Podcast Transcript: Survivorship in Head & Neck Cancer

[Dr. Gopi Shah]
Yes. When we talk about survivorship in head and neck cancer, one, when did this come to the forefront? I don't recall thinking about this in my training 10, 15 years ago in residency. Two, are we thinking, is this mostly to squamous cell carcinoma of the head and neck or is it any cancer in the head and neck when we think about survivorship?

[Dr. Heather Starmer]
I think from my perspective, there were two things that happened in a serendipitous timeline. There was a report that came out in the '90s that was called Lost in Transition. It was about how survivorship needs were not being met across cancer, not just in head and neck cancer. About the same time that that came about and the National Cancer Institute was really starting to focus on it, we also had this rise in incidence and awareness of HPV cancer where patients had higher cure, and therefore longer life, and therefore more survivorship concerns.
I think those two things together really brought the focus on survivorship, whereas for so many years it was about, "50% of people are not going to survive. We need to focus on cure and only cure." It came together at that same time. I think those are things that brought that focus in the past 20 years or so.

[Dr. Michael Moore]
Yes. I think that's exactly right. I think, in reality, I think it's important just to start with defining what survivorship is. Essentially, it starts when you're diagnosed with your cancer and ends, essentially, when you pass away. People who are cured from their cancer would fall into that category but even those who are still fighting the journey along the way. I think it just highlights so many important aspects of the patient continuum. Obviously, the stress and strain that comes around the time you're being diagnosed and the support you need during treatment.

Then, obviously, all that goes into the period of time dealing with not only acute but chronic side effects afterwards, and really trying to not just take into account being cured, but also, what's the quality of life when you're done? It's revolutionized how we look at this too, because there are so many different tools that are used that can look at and actually objectively measure survivorship outcomes as far as quality of life and functional results. I think that's allowed a lot of the new research efforts to try and quantitate that and see what types of treatment approaches are better serving our patients.

[Dr. Gopi Shah]
Yes, that's interesting. It starts right with the diagnosis because it's not even that I have to have a "cure" to then be a survivor. It's surviving the diagnosis, the management from day one till when I die. It's part of it when they walk in the door. Just to give us some numbers, when you think of head and neck cancer, is there like an overall percentage of like five-year survival, or does that really depend on the type of cancer, like if you're talking about it broadly?

[Dr. Michael Moore]
It's a heterogeneous group of diseases, to be honest. I think the number that Heather quoted is certainly-- If you look at all comers, people used to quote the number of 50% would have a long-term survival. In reality, there are some groups, patients with HPV-related disease, the majority of them, unless they have the unusual scenario of distant metastatic disease, most of them will have an 80% to 90% long-term cure rate.
Well-differentiated thyroid cancer, obviously has a very high cure rate. Some of the other, what are called HPV-negative throat cancers and mouth cancers, those can be much more aggressive. A lot of that depends on the stage at diagnosis, and that has a big impact not only on survivability of the cancer, but also the functional impact that their treatment would have on them, and the quality of life they would have after treatment.

[Dr. Gopi Shah]
Is it still like the five years? That's the number that we use in terms of the time at which we think, "We've had a good outcome?" Where's that needle? Is it still at five years?

[Dr. Michael Moore]
Yes, I'll comment and then get Heather's thoughts as well. That's a number that most of us-- I always say, I don't formally do back lips. I don't do that anymore anyway, but five years is a very important milestone. I think, to be honest, two years is very important. At that point, once you get past two years, it's a much lower likelihood that the cancer's ever going to come back. There are certain cancers that have a bit more of a slow growth pattern, a little bit more indolent. Certain salivary cancers, for example, where we never really consider you're cured. We always want to follow you very closely to make sure nothing pops up down the road.

[Dr. Heather Starmer]
Yes, I think that's absolutely right on. I think one of the things that happens at that five-year point is, oftentimes I'm having the conversation with patients of, the good news is, is that we're less worried about cancer coming back, but there are other things we need to keep an eye out for. The shift goes from watching for cancer to now watching for other things that can come up based on the treatment they have, which I'm sure we'll dive into deeper. I think our focus shifts from a surveillance of cancer to a surveillance of function and quality of life.

[Dr. Gopi Shah]
Let's get into that, to more detail. What challenges or morbidities that are commonly faced in our survivors? How does timing play a role?

[Dr. Heather Starmer]
Yes, I think one of the biggest things that comes up or the two biggest things that come up in study after study, and certainly are true in my clinical practice, are swallowing dysfunction and dry mouth. I think those are the two things that are the most common and have the most impact on quality of life for many of our survivors. From a swallowing perspective, I'll focus on that part since that's my area, but swallowing can fall into three different buckets.

We have the acute swallowing issues that happen right around the time of treatment. We can have chronic issues where patients will never really fully recover, and so they're always dealing with some level of decline of their swallow function. Then, we can think about more the late onset swallowing problems, and those can happen at any point. By definition as swallowing specialists, we think about the late swallowing things or something that happens after they recover from those acute toxicities. They have a period of relatively good function, and then all of the sudden things start going in the wrong direction. That can be a year after treatment, that can be 20 years after treatment. I've seen it in really long periods of time post-treatment as well. Those are the hardest ones to deal with. We have the most ability to impact and change acute and the chronic issues, and we have less ability to impact those late effects.

That's one of the things that we want to keep looking for in our survivors is onset of cranial neuropathies, which are one of the classic hallmark signs of late radiation dysphagia, either hypoglossal palsy or vagal palsy. We're always wanting to keep an eye out for that. If we can catch it earlier and work with the patient, we may be able to mitigate impacts such as pneumonia, which has been implicated as a potential cause for late mortality related to head and neck cancer. We can really think about swallowing across those three main groups.

Management of Late-Onset Dysphagia

[Dr. Gopi Shah]
Is that usually going to be speech therapy to help, especially with that late onset group of patients?

[Dr. Heather Starmer]
Yes, in the US, I would say that the majority of this-- at least the diagnostics are predominantly within the realm of speech pathologists. There are some otolaryngologists who are really interested in this, and, certainly, they play a really valuable role. Unfortunately, there's just not that many of them. A good call for trainees who maybe want to be interested in dysphagia, we could use more of you. Yes, certainly, speech pathologists do a lot of diagnostic work, both in radiology and with endoscopy.

There are certain things that need to be managed surgically. Stricture, for example, in patients that have truly intractable aspiration, multiple complications, we may be looking towards things like functional laryngectomy. There are definitely cases where we need to be enlisting the help of our otolaryngologist. Then there are other situations that we need to manage through some sort of exercise intervention, using different kinds of compensatory strategies or mechanisms, doing skill training, respiratory recoordination therapy. There are a lot of different things we can try to try to control those dysphagia symptoms from a speech pathology perspective.

[Dr. Gopi Shah]
Mike, do you see these patients in your clinic that are late-onset dysphagia? How do you tend to manage them?

[Dr. Michael Moore]
Yes, I do. To be honest, the majority of the time are instances where I followed them during their cancer journey, and I'm continuing to follow them for surveillance afterwards. I don't see as many that they've been treated and are coming primarily for the diagnosis of dysphagia. In those instances, obviously, we work very closely with our speech-language pathology team, but also our laryngology team. Folks who are speech and swallowing experts that, these patients have been-- A lot of times I'll evaluate the patient, make sure they have no evidence of obvious cancer, they have a laryngologist, see if they can work some magic, if you will, in combination with our speech-language pathologists.

Obviously, in some instances where it really is something that they really hold eating and drinking as one of their highest priorities, yet they're continuing to suffer from, chronic aspiration, then occasionally we have the conversation about functional laryngectomy. On those, we'll usually get back involved with those as well. Yes, as far as a primary assessment of radiation dysphagia, I'm not usually the provider. A lot of times, at least in our institution, it's the laryngology team.

[Dr. Gopi Shah]
Heather, you had mentioned dry mouth. What kinds of tips or tricks? How do you help those patients?

[Dr. Heather Starmer]
It's a tough one because there are not a lot of great options. A lot of it is just symptom management. Xylitol is an active ingredient in a lot of different things. Sugar-free gum. There's lozenges called XyliMelts, those tend to be the ones that my patients like the best. There's lots of biotin products. They're all very temporary. You use a sprayer, you use a gel, and it gives you about 15 minutes of relief. For some people, that's good enough. They don't mind spraying and reapplying frequently, and others think it's more hassle than it's worth.

The nice thing with the XyliMelts is they slowly dissolve, and so people find a little bit more of a durable, a longitudinal benefit from that. It's things like using a humidifier when you're sleeping at night and adding sauces and gravies to your food so your food is moist and not dry. It's a hard one. Everybody gets it at least during radiation, and then the majority of people have at least some degree long-term.

Mobility and Lymphedema Challenges and Treatment