Head & Neck Lymphoedema: Collaboration, Care and Clinical Practice

Head and neck lymphoedema remains one of the most challenging and often under-recognised consequences of head and neck cancer treatment. In this episode of Lymphoedema Insights for Health Professionals, Maree O’Connor is joined by Dr Amanda Pigott, Advanced Occupational Therapist and Clinical Specialist in Cancer-Related Lymphoedema, to explore the evolving role of the lymphoedema practitioner in this complex area of care. Together they discuss practical approaches to multidisciplinary collaboration, strategies for building referral pathways, supporting patient self-management, and maintaining evidence-informed practice. Drawing on extensive clinical experience, Amanda shares valuable insights into the functional, psychosocial and long-term impacts of head and neck lymphoedema, providing clinicians with practical ideas to strengthen assessment, advocacy and patient-centred care across a range of practice settings.

 

About our guest speaker – Dr Amanda Pigott
Amanda is an Advanced Occupational Therapist and Clinical Specialist in lymphoedema at Princess Alexandra Hospital in Brisbane, where she works within the cancer-related lymphoedema service. She has more than 25 years' experience as an occupational therapist, with extensive expertise in oedema and lymphoedema management across cancer, acute care and rehabilitation settings.

Amanda has led multidisciplinary lymphoedema services, trained allied health professionals across Australia, and continues to contribute to advancing practice through education, research and clinical leadership. She is an Honorary Research Fellow at the University of Queensland and remains actively involved in the Australasian Lymphology Association through its research and conference committees.

Join Amanda live. Dr Amanda Pigott will also be joining the Q&A panel for our upcoming webinar, Spotlight on Internal Head and Neck Lymphoedema: Assessment and Management, on Tuesday 21 July 2026. It's a great opportunity to ask questions, hear from an expert panel and deepen your understanding of this important area of practice. Register here: https://lymphoedemaedu.com/all-courses/internal-head-and-neck-lymphoedema/

Sponsor
This episode of Lymphoedema Insights for Health Professionals is proudly supported by Essity. Their JOBST JoViPak Chin Strap is designed to manage swelling of the neck, mandible, and face, while comfortably accommodating the ears. When paired with the JoViPak Neck Pad, clinicians can achieve more effective compression for bilateral oedema, including challenging areas around and behind the ears. 

Adjustable, comfortable, and suitable for overnight use, these solutions support patient compliance while helping to reduce swelling and address fibrotic tissue. These products form part of Essity’s broader JOBST portfolio, providing clinicians with comprehensive options for lymphoedema management across a range of presentations. 

To explore the full range and access clinical resources, visit jobst.com.au. 

Stay connected with Lymphoedema Education Solutions (LES)
LES offers a diverse range of professional learning opportunities – including online self-paced courses, face-to-face workshops, and accredited training modules – to help you build confidence in your lymphoedema management skills.

🌐 Visit the LES website to explore upcoming course dates and learn more: https://lymphoedemaedu.com/

👉 Subscribe to the LES monthly newsletter for updates, resources, and course announcements: https://lymphoedemaeducation.us10.list-manage.com/subscribe?u=21477ad0021cc388b9c1d508b&id=65df668025  

Transcript

SPEAKER_01 0:05

Head and neck lymphedema is a common but often underrecognized consequence of head and neck cancer treatment, with the potential to affect function, participation, and quality of life. In this episode, we explore the role of the lymphedema practitioner and the importance of multidisciplinary collaboration and practical strategies for building referral pathways and maintaining evidence-informed practice. Welcome to Lymphedema Insights for Health Professionals. I'm Marie O'Connor, physiotherapist at Lymphedema Education Solutions, where we empower health professionals with the tools and knowledge to manage lymphedema confidently and effectively. This podcast is for educational purposes and is intended for health professionals only. It does not replace individual clinical judgment or medical advice. So please consult appropriate guidelines and qualified professionals when making decisions in practice. Today's episode is proudly supported by SIDE. Thank you to SEDI for supporting clinician education and helping us bring these conversations to the lymphedema community. July is recognized as Head and Neck Cancer Awareness Month, making it an important opportunity to increase awareness not only of head and neck cancers themselves, but also of the long-term impacts that people may experience following treatment. While advances in treatment continue to improve survival, many individuals live with side effects such as lymphedema that can significantly affect function, participation, and quality of life. Multidisciplinary teams are an important part of managing side effects of cancer management. To help us navigate the role of the lymphedema practitioner, I'm joined by Dr. Amanda Piggott. Amanda is an advanced occupational therapist and clinical specialist in lymphedema at Princess Alexandra Hospital in Brisbane, where she works within the Cancer-related lymphedema service. She has more than 25 years' experience as an occupational therapist with extensive expertise in edema and lymphedema management across cancer, acute care, and rehabilitation settings. Amanda has led multidisciplinary lymphedema services, trained allied health professionals across Australia, and continues to contribute to advancing practice through education, research, and clinical leadership. She's an honorary research fellow at the University of Queensland and remains actively involved in the Australasian Lymphology Association through its research and conference committees. Amanda, thank you for joining us today. To begin, what do you see as the most important role of a lymphedema practitioner in head and neck cancer management?

SPEAKER_00 2:57

It's a big question to start with, Marie. I think it is such a pivotal role with these patients. I think often the lymphedema practitioner is coming into play at a time when other supports are reducing after head and neck cancer treatment. And so the role, therefore, becomes quite multifactorial. So I guess first and foremost, we're involved in the treatment of the lymphedema, and I think that's our that's our core role there. So we're delivering care. There is a huge focus, I think, for the lymphedema practitioner on upskilling the patient to become an effective self-manager. One of the most important things with head and neck lymphedema management is that it really can't only be done by the lymphedema practitioner. It has to be done in partnership with the patient. So there's a lot of education there in terms of the role. It's why I find head and neck lymphedema one of the more poorly understood areas of lymphedema. So that the patient often arrives with very little understanding of why they have swelling and what the expectation is for that swelling. And that can lead to dissatisfaction with treatment if they come with an expectation that their condition will resolve with a couple of treatments from you. So education about the condition is really important and then starting training them in self-management as well as delivering care yourself. There's so many possible treatment modalities that a lymphedema practitioner can use at that time that I think the skill is in the role is actually involved in curating those modalities to suit the patient to really develop an individualized treatment package. Things that we're considering there is how much the patient can actually manage, what level of distress or bother the condition is actually causing them. And those two things probably come first before the degree of swelling that they actually have. So although we have a lot of treatment options, we often will tailor a package to suit those three criteria for a patient. So that for me sort of fits under the lymphedema practitioner role in actually delivering the lymphedema care for the physical symptoms. But equally important is the psychosocial role that I think a lymphedema practitioner plays at that point in time, especially that adjustment to the new normal. Often we are becoming engaged at a time where the patient has finished the head and neck cancer treatment and they are adjusting to the long-term side effects or consequences of the head and neck cancer treatment because we might see them quite often during that time. We can play a really important role in assisting them to accept which changes might be ongoing, and also assisting them to get support for changes that could be improved at that point in time. And I think we're really part of that psychosocial adjustment is return, trying to return to valued life roles. So we may be supporting a patient through a return to work or a return to family life or social life, and assisting them to identify the barriers and overcome and adjust and adapt when those things can't be done in the same way as they were previously. So that's my second key role, I think we're playing. And the third key role I think we're playing is more of a symptom management support, I guess, is the umbrella I'd put it under, where I think patients have a sort of constellation of persisting symptoms after head and neck cancer treatment. You know, it could be speech, swallow, range of motion, nutrition, fatigue, dry mouth, oh too many secretions. And our role as other sometimes supports might be reducing is identifying where we need to re-engage with the multidisciplinary team or advocate for the patient and support them to connect with relevant health professionals, um, allied health professionals to understand those symptoms and how to best manage them. But I do also find we have a role in engaging with the medical oncologists and radiation oncologists. As any symptoms that arise that might be concerning the therapist or the patient uh become prevalent, then we can be involved in identifying where people are needing earlier referrals, um earlier reviews than they might have scheduled otherwise.

SPEAKER_01 7:36

Fantastic. That was comprehensive for a long answer. Pretty broad. I know it was good. But there was a couple of things that I've just written down here. An interesting fact that in other forms of cancer, such as breast cancer, gynecancer, people do come perhaps nowadays more informed, either because there's better screening and surveillance and they're talking about lymphedema, or they've gone out onto the web and searched. You don't think this group, do you think it's different? Is it nearly like before we had that? Do you I mean, are they sort of very much I don't know as much?

SPEAKER_00 8:15

I I think it's certainly not true for everyone. Some some patients come having done that background research. But yeah, I think with head and neck can with head and neck lymphedema, we don't have the research to support um prospective monitoring or early intervention in this group. So therefore, they're often referred at a later time point than, for example, breast cancer-related lymphedema. So they haven't had though those touch points with um allied health professionals along the way to give them the education about um the potential for head and neck lymphedema. Some services are able to resource um that early intervention approach, but but others are not, and it and it's not widespread because we haven't got as much research support as we have for conditions like breast cancer-related lymphedema.

SPEAKER_01 9:06

And I like your idea of being that role person that's a bit broader as well. Because in say, and I I know I'm reflecting on breast cancer, but there's often, you know, your breast cancer nurse, you've got all these people that are very supporting the person and navigate a lot of the referrals. Do you feel sometimes in the head and neck world with lymphedema when they come to you and you do spend a you know a lot of time with these people that you'll be having a bit of that role if as the referrer?

SPEAKER_00 9:37

I do find that. Um, I I think there's an element, there's a cohort of patients with head and neck cancer who are poorly health literate. Um, and that's probably a factor that they come with uh um having sought less information and just gone through the treatment, and it's afterwards that they're stopping and thinking, you know, is this going to keep happening for me? Why do I still have these symptoms? I've finished my cancer treatment now. Um, and their review schedules might be becoming longer. Um, so they don't have, yes, the close contact with the nurse navigator or the or the treating teams often at the time when we might be ramping up our lymphedema therapy.

SPEAKER_01 10:19

Yeah, no, that's really fascinating. So the next question one of the themes that often comes up in cancer care is the importance of the multidisciplinary collaboration. You know, we've got lots of these teams occurring. So, how can a lymphedema practitioner best integrate into the multidisciplinary team for head and near cancer? What's how do you do it?

SPEAKER_00 10:40

Uh well, I guess it's uh longevity for me, Marie. I've been there for a long time. But um, how have I done it? I think um attending wherever possible the MDT meetings. So um I work amongst a team of um occupational therapists and physiotherapists who are integrated into the head and neck MDT. So I have the good fortune of having Allied Health um colleagues who will attend the early diagnostic MDTs, um, the treatment planning MDTs, and then even once they're in, for example, in radiation oncology, we have our Allied Health team attending all of those MDTs as well. So, as a um concept, um the lymphedema therapist is very well represented at those MDTs. And uh so I think that makes us quite visible, and that's been very helpful. The other things that I think are helpful is um really seeking to understand the roles that each of the team members play. So um to understand where we can best fit in. Um, you know, what does the nurse navigator do? What does the care coordinator do? Um, how does speech and diet work in this space and how can I best work with them? Um I I've done joint sessions with some of those health professionals over the years that's helped them to understand my role and me to understand their role, you know, where it where it's been suitable. Um I think providing providing um feedback on the outcomes that you're having when you're accessing other allied health professionals and the MDP is is really useful for building your role within that team. It promotes your skills, promotes your capacities, shows what you can do to assist patients in their recovery. We're all there for um the achievement with an aim to achieve the best outcomes. So once people see the contribution that a lymphedema practitioner can make, I think the the snowball effect starts and and um one thing builds upon another. The the other thing I probably think is seeking to understand how the patient flows through the system that you work in. Because each of our systems work differently. And um, if you understand that flow, then it helps to work out where it you may be the most valuable to invest your time. So where your service fits into um the scheme of patient flow is is is a useful thing, I think, for integrating effectively into the MDT.

SPEAKER_01 13:19

So you've obviously spent a lot of time, as you said, over a number of years to get this the where it is. And that's fantastic that you are literally integrated. If I was a practitioner in a hospital and I thought, oh, you know, we've got no services for head and neck, where would you start? Would you just say, you know, could I come to the MDT meeting or or something like that and slowly infiltrate?

SPEAKER_00 13:48

Uh absolutely. I'd I'd start with a conversation with whoever was in charge or whoever was, yeah, at the top, who who's invested in head and neck cancer management and head and neck cancer outcomes? Um, and that that's how I started conversations with them. You know, I'm really interested too. I I've seen a couple of cases. Um, I'd really like to be more involved. How can I do that? Can I come to the meeting? And you know, you start at the meeting and maybe it starts small, but these things build with time. Um, and I think being a visible presence, yeah, helps along the way. Absolutely.

SPEAKER_01 14:23

I know with the MDTs that I've been involved with breast cancer, the best ones have been I've had the seat at the table, but I've actually been asked questions. Do you know what I mean? Or I've piped up. So for an example, if someone's having radiotherapy to the axilla, and I've said, Oh, hang on, I really need to see this person because they're at higher risk. Are you at that stage where you are that you can have those inputs uh or in the old days of MDT, I was sort of in the back row of the doctor with uh MDT. Um, and it was sort of like a listen and learn, but not that collaboration. What do you feel now?

SPEAKER_00 15:03

Well, I think we have in my in my workplace, we have different allied health at different MDTs. Uh, and so I guess each person approaches that uh in different ways. I think having a prior connection and having had a prior conversation with somebody else at that MDT is helpful so they know who you are and why you're there, because those places can be a little intimidating. And if if you're feeling uncertain, having someone be able to refer to you is helpful, um, even if it's referred to you for a comment or a question or even just to introduce you as you as you attend the MDT. But yeah, I'm certainly in a comfortable place now to be able to say that person sounds like um they're at high risk, that person sounds like this would help them or that would help them, um, and be able to advocate for our role there. I think wherever possible, that's incredibly uh useful and and it promotes our role and it promotes um awareness of lymphedema and what can be done to improve lymphedema.

SPEAKER_01 16:01

And I think that's for important for people listening that are new to the area that this is what we can aim for. Do you know what I mean? You know, we've got important things to say and be involved, but also to listen as well and learn. But that's something we can really move towards.

SPEAKER_00 16:16

So, Maria, follow that up, um, if I can, just a little bit. I've I've had a couple of um thoughts on this recently where it still surprises me the um limited understanding that some of our medical colleagues and surgical colleagues have about lymphedema. And I think this the space for uh piping up and and advocating in those MDTs is really still an essential role that we can play. Um I have, I know there's some research happening in in Australia at the moment looking at um medical education around lymphedema and identifying some gaps. Um, I think head and neck it probably is even amplified. But um, you've had some recent um both medical and surgical colleagues who um are still of the belief and articulate it quite comfortably that head and neck lymphedema um is is self-resolving and and will if the patient just gives it time, it will go away by itself. And and I have had to, you know, felt the need to say, well, actually, that that isn't what we observe. And people do have this in the very long term, and we know that lymphedema treatment can help these outcomes. So um, you know, even in uh medical and surgical colleagues who might be informed about the awareness of lymphedema, still I think that um there is space for improved knowledge about how it progresses and whether it does or doesn't resolve.

SPEAKER_01 17:46

Which is fascinating, isn't it? Fascinating dry someone's neck or dissect someone's neck, you have had a major disruption. Do you mean like anyway?

SPEAKER_00 17:58

That's that's really it really devalues the symptoms people have uh in their recovery and how difficult they are to manage. Yeah.

SPEAKER_01 18:05

And they're seeing them regularly, so it's in front of their face. Like, you know, of all the edemas, I reckon, the head and neck is the so visual. Like you can cover a breast, you can cover an arm, you can cover your foot, leg, whatever, but you can't really cover your face and your neck. So I'm just not sure how that happens, but anyway. A quick thank you to today's sponsor, Essety, for supporting this episode of Lymphedema Insights for health professionals. Their Jobs Jovi Pack chin strap is designed to manage swelling of the neck, mandible, and face while comfortably accommodating the ears. When paired with the Jovi Pack neck pad, clinicians can achieve more effective compression for bilateral edema, including challenging areas around and behind the ears. Adjustable, comfortable, and suitable for overnight use, these solutions support patient compliance while helping to reduce swelling and address fibrotic tissue. These products form part of SED's broader JOBES portfolio, providing clinicians with comprehensive options for lymphedema management across a range of presentations. To explore the full range and access clinical resources, visit jobs.com.au. Let's look at the private practice or community settings. So a lot of our listeners are perhaps working in those settings. So they're not in the hospital, they haven't got that access to all those wonderful things. So they haven't got that access to that formal multidisciplinary team. So what do you think is the most effective way for practitioners to build strong clinical relationships that lead to ongoing referrals?

SPEAKER_00 19:49

Well, I'm not a um I'm not a private provider, so um I I thought I could can probably talk to what I look for in a private provider and how I have found it helpful to connect with private providers because um, you know, if I see people publicly, I'm looking to refer them where it's suitable for private management. Um things that have helped raise the visibility of a private provider for me have been people who are really active in the lymphedema community. And that could happen in different ways, but um, that might be through attending similar professional development, it might be that they have um even delivered cases or um uh presentations in in local professional development forums. It might be that they're doing some sort of research, it might be that they're involved in an organization like the ALA. Um, but but some sort of involvement in the lymphedema community does raise the visibility of a private provider, I think, as well as um providing feedback on patients. You know, often we refer somebody out and we really never hear how that progresses or how the um the outcomes are achieved. So having, even if it's brief, having some feedback loop to um the the referrer is really helpful. Um, and that might be the medical, sometimes often it's the medical referrer, but it's not the allied health team. So even just CCing those reports to the Allied Health team can be very helpful. Um, and I think those who can be responsive to um requests and referrals and flexible in their care delivery, it is really helpful. Sometimes we have people who really want to um seek out public at private treatment because the the public system is too structured and doesn't fit with their lifestyle and can't be for flexible for their needs. So having private options where um those features are available is is really helpful, of course, balanced with their good clinical practice. Um so those are I think the things that I look for in a private um referral option, but but really those who get in touch and and communicate with the public team where the care originates, um, that's the only way we we become aware.

SPEAKER_01 21:58

For sure. And maybe Just talking our last question about the MDT meetings, is that'd be great, wouldn't it? If you could see that they're perhaps asking to attend those meetings. One, it's great because people get to know that this person's out there. The fact that they're willing to take time out to go to one of those MDTs means they're interested, isn't it? So I think that's a really good important one as well. Yeah.

SPEAKER_00 22:20

Yeah, I had I've met with a speech therapist recently who had done just that. Um she was involved in head and neck lymphedema management and has navigated um attending uh private MDT and in head and neck cancer to to really build her role. And I thought what a fantastic thing to do.

SPEAKER_01 22:36

Fantastic. So, what's your best advice for staying current and maintaining evidence-informed practice in head and neck cancer care? Because I know there's so much out there for lymphedema practitioners. If you really want to target what's the best way of staying up to date, which we all need to, what would you suggest?

SPEAKER_00 22:56

I think that's well, it's it's tricky, isn't it? Like there's so much information coming at us, and lots of the people listening, I'm sure, cover a range of different areas, not just head and neck lymphedema. So it's it's hard to balance those demands. Um, and I think with head and neck lymphedema, you're really looking at needing to stay current in two spaces. It's head what happens in head and neck cancer and how head and neck cancer is treated, and what is happening in head and neck lymphedema. Um, because if we don't understand what treatment's been delivered in the first place and what the trajectory is for our patient, then it makes it harder to implement our treatment in an individualized way. So I think looking at those two spaces that probably makes it harder again, doesn't it? But um there's so many opportunities for us to tailor keeping up with current evidence to what suits our needs best. Um, I guess there's the there's the big ticket items, so going attending professional development, um, and that might be, you know, conferences uh I find incredibly useful. But we can't always get to those. Sometimes they're really expensive. Um, but we do have the benefit of a lot of local and free professional development now, um, face-to-face or online. Um, so you know, we've got local lymphedema groups that people can attend. Um, our hospital runs a statewide um special interest group in lymphedema. We've got the national Google group that people can be involved with, staying connected with things like um, well, give you a plug, Marie. I think your newsletters are a fantastic way that people um can stay in touch and have new and current evidence highlighted to them. I love having my um alerts out of PubMed and Google Scholar in, you know, as new evidence comes available with head and egg lymphedema, but it's a really specific term. It's easy to set up an alert for and have things literally drop into your inbox as new um papers are uh become available. Um but I think we have um there's a couple of other things, online resources and webinars now. When we connect with relevant organizations in this space, um opportunities for professional development and learning are delivered straight to us. So the there's so many organizations you could think of here, lymphedema organisations like the AA Australasian Lymphology Association, international ones, British Lymphology Society have got great resources, National Lymphedema Network have online uh webinars all the time, International Society of Lymphology, International Lymphedema Framework, those are wonderful lymphedema organizations that we can connect with. Um, but the the head and neck specific cancer organizations like Hunka, the Head and Neck Cancer Australia, have got such a good bank of resources. Um they've now got a you can do a lymphedema search function on their resources, and there's a couple of webinars on there, there's a um head and neck lymphedema handout on there, really great resources for patients and therapists to understand um the cancer treatment and the head and neck anatomy as well. Um, ANZ and Head and Neck Cancer Society have their conference every year. Um, COSA has resources as well. And I think we're connected with those organizations and we're on their lists, then we get those things coming straight to us. Hey, we're having a webinar about this, you know, you can jump online. But we've also got the benefit of our compression garment companies who've got um have got their um online education options now and they're delivering webinars semi-regularly. All of that stuff's free. We can sign up for it, we can watch the recording later if we can't do it at the time. Um, so I think there's those are a lot of different options for how you can get the knowledge. Bigger piece for me is how you digest that knowledge. I find information overload now, and and it's hard to embed that new knowledge in my brain and keep it there. Um, so that I think is almost as much of a challenge as more of a challenge than where you get the information from. Um so how that works for me is is twofold. Firstly, discussing cases and outcomes with colleagues and using that as a method to critique my practice, I find as valuable today as I did when I was brand new in this space. Um the colleagues might have changed over time and who's most helpful to me to debrief with, but I've always needed somebody to say, hey, I've just seen this person, it hasn't gone well, or I'm having a challenge with this person, or even when it does go well, just to say this is what I did. Have you got any other thoughts of what I could have done for that person? Um, I think is really helpful in a practice critique. Um, but the second way I find incredibly useful for digesting new knowledge is sharing it. And that can be sharing it with patients or with other colleagues. Nothing embeds knowledge for me more than simplifying it down to being able to deliver it to a patient. Um, and so the more I do that, when I learn something new, I try to embed it into a treatment session. I think patients are sponges for knowledge and they want to know about their condition, they want to know about new research. They don't need the perhaps the minutiae of detail that we might be interested in, but um, sharing that knowledge with them really helps it embedded with me. Um, you know, I've been recently trying to read about the pathophysiology of fibrosis compared with um lymphedema and trying to understand that the cellular changes and that that stuff is taking me a long time to really um have a working knowledge of and finding a simple way to explain that to patients, um, sharing that information with colleagues is is what has has really helped me. Um what I do when I read a new paper now is I pester my team with it. I send them an email. Hey, I just read this really interesting paper. This is my summary of it. Here's the paper. Does anyone, you know, how could we use this? Does anyone have any thoughts about it? Um and that really allows me to digest it and and and and socialize that information so that it becomes more present for me.

SPEAKER_01 29:11

Ooh, fibrosis. That sounds like a good podcast for next year. So once you've worked it out, you've digested it, you've really decided what really goes on, we will have another chat on that one, I think, um, as well. Good point though. I must admit, case studies are my biggest thing because sometimes, isn't it? Sometimes you hear you you read a referral or whatever else, you think, okay, I just better mean to remind myself about that surgery and what was done and you know what was taken, or there's something unusual, you know, the straightforward ones are fine, but it's just the unusual ones. But there's nothing like, as you say, presenting to someone else or asking questions, and they've got to think about it, you know, whether it's this particular thing, but it didn't work. And it's not always the things that win, you want the ones that don't work as well. Absolutely. You know, what's got because you pass it on to the next person, they've got one, and all of a sudden you build your bank of knowledge because you may not see a lot of head necks, but if you're hearing it from other people, then you were sort of nearly seeing lots, but indirectly in many ways, which is and sometimes it's it's not that it doesn't work because it's not a good idea, it doesn't work because something changed with the person's condition, and um it helps you it helps you start to process well, was that did I make the right choice or should I have made a different choice?

SPEAKER_00 30:30

And you know, some sometimes you can have made the right choice, but still not get the outcome that you were after.

SPEAKER_01 30:37

Exactly right, because we have a bank of knowledge that we implement something because it's worked before or it's been something similar. But as you say, you know, sometimes it doesn't work. And I always say to patients, clients, it's a work in progress. You are an individual. Do you know what I mean? We just got to navigate this. So there's the those expectations are also obviously realistic as well. So this is a a question for you to reflect on, Amanda. Looking back over your very, you know, extensive career, what you were gonna say long way, memory. Yeah, I I actually did you notice that I just slightly paused that. I wasn't gonna say old or anything like that. Anyway, what early experience or case most shaped how you approach head and neck lymphedema today? You can take that from any angle you want, but if you were to look at back today and you were thinking to talk to me as a new person who's just about to get into lymphedema management head and neck, what shaped you the most?

SPEAKER_00 31:40

Well, that's actually an easy one for me to answer because this case is still so front of line for me. Um I had done so back in those days, you did your uh level one training and then you did your level two training. So it wasn't a specific focus on head and neck, but it was sort of included in the level two. So I you know, I had a little bit of an understanding, but I certainly hadn't done a lot of management at all. And I had a case of a um young man in his late 20s who had probably the most severe case of um head and neck lymphedema I still have seen in in my entire time working in head and neck lymphedema. Um, you know, he was he was a working guy with he was married with two kids and had had head and neck cancer that was quite advanced and had a very heavy treatment burden. And the lymphedema he had developed was the highest volume I think I've ever seen. And I was incredibly confronted with what on earth I could do to help this individual with my rudimentary head and neck lymphedema skills. Um, but he was, I don't think it's an exaggeration to say he was desperate for treatment. He had um he he had lost his vision because of the swelling, had become so severe. He couldn't um speak because his lips were were so swollen, uh they had to remove his trackie because his um airways were were so swollen. So it was an extremely severe case that had led to his father driving him two hours to our treatment centre to um try to have some help. Um he had um so so I I tried I tried. I tried the treatments that um I had available to me that were really simple. And um I said to him, we're just gonna try and we're gonna see if this makes a difference or if it doesn't make a difference. Um some things worked and and some things didn't. Um but you know, we the the goals that I guess the the successes we had was that he could, you know, his vision was in improved for periods of time. He could engage with his children a little bit more. Um he he he went on to um, you know, his his condition was quite severe and his disease progressed and he died. And so he never you certainly wouldn't call it a successful lymphedema management case. But it did show me what working with somebody with this condition, how distressing it could be, how impactful it can be for the person, and um what I could do to assist. And it really led me down a path of wow, we need we need to do, I need to do more, I need to be more skilled, uh, I need to have more resources, um, and I I need to build up this service. Um and it um yeah, I I found him and his his um his case really uh inspiring. And I um was able to speak to um his family after he passed away and say, you know, you this case has been really important to me. And can are you comfortable if I continue to talk about it? Um and even to perhaps use some images from um, you know, the treatments that we've done to share with others to talk about why this is important and um and they were very happy for that. And um, yeah, that served as a great motivation for me and and still does. And you know, if I stop and think about all the other patients, um, there's certainly a lot that stand out in my mind. But I think um his case really started me on a head and neck lymphedema journey, um, and and I still think about it today.

SPEAKER_01 35:24

Yeah, and honestly, even some small wins on that would have obviously eased, you know. I mean that he knew that what the ev inevitable was, I'm sure. But the fact that you are able to reduce it somewhat, it's in it's like that palliative care whole thing, you know what I mean? What we are it's so in fact, the most probably valuable experiences for me has been in that sort of palliative care stage, end stage, to make even small differences, I think is so impactful. And they're the ones you remember. I agree totally. I've got lots in my brain, but they're the ones that stand out, and it does, it leads you down a passion that is so important. And I think with head and neck, it is such a visual. So um, the more we can get up early, and then obviously for him it was different. Do you know what I mean? You know, that wasn't going to change, but um we have a we have a role, and and I think we have an obligation, really, um, as therapists to to to be part of this um space.

SPEAKER_00 36:28

I think so too. And I think those, you know, those severe cases they they transition into the function and how important a role we can play in and you're trying to optimise function um in that space. But the the even milder cases, as you say, because it is so visual, some of the cases that really stand out in my mind are the are some milder cases where people um uh you know so engaged in um occupational roles and you know, needing to return to the workplace, needing to return to you know family life and and finding that visual impact of the lymphedema is so difficult to navigate that even where we might perceive it to be um low volume swelling, it is incredibly distressing and and highly impactful for that person. And and therefore that makes those outcomes really meaningful as well.

SPEAKER_01 37:17

Yeah. And when it's bilateral, sometimes you think, oh, it doesn't look too bad. But it's always, as you um, I've heard you say this before, to have a picture of before because then you can really see where they're coming from because you think, yeah, okay, that makes sense. That's not not you as such.

SPEAKER_00 37:34

Yeah, I spent a time, some time with a patient doing that this week, Marie, where you know, she we we could pull up on her phone a the photo of her before and the and the photo of her now. And it great gave great um a sense of self to her to talk about, you know, I don't feel like myself. This is what I looked like before, and I kind of want you to understand that. And, you know, we could talk about treatment changes and you know what things, what structures have changed, but what structures we could still improve upon. Yeah.

SPEAKER_01 38:02

I suppose there too you have to be quite realistic as well. Do you mean because the sometimes it will be the new norm, won't it? A little bit, maybe not, yeah. So that's a hard one.

SPEAKER_00 38:14

It's it's a hard one to navigate, but but an important one, I think, that um understanding if someone's perception is that they will return to exactly the same as they were before, having had perhaps extensive surgery and radiotherapy, um, needs some unpacking.

SPEAKER_01 38:30

Yeah, well, thank you, Amanda. Thank you for the huge contribution you've been doing over the years, besides talking to me today, and your expertise and insights, because you're there to support all the rest of us, you know, that are coming, I suppose, following on, like little, you know, people running after you to try and get the best for these, um, for these individuals, because it is so important. So this has been a really valuable discussion, and I know our listeners will take a great deal from it. It's clear that early identification, multidisciplinary collaboration, evidence-informed practice, and patient-centered care, which is essential, all play critical roles in improving outcomes for people living with head and neck lymphedema following cancer treatment. And thank you to everyone listening. We hope today's conversation has provided valuable insights into the evolving role of the lymphedema practitioner in head and neck cancer care. If you enjoy this episode, please share it with colleagues who may benefit from the discussion. For more educational resources, upcoming events, and professional development opportunities, visit lymphedema education solutions. Stay tuned for future podcasts to empower you with the tools and knowledge to manage lymphedema and chronic edema confidently and effectively. Until next time, keep supporting your clients with evidence informed care.