Australian and New Zealand Journal of Obstetrics and Gynaecology 2003; 43: 148–151

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Blackwell Publishing Ltd. Original ArticleAetiology and prevalence of LLL

Aetiology and prevalence of lower limb lymphoedema following treatment for gynaecological cancer

Mary RYAN,1 M. Colleen STAINTON,1 Emma K. SLAYTOR,1 Carmel JACONELLI,1 Sally WATTS1 and Patricia MACKENZIE1

1Gynaecological Cancer Centre, Royal Hospital for Women, Randwick and Centre for Women’s Health Nursing, Royal Hospital for Women, University of Sydney, New South Wales, Australia

AbstractObjective: To determine the prevalence and incidence of lower limb lymphoedema (LLL) in a cohort of womenwho had treatment for gynaecological cancer between May 1995 and April 2000.

Design: A retrospective survey.

Setting: The study took place at an urban referral centre in an Australian tertiary referral women’s hospital.

Sample: The data collection was based on 66% of 743 women on the database of the Gynaecological Cancer Centre.

Methods: Interviews and assessments were conducted to determine the status of lower limbs; medical records werereviewed for age, weight, site and type of cancer and treatment.

Main outcome measures: Leg swelling, diagnosed lower limb lymphoedema, no swelling of the legs and type ofsurgery were determined as the main outcome measures.

Results and conclusions: The diagnosis of lower limb lymphoedema was made in 18% of the total sample: 53%of these were diagnosed within 3 months of treatment, a further 18% within 6 months, 13% within 12 months andthe remaining 16% up to 5 years following treatment. Women most at risk for developing LLL were those who hadtreatment for vulvar cancer with removal of lymph nodes and follow up radiotherapy. For this subsample, theprevalence was 47%. The finding that LLL occurs within the first year is earlier than hitherto generally believed. Itis therefore imperative for all health professionals to include care and assessment of the legs particularly during theimmediate pre- and postoperative period.

Key words: gynaecology/oncology nursing, lower limb lymphoedema, vulvectomy.

Introduction

Lower limb lymphoedema (LLL) is a major source of mor-bidity following surgery for the treatment of gynaecologicalcancer that includes removal of lymph nodes and/or radio-therapy. The condition of LLL presents as swelling of theleg(s) that is generally believed to occur long after treatmentand once developed becomes chronic.

There is no current estimate of the prevalence of LLL toguide clinicians in identifying those most at risk of develop-ing this condition. The major aim of the present study wasto determine the prevalence of secondary LLL followingtreatment for gynaecological cancer.

Lymphoedema occurs when there is a reduced drainageof protein and cells via the lymphatics.1 Lymphoedema canbe either primary or secondary. Primary lymphoedemausually occurs due to a congenital abnormality. Secondarylymphoedema occurs due to obstruction or surgical dissec-tion of the lymph nodes.

There are few studies that focus on LLL. One studyundertaken over a 45-year period reported 9% of womenfrom a total of 415 who had treatment for vulvar cancerdeveloped LLL as a sequel of treatment.2 Another studyexamined the incidence of LLL in 54 women following treat-ment for cancer of the cervix.3 The authors reported a 41%incidence of LLL by measurement and 21% of the womenhad LLL that was symptomatic. Other publications presentcase reports that describe the management of LLL and theeventual outcome.4–6

Another aspect of the present study reported elsewheredescribes the experience of having LLL from the women’s

Correspondence: Mary Ryan, Clinical Nurse Consultant, Gynaecological Cancer Centre, Royal Hospital for Women, Locked Bag 2000, Randwick New South Wales 2031, Australia. Email: ryanm@sesahs.nsw.gov.au

Received 15 July 2002; accepted 16 December 2002.

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perspective.7 The majority of research on lymphoedema,however, is on the upper limb following treatment for breastcancer. Much less is known about LLL as an outcome ofgynaecological cancer treatment.

Methods

A retrospective survey was conducted with ethical approvalto determine the prevalence and incidence of LLL in womenwho had treatment for gynaecological cancer. The settingwas a major tertiary referral centre in a women’s hospital inthe 5-year period May 1995–April 2000.

Study participants

All women on the database of the Gynaecological CancerCentre were sent an introductory letter explaining the purposeof the present study. The envelope contained a consent toparticipate that was to be signed and returned in the stampedenvelope addressed to the research assistant of the study witha completed initial survey form. To determine incidence aswell as prevalence, all women who had surgery for eithermalignant or benign conditions were included in order todifferentiate those women who had and did not have lymph nodedissection. No other selection criteria were applied. Womenknown to be deceased or terminally ill were excluded.

Data collection

The survey form asked the women for their name and fur-ther contact details, the type of surgery they had, if they hadreceived chemotherapy and/or radiotherapy and if they hadexperienced any leg swelling following surgery. If they indi-cated ‘yes’ to leg swelling, the survey also asked if they wouldthen consent to being contacted by phone to make anappointment for an interview. A reminder letter with a self-addressed envelope was sent out to women who had notresponded approximately 8 weeks after the first mailout.

A retrospective review was conducted on the medicalrecords of all the participating women. Data collected includedage, weight, site of cancer, histology, site and number ofnodes removed, type of surgery, and treatment modalities.

The diagnosis was made based on the subjective judge-ment of the women, and definitive diagnosis by a lym-phoedema management specialist. That is, the womendescribed symptomatic-persistent swelling in one or bothlower limbs which developed following treatment for hergynaecological cancer and that could not be attributed to anyother cause.

Statistical methods and data management/analysis

All data were managed using Microsoft Access. Data wereanalysed using Version 10.0. Means and standard devi-ations (SD) were compared using Student’s t-tests. Propor-tions were compared using χ2 tests.

Results

Of the 743 letters that were sent, 572 completed surveyswere returned giving a 77% response rate. Of theseresponses, 13% (n = 74) were from a family member statingthat the woman had died and 2% (n = 11) did not consentto participate further or could not be contacted. The finalnumber of women who contributed to the data collectionwas 487 (66%).

Prevalence of LLL

While 177 (36%) women reported swelling of their legs,clinically diagnosed LLL occurred in 89 (18%) women. Themean age of all women was 57.2 years (SD 13.8). The meanweight was 70.5 kg (SD 16.8). There was no statisticallysignificant difference in either age (t = 1.96; d.f. = 484;P = 0.051) or weight (t = 0.56; d.f. = 456; P = 0.573)between the women who had LLL and those who did not.As can be seen in Table 1, 71% of those who develop LLLdo so within 6 months of surgery, the majority of these(53%) within 3 months and 84% by the end of the firstyear.

Site of cancer

Thirty-two (47%) of the 68 women (14%) had treatment forvulvar cancer and 47% developed LLL. This proportion ofwomen with vulvar cancer who subsequently developed LLLwas significantly greater when compared with all other can-cers (χ2 = 43.8, P = 0.000). While uterine (n = 141) andovarian (n = 141) cancers were equally distributed in thesample, 7% (n = 10) with ovarian cancer developed LLLcompared to 18% (n = 25) with uterine cancer. Of the 25%(n = 120) of women with cervical cancer, 18% (n = 21)developed LLL (Table 2).

Influence of treatment

Seventy-five percent (6/8) of women who had groin dissec-tion alone developed LLL (Table 3). Of the women who hadvulvectomy and nodes removed, 59% (26/44) developedLLL, and 20% (47/230) of women who had a hysterectomy

Table 1 Onset of lower limb lymphoedema

Prevalence of lymphoedema Time of onset n %

<3 months 47 52.83–6 months 16 18.06–12 months 12 13.5Within 2 years 6 6.7Within 3 years 2 2.2More than 3 years 3 3.4Missing 3 3.4Total 89 100.0

M. Ryan et al.

150 Australian and New Zealand Journal of Obstetrics and Gynaecology 2003; 43: 148–151

and nodes removed developed LLL. The proportion ofwomen who had vulvectomy and node removal who subse-quently developed LLL was significantly greater when com-pared with all other types of surgery (χ2 = 53.9, P = 0.000).The proportion of women who developed LLL was statisti-cally greater in women who had nodes removed from thegroin region only, when compared to all other sites(χ2 = 64.1, P = 0.000) (Table 4).

For the present study, ‘sampling’ from the various sitesinvolved the removal of less than 15 pelvic nodes, less than10 para-aortic nodes and/or less than six groin nodes. ‘Dis-section’ involved the removal of a larger quantity of nodes

than sampling in any of those sites. The proportion ofwomen who had lymph node dissection and then developedLLL was statistically greater than the proportion of womenwho had lymph node sampling only (χ2 = 7.69, P = 0.006).

A total of 160 women in the present study had chemo-therapy. The proportion of women who had chemotherapyand subsequently developed LLL (24/89) was not statisticallygreater than the proportion of women who did not havechemotherapy (136/398) (χ2 = 1.71, P = 0.191). A total of153 women had radiotherapy. The proportion of womenwho had radiotherapy and subsequently developed LLL (55/89) was statistically significant when compared with thegroup of women who had radiotherapy but did not developLLL (98/398) (χ2 = 46.7, P = 0.000).

Discussion

The most significant clinical finding in the present study isthat 84% of women who developed LLL did so within the first12 months which is much sooner than commonly believed.It is also sooner than the information that is usually pre-sented to women prior to surgery. Lower limb lymphoedemahad been considered a late side-effect of treatment becauseof lack of evidence to guide health professionals. The presentstudy has also shown that women are most likely to develop

Table 2 Site of cancer

All women in study

Prevalence of lymphoedema

Location n % n %

Uterus 141 29.0 25 17.7Ovary 141 29.0 10 7.1Cervix 120 24.4 21 17.5Vulva 68 14.0 32 47.1Other 17 3.3 1 5.9Total 487 100 89 18.3

Table 3 Type of surgery

All women in study Prevalence of lymphoedema Type of surgery n % n %

Hysterectomy plus node removal 230 47.2 47 20.4Hysterectomy only 74 15.2 0 –Vulvectomy plus node removal 44 9.0 26 59.1Debulking plus node removal 40 8.2 6 15.0Miscellaneous 40 8.2 4 10.0Debulking only 38 7.8 0 –Vulvectomy only 13 2.7 0 –Groin dissection 8 1.6 6 75.0Total 487 100 89 18.3

– Not applicable.

Table 4 Site of lymph node removal

All women in study Prevalence of lymphoedema Removal of nodes location n % n %

Groin only 45 9.2 28 62.2Pelvis only 233 47.8 47 20.2Pelvis and groin 10 2.1 5 50.0Paraortic only 3 0.6 – –Pelvis and paraortic 50 10.3 9 18.0Pelvis, groin and paraortic 1 0.2 – –No site recorded (no nodes removed) 145 29.8 – –Total 487 100.0 89 18.3

– Not applicable.

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LLL if they undergo radiotherapy following dissection oflymph nodes in the groin region.

The current study was conducted in one setting therebylimiting the generalisability of the findings. However, thesample size was reasonable, and the variation in the rangein type, site of cancer and surgical techniques of the sur-geons is representative of the specialty of gynaecologicaloncology.

These findings indicate that there is a need for moreawareness of LLL and the possibility of early onset. Conti-nuity of care between professionals in hospital and those inthe community needs to be strengthened. Letters from hos-pital specialists to the woman’s primary caregiver need toinclude the risk for LLL, information on what to observeand where to refer if LLL is noted. Continuing and compre-hensive assessment of a woman following gynaecologicalcancer surgery, especially those having radiation therapy,must include monitoring of the legs for early signs of LLLso that early and appropriate treatment can be initiated. Aswas found, swelling of the legs not due to lymphoedema isalso common and needs to be differentiated from LLL.

The published reports on sentinel node procedures inwomen with vulval cancer documents the low risk of falsenegative sentinel nodes.8–10 This indicates a possibility ofmore conservative surgery in the future. These reports sup-port the need for prospective studies combining testing inter-ventions to prevent LLL and documenting the incidence ofLLL when an extensive lymphadenectomy has been spared.

Acknowledgement

The donation of funds for nursing research from a familyand a research award from the Royal Hospital for WomenFoundation made this study possible. The project teamwishes to thank the women who participated in the study.The suggestion of the need for this study came from Asso-ciate Professor, N. Hacker, Director of Gynaecological

Cancer Centre, Royal Hospital of Women, Randwick, NewSouth Wales. Also, Ms Terase Malone, Data Manager,Gynaecological Cancer Centre, Royal Hospital of Women,Randwick, New South Wales is gratefully acknowledged.

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