Anecdotally, I've always know that women undergoing treatment for cancer of the external genitalia have a really high risk of developing lymphoedema. This study adds limited but much needed evidence in this direction, and also provides important data on quality of life. The full text version is not available open access but I have pasted the abstract at the end of the blog.
Most studies on the prevalence of lymphoedema (ie how many people are affected) after oncology treatment are carried out retrospectively, relying on people to recall whether they had any swelling before hand or not, so one of the strengths of this study is that it was conducted prospectively. That is, before cancer therapy began. One of its weakness is that like most studies on lymphoedema it was not a large cohort, only 22 women.
One of the most important things about this study is that it used self-reported-symptoms (SRS) to determine if lymphoedema was present, not clinical assessment alone. This is important because we know that SRS frequently present before any visible or measurable change has occurred. And the results of this study showed that women detected their own lymphoedema by SRS in 87% of cases compared to only 5% that were picked up by clinical assessment alone. I would love it if all cancer survivors were routinely counselled on the symptoms of lymphoedema and encouraged to seek treatment as soon as they suspect anything. It is so important not to wait until lymphoedema has become clinically manifest to begin treatment. But back to the research.....
Another other important consideration in this study was the inclusion of swelling in other body parts, not just legs. Women were asked and assessed for swelling in the legs, vulva, pelvis and abdomen. The importance of including these areas in clinical assessment cannot be understated, as swelling in the genitals or abdomen may be more distressing for many women than the appearance of a swollen leg.
Of the 22 women in this study, 20 had undergone treatment for vulvar cancer and two for vaginal cancer. Two years after cancer diagnosis and treatment, the point prevalence for lymphoedema in any region was 56% (point prevalence means that had lymphedema at that point in time). Cumulative prevalence (they had lymphoedema at any time during the two year period) was 86%, with 68% experiencing symptoms within the first 3 months after surgery. The only 2 women who did not developed any symptom of lymphoedema after 2 years, had not had lymph node dissection, radiation therapy, or chemotherapy during their cancer treatment. It's probably no surprise that this study found a strong association between lymphoedema SRS and poorer quality of life.
There are 3 take home messages
Self-reported-symptoms of lymphoedema are a valid method of assessing lymphoedema presence
Women who are undergoing treatment for cancer of the external genitalia should be counselled about their risk of lymphoedema and educated in mitigating their risk, and this should begin within 3 months post-surgery
More research is required on the incidence and prevention of truncal oedemas after cancer treatment
Gane, E.M.; Steele, M.L.; Janda, M.; Ward, L.C.; Reul-Hirche, H.; Carter, J.; Quinn, M.; Obermair, A.; Hayes, S.C. The prevalence, incidence, and quality-of-life impact of lymphedema after treatment for vulvar or vaginal cancer. Rehabilitation Oncology 2018, 36, 48-55 doi:10.1097/01.REO.0000000000000102
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  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.