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.

Dr. Weijing Sun

Patients need long-term monitoring after gastrointestinal stromal tumor surgery, with some requiring extra treatment or genetic testing to lower recurrence risk.

Why Follow-Up Care Matters After GIST Cancer Surgery

Follow-up care and monitoring remain essential for patients with gastrointestinal stromal tumors (GIST) even after successful treatment, according to Dr. Weijing Sun, associate director at the University of Kansas Cancer Center.

Sun explained that after curative surgery, patients need regular surveillance to track tumor features such as size, mutations and growth patterns. Those with higher-risk factors may also need adjuvant therapy after surgery to help reduce the chance of recurrence.

How important is follow-up care and ongoing monitoring for patients, even after successful treatment, and what should patients with this diagnosis expect long term?

It’s important. That’s a very important situation, even for those patients who had curative-intent surgery. Then the question is, you need to know the pathology of the tumor, which means when the tumor is removed, especially pathology, they are going to detail the size, the mitosis, the mutation. And it depends, of course. Everybody, regardless of situation, you need surveillance — means follow-up closely.

And then the second population is patients who need adjuvant treatment. Even if surgery removed the tumor, for those people in the intermediate- or high-risk group — which means the tumor size is bigger than expected, like five to 10 centimeters, or with mitosis more than five, or with this mutation — then adjuvant treatment means you give some treatment after surgery to decrease the chance for cancer to come back, called recurrence.

So commonly, surveillance means for the first five years, you need every three to six months to go see the doctor, and either receive endoscopy or CT scan, to evaluate and make sure there is no evidence of disease. After five years, most people will suggest continuing periodic follow-up, sometimes still with endoscopy.

There is also one small group of people who have risk of inherited disease — which can be genetically related, high risk, especially something called SDH deficiency. Sounds complicated, but you always need biological and genetic assessment. For those with family risk — for example, more than one family member with the same disease, or disease developing at a younger age — I always ask patients to get genetic consultation, especially with a geneticist expert, to understand: do you or do you not have some risk of family inherited situation? That can help for long-term follow-up as well.

So those are the factors. Even if you had curative surgery, number one, you need surveillance. Number two, some patients need treatment to decrease risk of recurrence. And number three, it’s best to also have genetic follow-up, to make sure there is no inherited risk for yourself and also for other family members.

Transcript has been edited for clarity and conciseness.

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Videos

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.

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.