between 20 and 100 volunteers or participants. As the trials proceed to the higher phases, the sample size needs to expand to several hundred or thousands.


Now think about researching lymphoma and breast cancer. In the United States, both Hodgkin’s and non-Hodgkin’s lymphoma are considered rare, with only about 80,000 cases between the two. Hodgkin’s is even rarer as only 8,000 of them patientwill be diagnosed each year.

Meanwhile, according to breastcancer.org, about 13% of US women are likely to develop invasive breast cancer during their lifetime. By 2021, the experts forecast that at least 280,000 ladies will be diagnosed with the condition.

The bottom line is, if one has to conduct research or clinical trial, well-known cancers with high incidence rates are more likely to complete the phases.

3. The Small Population Can Lead to Less Research

All the problems listed here are interrelated. When the sample size is small, a clinical trial for a rare disease is less likely to succeed or even begin. The lack of more updated literature about these conditions will then result in more problems when it comes to their treatment and management:

  • It takes a much longer time to diagnose the condition — According to UK research, it takes about 62 days or about 2 months for someone to get diagnosed with cancer. It may be faster for illnesses like colon cancer and breast cancer if the individual follows the recommended screening guidelines. For rare diseases, it can be longer as some doctors may assume the symptoms are related to other conditions. The person is also more prone to misdiagnosis and may even undergo unnecessary treatments.
  • The risks of late diagnosis are also high — Some rare types of cancer, such as mast cell leukemia, can be aggressive that late diagnosis only worsens the quality of life and the chances of survival of the patient.
  • The lack of research means there may be limited treatment options — Currently, some types of lung cancer can already be managed with immunotherapy, so the patient need not undergo the standard chemotherapy and radiation. On the other hand, adrenocortical carcinoma, or cancer of the adrenal glands, has a five-year survival rate of no more than 60 percent. Once it has already spread to distant organs, the percentage drops to only 20 percent. However, the primary methods of treatment are still surgery, radiation, and chemotherapy.

Cancer remains a people killer because it is not easy to manage and treat. This even applies to the more known ones. However, the scientific progress isn’t the same for all cancer types. Hopefully, in the future, as more organizations fight for rare diseases, the lesser-known ones will get the same attention. This way, more lives can be saved.

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