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Rare Diseases

Why There’s Hope for a Longer, Brighter Future After a GIST Diagnosis

If you or a loved one has been diagnosed with a gastrointestinal stromal tumor (GIST), know you are not alone and you have options.

Although this type of cancer is considered rare, GIST affects 129 in 1 million people, with 5,000 to 6,000 new cases per year in the United States alone, according to the World Health Organization (WHO) and the National Organization for Rare Disorders. In fact, GIST is the most common type of sarcoma, accounting for 5 percent of these cancers, per the WHO.

According to the Mayo Clinic, GISTs are soft-tissue sarcomas that can occur in any part of the digestive system, including the small intestine and stomach. Small tumors typically go undetected because they don’t cause symptoms. GISTs are usually diagnosed when they begin rapidly bleeding, causing the patient to vomit blood or pass blood in their stool, the Mayo Clinic noted. 

The WHO pointed out this cancer doesn’t discriminate by age or gender, and that there isn’t a clear genetic link. However, 60 is the most common age of diagnosis.

Survival rates are relatively high

These facts may seem daunting if you suspect you have a GIST, or if you or a friend or family member has received a diagnosis. But the good news is that the five-year relative survival rate for GISTs is promising, especially when the disease is caught early.

According to the American Cancer Society, relative survival rates are determined by type and stage. In the case of GISTs, those stages are localized (meaning they remain in their starting origin, like the stomach), regional (they have spread to structures close by or to the lymph nodes), and distant (they have traveled farther from the starting origin, such as to the liver).

Based on 2009-15 data, the most recent statistics available, the five-year relative survival rates for GISTs that are localized, regional, and distant are 94 percent, 82 percent, and 52 percent, respectively, per the American Cancer Society. That makes for an average five-year relative survival rate of 83 percent for all GIST stages.

Improved treatments lead to better survival

The American Cancer Society pointed out that because treatment options have improved over time, survival rates for GISTs are likely better as well.

The group noted that surgical, medical, and radiation oncologists treat these tumors, as do gastroenterologists, whose specialty is to treat gastrointestinal diseases. Treatment depends on the individual, but may include targeted therapy or surgery (the most common approaches), or ablation and embolization, chemotherapy, and/or radiation. 

Research suggests that, in the future, newer targeted therapies may help improve treatment for more advanced GIST cases. 

The moral of the story is that, as with many types of cancer, including those that affect the skin and lungs, improvements in targeted therapy are paving brighter futures for patients with GIST, per Cancer.Net. Therefore, educating yourself, and advocating for yourself or a loved one in the doctor’s office can make a world of difference when it comes to treating GIST and other rare cancers.

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