• Early stage GIST may be curable, but there is a risk of recurrence.
  • The overall relative 5-year survival rate for GIST is 83 percent, but this varies by stage and other factors.
  • Newer therapies offer a more personalized approach to treatment, which may affect people’s outlook.

Gastrointestinal stromal tumor (GIST) is a type of cancer that starts in the gastrointestinal (GI) tract.

The outlook for people with GIST, including survival rates, vary person to person. A lot depends on the cancer’s stage at diagnosis and how quickly cancer cells are growing and dividing.

A new generation of targeted therapies appears to be improving the overall outlook for people with GIST.

Read on to learn about the outlook, survival rates, and breakthroughs in therapies for treatment-resistant GIST.

Survival rates are a snapshot in time. These statistics are gathered from people who received their diagnosis and treatment at least 5 years in the past.

Relative survival rate is how likely a person with GIST is to survive over a given time period compared with the general population.

The overall relative 5-year survival rate for GIST is 83 percent. This figure is based on people who received their diagnosis between 2010 and 2016.

By stage, this breaks down as:

  • Localized (cancer remains in the organ where it started): 93 percent
  • Regional spread (cancer is found in nearby tissues): 80 percent
  • Metastatic (cancer has spread to distant parts of the body): 55 percent

Survival rates today may be better than what’s reflected in the statistics. That’s because cancer treatments are advancing at a rapid rate, particularly for GIST.

It’s also worth noting that these statistics are based on stage at diagnosis. That doesn’t change. If localized cancer becomes metastatic, it’s still part of the localized GIST stats.

Survival statistics provide a broad overview. They can’t tell you what any one person’s outlook will be.

Your doctor will be able to give you a better idea of what to expect. Besides GIST stage at diagnosis, your doctor will take into account:

  • the size and location of the primary tumor
  • whether surgery can safely remove tumors
  • the rate at which cancer cells are reproducing (mitotic rate)
  • your age and coexisting health conditions

GIST is more common in people over the age of 40, but young adults, teens, and even children can develop GIST.

Most GIST cases occur in the stomach. They can also occur in the small intestine and other parts of the GI tract. The overall survival rate is higher when tumors are located in the stomach than in the small intestine.

Outcomes may vary based on a person’s age or health history.

For example, a 2017 study examined survival rates based on age. The researchers found that small intestine tumors were more common in people under the age of 40 than in older people.

Younger people were also more likely to survive if GIST was in the small intestine than if it was in the stomach. The authors explain this might be because of genetic differences in tumors depending on their location.

Younger people with GIST were also more likely to have surgical treatment. Even among those who had metastatic GIST, surgical treatment was associated with improved survival.

Younger people who didn’t have surgery had double the risk of dying from GIST.

Adults over age 40 are additionally more likely than younger people to have other chronic health conditions. This can sometimes make treatment more complicated.

A 2020 study suggests that sex may be an independent factor in determining outlook. The researchers found that the male study participants with GIST had a higher risk of death than the female study participants with GIST.

Reasons for this aren’t clear. The study authors wrote that further research is needed to better understand this finding.

Overall, people’s outlooks may have improved in recent years as a result of new targeted therapies for treatment-resistant GIST.

GIST may be curable if there is one early stage tumor that can be surgically removed without damaging vital organs. This can sometimes be done with minimally invasive laparoscopic surgery.

Some people make a full recovery without needing further treatment. Cases of GIST with tumors that are smaller than 2 centimeters (cm) are most likely to be cured with surgery alone.

Tumors that are larger than 2 cm are more likely to recur. Tumors that are 10 cm in size or larger are very likely to recur.

Even if your doctor says you’re cancer-free or cured, you’ll still need regular follow-up tests to monitor for recurrence.

Some tumors can’t be surgically removed. It might be because they’re too large or have invaded a sizeable part of a nearby organ, or because they’ve metastasized (spread) to other parts of the body.

The cancer is still treatable. Targeted drugs used to treat GIST are called tyrosine kinase inhibitors (TKIs). These therapies can help shrink tumors, slow the spread of cancer, and relieve symptoms.

Sometimes, doctors preemptively prescribe TKIs to prevent cancer recurrence in people who have undergone GIST surgery.

The outlook for people with GIST varies. Due to evolving therapies, people diagnosed within the last several years have more treatment options than ever.

TKIs are paving the way for a more personalized approach to treatment. These drugs target specific genetic mutations that are responsible for GIST. They may improve a person’s survival rate and outlook.

Breakthrough TKIs include:

  • Imatinib mesylate (Gleevec). This selective inhibitor targets KIT and PDGFRA gene mutations, which are found in 80 percent of all people with GIST. This is a first-line therapy that stabilizes or shrinks tumors in most cases. If there’s no response or it stops working, sunitinib (Sutent) then regorafenib (Stivarga) can be tried next.
  • Avapritinib (Ayvakit). One of the newer therapies for metastatic disease, this drug is an option when there’s a rare exon 18 mutation in the PDGFRA gene. This type of cancer does not respond to other standard GIST therapies.
  • Ripretinib (Qinlock). This new targeted therapy was approved in 2020 for advanced GIST that’s resistant to treatment with imatinib, sunitinib, and regorafenib. In phase 3 trials, ripretinib significantly improved median progression-free survival over placebo.

According to the American Cancer Society, it’s not known whether certain lifestyle choices can lower the risk of tumor growth or recurrence. But your general health may benefit from behaviors such as:

  • a balanced diet
  • regular exercise
  • not smoking
  • seeing your doctor as recommended
  • taking medications as prescribed

After treatment, you’ll probably need follow-up doctor visits every few months at first, then at least once a year. Some people may need to take TKIs long term.

GIST is a type of tumor that starts in the gastrointestinal tract. The outlook for people with GIST depends on many factors, such as stage, mitotic rate, and overall health.

Surgery can remove some tumors and lead to a full recovery. Several new therapies can treat tumors that can’t be removed or treat cancer that has spread.

The outlook people with GIST is improving with the introduction of new drugs for treatment-resistant tumors.

Your doctor can review your medical history to give you a better idea of your own general outlook and what you can expect from treatment.