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BackTable / ENT / Article
Head & Neck Cancer Support: Monitoring Mental Health & Quality of Life in Survivors
Priyanka Shah • Updated Jul 16, 2025 • 40 hits
Head and neck cancer survivorship demands a multidimensional approach that extends well beyond disease control, encompassing functional, psychological, and quality-of-life considerations. Persistent symptoms such as dysphagia, xerostomia, and chronic pain, along with complications like lymphedema and shoulder dysfunction, require early identification and coordinated care. Mental health remains a critical concern, with isolation and fear of recurrence frequently contributing to distress, underscoring the need for timely psychosocial support and patient education. Longitudinal assessment tools and structured follow-up protocols are essential for identifying late effects, particularly in the absence of long-term data. While formal survivorship clinics face logistical barriers, hybrid models and embedded support services offer practical alternatives. Accessible national resources further enhance care when introduced early and revisited throughout the continuum.
This article features excerpts from the BackTable ENT Podcast. We’ve provided the highlight reel in this article, and you can listen to the full podcast below.
The BackTable ENT Brief
• Mental health support should begin early and be revisited throughout the care continuum, with social workers and psycho-oncology teams initiating engagement and validated tools guiding referrals, especially in settings with limited specialized resources.
• Social reintegration is a major challenge, often hindered by speech and swallowing issues, and compounded by fear of recurrence. Structured education to differentiate benign symptoms from worrisome ones provide a key benefit to patients dealing with such challenges.
• Validated symptom inventories, such as the Patient Concerns Inventory and MDASI-HN, allow clinicians to efficiently prioritize care based on patient-identified needs rather than a generic checklist.
• Hybrid survivorship care models, where nurse practitioners gradually assume responsibility post-surgery, enable focused attention on quality-of-life concerns while maintaining access to multidisciplinary input when needed.
• Patient resources, including support groups, peer mentoring, and educational webinars, should be introduced at diagnosis, integrated into EMRs, and reinforced during follow-up to ensure patients access them when most relevant.
Table of Contents
(1) Mental Health in Head & Neck Cancer Survivors
(2) Post-Treatment Assessment Guidelines & Quality of Life in Head & Neck Cancer
(3) Multidisciplinary Care in Survivorship Clinics
(4) Resources for Head & Neck Cancer Patients & Clinicians
Mental Health in Head & Neck Cancer Survivors
Mental health remains an under-addressed yet critically important dimension of head and neck cancer survivorship. While major cancer centers may have embedded psycho-oncology teams and social work support from diagnosis onward, access to specialized mental health care is often limited in community settings. Depression and anxiety frequently stem from treatment-related isolation, communication impairments, and the disruption of social rituals tied to eating and drinking. Support groups, peer mentoring, and virtual communities help mitigate this by fostering connection and normalizing the patient experience. Clinicians should be aware that fear of recurrence is pervasive and often misunderstood, with benign symptoms like lymphedema or minor illnesses triggering anxiety about cancer relapse. Timely psychosocial education, ongoing emotional support, and careful framing of post-treatment expectations are essential to improving long-term wellbeing. Dr. Starmer and Dr. Moore discuss this more in detail.
[Dr. Gopi Shah]
Then, going back to mental health, who are our mental health partners, and what's the timing of getting our mental health partners involved with these patients?
[Dr. Heather Starmer]
This is a real challenge, just as we see across medicine. We don't have adequate medical health support in the US, not enough providers. We are also fortunate. We do have a psycho-oncology group that is very close physically to us, and we can get patients involved with them from the time of diagnosis. If we have somebody who has baseline issues with depression, anxiety, and or they just develop them as part of their diagnostic process, we can try to get them involved with either our social worker as the first step, and then our psycho-oncologist if they need more assistance.
Once you get out of a major cancer center, I think it can be really challenging to find mental health professionals that specialize in issues around cancer survivorship. Oftentimes we're also trying to make sure patients are aware of support groups, because support groups are usually run by somebody in the mental health or co-led by somebody who's a mental health provider and other organizations that may be support organizations that can help as well. I don't know if you have other thoughts, Mike?
[Dr. Michael Moore]
No, I think it's very similar. I think that sense of community is real. I think the some of the biggest factors that play into the depression are isolation, the challenges with getting back to social life, as far as whether it's communication issues or, let's face it, almost anything social, revolves around eating and drinking. It's very difficult for many patients to get back to that quality of life that they knew before, and oftentimes it leads to this vicious cycle of more social isolation and then less mental health as a result of that.
I think many of the support organizations and the programs now that are more active are really trying to incorporate, whether it's a patient mentoring aspect or these chat rooms where people can go in and really talk to other people who have had a similar journey. Also awareness programs and webinars that are created to make sure people know, one, they're not alone. What is it that they can do to try and tackle some of these things that are greatly impacting them? I do think we're just scratching the surface.
We had a Head and Neck Cancer Survivorship Symposium that we have every year.
Last year, the one we did in Philadelphia, was striking as far as how much the mental health aspect came up. There's actually even an upcoming webinar that's being developed through the Head and Neck Cancer Alliance and the Head and Neck Society that's focused a lot on this. I think it is something that, when you ask patients after the fact, they all wish that they had that assessment before and during treatment.
If you were to ask them when they're sitting in your chair and you're telling them they have a cancer diagnosis, it's, to be honest, the farthest thing from what they want. I think one of the biggest next steps we need to take is, when is the right time to have that conversation? For many things, prevention's the best way, and I'm confident that's the case here, as far as trying to support them during it. In reality, there are some patients who may not be ready for that just yet, or they don't think they're ready until it's almost after the fact and they're trying to catch up with it.
[Dr. Heather Starmer]
I think the other piece that goes with that, I didn't have a full appreciation of. I knew it was there, I just didn't have a full appreciation. It's just how real the fear of recurrence is and how heavy that weighs on people. When I did some qualitative research around head and neck lymphedema, every single patient and every single caregiver, when lymphedema came on, they thought the cancer had come back.
Every time the smallest things happen. I think one of the things we really also have to do is make sure that patients and caregivers also really understand what are true warning signs and what's just a cold, right? Sometimes a cold, it's just a cold, a sniffy nose. I think making sure that we also really provide good education about, and then also access to somebody on the team who can help to dispel some of the concerns when things come up that are maybe not cancer-related.
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Post-Treatment Assessment Guidelines & Quality of Life in Head & Neck Cancer
Long-term data on function and quality of life in head and neck cancer survivors beyond five years remain limited, with existing studies primarily focused on those with persistent complications such as late radiation-associated dysphagia. In the absence of robust 10-year survivorship data, structured longitudinal assessments remain critical. Institutions are increasingly integrating standardized tools like the Patient Concerns Inventory, MD Anderson Symptom Inventory, and the Vanderbilt Head and Neck Symptom Index to efficiently identify patient-specific symptoms and concerns. These instruments not only flag active clinical issues but also help triage concerns most relevant to the patient. Ongoing surveillance also includes annual evaluations of cranial nerve function, lymphedema, thyroid health, and vascular complications such as carotid stenosis and baroreceptor failure, highlighting the importance of individualized, multidisciplinary follow-up beyond the initial treatment window.
[Dr. Gopi Shah]
Do we have like studies or data that look at function, or mobility, quality of life 10 years out? Do we have more of that in literature now? What are we finding?
[Dr. Heather Starmer]
It's pretty limited. I would say most of the data that is out there at that point in time are really looking at the people who are not doing well. It is the people with the late radiation dysphagia. I think we have a limited understanding the average person and how they're doing at 10 years. A long-term study is three to five years for the most part. We do know that there are quality of life issues, but I am unaware of really good, strong literature going out that far.
[Dr. Gopi Shah]
Do we have any guidelines yet or like an assessment tool for head and neck cancer survivorship, or for survivors? A checkbox of things that we should be looking at, like one year after treatment, three years after treatment, or things that we now include in our initial assessment that maybe we weren't doing to include that lens?
[Dr. Michael Moore]
…You're assessing almost at every visit the swallowing and dental care, obviously wound healing. We do a distress screening to try and see whether or not they have any acute psychosocial or mental health distress and get them plugged in with the appropriate team members if they do. Also, thyroid, so once a year, you check a TSH. If they have a thyroid gland, you want to get a better appreciation of whether or not it's been impacted by, usually, obviously, with radiation therapy. If they've had that, then they would run the risk of getting hypothyroid, which could obviously manifest as more lymphedema and depression and a lot of things that would be masqueraded by hypothyroidism. There are some great tools and surveys that are implemented.
[Dr. Heather Starmer]
There are a large number of different tools that can be used to monitor for symptoms. I think there's one survey that's really nice that came out of the UK called the Patient Concerns Inventory. It's basically a checklist of all the different kinds of symptoms that people with head and neck cancer might experience. It gives the patient the opportunity to check off what they're experiencing, but also, what are things they actually want to talk to the provider about…
There are many different things. The MD Anderson Symptom Inventory, the Vanderbilt Head and Neck Symptom Index, all can similarly give the provider a sense of what are active problems for that patient in that point in time… Another thing that I think is worth mentioning from a long-term perspective is also keeping an eye on the carotid arteries, and so doing ultrasonography.
I know in our center, usually it's about five years out, but keeping an eye out for issues around ultrasonography. Also, baroreceptor failure is another late toxicity that we might see. Cuing patients in to keep an eye out for that. Then in our practice, we do an annual gradual functional surveillance evaluation. We're looking at swelling, we're looking at cranial nerve function. We're looking at any other general worsening that we might need to send them on to physical therapy, or psychological oncology, or whomever the case may be. I know that's different in every institution.
Multidisciplinary Care in Survivorship Clinics
Implementing formal survivorship clinics in head and neck oncology remains logistically complex, often hindered by limited personnel and concerns about continuity of care. While some centers, like the University of Pittsburgh, have developed robust multidisciplinary models, many others rely on transitional strategies. A common approach involves surgical teams continuing care into the second year post-treatment before patients “graduate” to nurse practitioner–led follow-up, where visits prioritize quality-of-life issues and symptom management. Embedding supportive specialists, such as speech pathologists and dental teams, within or adjacent to the clinic helps facilitate integrated care without overextending resources. This hybrid structure aims to maintain clinical oversight while offering patients more time and attention during visits, especially for late effects that may be overlooked during routine surveillance.
[Dr. Gopi Shah]
Are there enough patients now where you have like a separate survivorship clinic that's like potentially multidisciplinary? I feel like other cancers have that? [chuckles]
[Dr. Heather Starmer]
Yes. I think there are places where it exists. I know we have had multiple false starts, so we keep trying to do it. Then it's always the question of, who's involved and what patients are involved? There are some cases where certain oncology providers say, "No, no, no. I want to personally see the patient myself. I don't want to send them over to a nurse practitioner who didn't know them throughout the rest of their journey."
We haven't been able to formally implement that in our center. I know that like University of Pittsburgh is a great example of one program where they've got it figured out. It's multidisciplinary there where they have a head and neck surgeon, a nurse practitioner, physical therapy, speech pathology, dietician, seeing patients, but that's obviously a big commitment of lots of manpower. Mike, how about you guys?
[Dr. Michael Moore]
Yes, we found, I think, a similar thing to you and many others around the country. It's just logistically very challenging. The way ours works is, we follow them as a surgeon. Most of the time, two years out, occasionally, we transition them to our nurse practitioner a little over a year but it's usually two years out. When I do that, I talk to the patient about it, I say, "This is a good graduation," and then I actually have the nurse practitioner come in and we do an exam together…
We don't have dental in our clinic, they're right across the hall. Very closely related to us, but a lot of that just depends on the individual patient. It's like having a true multidisciplinary cancer clinic too. There may be plenty of patients who don't need to see medical oncology or don't need to see surgery, or things like that. Because of that, it's just been a challenge to really fully devote, as Heather mentioned, the people power specifically for that. The way we've done it, we've tried to find the right balance of still allowing them to graduate to this next aspect of care.
Resources for Head & Neck Cancer Patients & Clinicians
Multiple national organizations offer free, accessible resources for head and neck cancer survivors, yet these tools are often underutilized due to limited awareness or suboptimal timing of referral. The Head and Neck Cancer Alliance, originally focused on prevention and awareness, now provides a broad spectrum of patient-centered support including webinars, peer mentorship, and online forums. Additional organizations like the THANC Foundation, Oral Cancer Foundation, and Head and Neck Cancer Living Foundation offer focused support, including dental assistance and local support groups. Introducing these resources early and revisiting them throughout the care continuum helps ensure patients can access relevant support when they are ready. Clinicians are leveraging simple tools like QR codes, EMR-linked after-visit summaries, and mailing lists to streamline access and maintain continuity of educational and psychosocial support beyond the clinical visit.
[Dr. Gopi Shah]
I wanted to get more into resource that are out there for other providers as well as patients. You'd mentioned the Head and Neck Cancer Alliance. Can you tell us a little bit about the Head and Neck Cancer Alliance?
[Dr. Michael Moore]
Yes. I'm certainly happy to start. I've been involved with the Head and Neck Cancer Alliance for a number of years. It is an organization that started primarily on head and neck cancer awareness and early detection and prevention. Happy Head and Neck Cancer Awareness Month. This is April. As a part of that, over the years, it's really evolved though to meet the patient around the time of diagnosis, and provide a lot of educational resources to help them with determining the right treatment for themselves, and then, obviously, supporting them during and after therapy.
The organization has a lot of different resources available. The website is headandneck.org, but there are a lot of free resources there. Everything from online chat group that are patients who are going to that site to ask questions and get feedback from one another on what's worked for them. There's a regular webinar series. It's a partnership with the American Head and Neck Society that has usually about once every two months, a webinar on the different survivorship-related topic.
There's also a mentoring setup where it's through Immerman's Angels that the Head and Neck Cancer Alliance help facilitate. If you get diagnosed with, for example, like an oropharynx cancer and you're going to get radiation and chemotherapy, they would pair you up with somebody who's had a similar treatment that could provide some insight to that. There are a number of other great organizations, the support of people with oral and head and neck cancer, they organize a lot of support groups around the country.
The Thank Foundation, so the Thyroid and Head and Neck Cancer Foundation is another really strong organization. The Head and Neck Cancer Living Foundation raises a lot of money to help with dental care around the time of patient's treatment and then, obviously, the Oral Cancer Foundation as well. I think there are a lot of different ones. The Head and Neck Cancer Alliance has tried to be one that's a bit more comprehensive, but at the same time, I think there are many other great organizations that are out there to help support people through the journey.
[Dr. Gopi Shah]
When do you provide patients with this information? When do you say, "Hey, you should check out the Head and Neck Cancer Alliance," or, "Here's the contact webpage for the dental care?" I think you had mentioned it was the Living Foundation for Dental Care. When do you start giving patients that information? Because many patients may not realize that those are important resources to have. What's the timing of that? Is that first visit? [chuckles] It's fifth visit?
[Dr. Michael Moore]
Yes, to be honest, I've started doing it very early on, and then I just revisit it. We have little QR codes where they can go in and scan it to learn about different things and just trying to make it as easy for people as possible. For ones that are more specific, like the Head and Neck Cancer Living Foundation, where it's more dental focused, if you get a sense that that's a big barrier for them, then we'll introduce that but that doesn't necessarily apply to all patients.
We have a welcome packet when they first get diagnosed and we provide that information with them. We also try and outline-- We don't know maybe what your treatment is going to be yet. We may or may not have talked to them about it just depending on their particular scenario. We do talk to them about the fact that we're going to be following them moving forward and providing regular support along the way.
I mentioned that there may be times where you don't feel like this other information is necessary, but I just encourage them to look at it early on because I give them the anecdote that many of my patients say, "Geez, I wish I had seen this when I was going through it," when they look back after the fact, they found it very valuable. I mentioned that to people and then let them go and check it out for themselves.
[Dr. Heather Starmer]
Yes. We do the same thing, and I think the returning to it is really important. We also have it integrated into our electronic medical records. The after visit summary, the links to those foundations are also there so that, if they're not interested at the beginning, they can always go back to it. Then the other thing for people who are not already, for instance, the Head and Neck Cancer Alliance does have a mailing list. If you're interested in knowing about what webinars are going to be coming out so that you can share that with patients, you can certainly get on the mailing list for that. You're knowing, what the different topics are that are coming out.
Podcast Contributors
Cite This Podcast
BackTable, LLC (Producer). (2025, May 13). Ep. 222 – Survivorship in Head & Neck Cancer [Audio podcast]. Retrieved from https://www.backtable.com
Disclaimer: The Materials available on BackTable.com are for informational and educational purposes only and are not a substitute for the professional judgment of a healthcare professional in diagnosing and treating patients. The opinions expressed by participants of the BackTable Podcast belong solely to the participants, and do not necessarily reflect the views of BackTable.
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