The Importance of Expert Opinions After a 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.

Transcript

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.

Transcript has been edited for clarity and conciseness.

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