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Empowering Patients and Families Facing a Stomach Cancer Diagnosis

Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the gastric cancer (stomach cancer) community. Gastric cancer research and treatment options are evolving, and it’s essential for patients and families to educate themselves about clinical trials, risk factors, barriers to and disparities in care. With this goal in mind, PEN continues to build on to its [ACT]IVATED Gastric Cancer program, which aims to inform, empower, and engage patients to stay updated about the latest in gastric cancer care.

Gastric cancer awareness needs more visibility for multiple reasons. Gastric cancer incidence is higher in immigrant BIPOC groups as well as specific Asian, Hispanic, and other groups. And with research discoveries, screening guidelines need to be updated in the U.S.

PEN is proud to add information about gastric cancer to educate more patients and their families about this rising health concern. Cancer survivor Lisa Hatfield interviewed expert Dr. Jun Gong from Cedars-Sinai Medical Center and Dr. Joo Ha Hwang from Stanford Medicine as part of [ACT]IVATED Gastric Cancer.     

Gastric cancer patient Hoon also shared his personal journey with cancer, the HIPEC treatment he received after a recurrence, lessons learned, and his notable experience as how his journey began. “As a fit man at age 38, my symptoms started with stomach pains and bloating that wouldn’t go away. My primary care doctor prescribed antacids that worked temporarily until I stopped taking them. My doctor then ordered an endoscopy that revealed an ulcer. I felt emotional relief temporarily, but then I had a biopsy that showed cancer that was eventually diagnosed as stage IV gastric cancer after further testing. I thought to myself, how could this happen to me when I run 2 miles every day?

Gastric Cancer Risk Factors

 Gastric cancer has strong links to risk factors for some certain population groups like Asian and Hispanic population groups, so it’s essential for patients to educate themselves about risk factors for early detection and treatment. Dr. Jun Gong from Cedars-Sinai Medical Center discussed a known risk factor for gastric cancer. “…there’s been growing evidence that H. pylori infection affects both Asians and Hispanics and is one of the more pivotal risk factors to address on a systematic level. Here, there have been ongoing research where they’re just identifying H. pylori as a procedure and eradicating it with treatment. 

As gastric cancer research expands, additional risk factors have been discovered. Dr. Jun Gong discussed some beyond Asian and Hispanic groups. “But here on the West, we tend to see more of risk factors related to the Western lifestyle. Here, gastritis or chronic gastritis, heartburn, longstanding inflammation is a risk factor. Heavy smoking, heavy alcohol use, and obesity are emerging risk factors for stomach cancer as well.”

And even though East Asia is a well-known high-risk population for gastric cancer, research has uncovered other population groups as well. Dr. Joo Ha Hwang from Stanford Medicine discussed what research has unveiled. ”… the research community in general, is one, trying to identify patients who are at particularly high risk for developing gastric cancer. And we have a pretty good idea on who that is. And it’s essentially recent immigrants from high-risk areas such as East Asia, Eastern Europe, Western, South America.”

Gastric Cancer Disparities and Challenges

Dr. Joo Ha Hwang discussed challenges in early diagnosis. “Well, the key challenge in detecting early gastric cancer is that there are no symptoms or the symptoms are very generalized. You can have some vague abdominal pain, your appetite might change a little bit, but we don’t see symptoms until the later stages of gastric cancer when it’s no longer curable. So the real key challenge is to diagnose it at an early stage when it’s still curable and what we’re doing in terms of our research…”

Gastric cancer experts have also noticed some disparities in care access. Transportation barriers and challenges to receiving caregiver support are a couple challenges. Dr. Jun Gong discussed some additional challenges that he’s seen with his patients. “There are several challenges that we see in our routine care of patients that are of Hispanic or Asian ethnicity with regards to access to treatment to stomach cancer. This often involves language barriers where, at least here geographically in Los Angeles, it’s a culturally diverse population, large metropolitan center where patients often speak non-English language. And this is often a barrier to communicating and getting timely access. Other concepts that we’ve come into as well is fear of insurance coverage denials in seeing the subspecialists or access to timely diagnostics and approval of treatments through insurance.

Gastric cancer challenges encompass other factors as well. Dr. Jun Gong shared another phenomenon  that he’s witnessed. “Cultural beliefs have a huge impact on access to care in stomach cancer, and I think we can do better with addressing cultural barriers to care.

Gastric Cancer Care Solutions and Successes

Patient advocates and others working toward closing disparity gaps have made some strides in improving care. Diversity and inclusion research and strategies have made an impact. Dr. Jun Gong discussed some efforts that have shown success. “ think one of the innovations here at our center is that we have a center of community outreach and a disparities core here where we recognize that certain cultures and this can expand beyond Asians and Hispanics into all racial groups, that there’s a heavily…there’s an important influence of church in this sector here.

And so what we do is we actively engage leaders in the churches, in the local churches for Asians, Hispanics, and a lot of different other subgroups. And we find this a great, great relationship and partnership to have for promoting awareness and educating patients about resources that we have within a culturally specific location where patients and family members find a great deal of trust in the church.

Receiving second or even third opinions can be particularly helpful in optimizing gastric cancer care. Dr. Jun Gong discussed the successes of remote consultations.  “…I actually am okay with virtual medicine consultations for those who are…who find it difficult to travel to an in-person visit. Again, I can’t speak for all other cancer centers or oncologists, but we at least offer this ability to do that, to help with that barrier of transportation. And when they are connected with us sometimes if we are able to, we can even follow peripherally, almost like an extra care partner with the main local doctor who’s driving more of the day-to-day, and we’re providing our recommendations as an extension from an urban medical center.

I know it’s specific to certain institutions and certain centers, but I actually am okay with virtual medicine consultations for those who are…who find it difficult to travel to an in-person visit, again, I can’t speak for all other cancer centers or oncologists, but we at least offer this ability to do that, to help with that barrier of transportation. And when they are connected with us sometimes if we are able to, we can even follow peripherally, almost like an extra care partner with the main local doctor who’s driving more of the day-to-day, and we’re providing our recommendations as an extension from an urban medical center.”

[ACT]IVATED Gastric Cancer Program Resources

The [ACT]IVATED Gastric Cancer program series takes a three-part approach to inform, empower, and engage both the overall gastric cancer community and gastric cancer patient groups who experience health disparities. The series includes the following resources:

Though there are gastric cancer disparities, patients and care partners can be proactive in educating themselves to help work toward optimal care. We hope you can take advantage of these valuable resources to aid in your gastric cancer care for yourself or for your loved one.

[ACT]IVATED Gastric Cancer Patient Plan

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ACTIVATED Gastric Toolkit_Checklist

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How Can Public Policy Measures Reduce Gastric Cancer in High-Risk Populations?

How Can Public Policy Measures Reduce Gastric Cancer in High-Risk Populations? from Patient Empowerment Network on Vimeo.

What are some ways that gastric cancer disparities can potentially be reduced by public policy actions? Expert Dr. Joo Ha Hwang from Stanford Medicine explains the significance of USPSTF recommendations, how these recommendations have helped in screening guidelines of other cancers, and proactive patient advice to help close the gastric cancer disparity gap. 

[ACT]IVATION Tip

“…I would encourage the listeners, especially if you have relationships with people in Congress, we need to reexamine making recommendations at a population level, and we really need to make recommendations based on individual risks, especially when we have clear-cut data as to who’s at high risk and what screening methods work.”

 

See More from [ACT]IVATED Gastric Cancer

Related Resources:

What Are the GAPS Study Key Findings About Gastric Precancer?

What Key Ways Is Early Detection of Stomach Cancer Delayed?

What Is the Role of Biomarker Testing in Stomach Cancer?

Transcript:

Lisa Hatfield:

Dr. Hwang, what public policy measures do you believe are crucial for reducing gastric cancer incidence and mortality, particularly in high-risk groups?

Dr. Joo Ha Hwang:  

So, there’s one key thing that really needs to happen. And that is there’s a body called the United States Preventative Services Task Force. They make all the guideline recommendations for screening. And what is important about a USPSTF guideline recommendation is that insurance companies are mandated to cover these screening tests at no cost. So, for example, breast cancer screening is part of this, colon cancer screening is part of the USPSTF recommendations.

So, what we really need is the USPSTF to recommend gastric cancer screening in high-risk populations. And there are clear high risk populations in the United States. And again, these are mainly immigrants from high-risk regions. But for example there’s a recent study out that showed that immigrants from Korea, Korean Americans have a 12-fold higher risk of developing gastric cancer than the baseline population.

And that risk is actually higher than the risk of colon cancer in the baseline population. And the biologic, the USPSTF already recommends colon cancer screening for that threshold and colon cancer screening is much, much more invasive than upper endoscopy because it requires a prep as well as doing the endoscopy. So, there are clearly high-risk groups out there. We’ve tried to engage the USPSTF to help make these recommendations, but it appears that the population at risk is too small.

And so they’re reluctant to make any recommendations for such a small population. The problem I have with that is we are entering an era of what we call precision medicine or personalized medicine. And that’s where we look at each individual, we don’t look at it on a population level. We look at each individual and determine what’s your risk for each individual cancer or disease? And let’s treat you for that.

And the approach that the USPSTF takes is still more of a population-based approach and not a precision-based approach. And the activation that I would encourage the listeners, especially if you have relationships with people in Congress, we need to reexamine making recommendations at a population level, and we really need to make recommendations based on individual risks, especially when we have clear-cut data as to who’s at high risk and what screening methods work.

And so this is a challenge for patients, especially the immigrant population who’s at high risk for developing gastric cancer. There are very weak screening recommendations, and it’s typically not covered by insurance. And so there’s a high cost to the patient, where this really should be some. It’s an effective screening method by doing endoscopy or even H. pylori testing that should be covered, because cost-effectiveness studies have been performed that show that this is cost-effective.


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What Is the Role of Biomarker Testing in Stomach Cancer?

What Is the Role of Biomarker Testing in Stomach Cancer? from Patient Empowerment Network on Vimeo.

What’s the current status of biomarker testing in gastric cancer? Expert Dr. Joo Ha Hwang from Stanford Medicine shares an update about biomarker testing in gastric cancer research, H. pylori infection testing, and proactive patient advice about H. pylori and potential symptoms.

[ACT]IVATION Tip

…go to your doctor, especially if you come from an area, or your parents come from an area that has high prevalence of H. pylori, which is pretty much anywhere in the world besides the United States, then you should talk to your doctor about getting H. pylori testing, especially if you have any abdominal pain symptoms or changes in appetite.”

 

See More from [ACT]IVATED Gastric Cancer

Related Resources:

What Are the GAPS Study Key Findings About Gastric Precancer?

What Key Ways Is Early Detection of Stomach Cancer Delayed?

How Can Public Policy Measures Reduce Gastric Cancer in High-Risk Populations?

Transcript:

Lisa Hatfield:

Dr. Hwang, can you speak to the role biomarker testing plays in gastric cancer? And what key information should patients know about early detection as it relates to biomarker testing?

Dr. Joo Ha Hwang:

So, currently there are no good biomarkers to detect gastric cancer at an early stage. So there’s a lot of investigation going on. Unfortunately, up to this point, gastric cancer research has been woefully underfunded on a national level. Most gastric cancer research has been funded by foundations and smaller interests. The NIH up until now has not put a lot of money into gastric cancer. Fortunately, we see this environment changing, and there’s an increasing interest at the NIH to fund gastric cancer research.

But that’s where identification of biomarkers comes from. There are companies out there that are looking at like circulating tumor DNA and other biomarkers. Again, I would say that there are very preliminary. And so I wouldn’t at this point recommend having these tests done because they’re so preliminary.

The one thing that I wouldn’t call a traditional biomarker, but is something that really increases your risk would be the presence of H. pylori infection. And so you can be tested for H. pylori infection by, there’s serum testing, there’s breath testing, you can get it on endoscopy, or the most common way is a stool antigen to test to see if you had H. pylori. The reason that that’s important is H. pylori is considered the number one cause of chronic gastric inflammation that then leads to gastric cancer.

And so the WHO has classified this as a class one carcinogen. And if you do have H. pylori, you should definitely get that treated. And depending on your age and how long you’ve had H. pylori infection, you should probably have endoscopy if you’re over the age of 40 to determine whether or not there’s any changes in the lining of your stomach that would increase your risk for developing gastric cancer. 

So, my activation tip for this would be go to your doctor, especially if you come from an area, or your parents come from an area that has high prevalence of H. pylori, which is pretty much anywhere in the world besides the United States, then you should talk to your doctor about getting H. pylori testing, especially if you have any abdominal pain symptoms or changes in appetite.


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What Are the GAPS Study Key Findings About Gastric Precancer?

What Are the GAPS Study Key Findings About Gastric Precancer? from Patient Empowerment Network on Vimeo.

What have been key findings on gastric precancer from the GAPS Study? Expert Dr. Joo Ha Hwang from Stanford Medicine discusses the GAPS Study, patient groups at risk of H. pylori and gastric intestinal metaplasia, and proactive patient advice for early detection of gastric cancer.

[ACT]IVATION Tip

“…talk with your physician on whether or not you’re at high risk and you should have endoscopic screening or if you have gastric intestinal metaplasia (GIM). So let’s say you’ve had endoscopy and you have been diagnosed with gastric intestinal metaplasia, there are some guidelines out there that actually are deceptive.”

 

See More from [ACT]IVATED Gastric Cancer

Related Resources:

What Is the Role of Biomarker Testing in Stomach Cancer?

What Key Ways Is Early Detection of Stomach Cancer Delayed?

How Can Public Policy Measures Reduce Gastric Cancer in High-Risk Populations?

Transcript:

Lisa Hatfield:

Dr. Hwang, can you tell us more about the gastric precancerous condition study, the GAPS Study and its key findings so far? And how do you combine clinical and endoscopic data with bio-specimens in the GAPS Study to improve early cancer detection?

Dr. Joo Ha Hwang:

So, the GAPS study is a study that we started at Stanford when I first got there about six years ago. This is a prospective study where we enroll patients who we feel are at high risk for developing gastric cancer and then follow them longitudinally. And we do endoscopy and we do biopsies, we do systematic biopsies using something called the Sydney Protocol, where we basically map the stomach and take biopsies. And then with those biopsies, we run several different analysis on them.

And our goal is to identify biomarkers that would help to identify patients who are particularly high risk. So the thing that we’re looking for in particular, there’s a condition called gastric intestinal metaplasia. And that’s the pre-cancerous condition. That’s a change in the lining of the stomach, typically from chronic inflammation, and most commonly due to chronic H. pylori infection.

So unfortunately it’s quite prevalent. If you look at the Asian population, it can be over 30 percent of the population of Asians, East Asians can have gastric intestinal metaplasia, but not all of those patients will then go on to gastric cancer. And so, there’s a cost, especially in the U.S. the cost is pretty high to do endoscopic screening and surveillance. And so what we’re trying to do is further identify those patients who are at particularly high risk, who have gastric intestinal metaplasia, who would warrant ongoing surveillance given their risk of developing gastric cancer in the future.

So, this is going to take many, many years because it takes a long time for this to evolve. And so, we’re hoping to follow hundreds of patients longitudinally and determine what biomarkers, what other clinical factors may help to predict the progression onto gastric cancer so that we can detect gastric cancer early in those patients and cure them of gastric cancer.

So my activation tip for this particular question or for this particular topic would be that, again, talk with your physician on whether or not you’re at high risk and you should have endoscopic screening or if you have gastric intestinal metaplasia (GIM). So let’s say you’ve had endoscopy and you have been diagnosed with gastric intestinal metaplasia, there are some guidelines out there that actually are deceptive. And if you are in the group that is at higher risk of developing gastric cancer, you should talk to your physician about how having endoscopic surveillance and what that interval should be for having endoscopic surveillance to make sure that you don’t progress onto developing gastric cancer.

Lisa Hatfield:

And just out of curiosity, with this GAPS Study, trying to identify biomarkers that might be used in the future to track that, are these biomarkers something that you find in the tissue from the biopsy, are they biomarkers you might find in the blood or saliva? So people can have less invasive means to have surveillance for gastric cancer?

Dr. Joo Ha Hwang:

We’re investigating all of that. So when we enroll a patient in GAPS, we collect saliva, we collect blood, serum. So ideally it would be a noninvasive biomarker, but the best biomarker is something that wouldn’t require endoscopy. But we are also looking at the tissue itself. So all of these things are being investigated. So stay tuned.

Lisa Hatfield:

And my last question about that, in case if a patient is watching this in the Bay Area, is your study currently enrolling participants?

Dr. Joo Ha Hwang:

Yes, we are actively enrolling and we welcome anyone’s participation.


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Head and Neck Cancer | Key Factors Affecting Treatment Decisions

Head and Neck Cancer | Key Factors Affecting Treatment Decisions from Patient Empowerment Network on Vimeo.

What are key factors that impact head and neck cancer treatment decisions? Expert Dr. Ezra Cohen discusses the role of imaging tests, individual patient factors, and cancer characteristics in making treatment decisions. 

Dr. Ezra Cohen is a medical oncologist, head and neck cancer researcher and Chief Medical Officer of Oncology at Tempus Labs.

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Head and Neck Cancer Research | How Innovation Leads to Advances in Care

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Transcript:

Katherine:

How is a path decided then or determined for an individual patient? Is there key lab testing that can impact prognosis and treatment options? 

Dr. Cohen:

Once a patient comes to the attention of the team, and that will usually be accompanied by some sort of biopsy, some sort of pathological diagnosis to confirm that indeed, we’re dealing with let’s say, squamous cell carcinoma. Then the next thing we want to do is we want to stage the disease. And what that means is basically we want to know as much as possible, or accurately as possible, where the cancer is and how big it is.  

So, that would almost always involve scans, usually CT scans, sometimes a PET scan. And we can talk about the advantages and disadvantages of each. Sometimes an MRI in certain situations. But suffice it to say some sort of scan. Some sort of imaging that can tell us where the cancer is, how big it is, if there are any lymph nodes involved and if that cancer has spread beyond the head and neck area.

Once we stage the disease, most patients, and I think certainly most patients should be discussed, their pace, that is, should be discussed at a multidisciplinary tumor board. Where, again, all the specialists convene at the same time, and really go over all the data that are available on that individual and come up with a treatment recommendation.  

That treatment recommendation can be a single modality. So, some small tumors can just be addressed by surgery alone, or radiation therapy alone. But, for more advanced tumors, it is often all three modalities: surgery, radiation, and chemotherapy. And the way they’re sequenced, the way they’re implemented, should be individualized for that specific patient. Again, with those two goals in mind: to cure the cancer and to preserve function.   

Katherine:

What else could guide a treatment decision? For instance, a patient’s co-morbidity, their age, things like that? 

Dr. Cohen:

All of those things. 

Katherine:

Yeah. 

Dr. Cohen:

So, beyond – and those are things of course that we would consider in the discussion, not only at the tumor board but of course with the patient. We know that the therapy that we often recommend is quite aggressive and toxic.  

Now, the justification for that is that we’re going to try to cure the cancer. And, so we think, and of course we discuss this with the patient, that putting the patient through this course of treatment is worthwhile, makes sense, because at the end of it, the goal is for the cancer to be gone. Now, not all patients will agree with that and of course, we, based on comorbidities and age and something we call performance status, we also want to make sure that the patient can get through this aggressive treatment.

Let me just go on a bit of a tangent and describe the therapy for a patient with local advanced head and neck cancer. It would involve about six to seven weeks of radiation, given Monday to Friday. Usually either weekly, or every three-week chemotherapy depending on the chemotherapy chosen.  

And possibly even surgery either before or after the combined chemotherapy and radiation. And so, we’re talking about at least a three-month course of treatment going from the start to recovery. Another three months of side effects that are less intense but still there. And it’s a lot for patients to go through. Patients and their caregivers.

And so, if we feel that there’s a serious comorbidity that would not allow the patient to do that, we sometimes have to alter treatment so that obviously, we don’t want to harm the patient with our treatment. Certainly we don’t want to put them in a life-threatening situation. So, we do have to take those things into account. The good thing about all this – or I guess the silver lining, if you will, is that these toxicities get better.   

Patients recover. So, what I tell patients is we’re going to put you through hell, but at the end of it, I want to be sitting across from you and saying the cancer is gone, and you’re swallowing, and you’re talking normally. 

Expert Guidance: Stomach Cancer Basics for Newly Diagnosed Patients

Expert Guidance: Stomach Cancer Basics for Newly Diagnosed Patients from Patient Empowerment Network on Vimeo.

What are stomach cancer basics for newly diagnosed patients to know? Expert Dr. Jun Gong from Cedar-Sinai Medical Center explains stomach cancer staging, where the cancer occurs, and advice for patients.

[ACT]IVATION Tip

“…ask the physician or care provider, ‘What is my stage of stomach or gastric cancer?’ and we will do our best to explain the stage.”

Download Resource GuideDescargar guía de recursos

See More from [ACT]IVATED Gastric Cancer

Related Resources:

What Early Phase Gastric Cancer Trials Are Showing Promise?

How Is Gastric Cancer Screening and Care Impacted by Culture?

Do Gastric Cancer Risk Factors Differ Among Hispanic Communities?

Do Gastric Cancer Risk Factors Differ Among Hispanic Communities?

Transcript:

Lisa:

Dr. Gong, how do you explain stomach cancer to your newly diagnosed patients and care partners? And really important too, how do you explain disease staging to them?

Dr. Jun Gong:

So the way I explain stomach cancer or gastric cancer, is another term for this disease, to my patients is that we all are familiar somewhat with our organ that is the stomach. This is the organ that helps digest and process our foods. And it’s the organ that connects to the esophagus and then to the small bowel. And unfortunately, cancers can arise from this organ. And this is where it’s a little bit unique in the sense that unlike other cancers, the stomach is almost like a tube. It’s a hollow structure.

Unlike breast cancer, for example, where you can have a discrete mass where you can actually draw on a caliper and say this is 2 centimeters or 3 centimeters in dimension, stomach cancer tends to grow along the walls of this tube infiltrating to the inside of the lumen. Or it can even spread to the outside of the stomach as well. 

And so this is how the staging is a little bit different for stomach or gastric cancer. And the way, instead of measuring by size, we measure how the depth of the infiltration of the tumor is along the thickness of the wall. And so the staging is similar to other cancer types where there’s a stage I, II, III, or IV connotation. And stage IV means that the cancer has spread outside the stomach and into distant sites such as the liver or lungs, while tumors of the stomach that are confined to the stomach and even to the lymph nodes around the stomach are still classified as I, II, or III. So this is a little bit about, a background, about how we explain what stomach cancer is and how the staging system works.

My activation tip for patients and care partners who are newly diagnosed with gastric or stomach cancers and are unsure about their stage is that it is always more than appropriate to ask the physician or care provider, “What is my stage of stomach or gastric cancer?” and we will do our best to explain the stage. And, of course, this is dependent oftentimes on the availability of information from a diagnostic workup. And how we stage the patient is usually dependent on imaging such as CT or MRIs or PET scans. And it’s often combined with ultrasound or endoscopic procedures such as an upper endoscopy or an endoscopic ultrasound, which is a specialized procedure that allows you to look within the thickness of the stomach to see how deep or how depth of the invasion of the stomach cancer is.

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Head and Neck Cancer Staging | What Patients Need to Know

Head and Neck Cancer Staging | What Patients Need to Know from Patient Empowerment Network on Vimeo.

What do head and neck cancer patients need to know about staging? Expert Dr. Ari Rosenberg discusses the testing involved in determining head and neck cancer stages. 

Dr. Ari Rosenberg is a medical oncologist and Assistant Professor of Medicine at the University of Chicago Medicine. Learn more about Dr. Rosenberg.

See More From The Pro-Active Head and Neck Cancer Patient Toolkit

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Transcript:

Katherine:

How is head and neck cancer staged? 

Dr. Rosenberg:

Yeah, so after the diagnosis of head and neck cancer, there’s generally a number of tests that are done to determine where it spreads to.  

Where it started, where it spreads to, to figure out what the best treatment approach is. So, oftentimes, that starts with a physical examination, often in combination with an ENT, or a head and neck surgeon. Oftentimes, that will involve endoscopy, which is a camera that the ENT uses to look very closely and carefully on the extent of the tumor itself. 

Additionally, we generally tend to use imaging as well, in order to stage or determine the extent of where the tumor might have spread to. Oftentimes, that involves imaging of the head and neck, of course, so that’s sometimes a CT scan, or an MRI scan. Oftentimes, it involves imaging of the chest to see if there’s been any spread to the chest or the lungs, that’s oftentimes a CT scan of the chest.  

And typically, that also involves, in many cases, a PET CT scan, which is a specialized scan that actually looks at the whole body and identifies where, in as precise a manner as we can determine, where the cancer has spread to.  

So, I would say that’s generally the overview. Some of the subtypes may have some other tests that may be specific to your specific scenario, but I think those are some of the more general staging evaluations that we do.