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The gastrointestinal stromal tumor condition center is a comprehensive resource for cancer news insights on gastrointestinal stromal tumors. Read at CURE.

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CURE’s gastrointestinal stromal tumor page features the latest cancer news and updates on gastrointestinal stromal tumors Through articles, videos, podcasts, and more, CURE brings readers the insights of experts, cancer survivors, patients, and advocates to ensure everyone is up to date in the gastrointestinal stromal tumor.

In an interview, Dr. Rosario Ligresti highlighted what patients with gastrointestinal stromal tumors, or GIST, should know upon starting treatment.

Breaking Down the Treatment of GIST for Patients 

Dr. Rosario Ligresti discussed common signs and symptoms of GIST, as well as highlighted how the treatment landscape has changed in recent years.

Expert Oncologist Breaks Down the Current Treatment Landscape of GIST

Although gastrointestinal stromal tumor, or GIST, is a rare type of cancer, between 4,000 and 6,000 people are diagnosed with GIST in the U.S. yearly.

What Patients With GIST Need to Know About Their Disease

Among patients with advanced gastrointestinal stromal tumors, Gleevec and Mektovi was associated with benefits in progression and survival.

New Treatment Combo Shows Benefit for Patients with GIST

Dr. Breelyn Wilky discusses challenges that patients with GIST face and shares advice with those who feel overwhelmed by the rarity of their condition.

Coping With a Rare Cancer Diagnosis, Like GIST

The GIST treatment landscape has shifted in recent years due to the emergence of new therapies, many of which patients should be aware of.

How the GIST Treatment Landscape is Evolving For Patients

The gastrointestinal stromal tumor (GIST) treatment landscape has shifted in recent years due to the emergence of new therapies, many of which patients should be aware of.

“The most important thing you can do for these patients when you first see them is to perform mutational profiling. You take a piece of the tumor tissue and look for these specific gene mutations,” Dr. Rosario Ligresti explained.

Ligresti is the chief of Gastroenterology and Interventional Endoscopy at Hackensack Meridian Health, and he 

sat down for an interview with CURE to delve into the topic

How has the treatment landscape for GIST changed in recent years? What new therapies or advances should patients with GIST be aware of?

Among all the gastrointestinal tumors out there, I think this is probably emblematic of the way oncology is going. We talk about precision-guided therapy and precision medicine very often in oncology, but the pathological changes that occur in GISTs symbolize that entire field.

GISTs are very unique tumors in that they start and are driven by one of three specific genetic mutations in a patient's genes. When you have one of these mutations, it can cause these tumors to either grow more or less significantly. The way therapy has changed is that when you have these mutations, you can target them with specific medications.

Originally, when GISTs were first described, the only option for patients was surgery, which remains a very important option. You see the tumor, and you remove it. If patients are presenting with obstruction, bleeding, ulceration or trouble swallowing, removing the tumor is still critical.

However, if the tumor has been diagnosed when the patient already has advanced disease or if it has spread outside of the intestinal tract, that's when you start talking about giving patients medical therapy or chemotherapy. The chemotherapy used for these patients is very different from the standard chemotherapy for other intestinal tumors, such as adenocarcinomas, colon cancers, or stomach cancers. These are medications used specifically to block a certain genetic product that these tumors make because of genetic mutations within the tumor.

The most important thing you can do for these patients when you first see them is to perform mutational profiling. You take a piece of the tumor tissue and look for these specific gene mutations. Why does this matter? Because it really helps you pick which medication will be most effective for these tumors. This is what has really changed in this field, and it's emblematic of all of oncology now.

We are being very precise about the mutation that the patient's tumor has, whereas in the past, treatment was very broad-spectrum and generic. This is now targeted specifically to the tumor that the patient has.

“Expert Oncologist Breaks Down the Current Treatment Landscape of GIST,” by Ryan Scott. CURE, August 19, 2025; https://www.curetoday.com/view/expert-oncologist-breaks-down-the-current-treatment-landscape-of-gist

Transcript has been edited for clarity and conciseness.

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don’t forget to subscribe to CURE®’s newsletters here.

Although GIST can be identified during an endoscopy, according to Dr. Rosario Ligresti, these are still rare tumors that warrant further characterization.

The Characterization of GIST: What Patients Should Know

Although gastrointestinal stomal tumors (GIST) can be identified and diagnosed during an endoscopy, according to Dr. Rosario Ligresti, these are still rare tumors that warrant further characterization.

“It's not a common tumor, but it's common enough that [we can find them, and] patients will find it if they get an endoscopy,” Ligresti, the chief of Gastroenterology and Interventional Endoscopy at Hackensack Meridian Health, said in an interview with CURE.

In the interview, he explained how GIST differs from other types of cancers patients may have heard of and highlights what patients should know.

What exactly is GIST? How does it differ from other types of cancers patients might have heard of?

It's not a common tumor, but it's common enough that [we can find them, and] patients will find it if they get an endoscopy. Oftentimes, the first question patients ask is whether the tumor that the doctor found, which was considered a GIST, is malignant. That's really where things get [tricky] because GISTs fall into a kind of a weird place on the neoplastic or cancer spectrum.

They are not common tumors; they are tumors of the supporting structure of the gastrointestinal tract, kind of like the scaffolding. And again, they are, by and large, benign entities, but they certainly have significant malignant potential. So when we see them, and we see them often enough in patients because they are often found as lumps and bumps during an endoscopy, further characterization is definitely warranted.

As a whole, GISTs are a small percentage of all gastrointestinal neoplasms, probably only 1% to 2% percent of all GI tumors, and there are likely only about 6,000 cases reported in the United States every year. So, it's an uncommon tumor, but it's common enough, as I said, in the population that gets endoscopies.

Getting an expert opinion is essential after a rare cancer diagnosis like GIST, as each patient’s situation is unique, according to Dr. Weijing Sun.

The Importance of Expert Opinions After GIST Diagnosis 

Getting a specialized expert opinion is essential after a rare cancer diagnosis like gastrointestinal stromal tumors (GIST), as each patient’s situation is unique, according to Dr. Weijing Sun, associate director at the University of Kansas Cancer Center; he added that getting information from unchecked sources may increase confusion and stress.

“If you listen to your friends or Google [the diagnosis] yourself, [your understanding of the disease] could be much less clear and increase your stress, because every single patient is different,” he emphasized in an interview with CURE.

In the interview, he broke down why it is so important to get an expert opinion when dealing with a rare cancer, and encouraged patients to understand what options are available to them based on disease stage.

Sun also serves as Sprint Professor of Medical Oncology, a professor of Medical Oncology and Cancer Biology, and the director of Medical Oncology Division, all at the University of Kansas School of Medicine.

What should patients know or do after first receiving a rare cancer diagnosis, such as GIST?

Whenever you tell a patient they have a cancer, sarcoma or a special kind of unusual disease — especially when you're talking to a primary care physician who may not be familiar with the disease — it is, of course, a source of tremendous psychological stress for anyone. This includes those patients who are first diagnosed. That's why the first thing to do is to get a specialized, expert opinion [from someone who is familiar with] world-class guidelines. [It is also important to] know where [the tumor is located].

If [you have] a tiny, small tumor, then observation may be enough, and you need to talk to an expert about [your options]. To do this, you need to understand what low risk, intermediate risk, and high risk are, as well as what that means to you [individually], so you can understand at your level in your own language. You also need to have a specific physician or oncologist who is familiar with the disease follow your [case]. When you understand [what your options are], the stress [may] then improve...

So, firstly, you have to look for an expert opinion. You then need to know what kind of disease you're dealing with. Then, you can understand what treatment options you have and what the rationale is. Finally, [you will learn about] the treatment itself. When you get an expert opinion, you get a full diagnostic workup, and then you know what's going on. If you listen to your friends or Google it yourself, this could be much less clear and increase your stress, because every single patient is different.

The most important thing is to not compare yourself to people with a similar diagnosis, [as they may have] a completely different situation.

The Importance of Expert Opinions After a GIST Diagnosis

Unlike most GI cancers, GIST starts in supportive stromal tissue, not surface cells, and is classified as a sarcoma, says Dr. Weijing Sun.

How GIST Differs From More Common GI Cancers

Gastrointestinal stromal tumor (GIST) is a rare type of cancer that starts in the stroma, the supportive tissue beneath the inner lining of the gastrointestinal (GI) tract, according to Dr. Weijing Sun.

In a video interview with CURE, Sun explains that while most GI cancers — such as those of the stomach, colon or esophagus — begin in the epithelial cells on the surface lining, GIST originates deeper in the GI wall and belongs to the sarcoma family. It can occur anywhere along the GI tract, though most cases arise in the stomach.

Sun is the Sprint Professor of Medical Oncology, as well as a professor of Medical Oncology and Cancer Biology, and the director of Medical Oncology Division at the University of Kansas School of Medicine. He also serves as the associate director of the University of Kansas Cancer Center.

What exactly is GIST, and how does it differ from more common gastrointestinal cancers?

The full name is gastrointestinal stromal tumor. “Gastrointestinal,” people know, refers to the GI system. “Stromal” refers to the type of cells — they’re the cells below the inner lining, called stroma. Most of the time when we talk about GI cancers, we’re referring to tumors that start in the epithelial cells, the cells that line the surface of the GI tract. But with GIST, it starts below those cells — in the stroma — that’s what makes it different.

The tumor, as everybody knows, is just abnormal cell growth, and in this case, it’s abbreviated as GIST. Now, how it’s different from more typical GI cancers like esophageal, stomach, colon or rectal cancer is that those usually arise from the surface lining cells. GIST can actually occur anywhere along the GI tract, including the esophagus, stomach, small intestine, colon or rectum — but the majority come from the stomach.

Because of where it originates — in the supporting stromal tissue, not the surface lining — GIST belongs to the sarcoma family of cancers. That’s what sets it apart from the more common types of GI cancers.

Transcript has been edited for clarity and conciseness

How GIST Differs From Other GI Cancers

Dr. Weijing Sun discussed how GIST is typically diagnosed, as well as what tests are commonly used to confirm the diagnosis.

Understanding How GIST Is Diagnosed and What Patients Should Know 

Gastrointestinal stromal tumors (GIST) are typically diagnosed through a combination of symptom awareness and specialized tests, according to Dr. Weijing Sun, who says that it is incredibly important that patients stay attuned to their own body and its needs.

Moreover, one common procedure that Sun notes is endoscopic ultrasound, which is inserted through the mouth to visually examine the stomach and esophagus. Another procedure is a CT scan, which provide detailed imaging to help identify tumors.

How is GIST typically diagnosed, and what tests or imaging studies are commonly used to confirm the diagnosis?

So the first thing, is that you have to be attuned to your body and its symptoms, as well as the common tests available, because for most diseases in the gastrointestinal system, there are several things we can do. The common procedure we perform is called an endoscopic ultrasound (EUS). This involves inserting an endoscope, which has an ultrasound on its tip, through your mouth to examine your stomach and sometimes your esophagus. This allows the doctor to visually inspect your stomach.

Another commonly used test is a CT or CAT scan. This is a more precise X-ray technique, using a computer to create detailed images. These are considered imaging tests. These two are the common tests we typically use when we clinically suspect GIST. If a patient presents with bleeding symptoms, a colonoscopy can be performed, which is useful for diagnosing issues in the rectum or large intestine. So, the primary tests available are endoscopy with ultrasound and CT scans.

For more news on cancer updates, research and education,

Dr. Breelyn Wilky urged newly diagnosed GIST patients to seek support from peers and advocacy groups, and to consult experts, even if care stays local.

Second Opinions Key for Those Newly Diagnosed With GIST

Dr. Breelyn Wilky of the University of Colorado said patients newly diagnosed with gastrointestinal stromal tumor (GIST) should know they’re not alone.

She encouraged connecting with others through social media or patient groups, like the Life Raft Group, which offers trusted information and support.

Dr. Wilky also emphasized the value of seeing a GIST expert, even if most care happens locally. Second opinions from sarcoma centers can be reassuring, and travel grants are available through advocacy groups.

Wilky also serves as the director of Sarcoma Medical Oncology, deputy associate director for Clinical Research, and the Cheryl Bennett and McNeilly Family Endowed Chair in Sarcoma Research at the University of Colorado Cancer Center, UCHealth.

What advice would you give to someone newly diagnosed with just who may feel overwhelmed by the rarity of their condition?

You are not alone. Rare tumors may be uncommon overall. but they’re not rare to the people living with them, or to the doctors who treat them. I think the key is recognizing that there are other patients like you out there. Especially when you're newly diagnosed, connecting with other patients can be incredibly valuable.

There are multiple Facebook groups and other social media platforms where you can find patients from all over the world. Some of the advice you'll get there is helpful, some of it less so, so you'll need to figure out what works best for you.

The patient advocacy group Life Raft Group is an incredibly helpful resource. They've been supporting patients for 25 years; they help people live with GIST, learn about treatments, and connect with the right doctors and specialists. I always recommend my new patients check out their website and make connections there.

Another key point is to get yourself an expert. Think of it like this: if you needed heart surgery, you’d want a surgeon who’s done a lot of heart surgeries, not someone who’s only done one or two recently. Experience and familiarity matter. My patients often tell me what a relief it is to speak with someone for whom GIST isn’t rare, where a third of my clinic is made up of patients with GIST. I talk about treatment options and clinical trials multiple times a day, every clinic day.

That doesn't mean you need to travel to a specialty center for every single appointment or lab draw. You can and should partner with doctors close to home. But it's worth getting a second opinion at a sarcoma center. Groups like the Sarcoma Foundation of America even offer travel grants to help patients reach those centers. So even if money is tight or you live in a very rural area, there are resources to help you get the expert care you deserve.

Most patients find that incredibly helpful and reassuring — even if they ultimately continue treatment locally — just knowing they’ve seen someone for whom this isn’t rare.


Dr. Breelyn Wilky explains how vague symptoms and testing challenges delay GIST diagnoses

Diagnosing GIST: Key Challenges and Treatment Insights

Dr. Breelyn Wilky, an associate professor of medicine in the Department of Medical Oncology at the University of Colorado, Anschutz Medical Campus, explains the challenges patients with 

rare cancers like gastrointestinal stromal tumors (GIST) 

One of the biggest hurdles is simply getting the right diagnosis. Symptoms like belly pain, heartburn, or feeling tired are very common and usually caused by something else. Because of that, doctors and patients don’t always think about rare cancers like GIST right away. That’s why awareness is so important, according to Wilky.

A biopsy is crucial to confirm the diagnosis, but sometimes, the tissue sample isn’t clear-cut, and doctors may need to get a second opinion to be sure.

Molecular testing to identify the specific mutation driving the tumor is also key to choosing the right treatment. If the first biopsy doesn’t provide enough material, patients might need another one.

Dr. Wilky, who also serves as the director of Sarcoma Medical Oncology, deputy associate director for Clinical Research, and the Cheryl Bennett and McNeilly Family Endowed Chair in Sarcoma Research at the University of Colorado Cancer Center, UCHealth, stresses that a more streamlined process is vital for patients.

What unique challenges do patients face with rare cancers, like GIST, and what are researchers working to overcome?

There are many challenges when you're diagnosed with a rare cancer. First of all is the awareness piece, like making sure you actually get diagnosed with the right rare cancer is super, super important. When you're first presenting with symptoms, they can be very vague, like abdominal pain, heartburn, or feeling more tired than usual. These are very common symptoms, and in about 99.9% of cases, they’re caused by something other than a rare cancer. Even getting to the point of thinking this patient might have cancer based on symptoms, if they have any symptoms at all, is a big leap.

Then, to go from concerns about more common cancers, like pancreas, stomach, or colon cancer, to considering a GIST tumor growing from the small bowel and causing a weird bloating sensation, that’s even less likely. Part of the challenge is simply knowing that GIST exists, that it’s a real, rare entity with recognizable patterns and that it can be diagnosed.

Sometimes things get confusing. We say, “Tissue is always the issue,” meaning that if you have a scan or symptoms concerning for GIST, doctors will usually do a scope to get tissue and a biopsy. It’s crucial to have that biopsy reviewed to confirm whether there’s a GIST. In some cases, it’s very difficult to tell, and the sample needs to be sent out for a second pathology opinion.

Getting molecular testing and knowing the mutation that’s driving your GIST is extremely important for treatment. If you’re going to start therapy, we recommend testing the tumor, if at all possible. Sometimes the initial biopsy is very small and may not provide enough material. That’s when you should talk with your doctor about whether a second biopsy is needed.

Dr. Breelyn Wilky explains how vague symptoms and testing challenges delay GIST diagnoses; however, molecular testing can help guides treatment decisions.

Dr. Breelyn Wilky stresses the importance of expert guidance and second opinions for patients with GIST, as treatment options continue to evolve rapidly.

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