Tag Archive for: squamous cell carcinoma

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

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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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Head and Neck Cancer | Key Factors Affecting Treatment Decisions

 How Is Head & Neck Cancer Treatment Approached?

How Is Head & Neck Cancer Treatment Approached?

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. 

Head and Neck Cancer | Key Factors Affecting Treatment Decisions

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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 Treatment and Research Updates

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. 

How Is Head & Neck Cancer Treatment Approached?

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How Is Head & Neck Cancer Treatment Approached? from Patient Empowerment Network on Vimeo.

How is head and neck cancer treated? Expert Dr. Ezra Cohen discusses treatment methods that are utilized in head and neck cancer and details how an approach is chosen. 

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 Care | The Benefits of Partnering With Your Healthcare Team

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

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Transcript:

Katherine:

What is the typical route for a head and neck cancer patient? Does it start with surgery?  

Dr. Cohen:

Well, it really depends. And what I said is that head and neck cancer, for the most part, is a locally advanced disease. And I say that because it has certain implications about the way we think about treating patients. And what I mean by that is that the great majority of patients with head and neck cancer will initially present with either a localized tumor or a tumor with involved lymph nodes.

In other words, and that’s 90 percent, 90 percent of patients will present that way. In other words, it’s actually uncommon for patients with head and neck cancer to present with metastatic disease. That’s different than many other cancers. Lung cancer, pancreatic cancer, breast cancer, many times in those situations, patients when they come to the attention of a physician, unfortunately, already have metastatic disease. That’s not the case with head and neck.  

And so, what does that mean to have a disease that’s locally advanced? Well, the most important thing, the first thing, is that most patients, we are going to be treating with curative intent. That is, we’re going to try to cure the disease. The second thing is that the disease, and its treatment, are going to have functional outcomes, potentially for that patient.

And that gets back to something I was saying before in terms of think about how much of how we define being human happens above the clavicles. It’s really what makes us human. And so that has dramatic implications obviously for the patient. So, for head and neck cancer, the fact that it’s a locally advanced disease means that we’re going to think about curing the majority of patients, at least try to. But, we’re also going to think very strongly about how can we preserve those critical organs of swallowing and speaking and socializing?  

It also is a disease that tends to recur or come back in a locally advanced fashion. And that’s the other part of why I call it a locally advanced disease. So, unfortunately, oftentimes when head and neck cancer recurs, and obviously we try to avoid that, it comes back in the same area. And, of course that has the same implications for what we try to do with treating patients.  

Katherine:

So, even using radiation and chemotherapy, other immunotherapies, the cancer will still come back? 

Dr. Cohen:

Yeah. Yeah. And I realized I didn’t really answer your question in terms of the approach to the patient. I just gave you some general guidelines. So, let me step back and talk a little bit about that. And then we can talk about the integration of different modalities. 

Katherine:

Sure. 

Dr. Cohen:

The approach really, it depends on a few things. The primary is really where the tumor is, where the primary tumor is.  

And the reason behind that is what I as saying about the functional outcome. For instance, if somebody has a small tumor of their tongue, of the front of their tongue let’s say, a surgeon can easily remove that and the patient can continue to speak and swallow normally. And so, in cases like that, obviously we would do surgery first and then, if the patient needed it for whatever reason, we might follow up with radiation or chemotherapy.

The converse is true for a tumor that may be farther back in the throat. So, let’s say an area called the oropharynx that involves the throat that you can see, the part of the throat that you can see when you open your mouth widely. Well, if we take out a tumor there, that will have much more significant implications for long-term function. The patient may not be able to swallow or speak normally again.  

And so, for those types of tumors, we would take a non-surgical approach. Not that surgery couldn’t be done, it could. But, sometimes it’s better not to do surgery up front to preserve function. So, again, it’s those two goals that we have to keep in mind. We want to cure the cancer, but we want to preserve function. 

Katherine:

Right. 

Dr. Cohen:

Then you mentioned about chemotherapy, radiation, immunotherapy. And in a non-surgical approach, that’s what we would do first. We would do either radiation therapy alone, or radiation and chemotherapy. And that primarily depends on how extensive the cancer is. The more advanced it is, the more likely we are to add chemotherapy. Because we know from clinical trials, getting back to the importance of clinical trials, we know that adding chemotherapy in advanced cancers does improve survival. And so, that’s predicated on really where the cancer is and how large it is. 

Katherine:

What about treating more advanced disease? Are the choices different? 

Dr. Cohen:

Sure. Well, let’s define what we mean by more advanced. If the cancer is still localized, so even if it’s advanced, let’s say it’s a large tumor that’s invading other structures. Let’s say there’s a lot of lymph nodes involved. We would still take – assuming the patient, ultimately, it’s always the patient’s decision. We would recommend to the patient often that we try to take a curative approach.

And that curative approach in quite locally advanced cancers would almost involve everybody, so, chemotherapy, radiation ,and surgery. Almost always involve those things to try to eradicate the cancer. If we’re talking about an advanced cancer in the sense that the cancer had come back, so it’s recurrent or it had metastasized, then we really are talking about mostly systemic therapy or some sort of drug therapy.  

And now, that almost for all patients, includes immunotherapy. Again, based on the results of clinical trials. That’s relatively new. That’s been approved now for about five years, maybe six. But it has led to dramatic improvements in outcome for these patients. Now, when we look at the long-term data from these clinical trials, we’re beginning to see that about one in five patients with recurrent or metastatic disease are still alive five, six, even seven years later. That’s something that we did not see in the past. And so, immunotherapy has been a tremendous advance forward. Now, of course, the other side of that is four out of five patients are still dying so we clearly need to do better. But the fact that one out of five is surviving is amazing. 

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

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Head and Neck Cancer Research | How Innovation Leads to Advances in Care from Patient Empowerment Network on Vimeo.

How can innovation lead to head and neck cancer research advances? Expert Dr. Ezra Cohen discusses how improvements in technology have led to changes in diagnostics, therapeutics, surgery, and radiation. 

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 Care | The Benefits of Partnering With Your Healthcare Team

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

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How Is Head & Neck Cancer Treatment Approached?

Transcript:

Katherine:

How are innovations in technologies accelerating head and neck cancer research? 

Dr. Cohen:

I think, in many ways. First there’s – we mentioned the multidisciplinary approach of head and neck cancer and each of the disciplines, the major therapeutic disciplines, being medical oncology, radiation and surgery, really have had dramatic technological advances in the last, certainly in the last decade, maybe a little bit longer.  

For the surgery, it’s been the ability to do minimally invasive surgery, usually through a robot called transoral resection. And this is, as the name implies, literally a robot that’s controlled at the side of the operating room or even sometimes controlled remotely. But the advantage is that the instrument is much smaller than the human hand, and it can articulate in every degree possible. Which, obviously, the human hand has restrictions.

So, in other words, that robot can get into places and get into areas that would be very difficult without a much bigger surgery if done without the robot. And now, that surgery called TORS, transoral robotic surgery, has become pretty well, pretty standard for cancers of the base of the tongue and the oral pharynx.  

That is really the back of the throat. Whereas in the past, in order to access those areas, the patient’s jaw would have to have been split, and the area had been opened. Now, that’s not necessary at all, and the surgery has turned into a much, much faster recovery with equivalent oncologic outcomes. And, of course, there’s more advancements going on in that regard.

For radiation, I think the most relevant technological advances have been the ability to focus radiation through different means on the tumor and spare normal tissue. Whether that’s with something called IMRT, which is essentially a much more sophisticated way to deliver radiation that is controlled by a computer that allows the radiation fields to be contoured around structures in a 3D fashion, much more than we were able to do prior to that.  

And, of course, the other way is to use a different type of energy. Whereas conventional radiation, when we talk about radiation, we’re talking about photons. Protons, now, are becoming more widely available. And that particle has a different way to deliver energy and can actually spare normal tissue but still deliver the energy desired to the tumor. So, tremendous advances in radiation.

And then, of course, for medical oncologists, we’ve had advancements in both diagnostics and in therapeutics. 10 years ago, sequencing a cancer, deciphering the genes that drive it, the mutations that drive it, was uncommon. And, in fact, even I dare say, frowned upon by the community.  

But now, there isn’t a patient that I see who has recurrent or metastatic disease that I don’t sequence. I sequence them all. 

Katherine:

Wow.  

Dr. Cohen:

Because the technology is readily available and quite honestly, it gives us more information that we might be able to apply to the treatment of that patient. So, that’s been a very large, a very big advancement. And then, of course, therapeutically we’ve had different agents that we’ve been able to look at. I mentioned immunotherapy. There are many new drugs that are being tested and hopefully very soon even approved for patients with head and neck cancer.  

Head and Neck Cancer Clinical Trials | What Are the Benefits?

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Head and Neck Cancer Clinical Trials | What Are the Benefits? from Patient Empowerment Network on Vimeo.

What benefits can head and neck cancer clinical trials bring to patients? Expert Dr. Ezra Cohen discusses clinical trial participation rates, explains how trials move research forward, and details questions to ask your doctor when considering joining a clinical trial. 

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:

A key part of research moving forward is the clinical trial process. Can you talk about the benefits of patient participation?  

Dr. Cohen:

Of course. And I’m certainly a firm believer. It’s been part of what I’ve been doing for, again, over 20 years. And, so, certainly I think clinical trials are a critical component of our ability to produce better outcomes and move forward. The sobering reality is that only 3  percent of adult patients actually participate in clinical trials.  

Katherine:

Wow. 

Dr. Cohen:

And if we’re really going to move the field forward and be where we want to be with cancer, and that is to either cure as many people as we can or turn cancer into a chronic disease, better yet in many individuals, detect it early and prevent it. We need much greater participation in clinical trials. So, that being said, nothing is going to happen, we are not going to make strides forward in therapeutics and diagnostics, whatever in prevention, without clinical trials. Even the basic standards of care that we engage in now, and I mentioned that drug pembrolizumab (Keytruda), that was approved on the basis of a large randomized clinical trial.  

Now, having said that, I think patients – part of the responsibility is on patients to ask their provider, “Well, what about clinical trials?” There is almost always a clinical trial that is available given a specific setting. The challenge is that it may not be available where the patient is seeking care. And there is a large disconnect in that regard. Now, there are different organizations that are trying to improve that, improve the diversity of participation in clinical trials and the equality of availability of clinical trials to the entire population, not just people going to large academic medical centers. But, that’s the first thing I would tell patients, is part of the list of questions that you have for your provider, especially at the beginning and throughout the entire process, is there a clinical trial that would be applicable to my situation?  

And if the answer is, “Well, no.” The follow-up should be, “Well, what about in the area?” Or, “What about something that may not necessarily be available in this practice but what about somewhere else in town or somewhere I could access?” Of course, that may not be possible for all patients. But if it is, I would encourage all people to ask that question. And then there is a large responsibility, I think, on providers to make clinical trials available if we’re going to improve that number from 3 percent. 

There are a lot of exciting agents being studied now in head and neck cancer – immunotherapy drugs, antibody drug conjugates, novel mechanisms, cell therapies, vaccines. So, there’s certainly no paucity of interest in developing drugs in head and neck cancer and technologies as well. So, there are clinical trials available, and I think we, as a community, need to make a – need to do better in enrolling patients on those studies. 

Head and Neck Cancer Treatment and Research Updates

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Head and Neck Cancer Treatment and Research Updates from Patient Empowerment Network on Vimeo.

What is the latest head and neck cancer news? Expert Dr. Ezra Cohen discusses research updates in immunotherapy and shares credible resources for staying informed about head and neck cancer treatment and research.

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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How Is Head & Neck Cancer Treatment Approached?

Transcript:

Katherine:

Well, thank you so much for taking time out of your schedule to join us today. As you know, head and neck cancer research has been progressing quickly. What recent developments do you think patients should know about? 

Dr. Cohen:

Well, there are a lot, really. And I think probably the first and foremost is the impact that immunotherapy is having on treatment for head and neck cancer. And that is mostly in the form of a drug called pembrolizumab (Keytruda). It’s an anti-PD1 antibody that really – what it does is stimulate a specific cell type in the immune system called T cells. And now, it’s approved for the treatment of patients with recurrent or metastatic disease.

However, for patients, I think probably the most important development over the last little while is the realization of the important of the multidisciplinary team in the management of patients with head and neck cancer.  

It used to be that the care was driven by a single oncologist or a single individual, but over the last, I would say mostly over the last decade, maybe a little but more than that. There’s becoming this realization more and more and the implementation, of course, of these multidisciplinary approaches involving a surgeon, a radiation oncologist, a medical oncologist, but much more than that. A speech and language pathologist, a swallowing expert, nutritionist, psychologist, pharmacists, dentists, of course oral surgeons.  

With the, now, the prospective data to validate that in a multidisciplinary setting, with a multidisciplinary tumor board where each patient is discussed with all of these individuals providing input. The outcomes are substantially better. And so, for patients, I think that that’s had the greatest impact, because we’re talking about patients who can be cured for the most part.  

And those cure rates increasing just simply by getting the right people involved in their care. 

Katherine:

Yeah. Very important, then. As I mentioned a few minutes ago, patients should be aware of all of their options. How can patients stay informed as the treatment landscape expands and changes?  

Dr. Cohen:

Yeah. It’s challenging because not only are patients and their caregivers grappling with this diagnosis, and it’s a brand-new world for almost all of them. Many patients have never had to deal with cancer ever before. Pile onto that the functional and social aspects of having head and neck cancer. Remember this is a cancer that affects so much of what makes us human – our ability to communicate, to speak, to eat, to swallow. And so, now, patients are flung into this situation, and it is challenging to find good information.  

Having said that, often the oncologists that are involved in the person’s care should be a great source of information, especially if those oncologists have experience treating head and neck cancer. And incidentally, just as an aside, there is also data and mounting data that the more experienced a center is in treating head and neck cancer, the better the outcomes. And so, that’s something that patients may want to think about as they choose their providers.

But then there are also public sources. There are support groups for head and neck cancer. The Head and Neck Cancer Alliance is one of those. SPOHNC is another and they’re excellent sources of information for patients. American Cancer Society is always a very good source of information, mostly for cancer basics but they do have the pages that are dedicated to head and neck cancer.  

And then the American Society of Clinical Oncology, or ASCO, actually does have a patient-facing part of their organization, and that can help not only with information about the disease, but it can also help find providers that have a specific interest in this type of cancer. 

Understanding the Types of Head and Neck Cancer

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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. 

Lung Cancer Clinical Trials 201 Resource Guide

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Patient Profile: Eva Grayzel

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When stage IV squamous cell carcinoma survivor Eva Grayzel shares her story, you can tell that she has a zeal for life. She survived  oral cancer and works as a performance artist and speaker. Diagnosed at age 33, she was told that she had a 15 percent chance of survival. Eva’s journey started with a sore on the side of her tongue that wouldn’t resolve .

About eight weeks after noticing the sore, Eva saw an oral surgeon who examined her tongue. She complained about the pain, and her oral surgeon said, “if it bothers you so much, we can take it off.” She agreed. Two days later, Eva felt fine, and two weeks later, she received an assuring call from the surgeon’s office to inform her that her biopsy was negative. She was confused and wondered if there was a mistake of some sort. “I literally thought, ‘What on earth could they be looking for in a biopsy of the tongue?’ The receptionist told Eva she had nothing to worry about. Two years passed, and she had no obvious symptoms. But early stage oral cancer often goes without symptoms. Two years later, another sore developed on her tongue over the previous biopsy site. 

Eva returned to the doctor after eight weeks, and they diagnosed her with hyperkeratosis, which is basically a callus. “They treated me for trauma for nine months; they had my teeth shaved down; they gave me gels and rinses. It was a nightmare.” Her doctors also told her that the amount of speaking in her work exacerbated her symptoms, and she regrets that she didn’t know more about oral cancer at that time. Eventually, a second opinion brought her the correct diagnosis of squamous cell carcinoma, which was treated with surgery and radiation and followed up with reconstructive surgeries.

Throughout her cancer journey, Eva has endured a lot. She had one-third of her tongue removed, a partial tongue reconstruction from arm and leg tissue, a modified radical neck dissection, and a maximum dose of radiation therapy. “It was most definitely the hardest thing I’ve ever been through during treatment. I planned my funeral and didn’t think I was going to survive.” Through an extraordinarily successful treatment plan, Eva not only survived but also regained her ability to speak clearly. With a second chance at life, she couldn’t let the same thing happen to someone else.

Radiation to the head and neck is the most difficult part of the body to tolerate therapy. “What I learned is that you’re stronger than you think you are. You have more strength than you know you do. I really didn’t think I could get through this, and somehow I pulled through.”

Eva has learned some things and has some advice for survivors. “There’s always hope, and hope is different to different people. For some it might be no pain, for others it might be living six months to make it to their kid’s graduation or wedding. Only you know what’s right for you.” 

She has self-care advice for care partners as well, “You need to take care of yourselves so that you are renewed, refreshed, and at your best to take care of the person you’re caring for. When you’re tired, rest. When you need a break, take it. Go out for lunch with a friend or take a walk. Do what you need to do for yourself, so you can be the best caregiver you can be.” 

For family and friends who want to help but don’t know what to say, Eva advises asking yes/no questions: “I’m making chicken for dinner, can I make you some? I’m taking the children to the park, can I take yours? I’m going to the market, can I pick up anything for you” On a visit, empower the patient by asking them how they want to spend the time, instead of making the visit about your agenda. Bring with you what you think they may enjoy; polish their nails, massage their feet, read the sermon of the week, bring a game, a joke book….

Eva has lessons learned about oral health. “I would say as an oral cancer survivor, I’ve learned a lot about oral health. And this goes for all cancer survivors, the health of your mouth is the window to the health of your full body. So, if your body is fighting cancer and even recovering from treatment, keeping your mouth in its cleanest state will serve you well.” 

Even for those who have adult children, Eva is an advocate for telling your kids the truth. Patients might think grown children are too busy with their own responsibilities, but she advises talking to them about your cancer, because it’s an opportunity to teach them about what it means to be a family. If you choose to hide a diagnosis from children, you are promoting secrecy and dishonesty, you risk a lot of anger if they find out you withheld the information, and mostly, it’s an opportunity to teach children how to overcome life’s challenges.  Life is in balance. When tragedy strikes, notice the opposing forces of gratitude and hope.  

Every cancer survivor should get an oral cancer screening at their dental checkup. If you don’t know whether you receive a screening, visit sixstepscreening.org. “Or simply tell your dentist, ‘I want an oral cancer screening. It’s the standard of care, the American Dental Association says that everybody should be getting the screening at least once a year at a dental checkup.’”

After surgery and reconstruction, Eva can swallow normally but can’t feel or taste in the area where her cancer was. She can only chew on the right side of her mouth but still feels grateful. “The body is amazing. It adapts in a phenomenal way, so whatever you lose, however your body changes, it will learn to adapt to work for you. It takes time, it takes patience. But there’s hope for a really good life after cancer, but the mind is part of it, and also taking good care of yourself is really important so that you can be the best person you can be.”

Eva’s children were 5 and 7 when she endured treatment for cancer. To help children like her own cope with a diagnosis in the family,  she wrote two children’s books to promote dialogue between adults and children and to help them cope with their feelings and fears. 

Eva speaks to oral cancer survivors internationally and provides hope. If you know someone who has been recently diagnosed, don’t hesitate to reach out to Eva: eva@evagrayzel.com

How Can You Access Personalized Medicine for Non-Small Cell Lung Cancer?

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How Can You Access Personalized Medicine for Non-Small Cell Lung Cancer? from Patient Empowerment Network on Vimeo.

What is the right therapy for your non-small cell lung cancer? This animated video reviews treatment decision considerations, the importance of biomarker testing, and steps to engage in your non-small cell lung cancer care.

See More From INSIST! Lung Cancer

Related Resources:

Expert Advice for Navigating Non-Small Cell Lung Cancer Care and Treatment

 Lung Cancer Targeted Therapy: What Is It and Who Is It Right For?

 Why Do Lung Cancer Patients Need Molecular Testing Before Choosing Treatment?

Transcript:

No two people with lung cancer are the same, so finding the right treatment for each patient is critical.  

While receiving a non-small cell lung cancer diagnosis and choosing a therapy can be overwhelming, advancements in research are providing more options and more hope than ever. 

So, what should be considered when making a treatment decision? Physicians may consider factors such as: 

  • A patient’s age, overall health and any pre-existing conditions they have. 
  • As well as their type and stage of lung cancer. 
  • And their test results, including biomarker testing. 

Biomarker testing, also referred to as molecular testing, identifies key markers such as genes, proteins, or other molecules in a sample of tissue, blood, or other body fluid. Understanding the genetic makeup of the lung cancer helps your team better understand your disease and may influence treatment options – leading to more personalized care.  

For example, if the PD-L1 receptor is detected during biomarker testing, the patient may benefit from immunotherapy. Additionally, identification of an ALK mutation or an EGFR mutation may indicate that a patient will respond to a targeted therapy. 

So, how can you access personalized medicine? You can start by talking with your doctor about biomarker testing and ask if your cancer has been tested for all known biomarkers. Request to review the test results together and ask if there are any markers that affect your risk, prognosis, or treatment options.  

Before you choose a therapy, weigh the pros and cons of each option with your doctor. Ask about side effects and if any of your existing health conditions may impact your therapy choice. You should also discuss your treatment choices with a care partner, such as a friend or loved one – someone you trust.  

So, How Can You Take Action? 

  • Ask your doctor if you have had, or will receive, all essential testing, including biomarker testing. 
  • Seek a lung cancer specialist to guide your care. A second opinion consultation with a specialist can confirm your diagnosis and treatment approach. 
  • Partner with your doctor to determine a personalized treatment approach for YOUR lung cancer. 
  • Bring a friend or a loved one to your appointments to help you process and recall information. 
  • And finally, always speak up and ask questions. Remember, you have a voice in YOUR lung cancer care. 
  • To learn more about your non-small cell lung cancer and to access tools for self-advocacy, visit powerfulpatients.org/lungcancer.  

Non-Melanoma Skin Cancer Treatment Options

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Non-Melanoma Skin Cancer Treatment Options from Patient Empowerment Network on Vimeo.

What are the treatment options for advanced non-melanoma skin cancer? Dr. Sunandana Chandra shares insight on how a treatment approach is determined, the types of non-melanoma skin cancer, and discusses factors considered when choosing therapy. 

Dr. Sunandana Chandra is a medical oncologist and Associate Professor of Medicine at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. Learn more about Dr. Chandra.

Katherine:

How is advanced non-melanoma skin cancer treated? 

Dr. Chandra:

So, usually, the first thing that might occur is a biopsy to see what it is that we think that we’re dealing with. A biopsy is then reviewed by a pathologist or a dermatopathologist, and then those results are then relayed back to the doctor who did the biopsy. 

Oftentimes, it’s a dermatologist, a primary care doctor etc. Once we have the exact diagnosis and the exact pathology, we can then talk about, okay, is this removable? Is this excisable? In that situation, a dermatologist can do it; a Mohs surgeon who is a sub-specialized dermatologist can do it. In certain instances, they may say this is a larger spot, it’s a spot, etcetera, so they then may involve our surgeons or our surgical oncologists. Now, the vast majority of non-melanoma skin cancers are treated by surgery alone. They’re just excised or removed, and then the person is followed closely.  

However, there are certainly situations when a person’s non-melanoma skin cancer, meaning a Merkel cell carcinoma, a cutaneous squamous cell carcinoma, or a basal cell carcinoma being the three most common non-melanoma skin cancers. 

There are situations where those are too big to respect or to surgically remove. Potentially, it may cause too much disfigurement. Potentially a person or a patient may feel that they are just sick of surgery. They want no further surgery. In those instances, those patients are then often referred to medical oncologists. These are cancer doctors who treat the cancer with systemic or whole body cancer drugs and/or radiation oncologists who can use radiation beams to often treat the cancer. 

Katherine:

Dr. Chandra, when you’re deciding on a treatment plan for a patient, what factors are taken into consideration? 

Dr. Chandra:

So, usually, first and foremost, we have to get to know our patient and understand their own preferences, what their own goals of care are with respect to how they want to live their life, how aggressive or not they would like to be with respect to their cancer management, their functional status, which we technically call performance and status, their other illnesses or comorbidities that may kind of complicated cancer management.  

For example, people with autoimmune diseases who are on steroids, or people who have uncontrolled diabetes, these are just two examples of a potential infinite list of a person’s comorbidities or illnesses that they may have that may complicate things. All of these are taken into consideration. And, I think at the end of the day, we as their doctor want to do what’s best for them and what makes the most sense to them and for them, but certainly, it takes a very detailed discussion with our patients, their loved ones, their family members, caregivers, as well as our multidisciplinary team members to kind of figure out what the next best steps are.  

Dr. Chandra:

I think this is a time where if a person is diagnosed with a non-melanoma skin cancer, I want them to know that there are options out there, options that were not even available a decade ago, certainly, maybe even five years ago that have really revolutionized how we treat our patients with advanced non-melanoma skin cancers. And so, the sooner they reach out for help, I think the better the outcomes are. So, we are here to help those particular patients to the best of our ability.  

Advice for Accessing Financial Resources for Lung Cancer Care

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Advice for Accessing Financial Resources for Lung Cancer Care from Patient Empowerment Network on Vimeo.

Is there financial assistance available for lung cancer patients? Lung cancer expert Dr. Jyoti Patel shares support resources and tips to help reduce the financial burden of treatment.

Jyoti Patel, MD, is Medical Director of Thoracic Oncology and Assistant Director for Clinical Research at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. She is also Associate Vice-Chair for Clinical Research and a Professor in the Division of Hematology and Oncology at Northwestern University Feinberg School of Medicine. Dr. Patel is a leader in thoracic oncology, focusing her efforts on the development and evaluation of novel molecular markers and therapeutics in patients battling non-small cell lung cancer. Learn more about Dr. Patel.

See More from Thrive Lung Cancer

Related Resources:

Advice for Managing Lung Cancer Symptoms and Treatment Side Effects

 Why Lung Cancer Patient Advocacy Is Essential

 Personalized Medicine: Making Lung Cancer Treatment Decisions

Transcript:

Katherine:

Dr. Patel, we’d be remiss if we didn’t bring up financial concerns.  

Treatment and regular appointments can become quite expensive. So, understanding that everyone’s situation is different, where can patients turn to if they need resources for financial support?  

Dr. Patel:

When your team first talks to you about therapies, it’s important that they have transparency about what something may cost or the risks that you may incur by starting treatment. However, most of us have access to wonderful financial teams and financial counselors that can help you manage this.  

Many of our industry partners and friends are able to have assistance programs to provide oral drugs at discounted rates or to work, again, with organizations in which you may be able to have reduced rates for many of your drugs. Most of the infusional drugs, again, should be covered by insurance. But outside of drug costs, there are a lot of other costs.  

So, parking every time you come for a doctor’s appointment. Time off from work. Time that you’re hiring a babysitter to take care of your children when you’re at treatment. All of those add up. And so, again, perhaps talking to the social worker at your cancer center or talking to the financial counselor, there are often local programs that can help ease some of those burdens. 

Tips for Managing Lung Cancer Anxiety and Worry

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Tips for Managing Lung Cancer Anxiety and Worry from Patient Empowerment Network on Vimeo.

Lung cancer expert Dr. Jyoti Patel shares support resources to help ease anxiety and explains how multidisciplinary care teams, including palliative care, can support patients and family members.

Jyoti Patel, MD, is Medical Director of Thoracic Oncology and Assistant Director for Clinical Research at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. She is also Associate Vice-Chair for Clinical Research and a Professor in the Division of Hematology and Oncology at Northwestern University Feinberg School of Medicine. Dr. Patel is a leader in thoracic oncology, focusing her efforts on the development and evaluation of novel molecular markers and therapeutics in patients battling non-small cell lung cancer. Learn more about Dr. Patel.

See More from Thrive Lung Cancer

Related Resources:

Advice for Managing Lung Cancer Symptoms and Treatment Side Effects

 Why Lung Cancer Patient Advocacy Is Essential

 Collaborating on Lung Cancer Treatment Decisions With Your Team

Transcript:

Katherine:

Managing the worry associated with a diagnosis or concerns about progression can lead to anxiety and fear in some patients. So, why is it important for patients to share how they’re feeling with their healthcare team? And who all is in the healthcare team who would be able to help a patient?  

Dr. Patel:

So, the anxiety of cancer therapies, of CT scans, of tumor assessments, can be overpowering. And then the longer-term anxieties. Who’s going to care for me, who’s going to care for my family, am I doing the things that are important to me, are ones that weigh heavily on all of us.  

So, certainly, again, carrying these anxieties over a long time have adverse impacts. So, people who are more anxious may not sleep as well. They may lose weight. They may not be as robust. And so, all of those things weigh into our ability to give more treatment. So, we want people to be psychologically well. We have, generally now in our healthcare teams, a number of people who are there to help.  

And so, we have nurse navigators. Most cancer centers have a number of psychologists and psychiatrists that work with our teams. But more than that, even things like nutritionists and social workers make a significant impact. And then I’m surely lucky to work with a world-class palliative care team.  

So, these are doctors that really focus on symptoms of cancer, the toxicities of treatment. And we work together to ensure the best outcome for our patients.  

Advice for Managing Lung Cancer Symptoms and Treatment Side Effects

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Advice for Managing Lung Cancer Symptoms and Treatment Side Effects from Patient Empowerment Network on Vimeo.

Lung cancer expert Dr. Jyoti Patel explains common symptoms and treatment side effects, and discusses how treatment approaches may vary depending on treatment goals for each patient.

Jyoti Patel, MD, is Medical Director of Thoracic Oncology and Assistant Director for Clinical Research at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. She is also Associate Vice-Chair for Clinical Research and a Professor in the Division of Hematology and Oncology at Northwestern University Feinberg School of Medicine. Dr. Patel is a leader in thoracic oncology, focusing her efforts on the development and evaluation of novel molecular markers and therapeutics in patients battling non-small cell lung cancer. Learn more about Dr. Patel.

See More from Thrive Lung Cancer

Related Resources:

Tips for Managing Lung Cancer Anxiety and Worry

 Personalized Medicine: Making Lung Cancer Treatment Decisions

 Collaborating on Lung Cancer Treatment Decisions With Your Team

Transcript:

Katherine:

Symptoms and side effects can sometimes be a burden to patients undergoing treatment. What are the most common issues that patients face? 

Dr. Patel:

So, common symptoms from treatment can include fatigue, lack of appetite, disinterest in the things that made you really excited before. Infrequently now we have severe nausea, because we have such good antinausea medications.  

Sometimes we’ll have problems with blood counts or risks of infection. All of these vary by the treatment that’s rendered. And so, often it may be that you’re on a targeted therapy.  

Some targeted therapies, for example, can cause swelling in your legs. Immunotherapies are generally well-tolerated but can cause significant side effects in a small minority of people that could include inflammation in the gut, for example.  

So, everything is sort of tailored, I would say. Most frequently, I hear about the fatigue, and then the ongoing stressors of living with cancer. So, the financial toxicity certainly. These drugs are expensive. But not only that, often people have changed the way they work. Their family members have changed how they work to support their loved one. So, bringing people to appointments.  

There’s a lot on someone’s plate. And that can contribute to fatigue and even some anxiety.  

Katherine:

Yeah. What strategies are in place to manage symptoms and side effects? 

Dr. Patel:

So, having a patient who’s knowledgeable about potential side effects and a good advocate for themselves is probably the best way to manage therapy. So, ongoing dialogue with your clinical team, with your nurse, with your physician, are absolutely important. But most of us work with teams of healthcare workers. And so, when I think about our clinic, we have financial counselors, we have social workers, we have dieticians and nutritionists, we work with physical therapists. And importantly, we work with a palliative care team that helps us, again, manage some of the toxicities of therapy.  

We think that they provide a longitudinal assessment of patients and remember what’s most important to a patient over time. Whereas often in the moment there’s this, we want to make the tumor shrink. We think about what we can do immediately. It’s often really helpful to have another team that can provide support over the patient’s journey to help us, again, prioritize what they wanted to do the most.  

Katherine:

Mm-hmm. Dr. Patel, why do you think it’s necessary for patients to tell their doctor about any issues they may be having? Even the little ones.  

Dr. Patel:

I think most of us want to be good patients. And so, we minimize things because we think that, okay, we’re using precious time to talk about things that may seem minor. But, again, all of these add up.  

Even minor symptoms, particularly in the era of immunotherapy, can turn out to be big problems. So, as I say now to my patients particularly on immunotherapy, if something seems a little bit off and you can’t put your finger on it, I just need to know so I can at least do the appropriate workup to make sure that we’re not missing anything. Because symptoms of underlying problems can be very misleading.  

Moreover, I think the cumulative burden of cancer. So, again, we talked a little bit about the financial toxicity, the emotional cost, the time involved in treatment, all of that adds up. And you never want to get it to a breaking point. We want to manage it early on, so we can, again, make decisions together and keep wellness and the quality of survival at the forefront.  

Personalized Medicine | Making Lung Cancer Treatment Decisions

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Personalized Medicine | Making Lung Cancer Treatment Decisions from Patient Empowerment Network on Vimeo.

Lung cancer expert Dr. Jyoti Patel explains how biomarker testing is used to guide treatment decisions and personalize care plans for patients.

Jyoti Patel, MD, is Medical Director of Thoracic Oncology and Assistant Director for Clinical Research at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. She is also Associate Vice-Chair for Clinical Research and a Professor in the Division of Hematology and Oncology at Northwestern University Feinberg School of Medicine. Dr. Patel is a leader in thoracic oncology, focusing her efforts on the development and evaluation of novel molecular markers and therapeutics in patients battling non-small cell lung cancer. Learn more about Dr. Patel.

See More from Thrive Lung Cancer

Related Resources:

Collaborating on Lung Cancer Treatment Decisions With Your Team

 Expert Perspective | The Value of Empowering Patients

Transcript:

Katherine:

Since no two people with lung cancer are the same, how do you decide which treatment is best for each patient? 

Dr. Patel:

So, the process of evaluating a patient can actually take a little bit of time. So, we first meet a patient, and they may have suspicious findings. We want to understand the full stage of their cancer. And so, in 2022, that’s doing an MRI of the brain, a CT of the chest and abdomen, and often times a pet scan to look for any evidence of distant disease.  

So, once we have radiographic modeling of where we think the tumor is, sometimes we need to do a repeat biopsy to confirm whether or not lymph nodes are involved or the cancer has spread. After we do the biopsy and say that it’s non-small cell lung cancer or small cell lung cancer, we make decisions about looking for genetic markers.  

And so, we’ll often take the tumor tissue and stain for things like PD-L1, which is a marker of response to immunotherapies.  

Very importantly, with all these new targeted therapies, we want to understand the genetic makeup of cancer. So, we want to look for things like EGFR mutations or ALK translocations which are more effectively treated with targeted therapies than chemotherapy or immunotherapy.  

So, those are the tumor characteristics. But, again, I’ve said before, a tumor exists in a person.  

And so, you need to understand what’s important to the person, what do they prioritize, what’s their health like, what, again, are the preferences, are there other comorbidities that could perhaps make some treatments more difficult? Many people, for example, have autoimmune disease. And so, that can be something that’s relatively minor, like some psoriasis that is well-controlled versus perhaps lupus which can cause organ failure.  

Often with psoriasis there are ways that we can give immunotherapy safely. Sometimes other autoimmune diseases would put patients at very high risk with immunotherapies. And so, again, understanding the overall health, understanding other competing causes of toxicity, are absolutely important as you make decisions together.  

Katherine:

Yeah. It seems like we’re getting closer to personalized medicine. For you, how would you define that term? 

Dr. Patel:

Personalized medicine comes in two forms. So, one is the biologics of the tumor itself. So, what do I understand about the genetic markers, the likelihood of response to the available therapies. The other piece, again, is personalizing it to the person that has the cancer.  

And so, again, what are the preferences? What are the risks they’re willing to take? What are their goals? What are the preferences?