At the Forefront Live: Where you begin your cancer journey matters

A cancer diagnosis means a lot of big decisions, one of them being where one decides to receive care. It's essential to find a cancer center that office options and access to multiple treatments. Coming up on At the Forefront Live, we will talk to Dr. Everett Vokes and Dr. Elizabeth Blair. We'll also spotlight the story of world renowned Chef Grant Achatz, who chose UChicago Medicine for tongue cancer care, after being told by other institutions that his option was the removal of most of his tongue. We'll also take your questions live, so this is your chance to ask an expert. That's coming up now on At the Forefront Live.

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And welcome now to At the Forefront Live. We want to remind our viewers that we will take your questions for our experts over the next half hour. But please remember that today's program is not designed to take the place of a visit with your physician. First, let's learn a little bit about our two guests. We have Dr. Everett Vokes and Dr. Elizabeth Blair. And Dr. Vokes, if you can start us off and just tell us a little bit about yourself and what you do here at UChicago Medicine.

Well, thank you very much. I'm Everett Vokes. I'm chairman of the Department of Medicine. But more than that I'm an oncologist, medical oncologist. So I specialize in the treatment of patients usually with advanced head and neck or lung cancer and focusing on the use of chemotherapy and newer treatments. Because on targeted therapies, when they're very small, usually tablets, that can be taken, very specifically for the context of personalized medicine, and then immunotherapies, which have recently entered the field and are making big impact in both of these kinds of diseases.

Dr. Blair?

Thank you very much. I'm Elizabeth Blair. I'm actually a surgeon. My specialty is otorhinolaryngology, head, neck, surgery. And I am a professor in the Department of Surgery here at the University of Chicago. My primary area of focus is benign and malignant tumors of the head and neck, both of the salivary glands, oral cavity, throat, and thyroid, as well as skin cancers.

Specifically, today we're talking about oral cavity and throat cancers that, in some settings, surgery is the first line of therapy, and in other settings, it is part of multidisciplinary treatment. And I think that's a lot of what we do here. And some of what we'll be talking about today is the role of multiple disciplines, surgery, oncology, and radiation, in terms of tailoring very specifically for each patient and the kind of treatment that they get.

You know, Dr. Blair it's interesting. You mentioned the multiple disciplines working together. And Dr. Vokes, I know this is something that you very truly believe in. And when you see patients, it's a team approach . When a patient comes to UChicago Medicine, they don't just see one doctor and go home. They'll work with an entire team eventually that develops that care plan. Why is that so important, and how does that work?

So go back a little bit to what Dr. Blair just said. So we're talking about head and neck cancer. So more concretely, what that means is it's the tongue. It's the voice box. It's structures that we need in everyday life for talking, for eating, for breathing. And when those structures are affected by disease, there's a lot at stake. First of all, if a cancer is left uncontrolled, eventually it can lead to a fatal outcome. So they can be deadly cancers if not treated in time.

But more importantly, traditionally, if treated, say, predominantly with surgery, then very large functional defects can occur. And you can see that most evidently, if the voice box is removed, well, then the voice box is removed. Similar, if the tongue is removed, a patient can live. But the tongue is so vital to many of the things we do in everyday life, that removing it should really just be considered as a last step.

And that's where really teamwork comes in and the interaction between the specialties. So if surgery alone can cure, but does so at a very high price, then can we use other modalities-- radiation, chemotherapy, or some of these newer therapies, I mentioned at the beginning, to ameliorate the impact of surgery, either not do surgery or do less surgery? And vice versa, sometimes surgery can allow to do less radiation, which also-- and chemotherapy can have long-term side effects.

So what we specialize in at the University of Chicago is that every patient is seen by all of us. And that's not just radiation, medical, oncology, and surgery. It also includes review of the specimen by pathologists. Patients need to be seen by dentists. There's nutritional support. There's sometimes swallowing needs that get evaluated and primary care. All of those impact on the patient's journey here at the University of Chicago. And we are set up to arrange for all of that right from the beginning.

And Dr. Blair, you told me something the other day when we were talking, and I thought this was fascinating. You said that there was a mentor that you had worked with at one point in time that told you, that as a surgeon, you had to check your ego at times. And I think that's really interesting. And it was really kind of touching when you said that, in my opinion, because it does show the teamwork, and it shows how you all work together so well.

Well, I think that one of the things that's important to recognize is that physicians take what they do very seriously. What we do is a very-- we're very blessed and very privileged, is the right word, to be able to talk to patients and take care of patients they come to us with their problems. And we try to make those problems better, ameliorate the concerns that they have, and treat them. And as a surgeon, it's a very intimate relationship. We actually operate on patients. Or we make a decision that we're not going to operate on a-- maybe that it's not best treated with surgery.

But it's very personal, and so we take it very, very seriously. And we want to do the best job that we can. But the longer you practice, the more you realize what you're really good at and where the limitations, not just personally, but even of the specialty in certain kinds of diseases. And history has shown that different treatments have gone in and out of favor over the last 100 years.

But the reality is, is that the way that we get new knowledge is in looking at clinical trials, is suspending our personal biases and trying to be more objective in how we treat patients. Unfortunately, less than 2% of head and neck cancer patients are treated in clinical trials. The majority of people are treated close to home in the communities. And if you don't get information from clinical trials in terms of being very objective about the patient care, then it's hard to gain new knowledge and understand nuances of the disease that can perhaps lead to better outcomes.

That was a perfect segue, because we were talking the other day about somebody who is very well known in the Chicago area, and actually throughout the United States and the world, Grant Achatz, a check. He's a wonderful chef. And we have a video story about him. I want to go and play that and then chat about that. Because to me, that really just solidifies what both of you are talking about, this team approach, this willingness to try new things, and how important it is. So let's play the video, and then we'll come back and chat about it.

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- I noticed a small white dot on the side of my tongue. And they said, oh, you're young. You've just had your first child. You're working 16 hours a day in a high stress environment. Eating and swallowing was very difficult. And it became very clear that there was something more sinister going on than just stress.

In the beginning, I was met with a very antiquated approach. There was nothing creative going on. It seemed incredibly barbaric to me.

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- I got a call from the team there and talked to them briefly on the phone, found the clinical trial, read about it, and said, this is exactly what I was looking for. And Grant said, no, I'm done. We made that decision. It was very difficult decision, and I'm done. And I said, like, one more.

- And we sat in a room with Dr. Vokes and Dr. Haraf, Dr. Blair. And first of all, I was surprised, because I had been to about four major institutions prior to going to the University of Chicago, and only met with one doctor each time. And here we were in this room with the team, with three doctors, each in their own specialty, but clearly working together.

- I still don't understand how surgeons say, the only thing we can do is cut your tongue off. We have to cut your tongue off, first step-- cut your tongue out. And I go, why should that be the first step? Why should you sacrifice that important organ, not only for Grant, who is a chef and needs it for his culinary abilities, but for an average guy, that wants to talk or kiss his wife?

- And so at no point here do we rule out surgery. We have brilliant surgeons. But it is not what we want to do first. And so what we already had experience with at the time was to start out with chemotherapy, to try and tame this tumor, to take the inflammation down, to take the size down, and then go in with chemotherapy and radiation.

- So we were concerned at the time, that even though we gave the patient chemo and radiation therapy, if it came back in a lymph node or maybe was 90% gone in the lymph node, if it re-grew, it would be much harder to treat.

- Years and years and years later, it really helped me become a better chef, engendering the spirit of teamwork, allowing us to grow, take wonderful ideas from other members in the team and implement them into our programs. So really, that individualistic approach, it never gets you far. You have to work as a team in order to succeed. And again, it's the same in the restaurant. I feel strongly it's the same in the medical profession.

- Well, I think the reentry into normalcy takes a long time. It's a very mentally challenging experience to go through. But I mean, he's got tons of advocates. And it's been great.

- There was a lot of obviously anxiety about, not only was I going to live or die, but was I going to be able to continue my life's passion? And now all that's dispelled. I've been doing what I love to do for the 12 years since treatment. And I think the restaurant, me as a person, me as a chef, are better than ever.

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So nice work-- yeah, it's a pretty neat story, because it shows, again, the, first of all, the importance of a second opinion. He got several second opinions. I guess you were about the fifth opinion. But it's a good thing he came here, because at one point, he had told us that he had given up. And he came and saw you.

Yeah.

That's pretty neat. And again, I think the other interesting thing about that-- Dr. Vokes, if you can talk about this a little bit-- it was a different look at a problem that other hospitals said would only be solved one way. And you looked at it a little bit different way. And this was about a dozen years ago, and we still do it that way now, right?

So I, too, have had mentors. And what I learned early on from medical oncologists, but also radiation oncologists, is that there really are two goals. When we treat somebody with head and neck cancer, and the disease has not spread to the lungs or bones or liver-- so if it's confined to the upper parts of the body, then we want to cure that patient.

And then we want to do that with a second goal in mind. We refer to that as organ preservation-- so the larynx, the tongue, and others. And that can be viewed simply anatomically. Is it still there or not? But it can also be viewed functionally. So is it working? And of course, it working is, in the end, what we want most.

So for the larynx, this was answered, by and large, long ago, and is now a standard of care or should be standard of care, that patients with larynx cancer should be primarily treated with chemotherapy and radiation, that surgery would be used if needed, if those modalities didn't work. For tongue, for some reason, this has not been studied and addressed in the same way, even though you would think it is much more necessary to do or equally necessary to do. But we always said-- like I did in the video before-- that surgery is never excluded. It may be needed, but it isn't the first thing.

So before going there, can we use radiation and chemotherapy to try and address this problem and work with the surgeon to then make sure it has actually gone? So the surgeon helps us establish the diagnosis, outline exactly where it is, and then, at the time of completion of chemotherapy and radiation, make sure it is all gone. Sometimes that involves removal of the lymph nodes. Sometimes that's not necessary. Because we know with very good radiographic evidence whether or not that becomes necessary. But that is that very refined teamwork. It's that multiple time steps of the patient's course at the beginning, during treatment, and at the end of treatment, and then, of course, in follow-up.

And Dr. Blair, as Dr. Vokes just mentioned, it's a combination of treatments oftentimes. And in this case, in Grant's situation, you did remove his lymph nodes. Is that correct?

It is. And I think we should clarify that the cases that we're talking about are advanced head and neck cancer, stage III and stage IV disease. And so in earlier stage disease, where people have just a primary lesion, no involvement of the lymph nodes, depending on the site, radiation alone or surgery allowing are still the mainstays of treatment. You don't need to get chemotherapy. So the kinds of things that we're talking about are, by the time that it's already spread to the lymph nodes, is usually how we define advanced head and neck cancer.

But surgery-- if the operation I would offer someone upfront for their disease is the same that I would offer if the chemo and radiation failed, then I usually find that it's feasible and reasonable to give a patient a chance at, at least, seeing if they can maintain their primary organ and functions.

And this happened 12 years ago with Grant, but this is still fairly commonplace today, isn't that correct, Dr. Vokes, where some centers are still surgery first with the tongue or removing at least part of the tongue?

I think it is still very much something that is unique to our program. And where we are probably a little more advanced from 12 years ago is that interaction between the team has gotten even better. And we're now cautiously bringing in new treatment modalities-- so immunotherapies and other ways to, for one, even improve further on the results, if we can, and for, two, to maybe use less radiation even and chemotherapy. So those are trade-offs we're currently trying to figure out a little bit more.

Can we talk about some of the new treatments? You're mentioning them now, that there's some of the target treatments, in particular, that I think are very exciting. And again, I think this is one of the advantages we have here as an academic medical center and a research institution.

So that's correct. The targeted therapies-- not so much in head and neck cancer. So usually, with those we mean specific mutations that can be targeted usually with a pill. And that doesn't apply as much as we would have hoped for to a head and neck cancer. It's very frequently used in other tumor types. But we've made a lot of progress and continue to investigate very intensively right now the use of immunotherapies.

And those are still usually given IV. The idea there is that these treatments don't directly attack the tumor the way chemotherapy does or radiation, but they stimulate the immune system and allow the immune system to now recognize the tumor as foreign, so that your own immune system can come in and kill the tumor. And when these treatments work, they really work surprisingly well. And we've benefited greatly here at the University of Chicago, from an in-depth team of really basic investigators, who have led the way in discovering some of these compounds.

We do have a question from a viewer that I'd like one of you to answer, if you can. How effective is the HPV vaccine against head and neck cancer?

So it is, in itself, not a treatment. So it is incredibly important to use in prevention. So I think young boys and girls should now be immunized with HPV. And it will prevent their susceptibility later in life for cervical cancer and head and neck cancer and some others. So it is important.

Once patients have been exposed-- and most of us do get exposed at some point in life-- it's not a treatment. So it couldn't be used at that point. There may be other ways to use the virus for immunization processes in the future, but that's very investigational. But the classic HPV vaccine is not what we would use therapeutically.

Dr. Blair, how do people know when to get a second opinion? And what should they look for when they decide to get a second opinion?

So I think there are two times in which it's critical to get a second opinion. One is if you have a lesion in your mouth or throat, or voice changes, or a lump in your neck, and you go to see somebody, and it isn't getting better. And you're given some antibiotics, and you're sent home, and this goes on for longer than a month, probably you need a second opinion, so that the area can be examined. And it may be a second opinion from an ear, nose and throat doctor, to examine you and make sure there's something that they can see with their telescopes that can't be seen by a regular doctor in the office.

And then, this other time to get a second opinion is, when you have a diagnosis of cancer, and they recommend a treatment, and it's important to realize that head and neck cancer is not the most common cancer in the United States. It is in some other countries, like India. But here, not everybody has an equal amount of experience with it. They may see a lot more of breast cancer and colon cancer and lung cancers. And so it is good to get a second opinion, and it's good to get that from a place or an institution where they do a lot of it.

And so that ends up, for me, being the bulk of my-- a high percentage of my practice are those kinds of patients. But if I was in general practice in the community, I might not do that many cases in a single year. So that experience of seeing lots of different patients with similar types of diseases, but that present in different ways, means that they bring each of those experiences with them, when they see you as a patient. So you build-- you learn something from every patient that you have.

And so if we do that thing that you have all the time, then we're going to have at least a pretty broad and in-depth understanding of the disease process. And it's just a second opinion, so that doesn't commit you to go anywhere. But it helps to get you smarter about it and recognize what all your options are.

You know, it's interesting you mention that, because Dr. Haraf actually said this the other day when we spoke. And he mentioned that if you go to a community hospital, for example, they'll take the book off the shelf, and they'll have kind of a general idea of maybe how to treat that specific head and neck cancer. Where as he and you do this all the time, and they'll know very specifically, or you'll know very specifically, what to do each time. And he said just there's such a tremendous advantage to that. And it's quantity, and it's research, and it's very important. So if you have questions, or if you have those specific types of cancer, it's a good place to come. An academic medical center is a good idea.

Yeah I would echo that. I think that our colleagues in the community do a terrific job, and I think, for many of the common tumors, for sure, and even a head and neck cancer at times. But the idea that volume matters, that's really supported by outcomes data in general. So there is a certain threshold where the reflexes are just better if the patients come in larger numbers, and the team is ready.

I agree with everything about the second opinion. I think there are two key times. One is at the beginning, before treatment starts, so that no commitment to a specific pathway is made yet-- say, surgery first or some other approach. So do it right before starting treatment. And then sometimes, should things go wrong later, or the tumor comes back, or a treatment stops working, then that is the second time point to look and get an opinion.

Good. Can we talk a little bit about clinical trials? It was interesting, Dr. Blair-- I think you mentioned a moment ago that there aren't a lot of clinical trials with head and neck. And can explain why that is?

Well, clinical trials take a tremendous amount of resources and time and expertise. And so they're not easy to do. And so you don't see them in a lot of places. And then you have to have enough patients with a particular disease process to be able to actually get through it in a reasonable amount of time. If you only see five patients a year, it's hard to accrue your numbers for that clinical trial, in general.

So I think that it's easy for someone to be treating a disease and just keep doing it the same way that they always do it, adding in new things they learn every year. But it takes a tremendous amount of time and commitment from the team to put together a clinical trial and to get it approved by an institutional review board, to get it funded, and then to be able to actually implement and execute it consistently. But that's really where you get new information.

And so they tend to really mostly be in large academic medical centers. And then, certainly, every large academic medical center has different departments with strengths that-- everyone in the country that is in an academic medical center will have some departments who have lots of clinical trials and some that have less. But it helps to force you to be objective. It helps to force you to make-- to really know the literature and to-- in this case, when you do multidisciplinary, it requires coordination, conversation, challenging each other, and trying to really make yourself at the best possible questions that you want to answer and the best way to implement those answers. It's really the cutting edge of treatment.

And Dr. Vokes, again, that's another advantage here with clinical trials. We see a lot of those here at UChicago Medicine.

Yeah, look, it's our culture. University of Chicago is all about innovation and inquiry. And it's really a medical institution that is on the campus of the university. So this is the culture we breathe every day as we walk here. And in cancer, of course, there is a mission to come to a better place. Because the treatment that we have is simply not good enough and even now, is not good enough.

So we need better outcomes. We need less side effects. And for that, we need innovation. And how do we do that? Well, there's lab work. And many of us do that, and many of our colleagues do that. But then, that work gets translated into new treatments. And that is done through the mechanism of clinical trials. We treat close to 1,000 patients every year on a clinical trial and have, over the years, made many, many seminal discoveries that way.

It's exciting stuff. And again, we have true physician scientists here, as you all are, and that, I think, again is one of the strengths of an institution like UChicago Medicine. We're out of time. That 30 minutes went very quickly. You guys were great. Thank you very much for doing this.

Thanks for having us.

That's all the time we have for the program today. If you need more information about UChicago Medicine, you can check out our website at uchicagomedicine.org. Also, remember to check out our Facebook page for future programs and helpful health information. If you would like an appointment, you can give us a call at 888-824-0200. Thanks again for being with us today, and I hope you have a wonderful week.

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Comer Children's Hospital at the University of Chicago Medicine is at the forefront of kids' health, shaping national standards of care, from infants to young adults. Comer Children's-- welcome to the forefront.