Managing Dysphagia, Lymphedema & Chronic Pain in Head & Neck Cancer Survivors

[Dr. Michael Moore]
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]
… 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. 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.

[Dr. Gopi Shah]
What are some of the others? We talked about dysphagia, dry voice. What about mobility in terms of, I don't know, shoulder, physical, after some of our recons? What are some of their challenges?

[Dr. Michael Moore]
Yes, I can comment a little bit, and then, obviously, Heather can comment a bit on how their teams help with addressing them. A lot of that depends on the therapy they have. Certainly, shoulder weakness is most common after surgery, working around the spinal accessory nerve. Even if the nerve is preserved, it's not uncommon to get some transient stiffness of the shoulder.

It's very important to get those patients working with a physical therapy team early on. Obviously, neck fibrosis, chronic neck pain just from disrupting the cervical plexus, and, to be honest, just the trauma of treatment, whether it's surgery or especially if you're combining it with either preoperative or post-operative radiation or chemoradiation therapy, those patients all get a fair amount of stiffness and impact, related to that.
One thing I think is very closely tied into that, but not the same thing is lymphedema. A lot of the similar approaches to the neck stiffness and fibrosis can also be used to try and help with some of the lymphedema management. This ties into what we were just talking about, the dysphagia part. There can be lymphedema on the outside, but also lymphedema on the inside, what's called internal lymphedema. The nice thing is, by approaching them with external lymphedema therapy, a lot of times that provides some additional benefit to their swallowing function as well.

[Dr. Gopi Shah]
If a patient does need lymphedema therapy, when do they or when would they start? Is this like six, eight weeks later? Are we talking several years later, waiting till the symptoms come? Is it part of the PT?

[Dr. Heather Starmer]
Yes, the earlier the better, I would say. Most of the time in a post-radiation setting, lymphedema really becomes apparent around the third month post-radiation. We try to get them started right as soon as we start to see signs of it. Surgically, often, you have that postoperative edema, and then when is the point where we transition from normal post-op edema that's going to go away to lymphedema?

We usually look for about a six-week period for that acute edema to resolve. If somebody's having surgery and not radiation, probably starting lymphedema somewhere around the second month post-surgery. In some cases, we need to do it sooner. You'll see those patients who have very, very severe acute edema. They can't open their eyes, their lips are really swollen. Those are people who we may start working on. Even though we know it's acute edema, we've got to get the burden of the edema down. Certainly, in some cases, we start very early.