What Factors Impact Head and Neck Cancer Treatment Decisions?

What Factors Impact Head and Neck Cancer Treatment Decisions? from Patient Empowerment Network on Vimeo.

Expert Dr. Ari Rosenberg discusses head and neck cancer treatment goals, factors that affect treatment decisions, and his perspective on the value of a second opinion.

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

Related Programs:

How Is Head and Neck Cancer Treated

How is Head and Neck Cancer Treated?

Emerging Treatments for Head and Neck Cancer

Emerging Treatments for Head and Neck Cancer

Head & Neck Cancer Treatment Decisions: What’s Right for You?

Head and Neck Treatment Decisions: What’s Right for You?


Transcript:

Katherine:

Let’s talk about treatment goals. What are the objectives of treatment? 

Dr. Rosenberg:

Yeah, so really, I would put them in sort of two different categories when you think about the goals of treatment. Number one is survival, or, if possible, achieving a cure, right? Cure meaning a treatment that five, 10, 15, 20 years down the road, we don’t see any evidence of recurrence, and trying to give the best opportunity for that.  

And living as long as possible for patients, I think, is the number one goal, and we do that with identifying the most effective treatments and support for a given head and neck cancer in a given situation. However, the other very, very important goal of treatment is to optimize long-term function and quality of life. Because in the setting of a very effective treatment against the cancer, we also want patients to have good function. What does that mean function? Speech, swallowing, ability to eat, taste. Have those things that are very, very important for quality of life, and we want to figure out whatever tools we need to achieve both of those goals, and optimize both of those goals, which can be different from patient to patient. 

Katherine:

What factors are considered when choosing a treatment? 

Dr. Rosenberg:

So, first of all, we think about the diagnosis, right? Is this a squamous cell carcinoma, or is this a different type of cancer, like a salivary gland cancer, or a thyroid cancer, because those are treated very differently. In terms of squamous cell carcinoma, we use the information about whether it’s HPV or non-HPV-related head and neck squamous cell carcinoma, and that has major implications for prognosis, and, therefore, potential treatment or clinical trial options.   

We also think about the location of the tumor, and the extent, and the stage. So, is this is a very small tongue cancer, or is this a very large cancer that started in the back of the throat that has already spread to lymph nodes? Both of those, obviously, would be very different treatment options. So, location, and the extent of spread.   

Oftentimes, treatment considerations need to take into account – or always, I would say – take into account a patient’s specific factors. How old, other medical problems, other medications, previous treatments that patients have received, are very, very important. And then today, in 2023, we have many targeted molecular characterizations, so we can actually obtain a lot of information from the tumor itself that can also help identify the biological character that can help predict which is the right treatment for a given patient.  

So oftentimes, that means looking for genetic mutations, HPV DNA in tumor, or immune markers, such as PDL1, which is an immune marker that we use to predict responsiveness to immunotherapy. These are all datapoints that come into our evaluation to identify what the best, really unique, treatment approach would be for a given patient. 

Katherine:

What do you feel is the patient’s role in making treatment decisions? 

Dr. Rosenberg:

Very important. You always discuss the situation of the patient, in terms of their cancer. What their diagnosis is, what some of these characteristics are, what the staging is, what the extent of disease is. And then we talk to the patients about what their goals are, what’s most important to them, and figuring out what the treatment paradigms are that help to meet those goals. 

And so, it’s very, very important, and it’s very important that patients have a conversation with their oncology treatment team for head and neck cancer about what their goals, what’s most important to them, and how they can best achieve those goals in the context of head and neck cancer treatment planning. 

Katherine:

Yeah. So, it sounds like there’s a lot of factors taken into consideration then. 

Dr. Rosenberg:

Definitely. 

Katherine:

I’d like to turn to self-advocacy now. If a patient is feeling uncomfortable with the direction of their treatment plan or their care, do you think they should consider a second opinion, or even consult a specialist? 

 Dr. Rosenberg:

So, yes. I think, especially if a patient is feeling uncomfortable, it is always a good idea to get a second opinion, and to have another fresh set of eyes evaluate the case. Whether it means that that second opinion will reinforce the plan and give the patient more confidence in the plan that was proposed, or whether it means a potentially alternative plan that may be suggested for different reasons. And that allows the patient to have the autonomy and the facility to be able to help figure out which of the treatment team that is most appropriate for them. 

At the end of the day, head and neck cancer doctors want what’s best for patients. They want patients to do well, and that means that supporting patients in whatever – they want to do what will be best for them. I think all of us want that for patients. I think that’s definitely the case. 

Katherine:

Yeah. What would you say to patients who may be nervous about maybe hurting their doctor’s feelings by getting a second opinion? Can you reassure them in some way?  

Dr. Rosenberg:

Yeah. I mean, I would say that you shouldn’t worry about that, because doctors really do truly want their patients to do well. We go to this field because we want to help people, we want to help patients do better. And oftentimes, that means second opinion. So, I could tell you that I’m highly supportive of that.  

And the other thing I’ll just say is that head and neck cancer is a really specialized type of cancer, in terms of cancer treatment. And so, it is a good idea, in my view, and in my opinion, to be evaluated by an experienced head and neck cancer treatment team. One of the treatment teams that tends to see a very large volume, has a lot of experience treating head and neck cancer because that experience, I do think, is important for optimizing treatment outcomes. 

Emerging Treatments for Head and Neck Cancer

Emerging Treatments for Head and Neck Cancer from Patient Empowerment Network on Vimeo.

Expert Dr. Ari Rosenberg discusses the importance of head and neck cancer clinical trials and shares an update about emerging research in treatment strategies and tumor DNA testing.

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

Related Programs:

How Is Head and Neck Cancer Treated

How is Head and Neck Cancer Treated?

What Are the Types of Head and Neck Cancer

What Are the Types of Head and Neck Cancer?

What Do Patients Need to Know About Head and Neck Cancer Research

What Do Patients Need to Know About Head and Neck Cancer Research?


Transcript:

Katherine:

Well, that leads us to my next question, which is where do clinical trials fit in? 

Dr. Rosenberg:

So, clinical trials are really important for head and neck cancer because as much as we have tools to treat the disease, the tools that we have are suboptimal.  

They’re what we have, they’re what we use, and they can be quite successful in many cases, however, we can do better. We need better treatments for head and neck cancer. So, broadly, the clinical trials can actually be across multiple different treatment settings, whether earlier stage disease, or later stage disease. And the goal of the clinical trials are often to develop better treatments. What can that mean? Treatments that work better against the cancer, so help patients live longer with better quality of life. 

Sometimes clinical trials evaluate strategies to reduce the toxicity, or the side effects associated with treatment, so many trials are trying to evaluate strategies to reduce some of those kinds of side effects with the treatment. And then many trials are also trying to use, for example, new biomarkers, or new tests, which can help sometimes predict which is the right treatment for the right patient.  

One patient may need a more aggressive treatment, one may need a less intensive treatment. So, at our center, for example, we have clinical trials that, depending on the particular circumstance for those patients, that are trying to take what we have as the current standard, and build on that, to either improve survival and outcomes for patients, or reduce side effects, or both in order to optimize patient outcomes.  

Many of our clinical trials incorporate new immune therapies. So, immune therapy treatments are strategies that harness the body’s immune system to attack cancer, and we’re trying to identify new ways to do that. Some of our clinical trials are focused on trying to make the radiation, or the chemotherapy and the radiation, a bit more precise, and focused on the specific tumor. And some are focused on identifying what the best treatment would be for one particular person’s tumor, because we know that actually it’s many different diseases.  

And so, we want to really figure out what the optimized treatment is for giving patients that increases survival while reducing treatment-related toxicity. Again, that’s really the overarching goal of what we’re trying to achieve with clinical trials for head and neck cancer.  

Katherine:

Yeah. What about emerging approaches for treating head and neck cancer? Is there research going on that patients should know about?  

Dr. Rosenberg:

Yeah, definitely. So, many new drugs are being developed for head and neck cancer with many different treatment strategies. I would say given the success of immune therapy recently for head and neck cancer, and other cancer types as well, many are trying to build on that, and identify better immune therapies that work better against cancer therapies. Some are targeted therapies, so developing new drugs that maybe target a specific mutation, or a specific change in a particular patient’s tumor that would be appropriate. 

And the other thing that is being developed is strategies that incorporate, for example, blood tests that can sometimes measure tumor DNA in blood in a non-invasive fashion that can reveal all sorts of specific information about that particular patient’s tumor, how they’re responding to therapy, and can hopefully help optimize and personalize therapy. So those are some of the more emerging approaches that are being developed in clinical trials for head and neck cancer. 

How Can Head and Neck Cancer Patients Benefit From Palliative Care?

How Can Head and Neck Cancer Patients Benefit From Palliative Care? from Patient Empowerment Network on Vimeo.

What is palliative care and how could it benefit head and neck cancer patients? Expert Dr. Ari Rosenberg defines this care approach and explains how it can improve quality of life.

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

Related Programs:

What Do Patients Need to Know About Head and Neck Cancer Research

What Do Patients Need to Know About Head and Neck Cancer Research?

Head & Neck Cancer Treatment Decisions: What’s Right for You?

Head and Neck Treatment Decisions: What’s Right for You?

Expert Advice for Newly Diagnosed Head and Neck Cancer Patients

Expert Advice for Newly Diagnosed Head and Neck Cancer Patients


Transcript:

Katherine:

What about palliative care? How can it help people with head and neck cancer? 

Dr. Rosenberg:

Yeah, so, I’ll start by defining palliative care, which I sort of would suggest is either a treatment team, or strategies to help palliate, or relieve, the symptoms associated with cancer, or with cancer-related treatment, which unfortunately for head and neck cancer can be quite substantial. The location of cancers in the head and neck space can have a very large impact on pain, quality of life, speech, swallowing function, and man, many more. And the treatments as well, chemoradiation, surgery, things like that in the head and neck space can also have major impacts on quality of life, and some of those symptoms that patients can experience.  

So, oftentimes, management of those treatments – whether with appropriate pain medicines, medicines to help with some of the other side effects of treatment – even support for speech therapies, swallowing therapy, physical therapy, therapy to help with lymphedema, or some of the swelling that can occur with treatment – can all be very, very, very important.  

So, when patients come to my clinic, we spend much of the time discussing the treatment, and making sure that the treatment against the cancer is the right thing. But also, quite a bit of time focusing on what other things do we have to do to optimize that patient’s outcome, both in terms of survival, as well as function and quality of life.

What Head and Neck Cancer Treatment Options Are Currently Available?

What Head and Neck Cancer Treatment Options Are Currently Available? from Patient Empowerment Network on Vimeo.

Head and neck cancer expert Dr. Ari Rosenberg shares an overview of treatment types and explains how treatments may vary for individual patients.

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

Related Programs:

How Is Head and Neck Cancer Treated

How is Head and Neck Cancer Treated?

Head & Neck Cancer Treatment Decisions: What’s Right for You?

Head and Neck Treatment Decisions: What’s Right for You?

What Do Patients Need to Know About Head and Neck Cancer Research

What Do Patients Need to Know About Head and Neck Cancer Research?


Transcript:

Katherine:

I’d like to pivot now to talk about treatment options for head and neck cancer. What types of treatments are currently available? 

Dr. Rosenberg:

Yeah, so it depends on lots of factors, and part of that is the type, and the stage, and the location, and things like that, but I can give some general perspectives. For very early-stage head and neck cancer, oftentimes, the treatment is either surgery or radiation alone, oftentimes some of the treatments. However, a lot of times, head and neck cancer can be local regionally advanced, or having spread to some of the local areas, such as lymph nodes within the head and neck space, and there it’s quite variable.  

Sometimes patients will get surgery first, followed by – depending on some of the specific factors – radiation, or radiation and chemotherapy afterwards.  

And oftentimes, for local regionally advanced head and neck cancer, treatment can include non-surgical therapy, such as chemoradiation, or chemotherapy and radiation-based approaches. And then, of course, for more advanced cases, either cases of head and neck cancer that either come back after treatment, or in cases that have spread to other parts of the body, we have other therapies, such as immunotherapy therapy, or immunotherapy with chemotherapy, or some of those kinds of treatment. So, generally, those are some of the options. But again, with head and neck cancer, it’s extremely personalized.  

The most important thing is that a multidisciplinary team is able to review the case as a group to figure out what type of treatment approach will optimize not only the likelihood of cure and survival, but also long-term function and quality of life. And whatever treatment modality is needed to achieve those goals, that’s what should be recommended with that type of multidisciplinary team.  

Katherine:

Yeah. Dr. Rosenberg, you touched upon this just a moment ago, but I would like to ask you to this question. Are the options different in any way for advanced or metastatic disease?  

Dr. Rosenberg:

So, the answer is yes, and the short answer is it depends. But I think the longer answer is that we have therapies that have been shown in more advanced disease, and we’re really talking about cases where cancer has come back, or has spread to other parts of the body, where we have new treatments that help patients in that challenging situation live longer. The main one has been the development of immunotherapy as a treatment option, either alone or in combination with chemotherapy, and that has really improved outcomes for patients with very advanced head and neck cancer treatment and cases. 

Head & Neck Cancer Treatment Decisions: What’s Right for You?

Head & Neck Cancer Treatment Decisions: What’s Right for You? from Patient Empowerment Network on Vimeo.

When considering treatment options for head and neck cancer, what helps determine the best approach for YOU? Dr. Ari Rosenberg discusses key factors that impact head and neck cancer treatment decisions, emerging research, and tips for partnering with your healthcare team.

Dr. Ari Rosenberg is a medical oncologist and assistant professor of medicine at The University of Chicago Medicine. Learn more about Dr. Rosenberg.

Download Resource Guide

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

Related Programs:

How Is Head and Neck Cancer Treated

How is Head and Neck Cancer Treated?

Expert Advice for Newly Diagnosed Head and Neck Cancer Patients

Expert Advice for Newly Diagnosed Head and Neck Cancer Patients

What Do Patients Need to Know About Head and Neck Cancer Research

What Do Patients Need to Know About Head and Neck Cancer Research?


Transcript:

Katherine:

Hello, and welcome. I’m Katherine Banwell, your host for today’s webinar. In this program, we’re going to help you learn more about head and neck cancer. What it is, how it’s treated, and we’ll share tools to help you work with your healthcare team to access the best care.

Before we meet our guest, let’s review a few important details. The reminder email you received about this program contains a link to a resource guide. If you haven’t already, click that link to access information to follow along during the webinar. At the end of this program, you’ll receive a link to a program survey. Please take a moment to provide feedback about your experience today in order to help us plan future webinars.

Finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, joining us today is Dr. Ari Rosenberg. Dr. Rosenberg, welcome, would you please introduce yourself?

Dr. Rosenberg:

Thanks so much, Katherine, for having me on the webinar. So, having introduced myself, my name is Ari Rosenberg, I am a medical oncologist focused on the treatment of head and neck cancer.

Katherine:

Excellent. And where are you based?

Dr. Rosenberg:

So, I practice out of University of Chicago, in Chicago, Illinois, and practice as part of a multidisciplinary head and neck cancer team, including head and neck surgeons, radiation oncologists, and many other support members of the treatment team.

Katherine:

Great. Thank you so much for taking the time to join us today, we really appreciate it.

Dr. Rosenberg:

Absolutely.

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.

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.

Katherine:

Okay, good. 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.

Katherine:

Yeah, it sounds like there’s a lot of people involved in helping care for patients. I’d like to pivot now to talk about treatment options for head and neck cancer. What types of treatments are currently available?

Dr. Rosenberg:

Yeah, so it depends on lots of factors, and part of that is the type, and the stage, and the location, and things like that, but I can give some general perspectives. For very early-stage head and neck cancer, oftentimes, the treatment is either surgery or radiation alone, oftentimes some of the treatments. However, a lot of times, head and neck cancer can be local regionally advanced, or having spread to some of the local areas, such as lymph nodes within the head and neck space, and there it’s quite variable.

Sometimes patients will get surgery first, followed by – depending on some of the specific factors – radiation, or radiation and chemotherapy afterwards.

And oftentimes, for local regionally advanced head and neck cancer, treatment can include non-surgical therapy, such as chemoradiation, or chemotherapy and radiation-based approaches. And then, of course, for more advanced cases, either cases of head and neck cancer that either come back after treatment, or in cases that have spread to other parts of the body, we have other therapies, such as immunotherapy therapy, or immunotherapy with chemotherapy, or some of those kinds of treatment. So, generally, those are some of the options. But again, with head and neck cancer, it’s extremely personalized.

The most important thing is that a multidisciplinary team is able to review the case as a group to figure out what type of treatment approach will optimize not only the likelihood of cure and survival, but also long-term function and quality of life. And whatever treatment modality is needed to achieve those goals, that’s what should be recommended with that type of multidisciplinary team.

Katherine:

Yeah. Dr. Rosenberg, you touched upon this just a moment ago, but I would like to ask you to this question. Are the options different in any way for advanced or metastatic disease?

Dr. Rosenberg:

So, the answer is yes, and the short answer is it depends. But I think the longer answer is that we have therapies that have been shown in more advanced disease, and we’re really talking about cases where cancer has come back, or has spread to other parts of the body, where we have new treatments that help patients in that challenging situation live longer. The main one has been the development of immunotherapy as a treatment option, either alone or in combination with chemotherapy, and that has really improved outcomes for patients with very advanced head and neck cancer treatment and cases.

Katherine:

What about palliative care? How can it help people with head and neck cancer?

Dr. Rosenberg:

Yeah, so, I’ll start by defining palliative care, which I sort of would suggest is either a treatment team, or strategies to help palliate, or relieve, the symptoms associated with cancer, or with cancer-related treatment, which unfortunately for head and neck cancer can be quite substantial. The location of cancers in the head and neck space can have a very large impact on pain, quality of life, speech, swallowing function, and man, many more. And the treatments as well, chemoradiation, surgery, things like that in the head and neck space can also have major impacts on quality of life, and some of those symptoms that patients can experience.

So, oftentimes, management of those treatments – whether with appropriate pain medicines, medicines to help with some of the other side effects of treatment – even support for speech therapies, swallowing therapy, physical therapy, therapy to help with lymphedema, or some of the swelling that can occur with treatment – can all be very, very, very important.

So, when patients come to my clinic, we spend much of the time discussing the treatment, and making sure that the treatment against the cancer is the right thing. But also, quite a bit of time focusing on what other things do we have to do to optimize that patient’s outcome, both in terms of survival, as well as function and quality of life.

Katherine:

Yeah. Well, that leads us to my next question, which is where do clinical trials fit in?

Dr. Rosenberg:

Yeah. So, clinical trials are really important for head and neck cancer because as much as we have tools to treat the disease, the tools that we have are suboptimal.

They’re what we have, they’re what we use, and they can be quite successful in many cases, however, we can do better. We need better treatments for head and neck cancer. So, broadly, the clinical trials can actually be across multiple different treatment settings, whether earlier stage disease, or later stage disease. And the goal of the clinical trials are often to develop better treatments. What can that mean? Treatments that work better against the cancer, so help patients live longer with better quality of life.

Sometimes clinical trials evaluate strategies to reduce the toxicity, or the side effects associated with treatment, so many trials are trying to evaluate strategies to reduce some of those kinds of side effects with the treatment. And then many trials are also trying to use, for example, new biomarkers, or new tests, which can help sometimes predict which is the right treatment for the right patient.

One patient may need a more aggressive treatment, one may need a less intensive treatment. So, at our center, for example, we have clinical trials that, depending on the particular circumstance for those patients, that are trying to take what we have as the current standard, and build on that, to either improve survival and outcomes for patients, or reduce side effects, or both in order to optimize patient outcomes.

Many of our clinical trials incorporate new immune therapies. So, immune therapy treatments are strategies that harness the body’s immune system to attack cancer, and we’re trying to identify new ways to do that. Some of our clinical trials are focused on trying to make the radiation, or the chemotherapy and the radiation, a bit more precise, and focused on the specific tumor. And some are focused on identifying what the best treatment would be for one particular person’s tumor, because we know that actually it’s many different diseases.

And so, we want to really figure out what the optimized treatment is for giving patients that increases survival while reducing treatment-related toxicity. Again, that’s really the overarching goal of what we’re trying to achieve with clinical trials for head and neck cancer.

Katherine:

Yeah. What about emerging approaches for treating head and neck cancer? Is there research going on that patients should know about?

Dr. Rosenberg:

Yeah, definitely. So, many new drugs are being developed for head and neck cancer with many different treatment strategies. I would say given the success of immune therapy recently for head and neck cancer, and other cancer types as well, many are trying to build on that, and identify better immune therapies that work better against cancer therapies. Some are targeted therapies, so developing new drugs that maybe target a specific mutation, or a specific change in a particular patient’s tumor that would be appropriate.

And the other thing that is being developed is strategies that incorporate, for example, blood tests that can sometimes measure tumor DNA in blood in a non-invasive fashion that can reveal all sorts of specific information about that particular patient’s tumor, how they’re responding to therapy, and can hopefully help optimize and personalize therapy. So those are some of the more emerging approaches that are being developed in clinical trials for head and neck cancer.

Katherine:

That’s encouraging, thank you. Well, we’ve covered treatment approaches, let’s talk about treatment goals. What are the objectives of treatment?

Dr. Rosenberg:

Yeah, so really, I would put them in sort of two different categories when you think about the goals of treatment. Number one is survival, or, if possible, achieving a cure, right? Cure meaning a treatment that five, 10, 15, 20 years down the road, we don’t see any evidence of recurrence, and trying to give the best opportunity for that.

And living as long as possible for patients, I think, is the number one goal, and we do that with identifying the most effective treatments and support for a given head and neck cancer in a given situation. However, the other very, very important goal of treatment is to optimize long-term function and quality of life. Because in the setting of a very effective treatment against the cancer, we also want patients to have good function. What does that mean function? Speech, swallowing, ability to eat, taste. Have those things that are very, very important for quality of life, and we want to figure out whatever tools we need to achieve both of those goals, and optimize both of those goals, which can be different from patient to patient.

Katherine:

Yeah. Well, what factors are considered when choosing a treatment?

Dr. Rosenberg:

So, first of all, we think about the diagnosis, right? Is this a squamous cell carcinoma, or is this a different type of cancer, like a salivary gland cancer, or a thyroid cancer, because those are treated very differently. In terms of squamous cell carcinoma, we use the information about whether it’s HPV or non-HPV-related head and neck squamous cell carcinoma, and that has major implications for prognosis, and, therefore, potential treatment or clinical trial options.

We also think about the location of the tumor, and the extent, and the stage. So, is this is a very small tongue cancer, or is this a very large cancer that started in the back of the throat that has already spread to lymph nodes? Both of those, obviously, would be very different treatment options. So, location, and the extent of spread.

Oftentimes, treatment considerations need to take into account – or always, I would say – take into account a patient’s specific factors. How old, other medical problems, other medications, previous treatments that patients have received, are very, very important. And then today, in 2023, we have many targeted molecular characterizations, so we can actually obtain a lot of information from the tumor itself that can also help identify the biological character that can help predict which is the right treatment for a given patient.

So oftentimes, that means looking for genetic mutations, HPV DNA in tumor, or immune markers, such as PDL1, which is an immune marker that we use to predict responsiveness to immunotherapy. These are all datapoints that come into our evaluation to identify what the best, really unique, treatment approach would be for a given patient.

Katherine:

What about symptoms and side effects? What should people be worried about?

Dr. Rosenberg:

Yeah. So, oftentimes when patients come to us with a new diagnosis of head and neck cancer, when looking back, they’ve had, sometimes, symptoms for a while, whether it’s a nagging ulcer on their tongue, or some difficulty with speech, or a new hoarseness, or a lump in the neck that turns out to be a cancerous lymph node.

And so, even before we get into the diagnosis of head and neck cancer, I do think it’s important for people to know that, in particular, if some of these symptoms – particularly if they’re lasting for a while and not going away with more conservative measures like antibiotics – really need to be evaluated by an ENT and a doctor team to make the diagnosis of head and neck cancer, so it can be treated.

The side effects of treatment very much depend on the treatment modality that’s used. So, for example, when chemotherapy and radiation, and chemoradiation is utilized, oftentimes, the treatment itself could be associated with a lot of side effects from treatment. Things like a sore throat, things like skin changes, things like fatigue, challenges with nutrition, and a plethora of other things that, depending on some of the specifics, can be associated. Which is one of the reasons why we’re trying to figure out if there are some patients that we can deintensify the radiation, or do more precise radiation, rather than standard, regular dose radiation for everyone. But that’s of course in the context of some of the clinical trials that are being evaluated for improving outcomes for head and neck cancer patients.

Katherine:

Yeah. What do you feel is the patient’s role in making treatment decisions?

Dr. Rosenberg:

Very important. You always discuss the situation of the patient, in terms of their cancer. What their diagnosis is, what some of these characteristics are, what the staging is, what the extent of disease is. And then we talk to the patients about what their goals are, what’s most important to them, and figuring out what the treatment paradigms are that help to meet those goals.

And so, it’s very, very important, and it’s very important that patients have a conversation with their oncology treatment team for head and neck cancer about what their goals, what’s most important to them, and how they can best achieve those goals in the context of head and neck cancer treatment planning.

Katherine:

Yeah. So, it sounds like there’s a lot of factors taken into consideration then.

Dr. Rosenberg:

Definitely.

Katherine:

I’d like to turn to self-advocacy now. If a patient is feeling uncomfortable with the direction of their treatment plan or their care, do you think they should consider a second opinion, or even consult a specialist?

Dr. Rosenberg:

So, yes. I think, especially if a patient is feeling uncomfortable, it is always a good idea to get a second opinion, and to have another fresh set of eyes evaluate the case. Whether it means that that second opinion will reinforce the plan and give the patient more confidence in the plan that was proposed, or whether it means a potentially alternative plan that may be suggested for different reasons. And that allows the patient to have the autonomy and the facility to be able to help figure out which of the treatment team that is most appropriate for them.

At the end of the day, head and neck cancer doctors want what’s best for patients. They want patients to do well, and that means that supporting patients in whatever – they want to do what will be best for them. I think all of us want that for patients. I think that’s definitely the case.

Katherine:

Yeah. What would you say to patients who may be nervous about maybe hurting their doctor’s feelings by getting a second opinion? Can you reassure them in some way?

Dr. Rosenberg:

Yeah. I mean, I would say that you shouldn’t worry about that, because doctors really do truly want their patients to do well. We go to this field because we want to help people, we want to help patients do better. And oftentimes, that means second opinion. So, I could tell you that I’m highly supportive of that.

And the other thing I’ll just say is that head and neck cancer is a really specialized type of cancer, in terms of cancer treatment. And so, it is a good idea, in my view, and in my opinion, to be evaluated by an experienced head and neck cancer treatment team. One of the treatment teams that tends to see a very large volume, has a lot of experience treating head and neck cancer because that experience, I do think, is important for optimizing treatment outcomes.

Katherine:

If a patient is having a difficult time voicing their questions or their concerns, are there members of the support team who might be able to help?

Dr. Rosenberg:

Yeah, so there’s lots of phenomenal organizations that can help direct, because it’s a complex navigation that’s difficult for anyone, particularly in a patient with a new head and neck cancer diagnosis. The Head and Neck Cancer Alliance is one that comes to mind, but there’s many support groups for patients.

And so, I would suggest if there’s uncertainty, those groups are available to help patients help to navigate the system. And so, I think that would be one area where patients could reach out to, which is patient advocacy organizations, patient advocates, in order to help to navigate whatever the patient wants, whether it’s a second opinion, whether it’s support, whatever’s needed to see what’s out there. Because again, we all want patients to do well and want to support patients however we need to in order to optimize some of those outcomes that I talked about earlier.

Yeah. So, in our program, for example, we have experienced nurse navigators that help coordinate all the care at our center, but also help direct.

Because the best person to talk to may be the speech pathologist, depending on the question, or it may be the psychosocial team, or it may be the surgical team or the radiation oncology team. A lot of times, a nurse navigator or a point person for questions can help direct who’s the best person to address that particular question. Sometimes those questions are best addressed by social work and supporting patients through that.

So, I would suggest asking when you get your consultation, “Who’s my point person for questions? If I have a question, and I don’t know who the right person is to ask, who do I pose that to, to make sure that it gets pointed to the right person?”

Katherine:

Right. To close, what would you like to leave the audience with? Are you hopeful about the future of head and neck cancer?

Dr. Rosenberg:

I am. I think that there’s lots of exciting things in the pipeline that are leading to what I hope will be improved treatments for head and neck cancer that optimizes survival, but also optimizes long-term function and quality of life. And so, I hope that, Katherine, when you and I speak in 10 or 20 years, we’ll be in a totally different place, a totally different landscape, thinking about totally different things than we are today, to really optimize outcomes for patients. So, we’ll talk within in 20 years, or maybe sooner, whatever works for you.

Katherine:

Yeah, things are changing so rapidly, aren’t they? Yeah. Well, Dr. Rosenberg, thank you so much for taking the time to join us today.

Dr. Rosenberg:

Absolutely, thanks so much.

Katherine:

And thank you to all of our partners.

If you would like to watch this program again, there will be a replay available soon. You’ll receive an email when it’s ready. And don’t forget to take the survey immediately following the webinar, it will help us as we plan future programs.

To learn more about head and neck cancer, and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell, thanks for joining us today.

What Do Patients Need to Know About Head and Neck Cancer Research?

What Do Patients Need to Know About Head and Neck Cancer Research? from Patient Empowerment Network on Vimeo.

Is there developing research that head and neck cancer patients should know about? Dr. Jessica Geiger explains how treatment approaches are evolving and how patients can stay up-to-date on the latest advances.

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

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

Related Programs:

How Is Head and Neck Cancer Treated

How Is Head and Neck Cancer Treated?

What Are the Types of Head and Neck Cancer

What Are the Types of Head and Neck Cancer?

Expert Advice for Newly Diagnosed Head and Neck Cancer Patients

Expert Advice for Newly Diagnosed Head and Neck Cancer Patients


Transcript:

Katherine Banwell:

Cancer research is developing rapidly. What are you excited about when it comes to head and neck cancer research? 

Dr. Jessica Geiger:

Well, I think there’s a lot of different clinical trials that are coming out in what we call the neo-adjuvant space so before you go for a surgery. Again, head and neck cancer is a little bit different when we think of other more common cancers. 

And what I mean by that is it’s one thing to be able to surgically remove cancer or to ablate it completely with radiation. The problem with the head and neck area as you can imagine, it’s such a small area. There’s a lot of precious real estate there, as I always describe to patients. And so, it’s one thing to cure the cancer, to cut it out completely. But then we have functional and sometimes cosmetic concerns after that, too. So, I think one of the biggest things that we are always trying to look to be successful in is are there therapies, are there treatments where we can shrink down the initial cancer so that the resulting surgery or the fields of radiation are not so severe? So, we’re maintaining the cure rates that we have. We’re improving on the cure rates that we have. But also thinking about how can we improve the quality of life and the function and the cosmetic outcome after their cancer treatment? And I think that’s really exciting. 

Katherine Banwell:

It is. It’s great.  And I’m sure there’s been so much development in the field, even in the last 10 years. 

Dr. Jessica Geiger:

There has. And another comment to make on that point, too, when we’re thinking about clinical trials especially. There’s really two big subsets of squamous cell cancer, head and neck squamous cell carcinoma, and that’s HPV-positive that’s related to the HPV, the human papilloma virus and HPV-negative. HPV-negative is what we think of historically as being caused by years of smoking often with heavy drinking. That’s kind of the traditional head and neck cancer patient. But over the last couple of decades now, there’s a completely different disease that we have recognized. And that’s related to HPV. And these patients tend to be light or never smokers at all. They tend to be younger, different demographic of patients. The good news is those cancers seem to respond better to cancer treatment, particularly radiation- and chemotherapy-based. 

So, as I mentioned before, trying a neo-adjuvant approach to kind of reduce the impact of surgery or the impact of radiation, particularly with HPV-related disease. We know that it’s a different disease that behaves much better than HPV-negative. So, trying clinical trials to what we call de-intensify therapy. So, maintaining the high cure rate. But reducing the toxicities related to treatment so that – you know, these are younger patients. They’re cured of their cancer. But they still require a feeding tube. Or they have a lot of chronic pain in the neck. They have a lot of morbidity with the treatment. And so, trying to reduce that down to again, maintain high cure rates, but help with quality of life in the years to come. 

Katherine Banwell:

How can patients stay up-to-date on developing research? 

Dr. Jessica Geiger:

That’s a really good question. 

Every once in a while, there are sound bites or news articles that are kind of in the mainstream press and in the mainstream news. I would just encourage patients to – if they read something or see a headline to reach out to their oncology team and have a discussion. What is this research? What does it mean for me? Does it apply to me? How is this information being used for cancer treatment? How would this impact my treatment or my follow up? It’s really hard to kind of navigate through what is, in terms of research, what is immediately clinically impactful or clinically meaningful at that time. 

Katherine Banwell:

Are there any websites that you recommend to patients? 

Dr. Jessica Geiger:

The American Head and Neck Society has a good website. And there’s a couple of other, depending on what state you live in or regions of certain states.  

There’s a lot of different support groups for head and neck cancer patients that I would encourage patients to reach out. Because especially in the regional, geographic location where you are, it may be worthwhile to be able to have those conversations. Because you can walk down the street and not know if somebody’s had it. But I’ve had more patients over the last several months, especially HPV-related disease patients who have mentioned something to me along the lines of, “I had mentioned to an acquaintance or a friend of a friend. And suddenly, I know three or four other people who have had this cancer. And I had no idea. And now we’re talking about how we have to carry a water bottle with us all the time because we can’t swallow dry foods. And how we have to be very mindful of what we’re eating when we order at a restaurant.” And so, just trying to navigate a bigger world, narrowing it down to where you live to have those meaningful contacts of other patients who have gone through what you have gone through. 

How Is Head and Neck Cancer Treated?

How Is Head and Neck Cancer Treated? from Patient Empowerment Network on Vimeo.

Once a patient is diagnosed with head and neck cancer, what are their treatment options? Dr. Jessica Geiger provides an overview of current therapies.

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

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

Related Programs:

What Are the Types of Head and Neck Cancer

What Are the Types of Head and Neck Cancer?

Expert Advice for Newly Diagnosed Head and Neck Cancer Patients

Expert Advice for Newly Diagnosed Head and Neck Cancer Patients

What Do Patients Need to Know About Head and Neck Cancer Research

What Do Patients Need to Know About Head and Neck Cancer Research?


Transcript:

Katherine Banwell:

How is head and neck cancer treated? 

Dr. Jessica Geiger:

The thing about head and neck cancer is even if it’s a very early-stage cancer, certainly if it’s a later stage with very big tumors that have spread, even the small cancers are often treated with many different modalities, many different medical specialties and surgical specialties. So, primarily, it’s going to be treated with head and neck surgery, sometimes with radiation, and then of course, you can require some systemic therapy which is what I do. And systemic therapy could be standard chemotherapy as you think about it. It could be targeted therapy. It could even be immunotherapy.  

Katherine Banwell:

Okay.  

Dr. Jessica Geiger:

And sometimes we have to use two or three of those different tools to get the job done. 

A Patient’s Perspective | Participating in a Clinical Trial

A Patient’s Perspective | Participating in a Clinical Trial from Patient Empowerment Network on Vimeo.

Colorectal cancer survivor Cindi Terwoord recounts her clinical trial experience and explains why she believes patients should consider trial participation.

Dr. Pauline Funchain is a medical oncologist at the Cleveland Clinic. Dr. Funchain serves as Director of the Melanoma Oncology Program, co-Director of the Comprehensive Melanoma Program, and is also Director of the Genomics Program at the Taussig Cancer Institute of the Cleveland Clinic. Learn more about Dr. Funchain, here.

Cindi Terwoord is a colorectal cancer survivor and patient advocate. Learn more about Cindi, here.

See More from Clinical Trials 101

Related Resources:

A Patient Shares Her Clinical Trial Experience

If I Participate in a Clinical Trial, Will I Be a Guinea Pig?

Are Clinical Trials a Logistical Nightmare?


Transcript:

Katherine Banwell:    

Cindi, you were diagnosed with stage IV colorectal cancer, and decided to participate in a clinic trial. Can you tell us about what it was like when you were diagnosed?

Cindi Terwoord:        

Yeah. That was in September of 2019, and I had had some problems; bloody diarrhea one evening, and then the next morning the same thing. So, I called my husband at work, I said, “Things aren’t looking right. I think I’d better go to the emergency room.”

And so, we went there, they took blood work – so I think they knew something was going on – and said, “We’re going to keep you for observation.” So, then I knew it must’ve been something bad. And so, two days later, then I had a colonoscopy, and that’s when they found the tumor, and so that was the beginning of my journey.

Katherine Banwell:    

Mm-hmm. Had you had a colonoscopy before, or was that your first one?

Cindi Terwoord:        

No, I had screenings, I would get screenings. I had heard a lot of bad things about colonoscopies, and complications and that, so I was always very leery of doing that. Shame on me. I go for my other screenings, but I didn’t like to do that one. I have those down pat now, I’m very good at those.

Katherine Banwell:    

Yeah, I’m sure you do. So, Cindi, what helped guide your decision to join a clinical trial?

Cindi Terwoord:        

Well, I have a friend – it was very interesting.

He was probably one of the first people we told, because he had all sorts of cancer, and he was, I believe, one of the first patients in the nation to take part in this trial. It’s nivolumab (Opdivo), and he’s been on it for about seven years. And he had had various cancers would crop up, but it was keeping him alive.

And so, frankly, I didn’t know I was going to have the option of a trial, but he told me run straight to Cleveland Clinic, it’s one of the best hospitals. So, I took his advice. And the first day the doctor walked in, and then all these people walked in, and I’m like, “Why do I have so many people in here?” Not just a doctor and a nurse. There was like a whole – this is interesting.

And so, then they said, “Well, we have something to offer you. And we have this immunotherapy trial, and you would be one of the first patients to try this.”

Now, when they said first patient, I’m not quite sure if they meant the first colon cancer patient, I’m not sure. But they told me the name of it, and I said, “I’m in. I’m in.” Because I knew my friend had survived all these years, and I thought, “Well, I’ve gotten the worst diagnosis I can have, what do I have to lose?” So, I said, “I’m on board, I’m on board.”

Katherine Banwell:    

Mm-hmm. Did you have any hesitations?

Cindi Terwoord:        

Nope. No, I’m an optimistic person, and what they assured me was that I could drop out at any time, which I liked that option.

Because I go, “Well, if I’m not feeling well, and it’s not working, I’ll get out.” So, I liked that part of it. I also liked, as Dr. Funchain had said, you go in for more visits. And I like being closely monitored, I felt that was very good.

I’ve always kept very good track of my health. I get my records, I get my office notes from my doctor. I’m one of those people. I probably know the results of blood tests before the doctor does because I’m looking them up. So, I felt very confident in their care. They watched me like a hawk. I kept a diary because they were asking me so many questions.

Katherine Banwell:    

Oh, good for you.

Cindi Terwoord:        

I’m a transcriptionist, so I just typed out all my notes, and I’d hand it to them.

Katherine Banwell:    

That’s a great idea.

Cindi Terwoord:        

Here’s how I’m feeling, here’s…And I was very lucky I didn’t have many side effects.

Katherine Banwell:    

In your conversations with your doctor, did you weigh the pros and cons about joining a trial? Or had you already made up your mind that yes, indeed, you were going for it?

Cindi Terwoord:        

Yeah, I already said, “I’m in, I’m in.” Like I said, it had kept my friend alive for these many years, he’s still on it, and I had no hesitation whatsoever.

I wish more people – I wanted to get out there and talk to every patient in the waiting room and say, “Do it, do it.”

I mean, you can’t start chemotherapy then get in the trial. And if I ever hear of someone that has cancer, I ask them, “Well, were you given the option to get into a trial?” Well, and then some of them had started the chemo before they even thought of that.

Katherine Banwell:    

Mm-hmm. So, how are you doing now, Cindi? How are you feeling?

Cindi Terwoord:        

Good, good, I’m doing fantastic, thank goodness, and staying healthy. I’m big into herbal supplements, always was, so I keep those up, and I’m exercising. I’m pretty much back to normal –

Katherine Banwell:

Cindi, what advice do you have for patients who may be considering participating in a trial? 

Cindi Terwoord:

Do it. Like I said, I don’t see any downside to it. You want to get better as quickly as possible, and this could help accelerate your recovery. And everything Dr. Funchain mentioned, as far as – I really never brought up any questions about whether it would be covered. 

And then somewhere along the line, one of the research people said, “Well, anything the trial research group needs done – like the blood draws – that’s not charged to your insurance.” So, that was nice, that was very encouraging, because I think everybody’s afraid your insurance is going to drop you or something.  

And then the first day I was in there for treatment, a social worker came in, and they talked to you. “Do you need financial help? We also have art therapy, music therapy,” so that was very helpful. I mean, she came in and said, “I’m a social worker,” and I’m like, “Oh, okay. I didn’t know somebody was coming in here to talk to me.” 

But that was all very helpful, and I did get free parking for a few weeks. I mean, sometimes I’d have to remind them. I’d say, “It’s costing me more to park than to get treated.” But, yeah, like I said, I’m a big advocate for it, because you hear so many positive outcomes from immunotherapy trials, and boy, I’d say if you’re a candidate, do it. 

Katherine Banwell:

Dr. Funchain, do you have any final thoughts that you’d like to leave the audience with? 

Dr. Pauline Funchain:

First, Cindi, I have to say thank you. I say thank you to every clinical trial participant, everybody who participates in the science. Because honestly, whether you give blood, or you try a new drug, I think people don’t understand how many other lives they touch when they do that.  

It’s really incredible. Coming into clinic day in and day out, we get to see – I mean, really, even within a year or two years, there are people that we’ve seen on clinical trial that we’re now treating normally, standardly, insurance is paying for it, it’s all standard of care. And those are even the people we can see, and there are so many people we can’t see in other centers all over the world, and people who will go on after us, right?  

 So, it’s an amazing – I wouldn’t even consider most of the time that it’s a personal sacrifice. There are a couple more visits and things like that, but it is an incredible gift that people do, in terms of getting trials. And then for some of those trials, people have some amazing results. 

And so, just the opportunity to have patients get an outcome that wouldn’t have existed without that trial, like Cindi, is incredible, incredible. 

What Are the Risks and Benefits of Joining a Clinical Trial?

What Are the Risks and Benefits of Joining a Clinical Trial? from Patient Empowerment Network on Vimeo.

Why should a cancer patient consider a clinical trial? Dr. Pauline Funchain of the Cleveland Clinic explains the advantages of clinical trial participation.

Dr. Pauline Funchain is a medical oncologist at the Cleveland Clinic. Dr. Funchain serves as Director of the Melanoma Oncology Program, co-Director of the Comprehensive Melanoma Program, and is also Director of the Genomics Program at the Taussig Cancer Institute of the Cleveland Clinic. Learn more about Dr. Funchain, here.

See More from Clinical Trials 101

Related Resources:

You’ve Chosen to Participate In a Clinical Trial: What Are Next Steps?

Understanding Common Clinical Trial Terminology

How to Find A Clinical Trial That’s Right for You


Transcript:

Katherine Banwell:

Why would a cancer patient consider participating in a clinical trial? What are the benefits? 

Dr. Pauline Funchain:

So, I mean, the number one benefit, I think, for everyone, including the cancer patient, is really clinical trials help us help the patient, and help us help future patients, really.  

We learn more about what good practices are in the future, what better drugs there are for us, what better regimens there are for us, by doing these trials. And ideally, everyone would participate in a trial, but it’s a very personal decision, so we weigh all the risks and benefits. I think that is the main reason.  

I think a couple of other good reasons to consider a trial would be the chance to see a drug that a person might not otherwise have access to. So, a lot of the drugs in clinical trials are brand new, or the way they’re sequenced are brand new. And so, this is a chance to be able to have a body, or a cancer, see something else that wouldn’t otherwise be available.  

And I think the last thing – and this is sort of the thing we don’t talk about as much – but really, because clinical trials are designed to be as safe as possible, and because they are new procedures, there’s a lot of safety protocols that are involved with them, which means a lot of eyes are on somebody going through a clinical trial.  

Which actually to me means a little bit sort of more love and care from a lot more people. It’s not that the standard of care – there’s plenty of love and care and plenty of people, but this doubles or triples the amount of eyes on a person going through a trial. 

Katherine Banwell:

Yeah. When it comes to having a conversation with their doctor, how can a patient best weigh the risks and benefits to determine whether a trial is right for them? 

Dr. Pauline Funchain:

Right. So, I think that’s a very personal decision, and that’s something that a person with cancer would be talking to their physician about very carefully to really understand what the risks are for them, what the benefits are for them. Because for everybody, risks and benefits are totally different. So, I think it’s really important to sort of understand the general concept. It’s a new drug, we don’t always know whether it will or will not work. And there tend to be more visits, just because people are under more surveillance in a trial.  

So, sort of getting all the subtleties of what those risks and benefits are, I think, are really important. 

Katherine Banwell:

Mm-hmm. What are some key questions that patients should ask? 

Dr. Pauline Funchain:

Well, I think the first question that any patient should ask is, “Is there a trial for me?” I think that every patient needs to know is that an option. It isn’t an option for everyone. And if it is, I think it’s – everybody wants that Plan A, B, and C, right? You want to know what your Plan A, B, and C are. If one of them includes a trial, and what the order might be for the particular person, in terms of whether a trial is Plan A, B, or C. 

How Can Clinical Trials Be Accessed?

How Can Clinical Trials Be Accessed?  from Patient Empowerment Network on Vimeo.

Clinical researcher Dr. Seth Pollack and patient advocate Sujata Dutta explain the benefits of participating in a clinical trial. They review important questions to ask your doctor and share advice for finding a trial.

Dr. Seth Pollack is Medical Director of the Sarcoma Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and is the Steven T. Rosen, MD, Professor of Cancer Biology and associate professor of Medicine in the Division of Hematology and Oncology at the Feinberg School of Medicine. Learn more about Dr. Pollack, here.

Sujuta Dutta is a myeloma survivor and empowered patient advocate, and serves a Patient Empowerment Network (PEN) board member. Learn more about Sujuta, here.

See More from Clinical Trials 101

Related Resources:

What Is a Clinical Trial and What Are the Phases? 

Are Clinical Trials Safe?

A Patient Shares Her Clinical Trial Experience


Transcript:

Katherine Banwell:    

Sujata, there’s clearly a lot of hesitation and misconceptions out there. What would you say to someone who’s considering a trial but is hesitant?

Sujata Dutta:  

I would say speak to your provider, speak to your doctor, and get all these myths kind of busted to say, “it’s going to be expensive” or whatever those questions are. And then, through that process also try and understand what is it that the study is trying to achieve? How is that going to be beneficial to you? So, in my instance, it wasn’t the last line of defense, it was just one of the processes or combos that would help me. And so, that was important for me to understand and then a little bit of education as well. So, I was asking, I have questions on my phone every time I meet my provider, and I did the same thing. So, I think that one of the good practices is keep your note of your questions and have those questions ready. And no question is silly, all questions are important. So, ask as many questions as you can and use that opportunity to educate yourself about it.

And maybe you realize, “No. I don’t think it’s working for me” or “I don’t think this trial is good for me.” But it’s good, important, to have that conversation with your provider, that’s what I would recommend highly.

Katherine Banwell:    

Excellent. Thank you, Dr. Pollack, if someone is interested in participating, how can they find out about what trials are even available for them?

Dr. Seth Pollack:       

Yeah. I mean, the best thing to do is to start just by asking your doctor if they know about any clinical trials. And a lot of the times the clinical trials are run at the big medical centers that may be closer to you, so you could ask your doctor if there’s any clinical trials at the big medical center even. Or I always think it’s good to get a second opinion, you could go get a second opinion at the big medical center that’s close to you and ask them what clinical trials are at your center.

And sometimes they’ll be conscious about some of the clinical trials that may be even run around the country. And you can ask about that as well.

Katherine Banwell:    

Would specialists have more information about clinical trials than say a general practitioner?

Dr. Seth Pollack:       

So, I specialize in rare cancers, so a lot of the times the general practitioners they’ve got my cell phone number, and they text me, and they say, “Hey, do you have a clinical trial going on right now?” And that happens all the time, but yeah, the specialists will usually because frankly there’s so much to know. And the general practitioners really have a lot to keep track of with all the different types of diseases that are out there. Whereas at the big centers, the specialists, part of their job is really to keep their tabs on what’s going on with the clinical trials.

So, they’re good people to ask, either your local doctor could reach out to them, or you could go get a second opinion and ask.

Sujata Dutta:  

There’s also a lot of information, Katherine, on sites such as LLS, or PEN, or American Cancer Society that they also publish a lot of information. Of course, I would recommend once you have that information then vet it by your specialist, or whatever. But if you’re interested in knowing more about clinical trials in general and some that would work for you, then those are also some places to get information from.

Katherine Banwell:    

That’s great information. Thank you, I was going to ask you about that Sujata. Well, before we end the program, Dr. Pollack, I’d like to get your final thoughts. What message do you want to leave the audience with related to clinical trial participation?

Dr. Seth Pollack:       

Yeah. I think clinical trials it can be a very rewarding thing for a lot of patients to do, I think patients really like learning about the new treatments. And I think a lot of patients really like being a part of pushing the therapies forward in addition to feeling like sometimes they’re getting a little bit of an extra layer of scrutiny, because there’s a whole extra team of research coordinators that are going through everything.

And getting access to something that isn’t available yet to the general population. So, I think there’s a whole host of advantages of going on clinical trials, but you need to figure out whether or not a clinical trial is right for you.

Katherine Banwell:    

Yeah. Sujata, what would you like to add?

Sujata Dutta:  

Absolutely, I second everything that Dr. Pollack is saying. And in my personal experience I wouldn’t say everything is hunky-dory, everything is fine. I’m going through treatment, I have chemo every four weeks, I started with chemo every week. That’s when the logistics pace was really difficult because going to Mayo every week was not easy. But anyways, as the trial progress itself every four weeks, but as I said the benefits are huge because I have labs every four weeks. I meet my provider every four weeks.

So, we go through the labs and anything amiss, I’ve had some changes to my dosage because I’ve had some changes in the labs. And so, there’s a lot of scrutiny which I like, but the flip side, for maybe some maybe like, “I have to have chemo every four weeks. Do I want to do that or not?” Or whatever. In my case, I knew it, and I signed up for it, and I’m committed to doing that for two years. And so, I’m fine with that. So, I would say all in all, I’d see more benefits of being in a clinical trial. One, you’re motivated to give back to the community. Two, you are being monitored and so your health is important to your provider just as it is to you. And so, I highly recommend being part of a trial if it works for you and if you’re eligible for one.

Are Clinical Trials Safe?

Are Clinical Trials Safe?  from Patient Empowerment Network on Vimeo.

Clinical researcher Dr. Seth Pollack explains the safety protocols in place for clinical trials, including how data is reported and protected. Patient advocate Sujata Dutta goes on to share her experience in a clinical trial.

Dr. Seth Pollack is Medical Director of the Sarcoma Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and is the Steven T. Rosen, MD, Professor of Cancer Biology and associate professor of Medicine in the Division of Hematology and Oncology at the Feinberg School of Medicine. Learn more about Dr. Pollack, here.

Sujuta Dutta is a myeloma survivor and empowered patient advocate, and serves a Patient Empowerment Network (PEN) board member. Learn more about Sujuta, here.

See More from Clinical Trials 101

Related Resources:

Is a Clinical Trial a Last-Resort Option?

A Patient Shares Her Clinical Trial Experience

If I Participate in a Clinical Trial, Will I Be a Guinea Pig?


Transcript:

Katherine Banwell:

Some patients feel that clinical trials aren’t safe, is that the case, Dr. Pollack?  

Dr. Seth Pollack:

No. I mean, we go through, as I was saying before, these clinical trials are extensively vetted. So, the safety is, of course, one of the things that we look most carefully about. But as I was saying before, like with any treatment’s cancer treatments have toxicity, that’s a common problem. So, and when you’re dealing with something brand new sometimes there is a little bit more risk. So, when you’re talking about these very early-stage Phase I trials you probably want to talk to your doctor about what sorts of toxicities you can expect and where they are in the Phase I trial. Are you the first ever to receive this new drug? And if you are nobody’s making you go in the clinical trial, so it can only help to get more information. Right? So, you should ask your team about it, you should find out. 

Most of the time there’s going to be a lot of patients that have been treated already, I mean, they can’t give you definitive data about how things are going but they can maybe say, “Hey. I’ve already treated a few patients on it, and they seem to be doing great.” 

Katherine Banwell:

So, you need to weigh the pros and cons of the trial. 

Dr. Seth Pollack:

You do need to weigh the pros and cons. Now, when you’re talking about these Phase IIs and Phase IIIs, I mean, these are drugs now that have really been vetted for their safety and we have a lot of data about it. And even the Phase Is, it’s not like these things are coming out of nowhere, they’ve been scrutinized, we really expect that they’re going to be safe but we’re doing the trial to prove it. So, it’s a good thing to ask about. 

Katherine Banwell:

Yeah, yeah. 

Sujata Dutta:

Yeah. I would also add that it’s so closely monitored that safety is a top priority, it’s front and center. So, the advantage, I think, with being on a trial is the close monitoring of the patient exactly for this reason. 

If something is amiss it’s going to be picked up as quickly as possible and you’re any issues are going to be addressed as soon as. So, I think, safety does get addressed pretty quickly.  

Katherine Banwell:

Good. 

Can data from trials even be trusted? Dr. Pollack, is that the case? 

Dr. Seth Pollack:

Well, of course, I mean, it can be trusted. Because the thing with the clinical trial data is that you really see the data and there’s all kinds of scrutiny making sure that the data is reported accurately. Now, there’s a whole other conversation we could have as to whether we could interpret the data differently. And sometimes that is an issue that comes up, but the data is reported very accurately. 

So, and there are statistics that are very well understood, and the bar is actually pretty high to say one arm of the trial was better than the other arm of the trial. So, if patients have better survival on one arm, if we say that, usually it means they did considerably better. Enough better that it wasn’t a random chance that one extra patient did better on the treatment arm. No. There were enough patients that did better that the statisticians can go through it with a fine-toothed comb. And they can be absolutely sure up to exactly how many percent sure they can tell you, 0.05 percent or less chance of error that this was a real difference between the study arm and the standard of care arm. 

Sujata Dutta:

I think you mentioned too that one is trust, and one is data. So, Dr. Pollack mentioned a lot about the data, I think the trust is also a very important thing. I like to go with positive intent because I do not have a reason to believe my doctor has some ulterior motive to suggest a clinical trial. And so, I trust them wholeheartedly. The first hurdle is you have to trust the system or what is being proposed to you because, as Dr. Pollack said, it’s gone through a lot of vetting. A recommendation to be part of a trial itself is vetted by your doctor when they make the recommendation. So, have faith, trust, that they are making a good recommendation. And then, of course, the data, I don’t know much about that, but as I said, I trust it. So, I would trust the data too. 

Katherine Banwell:

Of course. Of course. Some patients feel like they’re going to lose their privacy. Sujata, did you feel that at all? 

Sujata Dutta:

No. Not at all. 

I mean, with everything else that is also taken care of, my information, or whatever, is not made available to anybody. And so, obviously there’s a lot of people will get those, and I had a huge pile of paperwork to go through, but I think that’s a good thing. For my peace of mind that I knew that my information was not going to be shared outside of the study, the trial, etc., and things. So, no, I don’t think that’s a problem. 

Katherine Banwell:

Beyond these misconceptions is there anything else you hear? Dr. Pollack?  

Dr. Seth Pollack:

No. I mean, look, in our crazy modern world there’s concerns everywhere, but the clinical trial is very, very careful. Whenever possible we use the medical chart.  

And then, we have a very stringently protected database that’s storing people’s information, but it’s deidentified. So, I mean, we have a separate key to figure out who the patients are and then we try to limit the use of the patient’s name or any identifying information about them beyond that. So, and your information is not shared. For example, if there’s a drug company involved in the trial, your information is not shared with the drug company, you have a new identifier that is unique and not traceable back to you that is provided to whoever, if there’s outside groups working on the trial with you. So, your information is very carefully protected, and everyone is very conscious about issues regarding privacy.  

Katherine Banwell:

That’s great to know.  

Are Clinical Trials a Logistical Nightmare?

Are Clinical Trials a Logistical Nightmare?  from Patient Empowerment Network on Vimeo.

PEN board member and myeloma survivor Sujata Dutta shares how her family managed the logistics of her clinical trial participation.

Sujuta Dutta is a myeloma survivor and empowered patient advocate, and serves a Patient Empowerment Network (PEN) board member. Learn more about Sujuta, here.

See More from Clinical Trials 101

Related Resources:

Is a Clinical Trial a Last-Resort Option?

Are Clinical Trials Safe?


Transcript:

Katherine Banwell:    

The logistics will be a nightmare and I don’t live close to a research hospital. Sujata, did you have that issue?

Sujata Dutta:  

Yeah. That’s a very interesting one, and actually I’ll share my experience. I did have this concern about logistics, because I got my transplant at Mayo Rochester, which is a two-hour drive from where I live. And so, when I got to know about it literally me and my husband were like, “Oh, my gosh. What are we going to do?” It’s not just me, my husband is my caregiver, he has to take the day off to drive me to Mayo, wait through my treatment, and drive me back. Then we have boys who were distance learning at the time, and so what do we do with them? Do we drop off a friends or take a favor from a friend? And so on and so forth.

So, the logistics was an issue and we literally said, “Thanks but no thanks” and we walked out of the room. And we came downstairs, and my husband was like, “What the heck?” My team understands everything, and I fortunately work for a very good employer, and they understand everything, people first. And so, he was like, “I can figure this out. Let’s do it if this is what’s going to help you, then let’s just figure this out.” And at that time, it was so good, and I have total respect for Dr. Pollack.

You and everybody in this medical community. My doctor who leads the trial at Mayo, she actually said, “Why don’t you check with your local cancer center? Maybe they are also approved by FDA, and they may be able to administer this treatment to you.” Unfortunately, at that time they weren’t but we were like, “We’re going to go ahead with the trial. It doesn’t matter.” My husband was like, “I’ll take the day off, you don’t worry about it.” And then, four months later my institute did get approved by FDA, and so I was able to transfer from Mayo to my local cancer center, Abramson Cancer Center, which is 20 minutes from home. And so, there are options, I know that it can be an issue and it can be overwhelming at the time which was the case with me. But I was able to overcome that, so maybe there are options available that the patients can consider.

Is It Expensive to Participate in a Clinical Trial?

Is It Expensive to Participate in a Clinical Trial?  from Patient Empowerment Network on Vimeo.

Is there a financial cost to participating in a clinical trial? Dr. Seth Pollack explains how clinical trials participation is billed and potential financial impacts.

Dr. Seth Pollack is Medical Director of the Sarcoma Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and is the Steven T. Rosen, MD, Professor of Cancer Biology and associate professor of Medicine in the Division of Hematology and Oncology at the Feinberg School of Medicine. Learn more about Dr. Pollack, here.

See More from Clinical Trials 101

Related Resources:

Is a Clinical Trial a Last-Resort Option?

Are Clinical Trials Safe?

Are Clinical Trials a Logistical Nightmare?


Transcript:

Katherine Banwell:    

Is this fact or fiction; it will be expensive? Dr. Pollack?

Dr. Seth Pollack:       

That’s fiction because the way the clinical trials work is we go through everything very carefully to figure out what things are standard and what things are unique to the clinical trials. So, if you are getting chemotherapy, you’re going to need blood work, you’re going to need the chemotherapy drugs, you’re going to need some sort of imaging, CT scan, or whatever your doctor would do.

And all those sorts of things are considered standard, so your insurance company is built for those. Then there’s a bunch of things that are considered research. For example, there’s special research bloodwork, maybe there’s an investigational agent that’s being added to standard chemotherapy. Those things are billed to the study, so you don’t actually have to pay anything extra, it’s just like you’re getting the normal treatment as far as you’re concerned. I mean, that’s the way it always is, and I haven’t had any of my patients ever get into real problems in terms of the finances of these things. It always works very straight forward like standard therapy.

Is a Clinical Trial a Last-Resort Option?

Is a Clinical Trial a Last-Resort Option?  from Patient Empowerment Network on Vimeo.

Are clinical trials only meant as a last-resort option? Dr. Seth Pollack debunks this common clinical trial misconception and explains why he feels patients should participate when the opportunity arises.

Dr. Seth Pollack is Medical Director of the Sarcoma Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and is the Steven T. Rosen, MD, Professor of Cancer Biology and associate professor of Medicine in the Division of Hematology and Oncology at the Feinberg School of Medicine. Learn more about Dr. Pollack, here.

See More from Clinical Trials 101

Related Resources:

Is It Expensive to Participate in a Clinical Trial?

Are Clinical Trials Safe?

Are Clinical Trials a Logistical Nightmare?


Transcript:

Katherine Banwell:    

Right. And another concern that people have is; clinical trials are my last resort treatment option. What do you say to that Dr. Pollack?

Dr. Seth Pollack:       

Yeah, no. That’s a common misconception. So, we like to have clinical trials for every phase of the patient’s cancer journey because we’re trying to make every single part of the cancer journey better. So, I think a lot of people think that, okay, when they hit their last resort that’s kind of the time to try something new. Even in the very earliest parts of the cancer journey, even in the diagnosis phase sometimes we’ll have clinical trials where we’ve tried different images, modalities, or look at things in a different way in terms of the biopsies.

But then, in terms of the cured-of treatments, when somebody is in the cured-of setting we don’t usually try something very brand new. But a lot of the times we’ll try something that is very affective for patients at the end, and we want to try and make the cured-of strategy even better. So, a lot of the times for those patients we’ll have new therapies that are very safe and established that we’re trying to incorporate earlier into patients’ treatments because we know they work really well, right? And then, even in patients who have incurable cancer a lot of times it’s better to try a clinical trial earlier on just because sometimes the clinical trials have the most exciting new therapies that are bringing people a lot of hope.

And a lot of the times you want to try that when you’re really fit and when you’re in good shape. So, that’s why I think that you really want to think about doing a clinical trial when the opportunity arises.

Katherine Banwell:    

Yeah. Beause it could be beneficial to you and it’s certainly going to be beneficial to other people.

If I Participate in a Clinical Trial, Will I Be a Guinea Pig?

If I Participate in a Clinical Trial, Will I Be a Guinea Pig?  from Patient Empowerment Network on Vimeo.

Does participating in a clinical trial make you a “guinea pig” for new treatments? Clinical researcher, Dr. Seth Pollack, provides a clear explanation of clinical trial safety protocols.

Dr. Seth Pollack is Medical Director of the Sarcoma Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and is the Steven T. Rosen, MD, Professor of Cancer Biology and associate professor of Medicine in the Division of Hematology and Oncology at the Feinberg School of Medicine. Learn more about Dr. Pollack, here.

See More from Clinical Trials 101

Related Resources:

Is It Expensive to Participate in a Clinical Trial?

Are Clinical Trials Safe?

Are Clinical Trials a Logistical Nightmare?


Transcript:

Katherine Banwell:    

Well, I’d like to address a list of common concerns about clinical trials that we’ve heard from various audience members prior to this program.

And this is probably the most common; I will be a guinea pig. Dr. Pollack, how do you respond to that?

Dr. Seth Pollack:       

Yeah. I know that is a common concern. I mean, I think the thing that people have to understand about clinical trials is there is just so much oversight that happens for these clinical trials. Every document, every procedure, is scrutinized by multiple committees. There’s a scientific review committee, there’s a review board, IRB, that reviews these. Many of these trials are reviewed by the FDA and they’re reviewed by your doctor and your doctor’s colleagues that are also participating in the trial. So, every detail is discussed at length.

In fact, a lot of the times there’s a lot more structure to being on the clinical trial than just routine clinical care because they’ve thought so thoroughly about when everything needs to be done and what the right timing of is for the various procedures.