In the past decade, some life-threatening diseases have evolved from being untreatable diseases to chronic conditions with the help of significant medical advances.

Gastrointestinal stromal tumors, or GIST, are a rare and life-threatening cancer of the gastrointestinal tract. Advances in the treatment of this cancer exemplify the leaps and bounds in scientific innovation and improvements in patient care that are possible within a 10-year span.

People living with a rare cancer such as GIST – a condition with a reported incidence of 4,000 to 5,000 cases each year in the United States – can often feel isolated and overlooked. Patients diagnosed with GIST a decade ago found little information about the disease, encountered underdeveloped support networks and faced an uncertain future given the limited treatment options.

“When my wife was diagnosed with GIST, we felt like we had no one to turn to for support or information about living with this disease,” said Norman Scherzer, Executive Director of the Life Raft Group, a leading patient advocacy group for GIST patients. “Today, patients have access to a wealth of information, established support networks and the legacy of many patients living with this disease, like my wife.”

In the last decade, there has been significant clinical research focused on understanding the specific pathway of the disease. But despite the significant advances made to date, scientific understanding of the disease continues to be a priority for researchers and clinicians. A key area of focus is to further improve patient outcomes by working to improve the measurement of risk of recurrence in patients – a challenging task given that multiple factors are associated with risk for relapse or decreased survival after surgery, including the size and location of the tumor, the occurrence of tumor rupture and the proportion of tumor cells undergoing cell division (mitotic rate).

“The treatment of GIST has come a long way, but we still have a long way to go. Questions about how to best measure risk of recurrence need to be addressed to ensure we are providing consistent and appropriate treatment for each patient, with the ultimate goal of optimizing the final outcome for patients,” said Anthony Conley, M.D., Moffitt Cancer Center, Tampa Florida.

In addition to the difficulties in assessing chances of recurrence, the treatment of the disease also presents challenges. All gastrointestinal stromal tumors have the potential to be malignant and approximately 10 percent to 25 percent of cases of GIST have spread to distant parts of the body (metastasized) at the initial stage of diagnosis, with data estimating that the 5-year survival rate for these patients is about 13 percent. And although complete surgical removal is possible in most patients with primary GIST (tumors at the original site of development before any spread to other locations), many patients develop tumor recurrence or metastasis following surgery, with poor chances of survival following recurrence. For those reasons, researchers and physicians continue to strive to find ways to improve patient outcomes.

For more information about GIST, please visit www.GISTTheFactsInfo.com and speak with a health care professional or local advocacy organization.