Head and Neck Cancer Care | The Benefits of Partnering With Your Healthcare Team

Head and Neck Cancer Care | The Benefits of Partnering With Your Healthcare Team from Patient Empowerment Network on Vimeo.

How can head and neck cancer patients improve their care by partnering with their healthcare team? Expert Dr. Ezra Cohen discusses how patients can more actively engage in their care and treatment decisions, provides educational support resources, and shares key questions to ask providers about care.

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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Transcript:

Katherine:

Why is it so important, then, for patients to engage in their care and their treatment decisions? 

Dr. Cohen:

I think it’s critical not only for patients but for their caregivers as well. And really, patients should arm themselves with information. And fortunately, we live in an age where information is more readily available. You don’t have to depend on a single source. Now, granted, that information can be confusing, and sometimes it’s way too confusing. Sometimes that information can even be misleading. So, one does have to be careful.  

But, having said that, I think it’s so important for patients to arm themselves with information, different approaches, and what I often tell patients is get a second opinion. With one caveat, that I’ll get to in a second.  Because the reason is this is a life-threatening diagnosis for, unfortunately, many patients. And the first approach, our first chance to treat it is our best chance to treat it.

So, you really want to make sure that you’re in a center that you’re comfortable with, preferably one that has experience. A provider that you’re comfortable with, that you feel at ease asking questions, you’re not intimidated and a plan that really makes sense for you and has taken into account what is this individual.  

What’s our best approach to this individual? Not to an entire population but what are we going  to do for this person sitting in that chair at this time? Now, the caveat for second opinions, especially for patients with locally advanced disease, there is a time factor. And what I mean by that is I have seen patients get multiple opinions and delay the start of therapy, which we now realize impacts our ability to cure the cancer.

And so, I would say it’s fine to get second opinions or even third opinions, but don’t take a lot of time doing it. The earlier therapy starts, the better our chance of curing the caner. So, there is sort of a balance there. 

Katherine:

Well, that’s great advice, Dr. Cohen. PEN has also created downloadable office visit planners to help you organize your thoughts and communicate effectively with your healthcare team.  

And that’s also in the toolkit I mentioned earlier at powerfulpatients.org. And I think this is a good segue into talking about the importance of self-advocacy. If a patient is feeling that they aren’t getting the best care or they’re uncomfortable with the care they’re getting, what steps should they take to change that? 

Dr. Cohen:

Well, I think the first thing is talk to the provider. Just have that conversation. I think we have to realize that oncologists are human, and they’re people, and sometimes they get very busy. Sometimes they don’t pay attention to as much as they should. And sometimes, they don’t even know that there’s a problem. So, I would say the first thing to do is have a frank conversation with your provider. These are my questions. Don’t be afraid to ask questions. Never be afraid to ask questions. These are my expectations.  

Can you meet them? And in my experience, not even just personal experience, but working with many oncologists over two decades, most oncologists will say, “Oh, I didn’t realize that this was what you wanted. Let’s make it happen.” So, that I would say is the first thing. Talk to the people that are already taking care of you. If, or whatever reason, that doesn’t work and you’re not comfortable, I would ask that provider, “Is there somebody else that – I would like to change. Is there somebody else that you would recommend?” In the worst-case scenario, that might involve going to a different institution. And the reason I say that’s a worst-case scenario is that especially in the setting of locally advanced disease, interrupting therapy or changing therapy in the middle really would have a dramatic adverse impact on outcome.  

So, I would try to avoid that as much as possible. If there are natural points in the care where it makes sense to consider a change, I think that would be a lot less impactful and make more sense. For instance, if somebody is going from having completed a course of chemotherapy radiation, they now have no evidence of disease on their scans, and they want to switch to a center that is closer to home, for instance. That makes sense. And we have certainly many patients that do that and that’s a natural transition. But, to change in the middle of care, that can often have a dramatic negative impact. 

Who Are the Members of a Head and Neck Cancer Care Team?

Who Are the Members of a Head and Neck Cancer Care Team? from Patient Empowerment Network on Vimeo.

Head and neck cancer care may involve a whole team of healthcare providers, but who are they? Expert Dr. Ari Rosenberg discusses the various team members and their roles in patient care.

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

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Transcript:

Katherine:

There can be a number of people on a head and neck cancer patient’s care team. Would you give us an overview of who these team members might be, and what their roles are? 

Dr. Rosenberg:

Yeah, absolutely. And this is one thing, actually, that I enjoy about treating head and neck cancer which is that because of the complexity of the head and neck in general, cancers that arise really do require a multidisciplinary team to figure out what the best treatment approach is.  

And not only that, but most of the treatment plans that we incorporate for the treatment of head and neck cancer involve a very large and robust support team that provide different perspectives and help in optimizing outcomes for patients.

So, the three types of oncologists in our program, for example, all new patients that come in meet all three of these types of oncologists. So, one is an ENT, or a head and neck oncologist, or a head and neck surgeon, that’s one important member of the team. The second is a radiation oncologist. So, a radiation oncologist is the team member that uses radiation to treat head and neck cancer. And the third is someone like myself, a medical oncologist. We’re the ones that do the chemotherapy, or other types of systemic therapy, or other types of things like that.

And those are really the three tools, and the three oncologists that use those tools to figure out what the best treatment approach is. However, because many of the treatments that we give, whether it’s surgical treatment, or whether it’s some combination of chemotherapy and radiation, or of chemoradiation, there are many side effects of treatment. And as such, there are many other team members that are involved in supporting patients and optimizing outcomes through any of those treatment modalities.  

So, that oftentimes involves specialized nursing, speech and swallow doctors and pathologists, dentistry, and prosthodontics. Sometimes other types of surgeons are involved, like neurosurgeons, or skull-based surgeons, or nasopharynx surgeons as well.  

As well as nutrition and dietician, physical therapy, psychosocial supportive services. I’m probably missing many, but on and on, really are all involved in the care of patients during treatment. And not only that, but even in the non-patient facing side, there are other team members also that are very important that a patient may not meet, such as the pathologists that help us determine the subtype of the cancer, whether it’s HPV related or not. Sometimes some of the genomic makers and things like that that can be very important, or immune markers that are very important for treatment decisions.  

We have radiologists that have expertise in the head and neck space that help us determine exactly the extent of the disease and look at the imaging in a multidisciplinary fashion. Again, I probably missed some of the team members offhand, but yes, it’s definitely a team sport, which is really, really important. 

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.

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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. 

Understanding the Types of Head and Neck Cancer

Understanding the Types of Head and Neck Cancer from Patient Empowerment Network on Vimeo.

Which cancers are considered “head and neck cancer”? Expert Dr. Ari Rosenberg shares an overview of the types of head and neck cancer and their location in the body.

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

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Transcript:

Katherine:

Well, let’s start by understanding what head and neck cancer is. Is it a group of cancers? 

Dr. Rosenberg:

Yeah, that’s a great question. So, head and neck cancer is really any type of cancer that develops from the head and neck area. Generally arising from sometimes the mouth, the throat, the voice box are some of the more common areas, but even the sinuses or the nasal cavities are some other areas where head and neck cancer can arise.  

The majority of head and neck cancers are actually called squamous cell carcinoma. About 95 percent are squamous cell carcinomas, and they tend to arrive from the mucosal lining of some of these different parts of the head and neck area.  

However, the other 5 percent are other types of head and neck cancers, such as salivary gland cancers, or other rare types of cancers that can also arise in the head and neck.  

And within head and neck squamous cell carcinoma, there’s really two different types that we think about – in 2023 at least. One is HPV-associated squamous cell carcinoma of the head and neck, which is associated with a virus called HPV, or human papillomavirus. And, of course, we also see HPV-negative, or non-HPV-related cancers, which are the squamous cell carcinomas of the head and neck that can be associated, for example, with smoking or alcohol as the major cause of effect. 

Head & Neck Cancer Care Partner Follow-Up Office Visit Planner

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Expert Advice for Newly Diagnosed Head and Neck Cancer Patients

Expert Advice for Newly Diagnosed Head and Neck Cancer Patients from Patient Empowerment Network on Vimeo.

What steps should newly diagnosed head and neck cancer patients take following a diagnosis? Dr. Jessica Geiger shares advice to help patients play an active role in their care.

Dr. Jessica Geiger is a medical oncologist at the Cleveland Clinic. Learn more about Dr. Geiger

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Transcript:

Katherine Banwell:

What three key pieces of advice would you have for a patient who’s just been diagnosed with head and neck cancer?  

Dr. Jessica Geiger:

Well, first, obviously, you have to see an oncologist you have trust and faith in. 

And whether that oncologist is a surgical oncologist which for this disease would be a head and neck cancer specialist, an ENT, or a head and neck surgeon. So, just make sure that you are comfortable with your team, because it can be a very long process in terms of treatment as well as recovery and ongoing surveillance. That’s number one. I think number two is seek out clinical trials if you have the opportunity to do that. This is a disease that’s not rare, but it’s not as common as breast cancer or colon cancer or prostate cancer. You could go to almost any general practicing medical oncology office, and they may or may not have very many head and neck cancer patients at a given time, because it’s much rarer compared to the other more common adult cancers. 

So, if you have the opportunity to seek out a clinical trial, I think that is great because we don’t have a lot of different types of therapies like you see with other cancers. 

Katherine Banwell:

Yeah. 

Dr. Jessica Geiger:

And then number three, and I can’t stress this enough, even early on in your head and neck cancer journey, again, whether it’s a very early-stage cancer or later-stage cancer. I think getting involved with the appropriate support specialties, meaning speech and language pathology, dental care, occupational therapy.  We couldn’t do what we do without some of these support specialties. And especially speech and language pathology for swallowing, it can’t be stressed enough that early intervention can be really meaningful and really impactful on function after head and neck cancer treatment.  

Katherine Banwell:

Mm-hm.  Dr. Geiger, what is your advice to patients who may feel like they’re hurting feelings by seeking a specialist or even a second opinion?  

Dr. Jessica Geiger:

So, first of all, I know it’s easier said than done, you shouldn’t worry about hurting anyone’s feelings. At the end of the day, you need to be in charge of your health. And you need to be an advocate for yourself or an advocate to your family members who may be going through this. So, I think you need to do what is best for you and what you feel most comfortable about. And if that is seeking an opinion elsewhere, I think if your provider – you’re asking for a second opinion gets their feelings hurt or is a bit offended. I would consider that to be a pretty big red flag. I have patients all the time who may ask me for a second opinion, or they want to go to a different institution for an opinion to see what else is out there. And sometimes I even offer to reach out to different contacts that I know at different other institutions if there’s something that I think may be better than what I can offer them with what we have. 

Especially when it comes to clinical trials. So, I would just try to empower the patients to – this is your life. This is your health. And you can’t worry about what us in the medical profession are going to worry about. For most of us, I would say there’s a lot of patients. We want to do what is best for each and every one of them. And if it’s not with us, then please let me help you find someone who is better for you. 

What Are the Types of Head and Neck Cancer?

What Are the Types of Head and Neck Cancer? from Patient Empowerment Network on Vimeo.

What is head and neck cancer? What cancers are included in this classification? Dr. Jessica Geiger provides a definition and reviews the main types of head and neck cancer.

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Transcript:

Katherine Banwell:

What is head and neck cancer? 

Dr. Jessica Geiger:

Head and neck cancer is sort of a broad term to include all cancers, all malignancies within the upper aero-digestive system. When we think about head and neck cancer, the vast majority of those cancers are going to be squamous cell carcinomas that start anywhere from the tip of the tongue to the back of the throat to the voice box area. But head and neck cancer can also include cancer of the salivary glands, skull base, or sinus cancers as well.   

Katherine Banwell:

What are the types of head and neck cancer? And where can they start in the body? 

Dr. Jessica Geiger:

There are several different types. The majority of them are called squamous cell carcinomas. Squamous cell cancers or squamous cell carcinoma encompasses over 90 percent of head and neck cancers.  

And those can start anywhere on the tip of the tongue, anywhere in the oral cavity, the tonsils, the back of the throat called the oropharynx, or also in the larynx or around the voice box in those areas. But head and neck cancer can also include salivary gland cancers of which there are dozens of different recognized histologies.  These are cancers of the larger, major salivary glands like the parotid glands or the submandibular glands. But they can also include cancers of minor salivary glands that aren’t even named but are found all over the upper aero-digestive mucosa and are there. Head and neck cancers can also include what we refer to as skull-based tumors or midline sinus, peri-sinus cancers as well.  

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Do Telephone-Only Visits Qualify As a Telemedicine Visit?

Do Telephone-Only Visits Qualify As a Telemedicine Visit? from Patient Empowerment Network on Vimeo.

For head and neck cancer patients, do telephone-only visits really qualify as a telemedicine visit? Watch as expert Dr. Samantha Tamfrom Henry Ford Health System explains care concerns that can be covered in telephone versus video visits – and patients who can benefit from the use of virtual visits. 

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Transcript:

Samantha Tam, MD, FRCSC, MPH: 

So from a… Telephone-only visits have a lot of drawbacks to them, I think even virtually assessing a patient with regards to how they’re doing generally, a general physical examination is very important. On top of that, we have a lot of sensitive conversations in patients that have head and neck cancer, so it’s important to also read things like non-verbal body language, so definitely the video component is extremely useful for providers that are caring for patients with head and neck cancer. However, in patients that might not have access to video visits, might not have the technology, I think that the number one priority in our minds is that this patient gets the best care that they are able to get, and whether that this means a telephone-only type of a visit is possible for these patients, we adjust our…I guess we adjust our requirements, we adjust our ability to deliver care based on that, so that might mean touching base with the patient on the phone at first in order to understand exactly what they’re going through, talk them through the next steps so that they know what to accept in order to make their care more streamlined later on. I don’t think that telephone visits will completely replace either virtual visits or in-person visits, but I think that, again, they are a tool, and they’re a tool that especially patients that might be more disadvantaged, such as not having access to good Internet might not have access to the technology required for a virtual visit, those patients need to be considered when we consider utilizing telephone-only care. 

Tips for a Telemedicine Visit From a Head and Neck Cancer Expert

Tips for a Telemedicine Visit From a Head and Neck Cancer Expert from Patient Empowerment Network on Vimeo.

How can head and neck cancer patients prepare for telemedicine visits? Watch as expert Dr. Samantha Tamfrom Henry Ford Health System shares her tips for telemedicine best practices and tests that can be helpful used in conjunction with virtual care.

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Transcript:

Samantha Tam, MD, FRCSC, MPH: 

So in head and neck cancer, a lot of the virtual visits are mainly based on obtaining a clinical history and having a discussion with your provider verbally as opposed to a lot of physical examination, this is unfortunately the limit of virtual care, and definitely, especially in head and neck cancer, a lot of our examination is through into your ears, into your nose, into your mouth with endoscopic examinations weaved into it, and definitely like CT scans are useful as a modality, as a modality of investigation to have ready prior to your visit with your head and neck cancer provider. Tips that I have for families and for patients that are facing a diagnosis of head and neck cancer before your virtual visit is to make sure that you have any kind of questions that you have written down so that you can make sure that your provider is able to go through each one of these questions to ensure that you have a good understanding of exactly what the next steps are, or what the diagnosis is and what the plan might be moving forward. 

When Should Head and Neck Cancer Patients Seek In-Person Care?

When Should Head and Neck Cancer Patients Seek In-Person Care? from Patient Empowerment Network on Vimeo.

What are instances for head and neck cancer patients to seek in-person visits for care? Watch as expert Dr. Samantha Tam from Henry Ford Health System explains situations that warrant in-person visits to care providers and her recommended precautions to ensure optimal safety for in-person care. 

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Transcript:

Samantha Tam, MD, FRCSC, MPH: 

So to protect yourself from the Delta variant of coronavirus, one of the most important steps would be for vaccination and also following national guidelines in terms of how to protect yourself generally, like good hand hygiene, mask wearing, et cetera, et cetera, in terms of trying to seek care virtually versus in-person, patients should discuss this with their provider to see exactly what they are comfortable with, some post-operative visits might be able to be moved to a virtual platform, but again, sometimes it is difficult to examine patients with…that have undergone complex head and neck cancer surgery on a virtual platform adequately. So I think that a one-on-one discussion with your provider should give you a good idea about what can be moved in-person onto a virtual platform, and that way you can ensure that you have the adequate amount of care that you need for your head and neck cancer. 

Okay. Seeking in-person care, I think is especially important for patients that are having symptoms from their head and neck cancer, these patients are the ones that I would consider at highest risk for some type of abnormality on physical examination that we might not be able to catch on a virtual platform, and patients that are far out from surveillance and well into survivorship, these visits might be less necessary to be in person. So again, I think it’s important for you to discuss with your provider regarding whether or not they think that you need to be seen in person versus virtually.