The Prevalence, Incidence, and Quality-of-Life Impact of Lymphedema After Treatment for Vulvar or Vaginal Cancer

Elise M. Gane; Megan L. Steele; Monika Janda; Leigh C. Ward; Hildegard Reul-Hirche; Jonathan Carter; Michael Quinn; Andreas Obermair; Sandra C. Hayes. Rehabilitation Oncology 2018

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The Prevalence, Incidence, and Quality-of-Life Impact of Lymphedema After Treatment for Vulvar or Vaginal Cancer

Elise M. Gane; Megan L. Steele; Monika Janda; Leigh C. Ward; Hildegard Reul-Hirche; Jonathan Carter; Michael Quinn; Andreas Obermair; Sandra C. Hayes. Rehabilitation Oncology 36:48–55 2018

Background: Incidence of lymphedema appears to be higher in women with vulvar/vaginal cancer than in those with other forms of gynecological cancer. The objective of this work was to determine the point prevalence and incidence of lymphedema in women with vulvar/vaginal cancer and to describe symptom burden and quality of life (QOL).

Methods: Prospective longitudinal cohort study conducted in Brisbane, Australia, including adult women with newly diagnosed vulvar/vaginal cancer. The primary outcome was self-reported swelling of the legs, vulvar area, or pelvis/abdomen or a clinical diagnosis of lymphedema. Severity of associated symptoms and QOL (Functional Assessment of Cancer Therapy–General) were also reported. Assessments were conducted over 2 years.

Results: All participants (vulvar: n=20; vaginal: n=2; mean [SD] age = 57 [12] years) received surgical treatment, and 8 (36%) also received adjuvant therapy. By 24 months post diagnosis, only 2 (9%) women had no evidence of lymphedema; all others self-reported swelling (n = 10; 45%), had a clinical diagnosis (n = 1; 5%), or both (n = 9; 41%). Three or more symptoms of moderate or greater intensity were reported by 7 (44%) women at 2 years. The presence of lower limb symptoms (including mild intensity) was associated with reduced QOL (any symptom: QOL estimate =−13.29; 95% CI, −19.30to−7.27; P<.001). Limitations: Small sample size limits interpretation of findings.

Conclusion: These findings demonstrate that the majority of women receiving treatment of vulvar/vaginal cancer experience lymphedema and symptoms of swelling are associated with lower QOL. Monitoring of swelling via patient self-report may identify women at risk of low QOL outcomes after treatment of vulvar/vaginal cancer

Main findings

  • The primary outcome of this study was lymphedema, as assessed by (a) Self-reported swelling (SRS) and (b) clinical diagnosis. For SRS, participants were asked whether they had experienced swelling in the leg (uni- or bilateral), vulva (between the legs), pelvis, or lower abdomen at each of the assessment periods (including prior to surgery). Available responses were “yes,” “no,” or “unsure,” although no participant within this subset responded as “unsure.” Also severity was considered.
  • The clinical diagnosis was determined by reviewing medical records for documented evidence of an allied health or medical professional informing a participant that she had lymphedema or of the participant receiving treatment of lymphedema.
  • Health-related quality of life was measured with the Functional Assessment of Cancer Therapy–General (FACT-G) scale (version 2).
  • Rates of SRS in the present study were higher than those reported by previous studies.
  • Seventeen of the 22 (77%) women in this study had lymph nodes removed as a part of their surgical treatment; yet, 20 of 22 (91%) women reported lymphedema (SRS or clinical diagnosis) by the end of the study.
  • Traditionally, nodal dissection has been considered a risk factor for lower limb lymphedema. However, the use of nodal dissection appears not to explain all of the risks to developing lymphedema. For example, another contributor to postoperative swelling may be the presence of swelling already at diagnosis. The point prevalence of SRS in any region prior to surgery was 41%, suggesting the lymphatic system may have already been overloaded, compromised, or both by the presence of malignancy (reactive lymph nodes leading to leg swelling or abdominal distension and bloating leading to vulvar/abdominal swelling) related to biopsy procedures, or by an inherent suboptimal lymphatic system.
  • The results of the present study suggest that in patients with vulvar/vaginal cancer, SRS information concerning the legs and vulvar and/or pelvic/abdominal regions prior to surgery needs to be collected as a more accurate baseline for comparison with postoperative assessment findings and should not necessarily be considered normal.
  • These findings would benefit from replication in a larger data set.
  • Women with vulvar/vaginal cancer have a very high cumulative burden of subjective swelling across a 2-year period following surgical management. Swelling can occur in the legs or vulvar and/or pelvic/abdominal region and was not identified by clinical diagnosis in half of the cases of women self-reporting the presence of swelling.