About Gastrointestinal Stromal Tumors (GIST)

About Gastrointestinal Stromal Tumors (GIST)

At Penn Medicine, patients with gastrointestinal stromal tumors (GISTs) receive their care from a multidisciplinary team of nationally recognized experts in the diagnosis, treatment and research of gastrointestinal cancer.

Gastrointestinal stromal tumors (GISTs) are a type of soft tissue tumor. GISTs are very rare tumors that start in special cells in the wall of the GI tract, called the interstitial cells of cajal. These cells, often called the "pacemaker cells," regulate body processes like digestion and send signals to the muscles within the gastrointestinal tract to expand and contract, moving food and liquid through the digestive system.

GISTs can occur anywhere within the digestive tract, but are found most frequently in the stomach or small intestine.

Penn Medicine's multidisciplinary approach to cancer diagnosis and treatment provides better outcomes and gives patients with GIST access to the most advanced treatment, surgical techniques and clinical trials.

Because navigating a cancer diagnosis and treatment options can be difficult, patients who wish to connect with a cancer specialist at Penn Medicine can speak with a cancer nurse, who can help them make an appointment with the right physician.

To connect with a cancer nurse at Penn Medicine, patients should call 800-789-PENN.

GIST Tumor Risk and Prevention

Some risk factors for cancer, like age and family history, cannot be prevented. Patients who feel they are at risk may benefit from consulting with a risk assessment specialist within Penn Medicine’s GI genetics program.

GIST Risk Factors

Risk factors affect the chance of developing GISTs. Having a risk factor, or even several, does not mean that someone will get cancer.

Most GISTs are sporadic, meaning they have no association with any specific risk factor. But like many cancers, GISTs occur most in people over the age of 50, and they occur both in men and women.  In rare cases, GISTs have been found in members of the same family suggesting a familial risk.

  • Genetic syndromes. These genetic syndromes may increase the risk for someone developing GISTs.
    • Familial gastrointestinal stromal tumor syndrome. This syndrome happens as a result of an abnormal gene passed from parent to child. People with this syndrome may develop GISTs at a younger age than the tumors usually occur.
    • Type 1 neurofibromatosis (von Recklinghausen’s disease). Another genetic disorder, people with this disease may form benign tumors in their nerves. They also have certain types of tan or brown spots on their skin. People with this disease are at an increased risk of developing GISTs and other cancers. 

GIST Prevention

Because there are no known environmental or behavioral risk factors, there are no recommended preventative guidelines for GIST. People with genetic syndromes that have been found to increase their risk should speak with their physicians about screening for or preventing GISTs.

Risk Assessment for Gastrointestinal Cancer at Penn Medicine

Penn Medicine offers programs for patients who want to determine their risk of developing gastrointestinal cancer through GI genetics program.

These programs offer knowledge about the presence of genetic risk factors for cancer and provide patients with important, sometimes life-saving options.

GIST Symptoms

Many patients with small GISTs report no symptoms. Large GISTs may cause symptoms similar to those of other tumors in the digestive tract. The most common symptom is gastrointestinal bleeding.

Symptoms of GISTs may include:

  • Problems swallowing
  • Feeling of fullness
  • Abdominal pain
  • Swelling of the abdomen
  • Vomiting and diarrhea
  • Bowel obstruction
  • Weight loss without trying
  • Fatigue
  • Anemia

Sometimes, GISTs can rupture, or cause a gastrointestinal obstruction. In those cases, immediate medical attention is required.

Staging GIST

Staging systems provide doctors with a common language for describing tumors. After cancer is first diagnosed, a series of tests are used to determine the extent of the cancer and to see whether it has spread to other parts of the body from where it started. Staging is a way of recording the size and growth of a cancer, and developing the plan for treatment. By understanding the stage of their cancer, patients can make informed decisions about their treatment.

Because there is no standard system, many doctors classify gastrointestinal carcinoid tumors into one of three general stages:

  • Localized spread. The tumor has not spread outside the wall of the primary organ, such as the stomach, colon or intestine.
  • Regional spread. The tumor has spread through the wall of the primary organ and to nearby tissues, such as fat, muscle or lymph nodes.
  • Distant spread. The tumor has spread to tissues or organs far away from the primary organ, such as the liver, bones or lungs.

GIST Treatment at Penn

After being diagnosed with GIST, patients at the Abramson Cancer Center may be evaluated through the Gastrointestinal Cancer Evaluation Center (GICEC). The center provides patients with expert support and evaluation to discuss treatment options and individualized treatment plans.

Patients with GISTs are treated by a multidisciplinary team of cancer specialists who see more patients with gastrointestinal (GI) cancers in one year than many doctors see in their careers.

Penn Medicine’s GI cancer program has physicians nationally recognized for their expertise in the diagnosis and treatment of cancer.

Penn’s GI cancer treatment team includes:

  • Nationally recognized medical experts with years of experience in diagnosing and treating GI cancer.
  • Nurses with advanced training and experience in caring for patients with gastrointestinal cancer.
  • Oncology Navigation Specialists to help patients navigate the health system.
  • Registered dietitians to provide nutrition counseling.
  • Cancer counselors to provide individual or family counseling for issues many cancer patients face.
  • Rehabilitation therapists who specialize in the diagnosis and treatment of physical effects from cancer and its treatment.

Penn’s GI cancer program is also supported by a robust research program with immediate translation from bench to bedside.

Many treatment options including standard treatments and clinical trials are available for patients with GIST.

Patients at Penn Medicine can benefit from participating in clinical trials that take place at Penn. Patients interested in learning more about clinical trials should speak with someone on their treatment team.

Patient navigation Specialists

Every step of cancer treatment – from cancer diagnosis, to surgery and treatment to forming a survivorship plan – comes with different needs and issues that should be addressed.

Oncology Navigation Specialists at the Abramson Cancer Center are available to make a patient’s experience as seamless as possible. As experts in navigating complex health care situations, patient navigation specialists serve as a consistent point of contact and a reliable source for advice, support and direction for patients and families. They can help in a variety of ways including; provide emotional support, identify resources, and ensure access to information, support services, educational programs and community resources.

Learn more about Oncology Navigation Specialists at the Abramson Cancer Center.

Diagnosing Gastrointestinal Stromal Tumors (GIST)

An accurate cancer diagnosis from trusted cancer specialists is the first step in getting personalized treatment options to treat gastrointestinal stromal tumors (GISTs).

Patients who choose Penn Medicine's Abramson Cancer Center, benefit from a multidisciplinary team of cancer specialists including gastroenterologists, radiologists, pathologists and surgeons who work together to provide a diagnosis and treatment plan custom designed for each patient with GISTs.

Cancer specialists at Penn Medicine are highly experienced in using the most advanced techniques for diagnosing gastrointestinal stromal tumors and are actively researching better and more precise ways to detect GISTs.

Navigating a cancer diagnosis and treatment options can be difficult, patients who wish to connect with a cancer specialist at Penn Medicine can speak with a cancer nurse, who can help them make an appointment with the right person. Penn Medicine's contact center has experienced cancer nurses available and ready to guide patients in finding the cancer specialist right for them.

To connect with a cancer nurse at Penn Medicine, patients should call 800-789-PENN (7366).

Read more Diagnosing Gastrointestinal Stromal Tumors (GIST)

Gastrointestinal Stromal Tumor (GIST) Treatment

Following the diagnosis and staging of GISTs, cancer specialists at Penn's Abramson Cancer Center develop a personalized treatment plan. Penn's treatment options for GISTs include:

  • Surgery
    • Local excision
    • Low anterior resection
    • Liver resection
    • Radiofrequency ablation
  • Radiation therapy
  • Chemotherapy and biologic therapies
    • Targeted therapies
  • Clinical trials
  • Other treatments
    • Integrative medicine and wellness
    • Palliative care
    • Penn Home Care and Hospice

Because navigating a cancer diagnosis and treatment options can be difficult, patients who wish to connect with a cancer specialist at Penn Medicine can speak with a cancer nurse, who can help them make an appointment with the right physician.

To connect with a cancer nurse at Penn Medicine, patients should call 800-789-PENN (7366).

Read more Gastrointestinal Stromal Tumor (GIST) Treatment

Gastrointestinal Stromal Tumor (GIST) Survivorship

There are more than 12 million cancer survivors living and thriving today as a result of advances in cancer treatment. However, cancer treatments can result in physical, emotional and financial complications long after the therapy is complete. Survivorship programs at Penn Medicine are a distinct phase of gastrointestinal stromal tumor (GIST) care and are designed to help patients' transition from their cancer treatment routine to a post-cancer care lifestyle.

Read more Gastrointestinal Stromal Tumor (GIST) Survivorship

Stand Up to Cancer

Peter O'Dwyer, MD, professor of Hematology-Oncology and program director of Development Therapeutics in the Abramson Cancer Center, was interviewed on NBC10's 10! Show about Penn's work as part of the Stand Up to Cancer Dream Team... Read more