The lymphedema patient experience within the healthcare system: a cross-sectional epidemiologic assessment.

Lymphedema is a progressive lymphatic disease that potentiates physical and psychosocial distress. Despite its impact, patients reportedly encounter lymphatic ignorance throughout the healthcare system. This cross-sectional study aims to summarize clinical characteristics and interactions of lymphedema patients within the healthcare system. Two lymphedema patient cohorts were included: The Global Registry Analysis Cohort included lymphedema patients who contributed to an international digital lymphatic registry and the Interactions Cohort included patients who initiated a questionnaire about interactions with the medical system. The global registry was used to obtain demographic and clinical characteristics from affiliated lymphedema patients. A 23-item online questionnaire on healthcare experiences and satisfaction with lymphatic healthcare was then distributed to the Interactions Cohort. Complete responses were obtained from 2474 participants. Participants were a mean age of 57.5 ± 16.1 years and 51.4% had a cancer history. Participants reported substantial delays in diagnosis and treatment. Cancer-related and non-cancer-related lymphedema patients reported similar levels of perceived physician disinterest in their lymphedema; however, non-cancer-related lymphedema patients reported more care dissatisfaction. Ultimately, patients continue to face delays in lymphedema diagnosis and treatment. We developed an evidence-based model highlighting areas of reform needed to improve lymphatic education and healthcare.

A HGF Mutation in the Familial Case of Primary Lymphedema: A Report.

Lymphedema is a disorder that leads to excessive swelling due to lymphatic insufficiency, resulting in the accumulation of protein-rich interstitial fluid. Primary lymphedema predominantly impacts the lower extremities and is frequently linked to hereditary factors. This condition is known to be associated with variants in several genes, such as FOXC2, FLT4, and SOX18. However, many cases remain unexplained, suggesting undiscovered gene associations. This study describes a novel mutation in the hepatocyte growth factor (HGF) gene, a previously hypothesized candidate for lymphedema pathogenesis. This mutation was identified in affected members of a multigenerational family presenting with primary leg lymphedema, consistent with an autosomal dominant inheritance pattern.

Lower limb lymphedema disrupts both static and dynamic balance.

BACKGROUND: The impact of lower-limb-lymphedema on quality of life of patients regarding balance is unclear due to the scarcity of literature. The aim of this study was to determine the static and dynamic balance of patients with lower-limb-lymphedema in comparison with healthy subjects. METHODS: This case-control designed study included 30 lymphedema patients and 30 healthy individuals, of whom were 52 female and 8 male with a mean age of 50.63 ± 9.72 years. Static balance stability and anterior-posterior with lateral sway parameters on four conditions (eyes-opened-stable-ground, eyes-closed-stable-ground, eyes-opened-unstable-ground, eyes-closed-unstable-ground) and dynamic stability of all participants were evaluated. FINDINGS: The demographic variables were similar between the groups. Majority of the patients had lymphedema due to cancer surgery with a stage of 2. Dynamic stability was significantly disrupted in lymphedema group in comparison with controls (P = 0.049). Static balance parameters were impaired on all conditions except the eyes opened-stable ground in lymphedema patients (P = 0.048,P = 0.043,P = 0.017). The dynamic with static balance and lateral sway parameters were correlated with the duration of lymphedema(P = 0.046,P = 0.002,P = 0.005). Anterior-posterior sway on eyes-closed-unstable-ground condition was correlated with functional status (P = 0.02). Static balance on eyes-opened-unstable-ground condition and anterior-posterior sway parameters were correlated with physical activity level (P = 0.015,P = 0.016,P < 0.05). INTERPRETATION: Closing eyes and the deterioration of ground caused significant alteration of the static and dynamic balance both separately and together in patients with lower-limb-lymphedema compared to healthy subjects. Regarding the static and dynamic imbalance, we suggest the evaluation of balance and inclusion of balance exercises in routine lymphedema rehabilitation program, especially in the early period of disease.

SurLym trial: study protocol for a multicentre pragmatic randomised controlled trial on the added value of reconstructive lymphatic surgery to decongestive lymphatic therapy for the treatment of lymphoedema.

INTRODUCTION: Lymphoedema is a chronic condition caused by lymphatic insufficiency. It leads to swelling of the limb/midline region and an increased risk of infection. Lymphoedema is often associated with mental and physical problems limiting quality of life. The first choice of treatment is a conservative treatment, consisting of exercises, skin care, lymph drainage and compression. Reconstructive lymphatic surgery is also often performed, that is, lymphovenous anastomoses, lymph node transfer or a combination. However, robust evidence on the effectiveness of reconstructive lymphatic surgery is missing. Therefore, the objective of this trial is to investigate the added value of reconstructive lymphatic surgery to the conservative treatment in patients with lymphoedema. METHODS AND ANALYSIS: A multicentre randomised controlled and pragmatic trial was started in March 2022 in three Belgian university hospitals. 90 patients with arm lymphoedema and 90 patients with leg lymphoedema will be included. All patients are randomised between conservative treatment alone (control group) or conservative treatment with reconstructive lymphatic surgery (intervention group). Assessments are performed at baseline and at 1, 3, 6, 12, 18, 24 and 36 months. The primary outcome is lymphoedema-specific quality of life at 18 months. Key secondary outcomes are limb volume and duration of wearing the compression garment at 18 months. The approach of reconstructive lymphatic surgery is based on presurgical investigations including clinical examination, lymphofluoroscopy, lymphoscintigraphy, lymph MRI or CT angiography (if needed). All patients receive conservative treatment during 36 months, which is applied by the patient's own physical therapist and by the patient self. From months 7 to 12, the hours a day of wearing the compression garment are gradually decreased. ETHICS AND DISSEMINATION: The study has been approved by the ethical committees of University Hospitals Leuven, Ghent University Hospital and CHU UCL Namur. Results will be disseminated via peer-reviewed journals and presentations. TRIAL REGISTRATION NUMBER: NCT05064176.

The Vascularized Omentum Lymph Node Transfer - A Key Point in the Lymphedema Management.

Background: As an increased number of women beat breast cancer worldwide, the breast cancer related lymphedema has gained more attention recently. The vascularized omentum lymph node transfer has been approached as an useful tool for advanced and recurrent cases. The purpose of the paper is to emphasize the advantages and disadvantages of this method. Materials and Methods: This retrospective study consists of 17 patients known with breast cancer related lymphedema who received vascularized omentum lymph node transfer. Data was recorded between January 2022 and January 2023. Patients diagnosed with secondary lymphedema stage II or III, unresponsive to previous microsurgical lymphovenous bypass were included. Results: The most prevalent affected site was the left upper limb (59%), where edema was mainly identified in the forearm (75%). Nevertheless, more than half of the subjects have previously received lymphaticovenous anastomosis. The correlation between the stage of lymphedema and the postoperative reduction of the volume of the affected limb was -0.26, the slope to reached -0.33, with an intercept value of 2.64. The follow-up period showed reduced upper limb volume and an improved quality of life. Conclusion: Through an experienced hand, this versatile flap brings hope to breast cancer survivors with lymphedema.

The mechanosensory channel PIEZO1 functions upstream of angiopoietin/TIE/FOXO1 signaling in lymphatic development.

Lymphedema is a debilitating disease with no effective cure and affects an estimated 250 million individuals worldwide. Prior studies have identified mutations in piezo-type mechanosensitive ion channel component 1 (PIEZO1), angiopoietin 2 (ANGPT2), and tyrosine kinase with Ig-like and EGF-like domains 1 (TIE1) in patients with primary lymphedema. Here, we identified crosstalk between these molecules and showed that activation of the mechanosensory channel PIEZO1 in lymphatic endothelial cells (LECs) caused rapid exocytosis of the TIE ligand ANGPT2, ectodomain shedding of TIE1 by disintegrin and metalloproteinase domain-containing protein 17 (ADAM17), and increased TIE/PI3K/AKT signaling, followed by nuclear export of the transcription factor FOXO1. These data establish a functional network between lymphedema-associated genes and provide what we believe to be the first molecular mechanism bridging channel function with vascular signaling and intracellular events culminating in transcriptional regulation of genes expressed in LECs. Our study provides insights into the regulation of lymphatic function and molecular pathways involved in human disease.

Edema of the upper extremity on the unaffected side in unilateral breast cancer patients.

Breast cancer-related lymphedema (BCRL) occurs usually on the affected side, and its cause and pathophysiology are well known. However, the cause of edema of the upper extremity on the unaffected side is barely known. It is often considered to be chemotherapy-induced general edema, and clinical evaluation is rarely performed in these patients. This study aimed to present the clinical characteristics of unilateral breast cancer patients with edema of upper extremity on the unaffected side, and to emphasize the importance of early diagnosis and medical interventions. This study retrospectively analyzed the medical records of unilateral breast cancer patients complaining edema of upper extremity on the unaffected side, from January 2020 to May 2021. Lymphoscintigraphy was used to assist in confirming the diagnosis of lymphedema, and Doppler ultrasonography or 3D computed tomography angiography were performed to differentiate vascular problems. Fourteen patients were enrolled in the study. Seven, 3, and 4 patients had edema of both upper extremities, edema of the upper extremity on the unaffected side only, and edema of all extremities, respectively. None of the 4 patients with edema of all extremities showed abnormal findings on examination. In patients with edema in the upper extremity on the unaffected side alone, lymphatic flow dysfunction was seen in 2 patients, and deep vein thrombosis (DVT) was diagnosed in 1. In patients with edema of both upper extremities, lymphatic flow dysfunction was seen in 2 patients, and DVT was diagnosed in 3. One patient had DVT and accompanying lymphatic flow dysfunction. Lymphedema and DVT were diagnosed in a number of patients with edema of the upper extremity on the unaffected side, and lymphedema can occur without direct injury to the lymphatic flow system. Therefore, clinicians should not overlook the fact that diseases that require early diagnosis and treatment can occur in patients with edema of the unaffected upper extremity.

Use of Natural Language Understanding to Facilitate Surgical De-Escalation of Axillary Staging in Patients With Breast Cancer.

PURPOSE: Natural language understanding (NLU) may be particularly well equipped for enhanced data capture from the electronic health record given its examination of both content-driven and context-driven extraction. METHODS: We developed and applied a NLU model to examine rates of pathological node positivity (pN+) and rates of lymphedema to determine whether omission of routine axillary staging could be extended to younger patients with estrogen receptor-positive (ER+)/cN0 disease. RESULTS: We found that rates of pN+ and arm lymphedema were similar between patients age 55-69 years and ≥70 years, with rates of lymphedema exceeding rates of pN+ for clinical stage T1c and smaller disease. CONCLUSION: Data from our NLU model suggest that omission of sentinel lymph node biopsy might be extended beyond Choosing Wisely recommendations, limited to those older than 70 years and to all postmenopausal women with early-stage ER+/cN0 disease. These data support the recently reported SOUND trial results and provide additional granularity to facilitate surgical de-escalation.

Hit by the wave: The experiences of adult males living with lymphoedema.

Lymphoedema arises when the lymphatic system has been damaged and may occur secondary to cancer treatment. While much of the extant literature focuses on quality of life in females with breast cancer- related lymphoedema, this study explores the impact of living with lymphoedema secondary to cancer treatment in males. Semi-structured interviews were conducted with 13 male participants, aged between 50 to 85 years. Data collected were analysed using interpretative phenomenological analysis. The super-ordinate theme 'Hit by a wave' encompasses the profound impact of lymphoedema on the participants' quality of life. The males expressed body image concerns and struggled with feelings of frustration, anger, anxiety and depression. Physical changes such as weight increase, disrupted sleep, pain, swollen genitals and urinary difficulties were experienced. Changes in lifestyle were also expressed, such as an increased dependence on carers; work-related and role changes. Nevertheless, many participants endorsed the need to focus on the present moment and expressed a heightened appreciation of authenticity in life. By understanding the unique narratives of males with lymphoedema, health care practitioners together with patients can formulate care plans that truly resonate with the needs, concerns, and experiences of males living with lymphoedema.

Fatigue and sleep quality improvement through complete decongestive therapy in postmastectomy lymphedema: An investigative analysis.

OBJECTIVE: To evaluate the effects of complete decongestive therapy (CDT) on cancer-related fatigue, sleep quality, and lymphedema-specific quality of life using validated and reliable questionnaires in cancer patients being commendable. MATERIAL AND METHODS: This prospective study includes 94 patients who had postmastectomy lymphedema syndrome. The demographic characteristics of the patients were recorded. The participants' stages of lymphedema (The International Society of Lymphology), Hirai Cancer Fatigue Scale (HCFS) score, Pittsburgh Sleep Quality Index (PSQI) Global score, lymphedema-specific quality of life questionnaire (LYMQOL-ARM) score, and Global health status were recorded before and after CDT. RESULTS: The mean age of the patients was 58.49 ± 10.96 years. Strong correlations were found between the severity of edema and global health status. There was a significant positive relationship between the HCFS score, PSQI Global score, LYMQOL-ARM score, and CDT. After decongestive physiotherapy, the majority of the lymphedema stages were downstaging (p < 0.05), respectively. There was also a trend toward improvement in general well-being (p < 0.05). CONCLUSION: Cancer-related fatigue and sleep disturbance can persist for years after surgery in women with breast cancer. This can negatively affect the patient physically, socially and cognitively. Our study, which is the first study to investigate the HCFS score in postmastectomy patients and the relationship between PSQI Global score and CDT. The findings identify the risk factors that affect these outcomes in women with lymphedema and can provide valuable insights for targeted interventions and improved patient care.

Reducing the burden: managing lymphoedema and its complications.

Lymphoedema effects approximately 200 000 people in UK. It is a chronic condition without a cure but there is much that can be done to ease and manage these complications. This article looks at the eight most common complications, providing advise on how to manage them, derived from the literature and the author's own experience. It also presents advise on how nurses can promote self-management of these complications, promoting patients' self-care.

Surgical Treatment of Breast Lymphedema: A Distinct Pathology With Unique Challenges.

BACKGROUND: Supermicrosurgical advances such as lymphovenous bypass (LVB) have enabled effective physiologic treatment of lymphedema affecting the extremities. Reports of surgical treatment for breast lymphedema (BL) are sparse, consisting of case reports and almost exclusively LVB. We report our experience with BL, including a case of mastectomy and breast reconstruction with abdominal free flap and inguinal vascularized lymph node transfer (VLNT) for BL. We compare our series with the surgical literature to discern unique characteristics and treatment limitations inherent to this disease. METHODS: A database was prospectively maintained from September 2020 to May 2023 including all patients diagnosed with BL who were referred to our institution. Breast lymphedema was diagnosed using clinical criteria, and relevant patient data were recorded. Patients interested in surgical management underwent indocyanine green lymphography to determine candidacy for LVB or other interventions. All patients, including those surgically managed, were treated with complex decongestive therapy. RESULTS: Nine patients with BL were included. Eight had undergone breast-conserving therapy for breast cancer with whole breast irradiation. One patient was treated for Hodgkin lymphoma with axillary lymphadenectomy and axillary radiation. Indocyanine green lymphography was performed in 6 patients, of which 4 patients had diffuse dermal backflow. Two patients had lymphatic targets suitable for LVB, including the patient without breast irradiation. Three patients were managed surgically. One patient without bypass targets underwent breast reduction with partial symptomatic relief, later followed by a mastectomy with abdominal free flap reconstruction and VLNT. Two patients with suitable bypass targets underwent LVB, with resolution of breast swelling and subjective symptoms. CONCLUSIONS: The diffuse lymphatic obliteration due to radiation field effect in BL results in a distinct pathophysiology compared with extremity lymphedema. Although published reports of surgical BL treatment almost exclusively describe LVB, other surgical options may be more frequently required. Ablative strategies such as mastectomy and regenerative techniques such as VLNT should be considered potential first-line treatment options for these patients.

Alternative Lymphatic Drainage Pathways in the Trunk Following Oncologic Therapy.

BACKGROUND: Anatomic and functional descriptions of trunk and breast lymphedema following breast cancer treatment are emerging as indicators of lymphatic dysfunction. Indocyanine green-lymphangiography has been instrumental in characterizing this dysfunction in the extremity and can be applied to other regions. Previous work has established a validated Pittsburgh Trunk Lymphedema Staging System to characterize such affected areas. This study aims to identify risk and protective factors for the development of truncal and upper extremity lymphedema using alternative lymphatic drainage, providing implications for medical and surgical treatment. METHODS: Patients undergoing revisional breast surgery with suspicion of upper extremity lymphedema between 12/2014 and 3/2020 were offered lymphangiography. The breast and lateral/anterior trunks were visualized and blindly evaluated for axillary and inguinal lymphatic flow. A linear-weighted Cohen's kappa statistic was calculated comparing alternative drainage evaluation. Binomial regression was used to compute relative risks (RRs). Significance was assessed at alpha = 0.05. RESULTS: Eighty-six sides (46 patients) were included. Twelve sides underwent no treatment and were considered controls. Eighty-eight percent of the noncontrols had alternative lymphatic flow to the ipsilateral axillae (64%), ipsilateral groins (57%), contralateral axillae (20.3%), and contralateral groins (9.3%). Cohen's kappa for alternative drainage was 0.631 ± 0.043. Ipsilateral axillary and contralateral inguinal drainage were associated with reduced risk of developing truncal lymphedema [RR 0.78, confidence interval (CI) 0.63-0.97, P = 0.04; RR 0.32, CI 0.13-0.79, P = 0.01, respectively]. Radiation therapy increased risk of truncal and upper extremity lymphedema (RR 3.69, CI 0.96-14.15, P = 0.02; RR 1.92, CI 1.09-3.39, P = 0.03, respectively). Contralateral axillary drainage and axillary lymph node dissection were associated with increased risk of upper extremity lymphedema (RR 4.25, CI 1.09-16.61, P = 0.01; RR 2.83, CI 1.23-6.52, P = 0.01, respectively). CONCLUSIONS: Building upon previous work, this study shows risk and protective factors for the development of truncal and upper extremity lymphedema. Most prevalent alternative channels drain to the ipsilateral axilla and groin. Ipsilateral axillary and contralateral inguinal drainage were associated with reduced risk of truncal lymphedema. Patients with radiation, axillary dissection, and contralateral axillary drainage were associated with increased risk of upper extremity lymphedema. These findings have important clinical implications for postoperative manual lymphatic drainage and for determining eligibility for lymphovenous bypass surgery.

100 anastomoses: a two-year single-center experience with robotic-assisted micro- and supermicrosurgery for lymphatic reconstruction.

Robotic-assisted microsurgery has gained significant attention in recent years following the introduction of two dedicated microsurgical robotic systems specifically designed for this purpose. These feature higher degrees of movement and motion scaling which are useful tools, especially when performing surgery in areas of the body which are difficult to access. Robotic-assisted microsurgery has been implemented in lymphatic surgery as well as soft tissue reconstructive surgery at our institution over the past 2.5 years. Our study gives an insight into the details and outcomes of the first 100 consecutive (super-) microsurgical anastomoses in peripheral and central lymphatic reconstruction performed with the Symani® Surgical System between 2021 and 2024. In total, 67 patients were treated, receiving robotic-assisted lymphatic reconstruction with lymphatic tissue transfer (LTT) and/or lymphovenous anastomoses (LVA)/lympholymphatic anastomoses (LLA). No anastomosis-associated complications were recorded postoperatively. The majority of patients reported a postoperative improvement of their lymphedema or central lymphatic disorder. In conclusion, we show the successful implementation of the Symani® Surgical System into our clinical practice of lymphatic reconstruction. Although the necessary intraoperative setup and the use of intrinsic motion scaling lead to a slight increase in operating time, the presented study demonstrates the advantages of robotic assistance which becomes particularly evident in lymphatic surgery due to the involved deep surgical sites and the need for supermicrosurgical techniques.

Impact of risk factors, early rehabilitation and management of lymphedema associated with breast cancer: a retrospective study of breast Cancer survivors over 5 years.

BACKGROUND: Breast cancer-related lymphedema (BCRL) is a potentially disabling and often irreversible consequence of breast cancer treatment, caused by the mechanical incompetence of the lymphatic system, resulting in reduced drainage capacity and functional overload due to an excessive volume of interstitial fluid surpassing the system's transport capacity in the arm. We wanted to determine the impact and explore the differences in independent risk factors for the occurrence of BCRL; incidence of BCRL over a five-year period at the Institute of Oncology Vojvodina in Sremska Kamenica and to answer the research question regarding the influence of the prehabilitation program on the overall incidence of BCRL during the observed five-year period. METHODS: From 2014 to 2018, a retrospective study was conducted at the Institute of Oncology of Vojvodina in Sremska Kamenica, analyzing female patients who had undergone breast cancer surgery. RESULTS: The study included 150 breast cancer patients who developed secondary lymphedema following surgery with the mean age of 59.2 ± 11.3 years. Fluctuations in hospitalization rates were observed over the five-year period, with the highest number of admissions in 2014 (24.0%) and a decline in 2018 (14.0%). The most common surgical procedure performed was left quadrantectomy (24.0%), followed by right quadrantectomy (20.0%) and left amputation (15.3%). The mean number of removed lymph nodes was 15.2 ± 6.1, with no statistically significant association between the number of removed lymph nodes and the manifestation of secondary lymphedema. The severity of secondary lymphedema varied based on patient age, with a higher incidence of moderate and severe lymphedema observed in patients aged 61 years and older. Patients who underwent radical surgery were more likely to experience severe lymphedema compared to those who had conservative surgery, although this difference was not statistically significant. CONCLUSION: In our study, the type of surgery, elapsed time since surgery, and the number of removed lymph nodes were not influencing factors for the occurrence of BCRL. However, concerning its severity, a greater number of systemic therapy modalities combined with radiotherapy were associated with a more frequent occurrence of mild and moderate BCRL. Also, the severity of BCRL varied among different age groups, with a higher incidence of moderate and severe lymphedema observed in patients aged 61 years and older. Ultimately, improving the quality of life for individuals affected by secondary lymphedema remains a crucial goal in the field of oncology.

An innovative flat-knit compression garment for lymphoedema patients led to better outcomes: a multicentre study.

OBJECTIVE: To evaluate the clinical performance, quality of life (QoL) and patient satisfaction with an innovative flat-knit compression garment for the daytime treatment of lymphoedema patients in daily routine. METHOD: In a prospective multicentre observational study, patients with leg or arm lymphoedema (stage I-II, International Society of Lymphology (ISL) standards, 2016) received a made-to-measure flat-knit compression class 2 JOBST Confidence (BSN-JOBST GmbH, Germany) thigh-high stocking or arm sleeve. Primary endpoint was the oedema status as determined by the mean sum of the circumferences at the beginning and the end of the wearing period. Secondary endpoints included QoL-related parameters and patient satisfaction with product features assessed through questionnaires. The observation period lasted three weeks. RESULTS: A total of 97 patients (87 females, 10 males), of which 65 had leg lymphoedema and 32 had arm lymphoedema, received the study device. The oedema status was effectively maintained (slight reduction in mean sum of circumferences by -3.1±7.3cm; p=0.0001). For QoL-related parameters, the patients reported fewer limitations in work, leisure and psychological wellbeing after wearing the stocking or arm sleeve (all p-values <0.0001). They also experienced less limitations in function and movement, feeling of tension and heaviness, and fewer difficulties wearing clothes, shoes, jewellery or watches at study end (all p-values <0.0001). In terms of pleasant feeling on the skin, moisture management, softness of material, range of motion, overall wearing comfort and heat build-up under the garment, patients were more satisfied with the tested compression garment than with previously worn compression garments (all p-values <0.001). CONCLUSION: In this study, the tested innovative compression product increased patient satisfaction with the improved product features while the lymphoedema status was successfully maintained.

Outcomes from a proof-of-concept specialist lymphoedema clinic in the community.

The Health and Safety Execultive lymphoedema model of care was published in 2018 highlighting the lack of dedicated lymphoedema services in Ireland. This led to the introduction of a proof-of-concept primary care specialist lymphoedema clinic. The clinic was responsible for all patients from their county. A comprehensive dataset was gathered which included the patient's history for 1 year prior to their presentation at clinic and then 6 monthly. A quality of life tool (LymQoL) and a patient satisfaction survey were completed. Completed 1-year data showed a significant reduction in GP and public health nurse visits as well as a reduction in the occurrence of cellulitis and associated hospital admissions. All areas of quality of life were improved and patient satisfaction was either excellent (89%) or very good (11%). The 1-year findings strongly support the roll-out of specialist clinics to all regional health areas.

National Lymphoedema Conference 2024: session summaries.

The 11th annual National Lymphoedema Conference, organised by the British Journal of Community Nursing in association with the British Lymphology Society and Lipoedema UK, was hosted at the America Square Conference Centre, London, on 22 February 2024. The conference, which aims to provide new insights into the latests developments in lymphoedema care and management through talks by leading experts in the field, was attended by an impressive number of delegates and exhibitors. The sessions were Chaired by BLS Trustee Rebecca Elwell, and are summarised below.