Lived experience of having lymphedema after treatment of head and neck cancer: A qualitative study

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Arends, Lisette van der Molen, Michiel W.M. van den Brekel, and 2 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4593670/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 06 Apr, 2026 Read the published version in BMC Cancer → Version 1 posted 4 You are reading this latest preprint version Abstract Background Head and neck lymphedema (HNL) is an accumulation of interstitial protein-rich fluid. During treatment for head and neck cancer (HNC), lymphatic vessels may be removed or damaged, causing a decrease in the function of the lymphatic system among 75% of the patients. To explore the lived experience of patients with head and neck lymphedema as a residual symptom after head and neck cancer treatment. Methods We performed a qualitative study using a narrative approach. Participants were eligible when they had lymphedema after completed curative HNC treatment. The interviews were analyzed using thematic analysis according to Braun et al. A maximum sampling strategy was used to include a diverse group of participants. Results Ten participants, five men and five women, were interviewed. Three main themes emerged. “One of many issues” highlighted the difficulty participants faced in distinguishing lymphedema from other symptoms they experienced. The second theme “Having lymphedema & dealing with it,” covers how the participants described their lymphedema and its impact on their social life. The third theme “Knowing and controlling my lymphedema,” covered the participants’ ability to recognize and manage their lymphedema, including self-management. Conclusions Our study shows that lymphedema is part of a larger palette of residual symptoms after HNC treatment. While it took some time to adjust to having lymphedema, it has minimal impact on social aspects in this sample. Participants showed high therapy compliance and used self-management techniques effectively. Our findings also emphasize the need for healthcare professionals to recognize the interdependence between lymphedema and other residual symptoms and address them in an integrated manner. Head and neck lymphedema head and neck cancer lived experience qualitative study Figures Figure 1 Introduction Head and neck lymphedema (HNL) is an accumulation of interstitial protein-rich fluid. During treatment for head and neck cancer (HNC), lymphatic vessels may be removed or damaged, causing a decrease in the function of the lymphatic system. This causes an increase of fluid in external structures, including the soft tissue of the head and neck, as well as the internal anatomical sites comprising the mucous membranes and underlying soft tissues of the upper aerodigestive tract [ 1 , 2 ]. HNL affects between 35% and 75% of people treated for HNC [ 3 – 5 ]. A distinction can be made between external and internal lymphedema. External HNL increases interstitial fluid in the skin and may experience pain; feelings of heaviness, tightness, or numbness; and reduced mobility, as well as an increased infection risk [ 4 , 6 – 8 ]. Internal mucosal lymphedema in the larynx is characterized by hoarseness and swallowing problems, which can lead to laryngeal dysfunction. Whatever its location, prolonged lymphedema is associated with structural changes such as adipogenesis, fibrosis, and chronic inflammation [ 9 ]. Treatment of HNL can be conducted in various ways. Complex decongestive therapy (CDT) is currently the best practice and most frequently used treatment, to reduce interstitial fluid and prevent progression into the severe irreversible stages of lymphedema with fibrosis [ 7 , 10 – 12 ]. The treatment consists of an active treatment phase of lymphatic drainage, compression therapy, skin care, and therapeutic exercises; and a self-management phase that includes exercises such as self-massaging or stretching exercises for external lymphedema or swallowing and vocal cord exercises for internal lymphedema. Despite treatment, HNL is considered a chronic condition. Although HNL is a frequent side-effect of HNC treatment, a small amount of qualitative research has been published. These studies have investigated aspects of HNL, related to self-care, the beliefs of health professionals, and the impact of HNL on patients’ swallowing, voice, and speech function [ 13 – 18 ]. These studies illustrated patients’ need for learning how to manage their HNL and adapt to their new situation, as well as some of the barriers they experience when addressing those challenges. With help of narrative inquiry [ 19 – 21 ], the patients’ lived experience, embodied in their stories can provide perspective on the practical and psychosocial impact of having HNL. In this qualitative study we aimed to explore the lived experience of patients with HNL as a residual symptom after treatment for head and neck cancer. With our qualitative findings we wanted to identify the concerns and needs of patients developing HNL. Understanding their perspective helps to formulate recommendations for clinical practice. This information can help guide future interventions and service delivery for caregivers. Material and methods Design This qualitative study has a narrative inquiry as methodology. Narrative inquiry, also called narrative research is the study of people's experiences. Narratives or stories are the object of analysis [ 22 , 23 ] .This method was chosen because we wanted to record the lived experiences of a group of patients with lymphedema after head and neck cancer. We performed in depth interviews. This approach allows patients to tell “their own story”, reflecting on events and the causes and effects of these events from their perspective, enabling exploration and understanding of the experience of HNL. Researcher characteristics Several researchers were involved. CA, MSc, female, works as a PhD-student and has a background in skin therapy and clinical epidemiology. She has received training in qualitative research and gained prior experience in conducting interviews. LM, PhD, female, works as a speech therapist and senior researcher. MB, PhD, MD, male, works as head and neck surgeon and is assigned as professor at a faculty of humanities. MS, PhD, male, works as a clinical epidemiologist and associate professor, and has a background in physiotherapy. KS, PhD, female, works as a speech therapist and postdoctoral fellow and has a background in health sciences. She has experience with qualitative research during her own PhD and now guides multiple students in designing, conducting, and reporting qualitative research. A bachelor student skin therapy (MvS) was during her internship involved. Participants and sampling strategies Possible participants were selected from patients of the Netherlands Cancer Institute (NKI). Patients were considered eligible if they met the following inclusion criteria: (a) completed curative treatment for head and neck cancer; (b) having internal or external HNL (c) no psychiatric or cognitive disorders that prevented them from participating in the study. Exclusion criteria were: (a) recurrence of disease or active cancer; (b) not capable of understanding and speaking Dutch. Patients were approached to participate in this study by their practitioner. A maximum sampling strategy was used with the goal to include a heterogeneous group of participants concerning tumor characteristics, type of cancer treatment, time since treatment, age, sex, and severity of lymphedema. The final total number of participants was determined by saturation of the data. Data collection All interviews were conducted at a location of the participant’s preference. For each interview, two interviewers were present (alternating CA, KS, and MvS), with one of the interviewers in the lead. The interviews were structured with help of an interview guide (see Appendix 1). The guide was developed by deriving topics from the existing qualitative literature and reviewed by an expert panel of healthcare professionals (CA, LM, MB, MS, and KS). Earlier qualitative studies on this subject focused mainly on the therapy participants received for HNL, findings showed high therapy compliance and identified barriers to HNL therapy [ 13 , 16 ]. Impact of HNL on speech and swallowing function and the daily impact was identified by Jeans et al. 2018. The narrative inquiry approach of this study was specifically chosen to reveal a complementary view of the stories of participants throughout their diagnosis, treatment, and rehabilitation journey. The interviewers began by introducing themselves, explaining the purpose of the study, confirming eligibility, and obtaining verbal and written consent. All interviews were audio-recorded with permission (range: 44–65 min) using a Roland Edirol digital recorder. Data collectors took field notes and both interviewers wrote a memo with information on key themes after each interview. The interviews took place between October 16th, 2020, and May 9th, 2022. Data analysis The recorded interviews were transcribed verbatim. The interview data were analyzed following the six phases described in the method of thematic analysis, by Braun and Clarke [ 24 , 25 ]. The first step includes familiarization with the data by repeatedly reading the transcription. After each interview, the interviewers all wrote a short reflection report formulating tentative themes and ideas about the data. After thoroughly reading the interviews and reflection reports, the second phase with initial coding was started by highlighting potential codes. The team discussed these preliminary findings. Exemplary quotes were identified using all interview data and non-English quotes were translated for inclusion in this article. Initial coding was performed manually in Word, and consequently transferred to Atlas.ti version 9 (Scientific Software Development, GmbH, Berlin, Germany). This resulted in 57 codes. Codes were then reviewed, discussed, and examined again by the complete research team. We categorized the codes as a team, to identify and define research themes across our dataset. This process resulted in a set of three fully worked-out themes, with nine encompassing sub-themes (Fig. 1 ). In formulating the themes, we chose to stay close to the data by using quotes of participants. The themes and categories were checked against the entire data. Ethics The study was approved by the Netherlands Cancer Institute’s Institutional Review Board (IRB) (registration number IRBd20-208). Patients received written and verbal information about participating in the study before they signed informed consent. Pseudonyms replaced the patient names to ensure the anonymity of patient data but to increase the readability. Results Ten participants were included in the study, interviews were conducted at participants’ private homes ( n = 5) or in the institution ( n = 5). In one case, the daughter of the participant was also present during the interview. Demographic information and medical details are summarized in Table 1 . Three themes emerged from the interviews: “One of many issues”, “Having lymphedema & dealing with it”, and “Knowing & controlling my lymphedema” (Fig. 1 ). The following section describes each theme and its subthemes. One of many issues. As all participants in the study had undergone intensive oncological treatment for HNC, with its various impacts and side effects, they could not isolate the lymphedema as an independent issue. Aside from lymphedema, participants experienced restricted mouth opening, reduced saliva, voice changes, movement restriction, and swallowing problems. Is this due to my lymphedema? Some of the participants had a conscious awareness of the possible interaction between the side effects, including Rose. After treatment for HNC, her voice changed, and she developed tinnitus. She wondered if these changes are related to the lymphedema: “Sometimes I think when things are a bit more tense: ‘Does that also affect my voice more?’ I wonder about that. And I have a bit of tinnitus. I've had it since [the lymphedema] started. […] Sometimes it seems a little worse. And then I think: ‘Does that have to do with the fact that I’m a bit more swollen?’ But I can't judge that very well.” (Rose) Rebecca has lymphedema but doesn't suffer much from it. She has not been treated for lymphedema. When the subject of lymphedema was discussed, her main complaint came up, which is the problem with mouth opening. She explained how she handles this when she goes out to eat: “Then I ordered pancakes. That's easy, then [to eat]. I mean a sandwich or something like that, I have to cut it in very small bits.”(Rebecca) I have very little trouble with it Nearly all participants lived without disruption of daily functioning due to their lymphedema. They experienced relatively little inconvenience, which was usually quite tolerable in daily life. For James, it took some time to accept his lymphedema. He wore a scarf for a while to hide the swelling. By the time of the interview, he experienced no shame and stated that he accepted the fluctuations of the lymphedema: “I have very little trouble with it. […], one time, it has more volume than the other time. But not that I think: oh [swears], I'm really embarrassed now. Not at all. I really have zero problems with it.” (James) Other participants indicated they did not want to pay attention to their lymphedema and sometimes preferred not to look at it. Andrew stated that he accepted his lymphedema but still avoids looking in the mirror because he doesn’t like seeing himself as much anyway, and could therefore easily deny his lymphedema: “Well, I kind of deny it. I'm already saying, yes, I prefer not to look in the mirror. I'm not someone who looks at my reflection in a store window or anything.” (Andrew) Having lymphedema & dealing with it The second theme covers how the participants described and experienced their lymphedema and how it affected their social life. Here is my chubby cheek This subtheme covers how participants described their lymphedema and give nicknames to their lymphedema. The interviews showed a clear distinction between the more substantial, observational aspects of having lymphedema and the emotional appreciation of lymphedema related to patients’ self-image. Many participants described their lymphedema in terms of how it feels: as hard, stiff, tight, or tense; or as lumpy, full, a thick clot or a ball. Yet, over time, the lymphedema also has become integrated into their self-image and identity. Some also had a nickname for the lymphedema, such as a chubby cheek, hamster cheek, or a mayor’s chin. Rose spoke somewhat affectionately of her lymphedema: “Yes, because it’s really here [she grabs her left cheek]. And this is just nice and smooth [compares this with the softer right side]. And here it’s a little bit more. It’s kind of like hamster cheeks. […] It’s kind of lovable.” (Rose) Alice, on the other hand, described her appearance as unpleasant. When the interviewer asked her how she felt about her appearance, she answered: “Horrible. To put it crudely: like having a dog's head. Like those bulldogs, those square ones, well that's how I feel as well.” (Alice) Although Alice is unhappy with her appearance, she indicates that the altered appearance has little impact on her daily life. She states that she does not feel ashamed about it, and she can talk about it with humor as well. It differs over time The subtheme “It differs over time” covers to what extent the participants experience discomfort in daily life from their lymphedema and how lymphedema differs over time. This can be during lymphedema treatment and recovery time but it can also relate to changes during the day. It focuses on the changed appearance and external care. Participants experienced changes in physical sensations of the HNL and how this differs over time, like Rose: “It just feels a little tense. […] It is like as if it's really hot, like when you have swollen feet or something. That feeling. [The swelling] gives more pressure on the skin for a while.” (Rose) Several participants experienced changes in the degree of lymphedema within and between days. Some participants reported improvement throughout the day resulting in less tightness of the skin or a decrease in volume. For some participants, it was clear what activities usually worsen their lymphedema. They explained how they avoid these activities, for example, by not sleeping fully reclined in the bed, not lifting heavy items, or not lifting things above the head. Lucy experienced this in the following way: “Yes [the lymphedema changes], also overnight. [...] No day feels the same. [...] Even through the day [the lymphedema differs]. [For example], I wake up in the morning, and I think: ‘Well, now I can move my neck easily.’ And then, without a particular reason, I notice that it becomes more difficult. Or I notice that it gets thicker.” (Lucy) I don’t let it bother me in social contact The subtheme “I don’t let it bother me in social contact” focuses on the social interactions the participants have with family, friends, and colleagues and the role of lymphedema within this social context. Almost all participants experienced no problems in maintaining social relationships. They reported that they have accepted their changed appearance, and most people close to them know that they have had an intensive oncological treatment for HNC. James had trouble facing colleagues and friends because of his scar and lymphedema, when he first started working and doing social activities again. He wore a scarf for a while to hide the visible effects of the cancer treatment. He referred to himself as “the scarf man”. To the interviewers, he described the process he went through as follows: “ Well, then you walk into your office wearing a scarf. Which makes me think: [curses] ‘Here I come, and everyone will turn around and look at me, and everyone will start asking me about it.’ […] Yes, that is, of course, a process you have to go through .” (James) After a while, he felt more acceptance towards these side effects. He stopped wearing his scarf and no longer felt the need to cover up his changed appearance. Some participants were still working, and most of them experienced little barriers with having lymphedema during their work. Walter reported that he feels so comfortable at work that he applies self-management for his lymphedema in the presence of his colleagues during the break. He said that his colleagues are no longer surprised by this. Participants also shared how lymphedema became a topic of conversation or interfered with interactions with their partner or family. For example, James felt the need to discuss his altered appearance: having a scar and lymphedema, when talking to his children about his cancer, as he was concerned about their response to it. During their conversation, his children showed a lot of sympathy, but five minutes later, they were playing outside again, which showed him that his children could let go of this information and go on with their life as usual, which was comforting for him. For Rose, a part of her neck feels uncomfortable when touched, which interferes with intimacy: “ My husband has a mustache, and if he kisses me on my neck, then here [points to the right side of the neck], it is fine, but here [points to the left side of the neck], it is a bit painful now and then. When it is a bit more swollen, I say: ‘Do it on that side’ [pointing to the right side of the neck where she would like to receive the kiss].” (Rose) Knowing & controlling my lymphedema The third theme, “Knowing and controlling my lymphedema” covers the entire period from recognizing the onset of lymphedema to performing self-management to control the swelling. Furthermore, it refers to the information the participants received prior to treatment about the risk of developing lymphedema and the effect of having this. I was afraid that swelling meant bad news This subtheme covers participants’ recall of how they experienced the moment of noticing swelling in the head and neck area. For most participants, lymphedema developed soon after treatment, and they discovered the increase in interstitial fluid on their own. John explained when the onset of lymphedema occurred: “After the radiation. Say two months after that [I noticed the lymphedema]. Because in the first phase after that treatment, you don't really notice it. Because it is red, and it hurts, and you don't really pay attention to it.” (John) Ethan noticed the development of lymphedema shortly after his surgery: “Well, yes, the fluid was actually there right after the surgery. I thought I had a puffy head.” (Ethan) At the onset of the lymphedema, almost all participants mentioned their anxiety that swelling meant that their cancer had returned. For them, this was a reason to express their cancer worry in consultation with their head and neck surgeon, so they go to the hospital for a check-up. Grace also mentioned that she experienced changes in how her body felt and the cancer worry: “A few weeks back, [the lymphedema] got a lot harder all of a sudden. It gave me a stingy feeling like they were using a really thin needle. It was like nerve pain or something. And then I got scared. I thought: ‘Oh no, I hope it won’t be wrong.’ But I already had an appointment for an MRI scan, [...], and the results were good.” (Grace) I understand things when I experience them The subtheme “I understand things when I experience them” concerns counseling and whether participants have received information about the risk of developing lymphedema after treatment. If they had received counseling, they shared how they experienced the counseling and if they missed anything. Some participants mentioned that they did not receive information about the risk of developing lymphedema after treatment. Some participants did not recall whether they had received counseling, but others did. James remembered that the healthcare provider informed him about the fluid that could remain after treatment: “They indeed indicated that some fluid accumulation could eventually remain. Well, I could imagine that you can't move your arm anymore [after treatment], but with an accumulation of fluid [I could not imagine what the impact would be].” (James) Some of the participants explicitly said that they did not mind that they did not receive information about the risk of developing lymphedema. Lucy explained: “Sometimes I think and feel, in hindsight, that I had too little information about that. But at the same time, I think: ‘If I would have had that information, then what?’ [...] Because all kinds of things were written down, I could read it, I could ask questions, so that's not the problem. […] I can get a lot of information in advance, but I only notice it when I have [the lymphedema], and I understand it when I'm in the middle of it. So, I can't say I missed information beforehand.” (Lucy) I was glad to receive specific and professional attention Almost all participants received treatment for lymphedema. They were treated by a lymphedema physical therapists at the NKI or in primary health care. They experienced therapy as pleasant and effective. Lucy experienced physical ‘space’ after receiving treatment from the physical therapist: "Although I could not actually see [any difference]. I got the feeling that there was some physical space. That there was a little less pressure on the neck. That was a pleasure, it already felt enjoyable. So that pressure decreased." (Lucy) Only a few participants wore compression garments. Some used a sling around the head, but none of them used a real fitted mask. Grace was fitted with a mask three times, but these masks were very uncomfortable for her. To her senses, her jaw was pushed back, causing problems with talking and eating. Because of this, she hardly ever wore the masks. “I got a mask. I've had three. It was just stitched the wrong way. It was supposed to stretch like this [pointing that the strap had to go under her chin]. But it went like this [shows that the pressure went over her chin]. That was very unpleasant.” (Grace) The frequency and duration of lymphedema treatment varied among participants from only a few sessions to a longer period of up to half a year with weekly sessions. James shared his experiences with the lymphedema treatment and the use of lymph-taping to improve lymphatic drainage: “At the beginning [the lymphedema treatment was] once a week, and then we did it every other week. [The physical therapist] massaged it and stroked [the lymphedema] away.”(James) As he described his routine in using the tape, he said that he did not use it every day. If I perform self-massage, the pressure on my neck releases Self-management was performed by most participants who received lymphedema therapy, and they referred to this as an important component of dealing with their lymphedema. However, the dedication, frequency, and the way of performance varied among participants. John is very consistent in performing his self-management. He suffers from both internal and external lymphedema. Because of this, in addition to massage, he performs various exercises, following the advice of the speech therapists. He also experiences real relief when he applies self-massage and therefore does so daily: “I am very busy with it. The swelling puts pressure against the bottom of my skull [...]. I sit like this [shows how he massages his cheeks]…. At a certain point, it is as if a door opens, [..] that pressure is gone [….] it is such a good feeling. Quite honestly, a true relief because that pressure is gone. And I am getting better at doing that. My physical therapist is very satisfied.” (John) Walter is self-disciplined in performing his self-management. Whether he is at home or at work during his lunch break, he always applies his self-massage. Despite experiencing results, he does it primarily because performing what he was taught has become a routine. He described how he routinely performs self-management: “Yes, occasionally, I just massage. In the morning and then occasionally in the afternoon and in the evening. I do it every day for about five minutes. It is enough, they say [physical therapist], and then push it all the way down so it drains. It doesn't really give relief, but I do it for my own good.” (Walter) James also applied self-massage and described how he experienced his lymphedema. He does not use a specific schedule for self-massage but tries to have some influence on the lymphedema by massaging. In the interview, he states: “So the only thing I still have occasionally is that I'll be sitting in front of the television, and I'll be like this [puts a hand under the chin to perform self-massage]. It's kind of hard below my chin. That's those proteins, I think. And when I massage it [...], I try to stroke [...] away the moisture. But that's really the only moment when I'm working on it.” (James) Discussion This qualitative study aimed to explore the lived experience of patients with HNL as a residual symptom after HNC treatment. The study focused on patients from one hospital and results should be considered in the context of the Dutch healthcare system. Three themes emerged from interviews: “One of many issues”, “Having lymphedema & dealing with it”, and “Knowing & controlling my lymphedema”. Participants experience various issues, including restricted mouth opening, reduced saliva, voice changes, movement restriction, and swallowing problems. This makes it difficult for the participants to isolate lymphedema as an independent issue. The second theme focuses on how participants describe and experience their lymphedema and how it affects their social life. The people we interviewed faced few social hurdles and had managed to get back on track in society. Some of the participants needed some time to adjust to their new situation. They made adjustments in, for example, work intensity and heavy lifting. The third theme was about recognizing and controlling lymphedema, including information received prior to treatment about the risk of developing lymphedema, and the effect of having it. Participants describe the moment of noticing the HNL, and how this made them insecure or even fearful. They also talked about whether they had received counseling or information about the risk of developing lymphedema. Almost all participants received treatment for lymphedema, and they performed self-management, but the dedication, frequency, and way of performance of self-management varied among participants. Participants who received treatment for lymphedema experienced this as very pleasant and effective, since it resulted in a relief of their symptoms. There was a high compliance towards self-management techniques, the participants performed this in various ways. It is notable that some participants continued their self-management techniques despite not experiencing any improvement. It is important for healthcare providers to know that when patients after HNC discover lymphedema, this type of swelling is often misinterpreted by the patients, which can trigger fear of cancer recurrence. While HNL research is limited, extensive studies has addressed breast-cancer related lymphedema. Comparing our findings to breast cancer studies reveals noteworthy distinctions [ 26 ]. In a recently published systematic review including qualitative studies, results highlight that breast cancer patients face a lifelong challenge with self-management and coping with having lymphedema [ 27 ]. This seems to contrast with how participants in the current study had integrated having and dealing with lymphedema in their lives and suggests that patients with breast cancer related lymphedema experience higher disease burden. Furthermore, it was proposed that for breast-cancer related lymphedema, family should have a role in management, which suggests that breast cancer survivors experience lower self-efficacy with regard to lymphedema self-management compared to the head and neck cancer patients we interviewed. There are also some similarities, which include the need for health care professionals to inform patients and teach them how to recognize lymphedema [ 28 ]. To our knowledge, there have been few qualitative studies on the experience of lymphedema in general and specifically for HNC survivors. Our study shows similar themes as an earlier [Australian] study ( n = 10), which explored patients’ and their healthcare professionals perspective [ 14 ]. Their themes align with ours: including the impact of HNL on appearance, social effects, and the need for prompt referral for lymphedema treatment. The negative impact of HNL on patients’ appearance found in our population also confirms earlier findings [ 15 , 18 ]. In our study, almost all participants were concerned with self-management, which is in line findings in a qualitative study indicating that 85% of the participants of a cohort conducted lymphedema self-care [ 13 ]. Another study investigated facilitators for self-care, which included family assistance, self-motivation, and fear of altered physical appearance. In our study almost every participant was dedicated to performing self-management. The participants have made it part of their routine, even though they not always feel the effect of it. The study of Starmer et. al., describe self-management as a challenging burden. This was related to difficulties with the technical aspects of the treatment but also logistics of integrating it into their life. This difference can be influenced by the longer follow-up time after treatment in our study [ 18 ]. There were also some other notable differences between our findings and the existing literature. One study found female participants reported more issues with body image, compared to male participants [ 14 ]. Our study did not confirm this, we found no gender specific issues. There are similarities in our study with previous studies on the topics of information provision and self-management. In a qualitative study not aimed specifically at HNL, but on living lymphedema in different areas, one of the conclusions was that it is very important to provide accurate knowledge and information regarding the management of lymphedema [ 29 ]. Timing of providing this information is also very important, as patients often feel overwhelmed by the amount of information given to them, leading to difficulty remembering it [ 29 ]. This was also voiced by some participants in our study. Therefore, repetition of information and choosing the right moment to repeat it is important for effective lymphedema management [ 16 , 17 ]. Although findings from qualitative research are not intended to be generalized, our study still provides some lessons for clinical practice. First, our results emphasise the importance of adequate and tailored counselling and information provision at different moments during cancer treatment and rehabilitation, to mitigate the risk and impact of lymphedema. Ongoing attention to the patient, before treatment, during treatment, and in the rehabilitation phase helps to effectively provide information about the risks and side effects of the cancer treatment, and to refer patients to lymphedema experts on time. This is especially important since patients themselves have difficulty separating different issues and judging their interrelatedness. A multi-disciplinary team approach can help identify the cause and effects of functional issues and provide the right professional care. For instance, mouth opening limitations could arise from lymphedema or scarring, necessitating different interventions. Secondly, this study highlights the need to pay attention to patient's self-reliance and knowledge about their lymphedema. Enhancing patient awareness of treatment side effects might aid early symptom recognition and proactive management. This approach, in combination with regular screening, diagnosis, and healthcare provider referrals, this approach empowers patients for early and effective condition management, which could lead to better outcomes. However, intervention studies examining the effectiveness of such ‘prospective surveillance programs’ for head and neck related lymphedema are needed to confirm this hypothesis. We acknowledge several limitations to this study. The researchers involved in this study may be biased by their own ideas about and prejudice towards HNL and its treatment; the first author is an expert in lymphedema. To reduce potential biases, the interviews were done by two researchers, and the analysis was performed by a team of researchers with varied professional backgrounds, including an expert in qualitative studies. Further research is recommended to properly determine the value and effects of the proposed recommendations from this study. Although we believe that attention to lymphedema from patients and health care professionals is important to enable early detection and intervention, there is only limited evidence regarding the effectiveness of prospective surveillance and early intervention for lymphedema [ 30 ] and no such study has been done in a HNC context. Furthermore, considering the diversity in experiences regarding education and treatment reported by our participants, future research could explore the experiences and perspectives of healthcare providers in the management of lymphedema, including their knowledge, attitudes, and practices related to screening, diagnosis, and treatment. This pertains to lymphedema specialists as well as to the team of medical and paramedics, which are involved in the treatment of patients who are at risk for developing HNL. Conclusions Our study shows that from the patients’ perspective, lymphedema is part of a larger palette of residual symptoms after treatment for head and neck cancer. Having lymphedema takes time getting used to, but with some adaptations, it had little influence on social aspects in our study sample. The participants found a way to apply self-management, and their therapy compliance is high. Healthcare providers should focus on providing timely and accurate information to patients at all stages of cancer treatment. Explicitly, this means that patients receive information before the cancer treatment about the risk of developing lymphedema and what this encounters. Importantly, helping them to understand lymphedema and its behaviors, so they can take action in various situations to alleviate symptoms. It is essential to increase patient knowledge to improve their self-reliance, which may lead to a better quality of life. Further research can help to optimize lymphedema treatment and self-management strategies, leading to better outcomes for cancer survivors. Declarations Funding statement : Financial support by the Verwelius Foundation. Ethical statement: The study was approved by the Netherlands Cancer Institute’s Institutional Review Board (IRB) (registration number IRBd20-208). Patients received written and verbal information about participating in the study before they signed informed consent. Conflict of interest: The authors have no conflicts of interest to declare. Author contribution statement: All authors made a substantial contribution in design, analysis, interpretation, supervision of the written manuscript and approved the version to be published. Acknowledgments: The authors would like to thank Mandy van Schuppen for her participation in the interviews, transcribing the interviews and the first steps in the analysis, and the lymphedema physiotherapist of the Netherlands Cancer Institute for their help with recruitment of the participants. The authors also would like to thank the patients who participated in this study and offered to share their experiences about head and neck lymphedema. Verwelius Foundation partially sponsored this study. The authors acknowledge Atos medical AB (Malmö, Sweden) for their research grant, which contributes to the existing infrastructure for quality of life research of the Department of Head and Neck Oncology and Surgery at The Netherlands Cancer Institute. References Deng J, Ridner SH et al (2012) Factors associated with external and internal lymphedema in patients with head-and-neck cancer. Int J Radiat Oncol Biol Phys 84: e319-28 DOI: https://doi.org/10.1016/j.ijrobp.2012.04.013 Jackson LK, Ridner SH et al (2016) Internal Lymphedema Correlates with Subjective and Objective Measures of Dysphagia in Head and Neck Cancer Patients. Journal of Palliative Medicine 19: 949-956 DOI: https://doi.org/10.1089/jpm.2016.0018 Deng J, Ridner SH et al (2012) Prevalence of secondary lymphedema in patients with head and neck cancer. J Pain Symptom Manage 43: 244-52 DOI: http://doi.org/10.1016/j.jpainsymman.2011.03.019 Deng J, Wulff-Burchfield EMMurphy BA (2019) Late Soft Tissue Complications of Head and Neck Cancer Therapy: Lymphedema and Fibrosis. J Natl Cancer Inst Monogr 2019: DOI: https://doi.org/10.1093/jncimonographs/lgz005 Jeans C, Brown B et al (2020) Comparing the prevalence, location, and severity of head and neck lymphedema after postoperative radiotherapy for oral cavity cancers and definitive chemoradiotherapy for oropharyngeal, laryngeal, and hypopharyngeal cancers. Head Neck 42: 3364-3374 DOI: http://doi.org/10.1002/hed.26394 Hidding JT, Viehoff PB et al (2016) Measurement Properties of Instruments of Measuring of Lymphedema: Systematic Review. American Physial Therapy Association 96: 1965-1981 DOI: 10.2522/ptj.20150412 Tyker A, Franco J et al (2019) Treatment for lymphedema following head and neck cancer therapy: A systematic review. Am J Otolaryngol 40: 761-769 DOI: 10.1016/j.amjoto.2019.05.024 Deng J, Ridner SH et al (2015) Assessment and measurement of head and neck lymphedema: state-of-the-science and future directions. Oral Oncol 51: 431-7 DOI: http://doi.org/10.1016/j.oraloncology.2015.01.005 Deng J, Murphy BA et al, Differences of symptoms in head and neck cancer patients with and without lymphedema. Support Care Cancer, 2016. 24 (3): p. 1305-16. Smith BG, Hutcheson KA et al (2015) Lymphedema outcomes in patients with head and neck cancer. Otolaryngol Head Neck Surg 152: 284-291 DOI: https://doi.org/10.1177/0194599814558402 Shaitelman SF, Cromwell KD et al (2015) Recent progress in the treatment and prevention of cancer-related lymphedema. CA Cancer J Clin 65: 55-81 DOI: 10.3322/caac.21253 Ridner SH, Dietrich MS et al (2016) A Prospective Study of the Lymphedema and Fibrosis Continuum in Patients with Head and Neck Cancer. Lymphat Res Biol 14: 198-205 DOI: 10.1089/lrb.2016.0001 Deng JMurphy BA, Lymphedema self-care in patients with head and neck cancer: a qualitative study. Support Care Cancer, 2016. 24 (12): p. 4961-4970. McGarvey AC, Osmotherly PG et al (2014) Lymphoedema following treatment for head and neck cancer: impact on patients, and beliefs of health professionals. Eur J Cancer Care (Engl) 23: 317-27 DOI: 10.1111/ecc.12134 Nixon JL, Pigott AE et al (2018) A mixed methods examination of distress and person-centred experience of head and neck lymphoedema. Oral Oncol 83: 18-24 DOI: 10.1016/j.oraloncology.2018.05.025 Deng J, Sinard RJMurphy B (2019) Patient experience of head and neck lymphedema therapy: a qualitative study. Support Care Cancer 27: 1811-1823 DOI: 10.1007/s00520-018-4428-2 Jeans C, Ward EC et al (2019) Patient perceptions of living with head and neck lymphoedema and the impacts to swallowing, voice and speech function. Eur J Cancer Care (Engl) 28: e12894 DOI: 10.1111/ecc.12894 Starmer HM, Cherry MG et al (2023) Head and neck lymphedema and quality of life: the patient perspective. Support Care Cancer 31: 696 DOI: https://doi.org/10.1007/s00520-023-08150-2 Chung SClandinin DJ, Narrative inquiry , in International Encyclopedia of Education (Fourth Edition) , R.J. Tierney, F. Rizvi, and K. Ercikan, Editors. 2023, Elsevier: Oxford. p. 123-130. Clandinin DJHuber J, Narrative Inquiry , in International Encyclopedia of Education (Third Edition) , P. Peterson, E. Baker, and B. McGaw, Editors. 2010, Elsevier: Oxford. p. 436-441. Bell JS, Narrative Inquiry: More Than Just Telling Stories. TESOL Quarterly, 2002. 36 (2): p. 207-213. Caine V, Estefan AClandinin DJ, A Return to Methodological Commitment: Reflections on Narrative Inquiry. Scandinavian Journal of Educational Research, 2013. 57 (6): p. 574-586. Connelly FMClandinin DJ, Stories of Experience and Narrative Inquiry. Educational Researcher, 1990. 19 (5): p. 2-14. Braun VClarke V, Using thematic analysis in psychology. Qualitative Research in Psychology, 2006. 3 (2): p. 77-101. Braun VClarke V, What can "thematic analysis" offer health and wellbeing researchers? Int J Qual Stud Health Well-being, 2014. 9 : p. 26152. Norman SA, Localio AR et al (2009) Lymphedema in breast cancer survivors: incidence, degree, time course, treatment, and symptoms. J Clin Oncol 27: 390-7 DOI: 10.1200/JCO.2008.17.9291 Fu X, Lu Q et al (2023) Experiences of breast cancer survivors with lymphedema self-management: a systematic review of qualitative studies. J Cancer Surviv 17: 619-633 DOI: 10.1007/s11764-022-01225-9 Zhao H, Wu Y et al, Breast cancer-related lymphedema patient and healthcare professional experiences in lymphedema self-management: a qualitative study. Supportive Care in Cancer, 2021. 29 (12): p. 8027-8044. Rio-Gonzalez A, Molina-Rueda F et al (2018) Living with lymphoedema-the perspective of cancer patients: a qualitative study. Support Care Cancer 26: 2005-2013 DOI: 10.1007/s00520-018-4048-x Ding J, Hasan B et al (2020) Prospective Surveillance and Risk Reduction of Cancer Treatment-Related Lymphedema: Systematic Review and Meta-Analysis. Oncology Nursing Forum 47: 161-170 DOI: 10.1188/20.ONF.E161-E170 Table 1 Table 1 is available in the Supplementary Files section. Additional Declarations No competing interests reported. Supplementary Files Table1.docx Appendix1Interviewprotocol.docx Cite Share Download PDF Status: Published Journal Publication published 06 Apr, 2026 Read the published version in BMC Cancer → Version 1 posted Editorial decision: Revision requested 18 Jun, 2024 Editor assigned by journal 18 Jun, 2024 Submission checks completed at journal 17 Jun, 2024 First submitted to journal 17 Jun, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4593670","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":315683153,"identity":"2872f530-b427-4da1-b7f1-3910c27d1fe8","order_by":0,"name":"Coralie R. Arends","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAtElEQVRIie3RPQrCQBCG4VkWYhPZdr1FYEEEhVwl2yQH8AKpJpV9cgtBkJQDC1Y5QEBr6wQrC8Gfys5JZzFv9TVP9QFI0v+mwUAEBLCaQBblh9gJJKHoPRjElPo6jO06dWf0pFoGsRS5pukKf7yciFTHIAmA03MM2bIvSlLIIrObfmBIXc0nsdMKg9rbnHjEhnirdlj4us8z8hxiquoAd1ynps7dMOLmN3k98lXGAJIkSRKjJ5f6NLiPVZXfAAAAAElFTkSuQmCC","orcid":"","institution":"Netherlands Cancer Institute","correspondingAuthor":true,"prefix":"","firstName":"Coralie","middleName":"R.","lastName":"Arends","suffix":""},{"id":315683154,"identity":"75f885f7-2b47-4058-9f63-fe841eea8322","order_by":1,"name":"Lisette van der Molen","email":"","orcid":"","institution":"Netherlands Cancer Institute","correspondingAuthor":false,"prefix":"","firstName":"Lisette","middleName":"van der","lastName":"Molen","suffix":""},{"id":315683155,"identity":"dd86793a-e2bd-4751-962a-af70093bb8c3","order_by":2,"name":"Michiel W.M. van den Brekel","email":"","orcid":"","institution":"Netherlands Cancer Institute","correspondingAuthor":false,"prefix":"","firstName":"Michiel","middleName":"W.M. van den","lastName":"Brekel","suffix":""},{"id":315683156,"identity":"2a9280c5-befa-4330-ac09-20abd754d432","order_by":3,"name":"Martijn M. Stuiver","email":"","orcid":"","institution":"Netherlands Cancer Institute","correspondingAuthor":false,"prefix":"","firstName":"Martijn","middleName":"M.","lastName":"Stuiver","suffix":""},{"id":315683157,"identity":"00a09569-74a4-4b6a-8bb2-e8e23092cd30","order_by":4,"name":"Klaske van Sluis","email":"","orcid":"","institution":"Netherlands Cancer Institute","correspondingAuthor":false,"prefix":"","firstName":"Klaske","middleName":"van","lastName":"Sluis","suffix":""}],"badges":[],"createdAt":"2024-06-17 10:51:37","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4593670/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4593670/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s12885-026-15933-3","type":"published","date":"2026-04-06T15:59:00+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":60436407,"identity":"9d1ea80a-17fa-4329-ad64-778a24d3de84","added_by":"auto","created_at":"2024-07-16 17:33:23","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":94014,"visible":true,"origin":"","legend":"\u003cp\u003eoverview themes and subthemes\u003c/p\u003e","description":"","filename":"floatimage12.png","url":"https://assets-eu.researchsquare.com/files/rs-4593670/v1/241e2e61cf9a9e772e9d7603.png"},{"id":106809861,"identity":"38f6435e-21f5-4c7c-9dff-d37f8bf49e10","added_by":"auto","created_at":"2026-04-13 16:13:14","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":663315,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4593670/v1/33064cbc-7304-4f67-8a71-d2a7419b3868.pdf"},{"id":60436409,"identity":"7dc1d363-3202-47e2-8f90-551b84aec69b","added_by":"auto","created_at":"2024-07-16 17:33:23","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":38330,"visible":true,"origin":"","legend":"","description":"","filename":"Table1.docx","url":"https://assets-eu.researchsquare.com/files/rs-4593670/v1/630d2f444f0b32d4e5ea488f.docx"},{"id":60436408,"identity":"b6dd72a0-ba22-44d4-bd62-ef10c51079b5","added_by":"auto","created_at":"2024-07-16 17:33:23","extension":"docx","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":17389,"visible":true,"origin":"","legend":"","description":"","filename":"Appendix1Interviewprotocol.docx","url":"https://assets-eu.researchsquare.com/files/rs-4593670/v1/d5855218cc484500ad3ce10a.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Lived experience of having lymphedema after treatment of head and neck cancer: A qualitative study","fulltext":[{"header":"Introduction","content":"\u003cp\u003eHead and neck lymphedema (HNL) is an accumulation of interstitial protein-rich fluid. During treatment for head and neck cancer (HNC), lymphatic vessels may be removed or damaged, causing a decrease in the function of the lymphatic system. This causes an increase of fluid in external structures, including the soft tissue of the head and neck, as well as the internal anatomical sites comprising the mucous membranes and underlying soft tissues of the upper aerodigestive tract [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eHNL affects between 35% and 75% of people treated for HNC [\u003cspan additionalcitationids=\"CR4\" citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. A distinction can be made between external and internal lymphedema. External HNL increases interstitial fluid in the skin and may experience pain; feelings of heaviness, tightness, or numbness; and reduced mobility, as well as an increased infection risk [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan additionalcitationids=\"CR7\" citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. Internal mucosal lymphedema in the larynx is characterized by hoarseness and swallowing problems, which can lead to laryngeal dysfunction. Whatever its location, prolonged lymphedema is associated with structural changes such as adipogenesis, fibrosis, and chronic inflammation [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eTreatment of HNL can be conducted in various ways. Complex decongestive therapy (CDT) is currently the best practice and most frequently used treatment, to reduce interstitial fluid and prevent progression into the severe irreversible stages of lymphedema with fibrosis [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan additionalcitationids=\"CR11\" citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. The treatment consists of an active treatment phase of lymphatic drainage, compression therapy, skin care, and therapeutic exercises; and a self-management phase that includes exercises such as self-massaging or stretching exercises for external lymphedema or swallowing and vocal cord exercises for internal lymphedema. Despite treatment, HNL is considered a chronic condition.\u003c/p\u003e \u003cp\u003eAlthough HNL is a frequent side-effect of HNC treatment, a small amount of qualitative research has been published. These studies have investigated aspects of HNL, related to self-care, the beliefs of health professionals, and the impact of HNL on patients\u0026rsquo; swallowing, voice, and speech function [\u003cspan additionalcitationids=\"CR14 CR15 CR16 CR17\" citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. These studies illustrated patients\u0026rsquo; need for learning how to manage their HNL and adapt to their new situation, as well as some of the barriers they experience when addressing those challenges. With help of narrative inquiry [\u003cspan additionalcitationids=\"CR20\" citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e], the patients\u0026rsquo; lived experience, embodied in their stories can provide perspective on the practical and psychosocial impact of having HNL. In this qualitative study we aimed to explore the lived experience of patients with HNL as a residual symptom after treatment for head and neck cancer. With our qualitative findings we wanted to identify the concerns and needs of patients developing HNL. Understanding their perspective helps to formulate recommendations for clinical practice. This information can help guide future interventions and service delivery for caregivers.\u003c/p\u003e"},{"header":"Material and methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eDesign\u003c/h2\u003e \u003cp\u003eThis qualitative study has a narrative inquiry as methodology. Narrative inquiry, also called narrative research is the study of people's experiences. Narratives or stories are the object of analysis [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e] .This method was chosen because we wanted to record the lived experiences of a group of patients with lymphedema after head and neck cancer. We performed in depth interviews. This approach allows patients to tell \u0026ldquo;their own story\u0026rdquo;, reflecting on events and the causes and effects of these events from their perspective, enabling exploration and understanding of the experience of HNL.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eResearcher characteristics\u003c/h2\u003e \u003cp\u003eSeveral researchers were involved. CA, MSc, female, works as a PhD-student and has a background in skin therapy and clinical epidemiology. She has received training in qualitative research and gained prior experience in conducting interviews. LM, PhD, female, works as a speech therapist and senior researcher. MB, PhD, MD, male, works as head and neck surgeon and is assigned as professor at a faculty of humanities. MS, PhD, male, works as a clinical epidemiologist and associate professor, and has a background in physiotherapy. KS, PhD, female, works as a speech therapist and postdoctoral fellow and has a background in health sciences. She has experience with qualitative research during her own PhD and now guides multiple students in designing, conducting, and reporting qualitative research. A bachelor student skin therapy (MvS) was during her internship involved.\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eParticipants and sampling strategies\u003c/h3\u003e\n\u003cp\u003ePossible participants were selected from patients of the Netherlands Cancer Institute (NKI). Patients were considered eligible if they met the following inclusion criteria: (a) completed curative treatment for head and neck cancer; (b) having internal or external HNL (c) no psychiatric or cognitive disorders that prevented them from participating in the study. Exclusion criteria were: (a) recurrence of disease or active cancer; (b) not capable of understanding and speaking Dutch.\u003c/p\u003e \u003cp\u003ePatients were approached to participate in this study by their practitioner. A maximum sampling strategy was used with the goal to include a heterogeneous group of participants concerning tumor characteristics, type of cancer treatment, time since treatment, age, sex, and severity of lymphedema. The final total number of participants was determined by saturation of the data.\u003c/p\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eData collection\u003c/h2\u003e \u003cp\u003eAll interviews were conducted at a location of the participant\u0026rsquo;s preference. For each interview, two interviewers were present (alternating CA, KS, and MvS), with one of the interviewers in the lead. The interviews were structured with help of an interview guide (see Appendix 1). The guide was developed by deriving topics from the existing qualitative literature and reviewed by an expert panel of healthcare professionals (CA, LM, MB, MS, and KS). Earlier qualitative studies on this subject focused mainly on the therapy participants received for HNL, findings showed high therapy compliance and identified barriers to HNL therapy [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. Impact of HNL on speech and swallowing function and the daily impact was identified by Jeans et al. 2018. The narrative inquiry approach of this study was specifically chosen to reveal a complementary view of the stories of participants throughout their diagnosis, treatment, and rehabilitation journey. The interviewers began by introducing themselves, explaining the purpose of the study, confirming eligibility, and obtaining verbal and written consent. All interviews were audio-recorded with permission (range: 44\u0026ndash;65 min) using a Roland Edirol digital recorder. Data collectors took field notes and both interviewers wrote a memo with information on key themes after each interview. The interviews took place between October 16th, 2020, and May 9th, 2022.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eData analysis\u003c/h2\u003e \u003cp\u003eThe recorded interviews were transcribed verbatim. The interview data were analyzed following the six phases described in the method of thematic analysis, by Braun and Clarke [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e]. The first step includes familiarization with the data by repeatedly reading the transcription. After each interview, the interviewers all wrote a short reflection report formulating tentative themes and ideas about the data. After thoroughly reading the interviews and reflection reports, the second phase with initial coding was started by highlighting potential codes. The team discussed these preliminary findings. Exemplary quotes were identified using all interview data and non-English quotes were translated for inclusion in this article. Initial coding was performed manually in Word, and consequently transferred to Atlas.ti version 9 (Scientific Software Development, GmbH, Berlin, Germany). This resulted in 57 codes. Codes were then reviewed, discussed, and examined again by the complete research team. We categorized the codes as a team, to identify and define research themes across our dataset. This process resulted in a set of three fully worked-out themes, with nine encompassing sub-themes (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). In formulating the themes, we chose to stay close to the data by using quotes of participants. The themes and categories were checked against the entire data.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eEthics\u003c/h2\u003e \u003cp\u003eThe study was approved by the Netherlands Cancer Institute\u0026rsquo;s Institutional Review Board (IRB) (registration number IRBd20-208). Patients received written and verbal information about participating in the study before they signed informed consent. Pseudonyms replaced the patient names to ensure the anonymity of patient data but to increase the readability.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eTen participants were included in the study, interviews were conducted at participants\u0026rsquo; private homes (\u003cem\u003en\u003c/em\u003e\u0026thinsp;=\u0026thinsp;5) or in the institution (\u003cem\u003en\u003c/em\u003e\u0026thinsp;=\u0026thinsp;5). In one case, the daughter of the participant was also present during the interview. Demographic information and medical details are summarized in Table \u003cspan\u003e1\u003c/span\u003e.\u003c/p\u003e\n\u003cdiv\u003eThree themes emerged from the interviews: \u0026ldquo;One of many issues\u0026rdquo;, \u0026ldquo;Having lymphedema \u0026amp; dealing with it\u0026rdquo;, and \u0026ldquo;Knowing \u0026amp; controlling my lymphedema\u0026rdquo; (Fig. \u003cspan\u003e1\u003c/span\u003e). The following section describes each theme and its subthemes.\u003c/div\u003e\n\u003cp\u003e\u003cstrong\u003eOne of many issues.\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAs all participants in the study had undergone intensive oncological treatment for HNC, with its various impacts and side effects, they could not isolate the lymphedema as an independent issue. Aside from lymphedema, participants experienced restricted mouth opening, reduced saliva, voice changes, movement restriction, and swallowing problems.\u003c/p\u003e\n\u003cdiv\u003e\n \u003cp\u003eIs this due to my lymphedema?\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eSome of the participants had a conscious awareness of the possible interaction between the side effects, including Rose. After treatment for HNC, her voice changed, and she developed tinnitus. She wondered if these changes are related to the lymphedema:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Sometimes I think when things are a bit more tense: \u0026lsquo;Does that also affect my voice more?\u0026rsquo; I wonder about that. And I have a bit of tinnitus. I\u0026apos;ve had it since [the lymphedema] started. [\u0026hellip;] Sometimes it seems a little worse. And then I think: \u0026lsquo;Does that have to do with the fact that I\u0026rsquo;m a bit more swollen?\u0026rsquo; But I can\u0026apos;t judge that very well.\u0026rdquo; (Rose)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eRebecca has lymphedema but doesn\u0026apos;t suffer much from it. She has not been treated for lymphedema. When the subject of lymphedema was discussed, her main complaint came up, which is the problem with mouth opening. She explained how she handles this when she goes out to eat:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Then I ordered pancakes. That\u0026apos;s easy, then [to eat]. I mean a sandwich or something like that, I have to cut it in very small bits.\u0026rdquo;(Rebecca)\u003c/em\u003e\u003c/p\u003e\n\u003cdiv\u003e\n \u003cp\u003eI have very little trouble with it\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eNearly all participants lived without disruption of daily functioning due to their lymphedema. They experienced relatively little inconvenience, which was usually quite tolerable in daily life. For James, it took some time to accept his lymphedema. He wore a scarf for a while to hide the swelling. By the time of the interview, he experienced no shame and stated that he accepted the fluctuations of the lymphedema:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I have very little trouble with it. [\u0026hellip;], one time, it has more volume than the other time. But not that I think: oh [swears], I\u0026apos;m really embarrassed now. Not at all. I really have zero problems with it.\u0026rdquo; (James)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eOther participants indicated they did not want to pay attention to their lymphedema and sometimes preferred not to look at it. Andrew stated that he accepted his lymphedema but still avoids looking in the mirror because he doesn\u0026rsquo;t like seeing himself as much anyway, and could therefore easily deny his lymphedema:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;Well, I kind of deny it. I\u0026apos;m already saying, yes, I prefer not to look in the mirror. I\u0026apos;m not someone who looks at my reflection in a store window or anything.\u0026rdquo; (Andrew)\u003c/em\u003e\u003c/p\u003e\n\u003cdiv id=\"Sec10\"\u003e\n \u003ch2\u003eHaving lymphedema \u0026amp; dealing with it\u003c/h2\u003e\n \u003cp\u003eThe second theme covers how the participants described and experienced their lymphedema and how it affected their social life.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003eHere is my chubby cheek\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eThis subtheme covers how participants described their lymphedema and give nicknames to their lymphedema. The interviews showed a clear distinction between the more substantial, observational aspects of having lymphedema and the emotional appreciation of lymphedema related to patients\u0026rsquo; self-image. Many participants described their lymphedema in terms of how it feels: as hard, stiff, tight, or tense; or as lumpy, full, a thick clot or a ball. Yet, over time, the lymphedema also has become integrated into their self-image and identity. Some also had a nickname for the lymphedema, such as a chubby cheek, hamster cheek, or a mayor\u0026rsquo;s chin. Rose spoke somewhat affectionately of her lymphedema:\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Yes, because it\u0026rsquo;s really here [she grabs her left cheek]. And this is just nice and smooth [compares this with the softer right side]. And here it\u0026rsquo;s a little bit more. It\u0026rsquo;s kind of like hamster cheeks. [\u0026hellip;] It\u0026rsquo;s kind of lovable.\u0026rdquo; (Rose)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003eAlice, on the other hand, described her appearance as unpleasant. When the interviewer asked her how she felt about her appearance, she answered:\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Horrible. To put it crudely: like having a dog\u0026apos;s head. Like those bulldogs, those square ones, well that\u0026apos;s how I feel as well.\u0026rdquo; (Alice)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003eAlthough Alice is unhappy with her appearance, she indicates that the altered appearance has little impact on her daily life. She states that she does not feel ashamed about it, and she can talk about it with humor as well.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003eIt differs over time\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eThe subtheme \u0026ldquo;It differs over time\u0026rdquo; covers to what extent the participants experience discomfort in daily life from their lymphedema and how lymphedema differs over time. This can be during lymphedema treatment and recovery time but it can also relate to changes during the day. It focuses on the changed appearance and external care. Participants experienced changes in physical sensations of the HNL and how this differs over time, like Rose:\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;It just feels a little tense. [\u0026hellip;] It is like as if it\u0026apos;s really hot, like when you have swollen feet or something. That feeling. [The swelling] gives more pressure on the skin for a while.\u0026rdquo; (Rose)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003eSeveral participants experienced changes in the degree of lymphedema within and between days. Some participants reported improvement throughout the day resulting in less tightness of the skin or a decrease in volume. For some participants, it was clear what activities usually worsen their lymphedema. They explained how they avoid these activities, for example, by not sleeping fully reclined in the bed, not lifting heavy items, or not lifting things above the head. Lucy experienced this in the following way:\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Yes [the lymphedema changes], also overnight. [...] No day feels the same. [...] Even through the day [the lymphedema differs]. [For example], I wake up in the morning, and I think: \u0026lsquo;Well, now I can move my neck easily.\u0026rsquo; And then, without a particular reason, I notice that it becomes more difficult. Or I notice that it gets thicker.\u0026rdquo; (Lucy)\u003c/em\u003e\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003eI don\u0026rsquo;t let it bother me in social contact\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eThe subtheme \u0026ldquo;I don\u0026rsquo;t let it bother me in social contact\u0026rdquo; focuses on the social interactions the participants have with family, friends, and colleagues and the role of lymphedema within this social context. Almost all participants experienced no problems in maintaining social relationships. They reported that they have accepted their changed appearance, and most people close to them know that they have had an intensive oncological treatment for HNC.\u003c/p\u003e\n \u003cp\u003eJames had trouble facing colleagues and friends because of his scar and lymphedema, when he first started working and doing social activities again. He wore a scarf for a while to hide the visible effects of the cancer treatment. He referred to himself as \u0026ldquo;the scarf man\u0026rdquo;. To the interviewers, he described the process he went through as follows:\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;\u003cem\u003eWell, then you walk into your office wearing a scarf. Which makes me think: [curses] \u0026lsquo;Here I come, and everyone will turn around and look at me, and everyone will start asking me about it.\u0026rsquo; [\u0026hellip;] Yes, that is, of course, a process you have to go through\u003c/em\u003e.\u0026rdquo; (James)\u003c/p\u003e\n \u003cp\u003eAfter a while, he felt more acceptance towards these side effects. He stopped wearing his scarf and no longer felt the need to cover up his changed appearance.\u003c/p\u003e\n \u003cp\u003eSome participants were still working, and most of them experienced little barriers with having lymphedema during their work. Walter reported that he feels so comfortable at work that he applies self-management for his lymphedema in the presence of his colleagues during the break. He said that his colleagues are no longer surprised by this.\u003c/p\u003e\n \u003cp\u003eParticipants also shared how lymphedema became a topic of conversation or interfered with interactions with their partner or family. For example, James felt the need to discuss his altered appearance: having a scar and lymphedema, when talking to his children about his cancer, as he was concerned about their response to it. During their conversation, his children showed a lot of sympathy, but five minutes later, they were playing outside again, which showed him that his children could let go of this information and go on with their life as usual, which was comforting for him. For Rose, a part of her neck feels uncomfortable when touched, which interferes with intimacy:\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;\u003cem\u003eMy husband has a mustache, and if he kisses me on my neck, then here [points to the right side of the neck], it is fine, but here [points to the left side of the neck], it is a bit painful now and then. When it is a bit more swollen, I say: \u0026lsquo;Do it on that side\u0026rsquo; [pointing to the right side of the neck where she would like to receive the kiss].\u0026rdquo; (Rose)\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec11\"\u003e\n \u003ch2\u003eKnowing \u0026amp; controlling my lymphedema\u003c/h2\u003e\n \u003cp\u003eThe third theme, \u0026ldquo;Knowing and controlling my lymphedema\u0026rdquo; covers the entire period from recognizing the onset of lymphedema to performing self-management to control the swelling. Furthermore, it refers to the information the participants received prior to treatment about the risk of developing lymphedema and the effect of having this.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003eI was afraid that swelling meant bad news\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eThis subtheme covers participants\u0026rsquo; recall of how they experienced the moment of noticing swelling in the head and neck area. For most participants, lymphedema developed soon after treatment, and they discovered the increase in interstitial fluid on their own. John explained when the onset of lymphedema occurred:\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;After the radiation. Say two months after that [I noticed the lymphedema]. Because in the first phase after that treatment, you don\u0026apos;t really notice it. Because it is red, and it hurts, and you don\u0026apos;t really pay attention to it.\u0026rdquo; (John)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003eEthan noticed the development of lymphedema shortly after his surgery:\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Well, yes, the fluid was actually there right after the surgery. I thought I had a puffy head.\u0026rdquo; (Ethan)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003eAt the onset of the lymphedema, almost all participants mentioned their anxiety that swelling meant that their cancer had returned. For them, this was a reason to express their cancer worry in consultation with their head and neck surgeon, so they go to the hospital for a check-up. Grace also mentioned that she experienced changes in how her body felt and the cancer worry:\u003c/p\u003e\n \u003cp\u003e\u0026ldquo;A few weeks back, [the lymphedema] \u003cem\u003egot a lot harder all of a sudden. It gave me a stingy feeling like they were using a really thin needle. It was like nerve pain or something. And then I got scared. I thought: \u0026lsquo;Oh no, I hope it won\u0026rsquo;t be wrong.\u0026rsquo; But I already had an appointment for an MRI scan, [...], and the results were good.\u0026rdquo; (Grace)\u003c/em\u003e\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003eI understand things when I experience them\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eThe subtheme \u0026ldquo;I understand things when I experience them\u0026rdquo; concerns counseling and whether participants have received information about the risk of developing lymphedema after treatment. If they had received counseling, they shared how they experienced the counseling and if they missed anything. Some participants mentioned that they did not receive information about the risk of developing lymphedema after treatment. Some participants did not recall whether they had received counseling, but others did. James remembered that the healthcare provider informed him about the fluid that could remain after treatment:\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;They indeed indicated that some fluid accumulation could eventually remain. Well, I could imagine that you can\u0026apos;t move your arm anymore [after treatment], but with an accumulation of fluid [I could not imagine what the impact would be].\u0026rdquo; (James)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003eSome of the participants explicitly said that they did not mind that they did not receive information about the risk of developing lymphedema. Lucy explained:\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Sometimes I think and feel, in hindsight, that I had too little information about that. But at the same time, I think: \u0026lsquo;If I would have had that information, then what?\u0026rsquo; [...] Because all kinds of things were written down, I could read it, I could ask questions, so that\u0026apos;s not the problem. [\u0026hellip;] I can get a lot of information in advance, but I only notice it when I have [the lymphedema], and I understand it when I\u0026apos;m in the middle of it. So, I can\u0026apos;t say I missed information beforehand.\u0026rdquo; (Lucy)\u003c/em\u003e\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003eI was glad to receive specific and professional attention\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eAlmost all participants received treatment for lymphedema. They were treated by a lymphedema physical therapists at the NKI or in primary health care. They experienced therapy as pleasant and effective. Lucy experienced physical \u0026lsquo;space\u0026rsquo; after receiving treatment from the physical therapist:\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026quot;Although I could not actually see [any difference]. I got the feeling that there was some physical space. That there was a little less pressure on the neck. That was a pleasure, it already felt enjoyable. So that pressure decreased.\u0026quot; (Lucy)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003eOnly a few participants wore compression garments. Some used a sling around the head, but none of them used a real fitted mask. Grace was fitted with a mask three times, but these masks were very uncomfortable for her. To her senses, her jaw was pushed back, causing problems with talking and eating. Because of this, she hardly ever wore the masks.\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I got a mask. I\u0026apos;ve had three. It was just stitched the wrong way. It was supposed to stretch like this [pointing that the strap had to go under her chin]. But it went like this [shows that the pressure went over her chin]. That was very unpleasant.\u0026rdquo; (Grace)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003eThe frequency and duration of lymphedema treatment varied among participants from only a few sessions to a longer period of up to half a year with weekly sessions. James shared his experiences with the lymphedema treatment and the use of lymph-taping to improve lymphatic drainage:\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;At the beginning [the lymphedema treatment was] once a week, and then we did it every other week. [The physical therapist] massaged it and stroked [the lymphedema] away.\u0026rdquo;(James)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003eAs he described his routine in using the tape, he said that he did not use it every day.\u003c/p\u003e\n \u003cdiv\u003e\n \u003cp\u003eIf I perform self-massage, the pressure on my neck releases\u003c/p\u003e\n \u003c/div\u003e\n \u003cp\u003eSelf-management was performed by most participants who received lymphedema therapy, and they referred to this as an important component of dealing with their lymphedema. However, the dedication, frequency, and the way of performance varied among participants. John is very consistent in performing his self-management. He suffers from both internal and external lymphedema. Because of this, in addition to massage, he performs various exercises, following the advice of the speech therapists. He also experiences real relief when he applies self-massage and therefore does so daily:\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I am very busy with it. The swelling puts pressure against the bottom of my skull [...]. I sit like this [shows how he massages his cheeks]\u0026hellip;. At a certain point, it is as if a door opens, [..] that pressure is gone [\u0026hellip;.] it is such a good feeling. Quite honestly, a true relief because that pressure is gone. And I am getting better at doing that. My physical therapist is very satisfied.\u0026rdquo; (John)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003eWalter is self-disciplined in performing his self-management. Whether he is at home or at work during his lunch break, he always applies his self-massage. Despite experiencing results, he does it primarily because performing what he was taught has become a routine. He described how he routinely performs self-management:\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Yes, occasionally, I just massage. In the morning and then occasionally in the afternoon and in the evening. I do it every day for about five minutes. It is enough, they say [physical therapist], and then push it all the way down so it drains. It doesn\u0026apos;t really give relief, but I do it for my own good.\u0026rdquo; (Walter)\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003eJames also applied self-massage and described how he experienced his lymphedema. He does not use a specific schedule for self-massage but tries to have some influence on the lymphedema by massaging. In the interview, he states:\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;So the only thing I still have occasionally is that I\u0026apos;ll be sitting in front of the television, and I\u0026apos;ll be like this [puts a hand under the chin to perform self-massage]. It\u0026apos;s kind of hard below my chin. That\u0026apos;s those proteins, I think. And when I massage it [...], I try to stroke [...] away the moisture. But that\u0026apos;s really the only moment when I\u0026apos;m working on it.\u0026rdquo; (James)\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis qualitative study aimed to explore the lived experience of patients with HNL as a residual symptom after HNC treatment. The study focused on patients from one hospital and results should be considered in the context of the Dutch healthcare system. Three themes emerged from interviews: \u0026ldquo;One of many issues\u0026rdquo;, \u0026ldquo;Having lymphedema \u0026amp; dealing with it\u0026rdquo;, and \u0026ldquo;Knowing \u0026amp; controlling my lymphedema\u0026rdquo;. Participants experience various issues, including restricted mouth opening, reduced saliva, voice changes, movement restriction, and swallowing problems. This makes it difficult for the participants to isolate lymphedema as an independent issue. The second theme focuses on how participants describe and experience their lymphedema and how it affects their social life. The people we interviewed faced few social hurdles and had managed to get back on track in society. Some of the participants needed some time to adjust to their new situation. They made adjustments in, for example, work intensity and heavy lifting. The third theme was about recognizing and controlling lymphedema, including information received prior to treatment about the risk of developing lymphedema, and the effect of having it. Participants describe the moment of noticing the HNL, and how this made them insecure or even fearful. They also talked about whether they had received counseling or information about the risk of developing lymphedema. Almost all participants received treatment for lymphedema, and they performed self-management, but the dedication, frequency, and way of performance of self-management varied among participants.\u003c/p\u003e \u003cp\u003eParticipants who received treatment for lymphedema experienced this as very pleasant and effective, since it resulted in a relief of their symptoms. There was a high compliance towards self-management techniques, the participants performed this in various ways. It is notable that some participants continued their self-management techniques despite not experiencing any improvement. It is important for healthcare providers to know that when patients after HNC discover lymphedema, this type of swelling is often misinterpreted by the patients, which can trigger fear of cancer recurrence.\u003c/p\u003e \u003cp\u003eWhile HNL research is limited, extensive studies has addressed breast-cancer related lymphedema. Comparing our findings to breast cancer studies reveals noteworthy distinctions [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e]. In a recently published systematic review including qualitative studies, results highlight that breast cancer patients face a lifelong challenge with self-management and coping with having lymphedema [\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e]. This seems to contrast with how participants in the current study had integrated having and dealing with lymphedema in their lives and suggests that patients with breast cancer related lymphedema experience higher disease burden. Furthermore, it was proposed that for breast-cancer related lymphedema, family should have a role in management, which suggests that breast cancer survivors experience lower self-efficacy with regard to lymphedema self-management compared to the head and neck cancer patients we interviewed. There are also some similarities, which include the need for health care professionals to inform patients and teach them how to recognize lymphedema [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eTo our knowledge, there have been few qualitative studies on the experience of lymphedema in general and specifically for HNC survivors. Our study shows similar themes as an earlier [Australian] study (\u003cem\u003en\u003c/em\u003e\u0026thinsp;=\u0026thinsp;10), which explored patients\u0026rsquo; and their healthcare professionals perspective [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. Their themes align with ours: including the impact of HNL on appearance, social effects, and the need for prompt referral for lymphedema treatment. The negative impact of HNL on patients\u0026rsquo; appearance found in our population also confirms earlier findings [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. In our study, almost all participants were concerned with self-management, which is in line findings in a qualitative study indicating that 85% of the participants of a cohort conducted lymphedema self-care [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. Another study investigated facilitators for self-care, which included family assistance, self-motivation, and fear of altered physical appearance. In our study almost every participant was dedicated to performing self-management. The participants have made it part of their routine, even though they not always feel the effect of it. The study of Starmer et. al., describe self-management as a challenging burden. This was related to difficulties with the technical aspects of the treatment but also logistics of integrating it into their life. This difference can be influenced by the longer follow-up time after treatment in our study [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThere were also some other notable differences between our findings and the existing literature. One study found female participants reported more issues with body image, compared to male participants [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. Our study did not confirm this, we found no gender specific issues. There are similarities in our study with previous studies on the topics of information provision and self-management. In a qualitative study not aimed specifically at HNL, but on living lymphedema in different areas, one of the conclusions was that it is very important to provide accurate knowledge and information regarding the management of lymphedema [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]. Timing of providing this information is also very important, as patients often feel overwhelmed by the amount of information given to them, leading to difficulty remembering it [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]. This was also voiced by some participants in our study. Therefore, repetition of information and choosing the right moment to repeat it is important for effective lymphedema management [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. Although findings from qualitative research are not intended to be generalized, our study still provides some lessons for clinical practice. First, our results emphasise the importance of adequate and tailored counselling and information provision at different moments during cancer treatment and rehabilitation, to mitigate the risk and impact of lymphedema. Ongoing attention to the patient, before treatment, during treatment, and in the rehabilitation phase helps to effectively provide information about the risks and side effects of the cancer treatment, and to refer patients to lymphedema experts on time. This is especially important since patients themselves have difficulty separating different issues and judging their interrelatedness. A multi-disciplinary team approach can help identify the cause and effects of functional issues and provide the right professional care. For instance, mouth opening limitations could arise from lymphedema or scarring, necessitating different interventions. Secondly, this study highlights the need to pay attention to patient's self-reliance and knowledge about their lymphedema. Enhancing patient awareness of treatment side effects might aid early symptom recognition and proactive management. This approach, in combination with regular screening, diagnosis, and healthcare provider referrals, this approach empowers patients for early and effective condition management, which could lead to better outcomes. However, intervention studies examining the effectiveness of such \u0026lsquo;prospective surveillance programs\u0026rsquo; for head and neck related lymphedema are needed to confirm this hypothesis.\u003c/p\u003e \u003cp\u003eWe acknowledge several limitations to this study. The researchers involved in this study may be biased by their own ideas about and prejudice towards HNL and its treatment; the first author is an expert in lymphedema. To reduce potential biases, the interviews were done by two researchers, and the analysis was performed by a team of researchers with varied professional backgrounds, including an expert in qualitative studies.\u003c/p\u003e \u003cp\u003eFurther research is recommended to properly determine the value and effects of the proposed recommendations from this study. Although we believe that attention to lymphedema from patients and health care professionals is important to enable early detection and intervention, there is only limited evidence regarding the effectiveness of prospective surveillance and early intervention for lymphedema [\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e] and no such study has been done in a HNC context. Furthermore, considering the diversity in experiences regarding education and treatment reported by our participants, future research could explore the experiences and perspectives of healthcare providers in the management of lymphedema, including their knowledge, attitudes, and practices related to screening, diagnosis, and treatment. This pertains to lymphedema specialists as well as to the team of medical and paramedics, which are involved in the treatment of patients who are at risk for developing HNL.\u003c/p\u003e"},{"header":"Conclusions","content":"\u003cp\u003eOur study shows that from the patients\u0026rsquo; perspective, lymphedema is part of a larger palette of residual symptoms after treatment for head and neck cancer. Having lymphedema takes time getting used to, but with some adaptations, it had little influence on social aspects in our study sample. The participants found a way to apply self-management, and their therapy compliance is high. Healthcare providers should focus on providing timely and accurate information to patients at all stages of cancer treatment. Explicitly, this means that patients receive information before the cancer treatment about the risk of developing lymphedema and what this encounters. Importantly, helping them to understand lymphedema and its behaviors, so they can take action in various situations to alleviate symptoms. It is essential to increase patient knowledge to improve their self-reliance, which may lead to a better quality of life. Further research can help to optimize lymphedema treatment and self-management strategies, leading to better outcomes for cancer survivors.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eFunding statement\u003c/strong\u003e: Financial support by the Verwelius Foundation.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthical statement:\u0026nbsp;\u003c/strong\u003eThe study was approved by the Netherlands Cancer Institute\u0026rsquo;s Institutional Review Board (IRB) (registration number IRBd20-208). Patients received written and verbal information about participating in the study before they signed informed consent.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflict of interest:\u0026nbsp;\u003c/strong\u003eThe authors have no conflicts of interest to declare.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor contribution statement:\u0026nbsp;\u003c/strong\u003eAll authors made a substantial contribution in design, analysis, interpretation, supervision of the written manuscript and approved the version to be published.\u003cstrong\u003e\u0026nbsp;\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgments:\u0026nbsp;\u003c/strong\u003eThe authors would like to thank Mandy van Schuppen for her participation in the interviews, transcribing the interviews and the first steps in the analysis, and the lymphedema physiotherapist of the Netherlands Cancer Institute for their help with recruitment of the participants. The authors also would like to thank the patients who participated in this study and offered to share their experiences about head and neck lymphedema. Verwelius Foundation partially sponsored this study. The authors acknowledge Atos medical AB (Malm\u0026ouml;, Sweden) for their research grant, which contributes to the existing infrastructure for quality of life research of the Department of Head and Neck Oncology and Surgery at The Netherlands Cancer Institute.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eDeng J, Ridner SH et al (2012) Factors associated with external and internal lymphedema in patients with head-and-neck cancer. Int J Radiat Oncol Biol Phys 84: e319-28 DOI: https://doi.org/10.1016/j.ijrobp.2012.04.013\u003c/li\u003e\n\u003cli\u003eJackson LK, Ridner SH et al (2016) Internal Lymphedema Correlates with Subjective and Objective Measures of Dysphagia in Head and Neck Cancer Patients. 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Oral Oncol 51: 431-7 DOI: http://doi.org/10.1016/j.oraloncology.2015.01.005\u003c/li\u003e\n\u003cli\u003eDeng J, Murphy BA et al, \u003cem\u003eDifferences of symptoms in head and neck cancer patients with and without lymphedema.\u003c/em\u003e Support Care Cancer, 2016. \u003cstrong\u003e24\u003c/strong\u003e(3): p. 1305-16.\u003c/li\u003e\n\u003cli\u003eSmith BG, Hutcheson KA et al (2015) Lymphedema outcomes in patients with head and neck cancer. Otolaryngol Head Neck Surg 152: 284-291 DOI: https://doi.org/10.1177/0194599814558402\u003c/li\u003e\n\u003cli\u003eShaitelman SF, Cromwell KD et al (2015) Recent progress in the treatment and prevention of cancer-related lymphedema. CA Cancer J Clin 65: 55-81 DOI: 10.3322/caac.21253\u003c/li\u003e\n\u003cli\u003eRidner SH, Dietrich MS et al (2016) A Prospective Study of the Lymphedema and Fibrosis Continuum in Patients with Head and Neck Cancer. Lymphat Res Biol 14: 198-205 DOI: 10.1089/lrb.2016.0001\u003c/li\u003e\n\u003cli\u003eDeng JMurphy BA, \u003cem\u003eLymphedema self-care in patients with head and neck cancer: a qualitative study.\u003c/em\u003e Support Care Cancer, 2016. \u003cstrong\u003e24\u003c/strong\u003e(12): p. 4961-4970.\u003c/li\u003e\n\u003cli\u003eMcGarvey AC, Osmotherly PG et al (2014) Lymphoedema following treatment for head and neck cancer: impact on patients, and beliefs of health professionals. Eur J Cancer Care (Engl) 23: 317-27 DOI: 10.1111/ecc.12134\u003c/li\u003e\n\u003cli\u003eNixon JL, Pigott AE et al (2018) A mixed methods examination of distress and person-centred experience of head and neck lymphoedema. Oral Oncol 83: 18-24 DOI: 10.1016/j.oraloncology.2018.05.025\u003c/li\u003e\n\u003cli\u003eDeng J, Sinard RJMurphy B (2019) Patient experience of head and neck lymphedema therapy: a qualitative study. Support Care Cancer 27: 1811-1823 DOI: 10.1007/s00520-018-4428-2\u003c/li\u003e\n\u003cli\u003eJeans C, Ward EC et al (2019) Patient perceptions of living with head and neck lymphoedema and the impacts to swallowing, voice and speech function. Eur J Cancer Care (Engl) 28: e12894 DOI: 10.1111/ecc.12894\u003c/li\u003e\n\u003cli\u003eStarmer HM, Cherry MG et al (2023) Head and neck lymphedema and quality of life: the patient perspective. Support Care Cancer 31: 696 DOI: https://doi.org/10.1007/s00520-023-08150-2\u003c/li\u003e\n\u003cli\u003eChung SClandinin DJ, \u003cem\u003eNarrative inquiry\u003c/em\u003e, in \u003cem\u003eInternational Encyclopedia of Education (Fourth Edition)\u003c/em\u003e, R.J. Tierney, F. Rizvi, and K. Ercikan, Editors. 2023, Elsevier: Oxford. p. 123-130.\u003c/li\u003e\n\u003cli\u003eClandinin DJHuber J, \u003cem\u003eNarrative Inquiry\u003c/em\u003e, in \u003cem\u003eInternational Encyclopedia of Education (Third Edition)\u003c/em\u003e, P. Peterson, E. Baker, and B. McGaw, Editors. 2010, Elsevier: Oxford. p. 436-441.\u003c/li\u003e\n\u003cli\u003eBell JS, \u003cem\u003eNarrative Inquiry: More Than Just Telling Stories.\u003c/em\u003e TESOL Quarterly, 2002. \u003cstrong\u003e36\u003c/strong\u003e(2): p. 207-213.\u003c/li\u003e\n\u003cli\u003eCaine V, Estefan AClandinin DJ, \u003cem\u003eA Return to Methodological Commitment: Reflections on Narrative Inquiry.\u003c/em\u003e Scandinavian Journal of Educational Research, 2013. \u003cstrong\u003e57\u003c/strong\u003e(6): p. 574-586.\u003c/li\u003e\n\u003cli\u003eConnelly FMClandinin DJ, \u003cem\u003eStories of Experience and Narrative Inquiry.\u003c/em\u003e Educational Researcher, 1990. \u003cstrong\u003e19\u003c/strong\u003e(5): p. 2-14.\u003c/li\u003e\n\u003cli\u003eBraun VClarke V, \u003cem\u003eUsing thematic analysis in psychology.\u003c/em\u003e Qualitative Research in Psychology, 2006. \u003cstrong\u003e3\u003c/strong\u003e(2): p. 77-101.\u003c/li\u003e\n\u003cli\u003eBraun VClarke V, \u003cem\u003eWhat can \u0026quot;thematic analysis\u0026quot; offer health and wellbeing researchers?\u003c/em\u003e Int J Qual Stud Health Well-being, 2014. \u003cstrong\u003e9\u003c/strong\u003e: p. 26152.\u003c/li\u003e\n\u003cli\u003eNorman SA, Localio AR et al (2009) Lymphedema in breast cancer survivors: incidence, degree, time course, treatment, and symptoms. J Clin Oncol 27: 390-7 DOI: 10.1200/JCO.2008.17.9291\u003c/li\u003e\n\u003cli\u003eFu X, Lu Q et al (2023) Experiences of breast cancer survivors with lymphedema self-management: a systematic review of qualitative studies. J Cancer Surviv 17: 619-633 DOI: 10.1007/s11764-022-01225-9\u003c/li\u003e\n\u003cli\u003eZhao H, Wu Y et al, \u003cem\u003eBreast cancer-related lymphedema patient and healthcare professional experiences in lymphedema self-management: a qualitative study.\u003c/em\u003e Supportive Care in Cancer, 2021. \u003cstrong\u003e29\u003c/strong\u003e(12): p. 8027-8044.\u003c/li\u003e\n\u003cli\u003eRio-Gonzalez A, Molina-Rueda F et al (2018) Living with lymphoedema-the perspective of cancer patients: a qualitative study. Support Care Cancer 26: 2005-2013 DOI: 10.1007/s00520-018-4048-x\u003c/li\u003e\n\u003cli\u003eDing J, Hasan B et al (2020) Prospective Surveillance and Risk Reduction of Cancer Treatment-Related Lymphedema: Systematic Review and Meta-Analysis. Oncology Nursing Forum 47: 161-170 DOI: 10.1188/20.ONF.E161-E170\u003c/li\u003e\n\u003c/ol\u003e"},{"header":"Table 1","content":"\u003cp\u003eTable 1 is available in the Supplementary Files section.\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-cancer","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bcan","sideBox":"Learn more about [BMC Cancer](http://bmccancer.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bcan/default.aspx","title":"BMC Cancer","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Head and neck lymphedema, head and neck cancer, lived experience, qualitative study","lastPublishedDoi":"10.21203/rs.3.rs-4593670/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4593670/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eHead and neck lymphedema (HNL) is an accumulation of interstitial protein-rich fluid. During treatment for head and neck cancer (HNC), lymphatic vessels may be removed or damaged, causing a decrease in the function of the lymphatic system among 75% of the patients. To explore the lived experience of patients with head and neck lymphedema as a residual symptom after head and neck cancer treatment.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eWe performed a qualitative study using a narrative approach. Participants were eligible when they had lymphedema after completed curative HNC treatment. The interviews were analyzed using thematic analysis according to Braun et al. A maximum sampling strategy was used to include a diverse group of participants.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eTen participants, five men and five women, were interviewed. Three main themes emerged. \u0026ldquo;One of many issues\u0026rdquo; highlighted the difficulty participants faced in distinguishing lymphedema from other symptoms they experienced. The second theme \u0026ldquo;Having lymphedema \u0026amp; dealing with it,\u0026rdquo; covers how the participants described their lymphedema and its impact on their social life. The third theme \u0026ldquo;Knowing and controlling my lymphedema,\u0026rdquo; covered the participants\u0026rsquo; ability to recognize and manage their lymphedema, including self-management.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eOur study shows that lymphedema is part of a larger palette of residual symptoms after HNC treatment. While it took some time to adjust to having lymphedema, it has minimal impact on social aspects in this sample. Participants showed high therapy compliance and used self-management techniques effectively. Our findings also emphasize the need for healthcare professionals to recognize the interdependence between lymphedema and other residual symptoms and address them in an integrated manner.\u003c/p\u003e","manuscriptTitle":"Lived experience of having lymphedema after treatment of head and neck cancer: A qualitative study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-07-16 17:33:18","doi":"10.21203/rs.3.rs-4593670/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-06-18T04:12:58+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-06-18T04:03:33+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-06-18T03:59:07+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Cancer","date":"2024-06-17T10:50:19+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-cancer","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bcan","sideBox":"Learn more about [BMC Cancer](http://bmccancer.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bcan/default.aspx","title":"BMC Cancer","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"26497212-e221-41ce-b1c8-07ac9d033fe1","owner":[],"postedDate":"July 16th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2026-04-13T16:09:30+00:00","versionOfRecord":{"articleIdentity":"rs-4593670","link":"https://doi.org/10.1186/s12885-026-15933-3","journal":{"identity":"bmc-cancer","isVorOnly":false,"title":"BMC Cancer"},"publishedOn":"2026-04-06 15:59:00","publishedOnDateReadable":"April 6th, 2026"},"versionCreatedAt":"2024-07-16 17:33:18","video":"","vorDoi":"10.1186/s12885-026-15933-3","vorDoiUrl":"https://doi.org/10.1186/s12885-026-15933-3","workflowStages":[]},"version":"v1","identity":"rs-4593670","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4593670","identity":"rs-4593670","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}