Lymphedema after gynecological cancer treatment

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Lymphedema After Gynecological Cancer Treatment Prevalence, Correlates, and Supportive Care Needs

Vanessa Beesley, PhD1 Monika Janda, PhD1 Elizabeth Eakin, PhD2 Andreas Obermair, MD3,4 Diana Battistutta, PhD1

BACKGROUND. Few studies have evaluated lymphedema after gynecological cancer treatment. The aim of this research was to establish prevalence, correlates, and supportive care needs of gynecological cancer survivors who develop lymphedema.

METHODS. In 2004, a population-based cross-sectional mail survey (56% response rate) was completed by 802 gynecological cancer survivors. The questionnaire

1

Queensland University of Technology, School of Public Health, Institute of Health and Biomedical Innovation, Brisbane, Australia.

included demographic questions, a validated, generic supportive care needs

2

University of Queensland, School of Population Health, Cancer Prevention Research Centre, Brisbane, Australia.

reported being diagnosed with lymphedema, and a further 15% (95% CI, 13%–

3

Royal Brisbane & Women’s Hospital, Queensland Centre for Gynecological Cancer, Brisbane, Australia.

cervical cancer survivors, those who had radiotherapy or who had lymph nodes removed had higher odds of developing swelling. For uterine and ovarian cancer

4

had higher odds of developing swelling. Gynecological cancer survivors with

University of Queensland, School of Medicine, Brisbane, Australia.

measure, and a supplementary, newly developed, lymphedema needs module.

RESULTS. Ten percent (95% confidence interval [CI], 8%–12%) of participants 17%) reported undiagnosed ‘‘symptomatic’’ lower limb swelling. Diagnosed lymphedema was more prevalent (36%) amongst vulvar cancer survivors. For

survivors, those who had lymph nodes removed or who were overweight or obese lymphedema had higher supportive care needs in the information and symptom management domains compared with those who had no swelling.

CONCLUSIONS. This population-based study provided evidence that lymphedema is a morbidity experienced by a significant proportion of gynecological cancer survivors and that there are considerable levels of associated unmet needs. Women at risk of lymphedema would benefit from instructions about early signs and symptoms and provision of referral information. Cancer 2007;109:2607–14. This study was made possible by funding support from the Queensland Cancer Fund and access to participants through the Queensland Gynaecological Cancer Registry at Royal Brisbane and Women’s Hospital. We thank A/Prof Joanne Aitken, Dr Jeff Dunn, A/Prof Suzanne Steginga, Dr Sandi Hayes and John Gower for their guidance and support on this project; Dan Jackson for facilitation of registry data; the project staff including: Jessica Howie, Shirley Neill, Loretta McKinnon, and Neil and Dianne Swift; and the women who gave their time to participate in the survey. Address for reprints: Vanessa Beesley, PhD, Cancer and Population Health Group, Queensland Institute of Medical Research, P.O. Box Royal Brisbane Hospital, Herston, QLD, 4029, Australia; Fax: +617 3845 3503; E-mail: vanessa.beesley@qimr. edu.au Received December 5, 2006; revision received January 24, 2007; accepted February 6, 2007.

ª 2007 American Cancer Society


2007 American Cancer Society.

KEYWORDS: lymphedema, morbidity, supportive care, gynecologic carcinoma, perceived needs, continuity of patient care.

L

ower limb lymphedema (LLL) is one of the most disabling side effects of surgical and radiotherapy treatment for gynecological cancer.1 For many gynecological cancer patients, lymph node dissection is an integral part of cancer treatment and surgical staging, and this procedure has been associated with lymphedema development.2 The condition of LLL presents as swelling of the leg(s), typically within the first 12 months post-treatment for gynecological cancer3 and, once developed, often becomes chronic. Issues relating to discomfort and heaviness, difficulties with physical mobility, pain, and financial implications of stockings, compression garments, and fees for consultations often arise in cases of lymphedema (personal communication: Danette Langbecker, Research Officer, Queensland University of Technology).4–6 The experience of having LLL from women’s perspective has been investigated in some qualitative studies,6,7 which indicate that development of LLL erodes

DOI 10.1002/cncr.22684 Published online 1 May 2007 in Wiley InterScience (www.interscience.wiley.com).

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women’s sense of full recovery, negatively affects body image and self-esteem, may deepen depression and, in some cases, may evoke strong anxiety about developing large bodily proportions. Few studies have evaluated the magnitude of LLL after gynecological cancer treatment. Prevalence of LLL is often mentioned by studies that focus on treatment procedures and is reported as a complication ranging from 1%–49%.2,3,8–19 A similarly widely ranging prevalence (0%–48%) has been reported for upper limb lymphedema (ULL) after breast cancer treatment.20 Some of this variability may be explained by a lack of standard diagnostic and universal assessment criteria. For example, Werngren-Elgstrom and Lidman12 objectively defined lymphedema as a unilateral increase in volume of 5% or more in 1 leg. Ryan et al.3 relied on both subjective judgment of women and definitive diagnosis by a lymphedema management specialist, although the classification and validity of the approach used to define lymphedema was not stated. Haberthur et al.11 made the distinction between severe grade and ‘‘other’’ lymphedema, but they also did not specify their classifications. Abu-Rustum et al.2 counted lymphedema cases from patients’ charts as patient-reported or physician-reported swelling and counted lymphedema referrals after excluding patients who may have developed lymphedema from another pre-existing condition. Other studies simply defined lymphedema as swelling or edema15,19 or did not specify how lymphedema was defined.8–10,13,17 Another important reason for the variability in prevalence of LLL may be the inclusion of women in each study with different types of gynecological cancer and, thus, different treatment regimens. Ryan et al.3 reported that women most at risk for developing LLL were those who had treatment for vulvar cancer (47%; n ¼ 32) when compared with ovarian cancer survivors (7%; n ¼ 10), uterine cancer survivors (18%; n ¼ 25), or cervical cancer survivors (18%; n ¼ 21). Other personal and treatment factors that may contribute to the development of lymphedema after cancer treatment have only been explored in detail for patients diagnosed with breast cancer. In the context of gynecological cancer survivors, 1 study suggested age, weight, any lymph nodes removed, and 10 or more lymph nodes removed as potential factors associated with the development of LLL.2 Little is known about supportive care needs of women with LLL. Specific services, such as information on self-management strategies or pharmaceutical support, and referral services to lymphedema healthcare providers or social networks could be particularly helpful, but it is uncertain if patients with

lymphedema receive such support. It was, therefore, the aim of our research to estimate prevalence, to examine correlates of LLL, and to determine specific unmet support needs of women who develop this condition secondary to treatment for gynecological cancer.

MATERIALS AND METHODS Participants and Procedures A cross-sectional, mailed survey was conducted after university and hospital ethical approval. Eligible participants were 18 years of age or older, between 3 months and 5 years postdiagnosis of a gynecological cancer, physically and mentally able to complete the questionnaire, and able to communicate in English. Overall, 1774 women diagnosed between the years 1999 and 2004 were randomly sampled from the Queensland Gynaecological Cancer Registry (QGCR), within strata of gynecological cancer type (cervical, uterine, ovarian, and other) and survival phase postdiagnosis (3 months to 1 year, beyond 1 year to 3 years, and beyond 3 years to 5 years postdiagnosis), of which 1420 fulfilled eligibility criteria. The QGCR is a quasi-population–based registry covering approximately 85% of the Queensland population of gynecological cancer patients. A comparison to the state-based registry, to which all cancer cases are reported by mandate, showed that ovarian cancer patients are slightly under-represented by 20% in this sampling frame. On obtaining treating doctors’ permission, patients were mailed an initial letter signed by their doctor, an information sheet, consent form, questionnaire, and prepaid return envelope. Nonrespondents were sent a follow-up letter at 2 weeks and were telephoned at 4 weeks. After 6 weeks, nonrespondents were mailed a final reminder letter (including a replacement questionnaire package if contact had not been established at telephone follow-up). Measures Sociodemographic items Seven sociodemographic questionnaire items determined respondent age, marital status, education level, employment status, household income, country of origin, and number of children living at home. Health characteristics Diagnosis and treatment information related to type of cancer, survival phase, cancer stage, surgery, chemotherapy, radiotherapy, hormone therapy, lymph node removal, last admission for treatment, and disease presence were abstracted from QGCR medical

Lymphedema After Gynecological Cancer/Beesley et al.

and/or hospital charts. The questionnaire included items assessing height and weight to determine body mass index (BMI).

Lymphedema-specific items A set of questions were developed to determine lymphedema status and capture the experience of having LLL. On the basis of qualitative findings from Ryan et al.’s6 study, we constructed questions to assess 1) symptoms in lower limbs, 2) date of symptom onset and date of clinical LLL diagnosis, 3) triggers that preceded appearance of or worsening of lymphedema symptoms, 4) time when women were informed about the potential risk of developing LLL, and 5) lymphedema treatments used. In addition, severity of symptoms in the last month were assessed by using a graded scale (mild, moderate, and severe), as was difficulty with performing daily tasks (no difficulty, mild difficulty, moderate difficulty, severe difficulty, and unable to perform daily tasks on the basis of response options from the ‘‘Disabilities of the Arm, Shoulder and Hand’’ outcome measure).21 Supportive care needs items The standardized Supportive Care Needs Survey Short Form (SCNS-SF34)22 is a self-administered questionnaire that allows patients to indicate their level of need for each item on a 5-point scale (ranging from no need to high need). The 34 items are collapsed to form 5 supportive-care needs domains (psychological, health system information, physical or daily living, patient care or support, and sexual). These 5 domains were reported to account for 72% of variance, with Cronbach alpha scores for resulting subscales ranging from 0.87 to 0.96.22 A supplementary needs module was also developed to measure 11 support-need items of women with lymphedema symptoms (instrument available from author on request). Five of 8 items were modified from an existing colostomy module. A question on ‘‘dealing with your partner’s reaction’’ was included because loss of interaction and intimacy with partners as a result of appearance and swollen legs was reported by Ryan et al.6 Also, from an existing breast cancer module, questions about ‘‘being informed about the causes, prevention, and treatment of lymphedema,’’ ‘‘finding a support group that addresses your particular lymphedema needs,’’ and ‘‘pain or discomfort’’ were included. Two additional questions queried support for ‘‘doing daily activities around the home’’ and the ‘‘cost of having lymphedema,’’ as it has been reported that a majority of women alter their daily activities because of swollen legs and that having LLL creates extra expenses.6

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Validity of newly developed instruments The lymphedema-specific items and lymphedema supplementary-needs module were evaluated for content validity via review by cancer support experts and for face validity with pilot testing. Forty-eight women were selected for the pilot in the same way as the main study participants, and the pilot was administered under similar protocol conditions. No adverse comments were made about the validity of these items.

Statistical Analysis Descriptive statistics (counts, percentages) were used to summarize demographic characteristics and responses of women to the set of questions about lymphedema. Due to stratified sampling, prevalences were weighted by each woman’s chance of selection to enable generalizabilty to the gynecological cancer population. Responses to the SCNS-SF34 and the supplementary-needs module for lymphedema were categorized into moderate-to-high unmet need, or no-to-low need, similar to other needs research,23–28 and prevalence of women experiencing moderate-tohigh unmet need was assessed for each item. Key prevalence estimates are reported with 95% confidence intervals (95% CI) to indicate precision of the estimates. Possible correlates of lymphedema identified in the literature20 and collected in this study, including age, staging, surgery type, chemotherapy, radiotherapy, hormone therapy, lymph nodes removed, and body mass index, were entered into a logistic-regression model to determine their association with patient risk of diagnosis with LLL or symptomatic LLL. For this analysis, the outcome of lymphedema status was dichotomized into women with no swelling or women symptomatic of lymphedema (regardless of whether their swelling was diagnosed as lymphedema). This dichotomy ensured adequate cases in the symptomatic group for observation of statistically precise correlates. Furthermore, all independent variables in the model were stratified by type of gynecological cancer to consider effect modification. Lymphedema status (defined by 3 categories: no edema [fluid] of lymphedema, undiagnosed swelling of unknown cause, and diagnosed lymphedema) was also assessed as a correlate of reporting unmet needs, within multiple supportive-care needs domains: psychological, sexual, physical or daily living, and healthcare information. Logistic regression modeling was used, adjusting for a range of factors collected in the study.

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TABLE 1 Key Demographics, Cancer Diagnosis, and Treatment Characteristics of 802 Study Respondents in Queensland, Australia, 2004 Characteristics Age, y* 18–39 40–49 50–59 60–69 701 Marital status* Single Defacto/married Seperated/divorced Widowed Annual household income AUD* 3–5 y 73.6 (204) *

Undiagnosed lower limb swelling

Diagnosed lymphedema

13.7 (110)

10.1 (81)

14.2 (28) 14.0 (34) 15.8 (37) 15.1 (8) 4.0 (3)

12.2 (24) 8.2 (20) 4.7 (11) 35.8 (19) 9.3 (7) *

11.1 (21) 16.1 (54) 12.6 (35)

5.8 (11) 9.6 (32) 13.7 (38)

* Clinically significant (8% or more difference between categories).

land Gynaecological Cancer Registry. Nonrespondents either specified that they did not wish to participate (25%; n ¼ 361) or never replied (18%; n ¼ 257). Respondents were generally representative of the sampling frame, except that older women (ages 70 years and older) were slightly under-represented. Key demographic, diagnostic, and treatment characteristics are indicated in Table 1.

Prevalence of Diagnosed and Symptomatic Lymphedema Twenty-five percent (95% CI, 22%–28%) of gynecological cancer survivors reported swelling of their legs. However, only 10% (95% CI, 8%–12%) of the sample were clinically diagnosed with LLL. The prevalence of women diagnosed with lymphedema was different across cancer type and survival phase. Table 2 indicates that vulvar cancer survivors had a considerably higher prevalence (36%) of diagnosed lymphedema than all other gynecological cancer subgroups (5%– 12%). Undiagnosed lower limb swelling prevalence was similar across main cancer types. Prevalence of gynecological cancer survivors with no symptoms of lymphedema decreased proportionately after the first year postdiagnosis (Table 2). Correlates of Diagnosed or Symptomatic Lymphedema Multivariate analysis showed that cervical cancer survivors had 3.5-fold higher odds of developing lower limb swelling if they had radiotherapy than if they did not (95% CI, 1.6–7.8; P
.05) and 3.3-fold higher odds of lower limb swelling when lymph nodes were removed compared with no lymph node

Lymphedema After Gynecological Cancer/Beesley et al.

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TABLE 3 Significant Correlates of Lower Limb Swelling Stratified by Type of Gynecological Cancer Cervical Correlates of lower limb swelling Radiotherapy No radiotherapy Internal brachytherapy External beam radiotherapy  brachytherapy Lymph nodes removed No Yes Body Mass Index Underweight Normal weight Overweight Obese Missing

Uterine

Ovarian

No.

Unadjusted % with swelling

Adjusted OR (95% CI)

No.

Unadjusted % with swelling

Adjusted OR (95% CI)

No.

Unadjusted % with swelling

Adjusted OR (95% CI)

103 1

16.5 —

Referent —

162 38

21.0 26.3

Referent 0.9 (0.4–2.2)

229 2

19.7 —

— —

93

37.6

3.5 (1.6–7.8)*

43

23.3

0.9 (0.4–2.1)

3

—

—

77 120

16.9 32.5

Referent 3.3 (1.5–7.6)*

128 115

15.6 29.6

Referent 2.2 (1.1–4.4)*

137 97

16.1 26.8

Referent 1.8 (0.9–3.5)

8 91 41 34 23

— 28.6 26.8 26.5 17.4

— Referent 1.0 (0.4–2.4) 0.9 (0.3–2.2) —

5 57 60 90 31

— 12.3 26.7 28.9 9.7

— Referent 2.7 (1.0–7.5)* 4.1 (1.6–10.7)* —

6 85 59 61 23

— 16.5 25.4 24.6 13.0

— Referent 1.9 (0.8–4.5) 1.9 (0.8–4.5) —

No. indicates participant numbers; OR, odds ratio; CI, confidence interval. —Not considered because of low numbers of cases and over sensitivity. * Statistically significantly different from the referent group, P < .05. Note: Final models adjusted for age, stage, surgery type, chemotherapy, radiotherapy, hormone therapy, lymph nodes removed and body mass index. Note: Women with a gynecological cancer other than cervical, uterine, or ovarian were not included in this analysis because there were too few cases for statistical precision.

removal (95% CI, 1.5–7.6; P
.05). For uterine cancer survivors, there was no association between radiotherapy and lower limb swelling; however, for uterine cancer survivors who had lymph node dissection or who were overweight or obese, the odds of developing swelling were significantly higher compared with, respectively, those who did not have lymph nodes removed and those in the normal weight range (Table 3). No significant association between lower limb swelling and lymph node dissection or BMI was observed for ovarian cancer survivors. However, a potentially clinically meaningful association was observed in the same direction as for uterine cancer survivors (Table 3). Numbers of vulvar cancer survivors were too small to estimate correlates of lymphedema with sufficient precision.

Onset of Lymphedema and Timing of Information Of 81 women with diagnosed lymphedema in our study, 75% were diagnosed with the condition within the first year postdiagnosis of cancer; 19% were diagnosed the following year, and 6% were diagnosed with lymphedema between 2 years and 5 years postdiagnosis. Whereas 31% reported being informed about lymphedema before their cancer treatment, 34% of women did not recall being informed about this condition until they were diagnosed. Others (30%) were informed after their cancer

treatment but before symptoms arose, or they could not remember when they were informed (5%).

Symptom Experience, Physical Mobility, and Treatments In addition to swelling of the lower limbs, the other main symptoms experienced were legs feeling heavy (46%), skin feeling tight in the legs (43%), and pain in the legs (41%). Recalling symptoms in the preceding month, 40% perceived their symptoms as mild, 30% as moderate, 10% as severe, and 20% had had no symptoms. The 3 most common factors that women reported triggering or preceding the appearance or worsening of lymphedema symptoms were being on their feet all day (64%), hot weather (47%), and long-distance travel (44%). Thirty percent of women diagnosed with lymphedema had mild difficulty performing their daily tasks, 26% had moderate difficulty, and 5% had severe difficulty. None reported being unable to perform their daily tasks. Women with diagnosed lymphedema used a variety of treatments. The most common included compression garments (64%), lymphatic massage (62%), and lymphatic exercises (42%). Unmet Needs Gynecological cancer survivors with diagnosed lymphedema had higher relative odds of psychological (odds ratio [OR], 2.49; 95% CI, 1.49–4.17; P < .001),

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TABLE 4 Moderate or High Unmet Needs Reported by Symptomatic and Diagnosed Lymphedema Sufferers Who Were 3 Months to 5 Years Postdiagnosis for Gynecological Cancer In Queensland, Australia, 2004 (n = 231*) Survivors with moderate to high unmet needs, % (no.)

Item To be more informed about the causes, preventions, and treatment of lymphedema To be given written information about ways to manage symptoms of lymphedema Pain or discomfort in the legs or groin To be given more help in managing the symptoms of lymphedema The cost of having lymphedema Coping with changes in your self-image as a result of having lymphedema To have help in initially coping with the emotional shock of having lymphedema Managing the symptoms of lymphedema in the workplace Doing your daily activities around the home Finding a support group which addresses your particular lymphedema needs Dealing with your partner’s reaction to your legs

25.4 (59) 25.0 (59) 20.2 (48) 18.8 (45) 14.5 (33) 14.4 (33) 13.2 (30) 11.8 (27) 11.2 (26) 7.5 (17) 4.4 (10)

* Each item has a different number of participants who completed that question, and on average across the 11 items, 231 women completed the items.

physical or daily living (OR, 2.21; 95% CI, 1.37–3.58; P ¼ .001), and sexual needs (OR, 2.41; 95% CI, 1.46– 4.00; P ¼ .001) than gynecological cancer survivors with no lower limb swelling. These are unadjusted results; the results adjusted for the range of factors collected in this study confirm these associations, although with substantially less precision because of the small sample size. Table 4 indicates the need for lymphedemaspecific help. A quarter of women with symptomatic or diagnosed LLL reported a moderate or high need for help to be more informed about causes, prevention, and treatment of lymphedema and to be given written information about lymphedema. Also, about a fifth of women reported a moderate or high need for help with pain or discomfort in the legs or groin and with managing symptoms of lymphedema.

DISCUSSION Prevalence of reported LLL after gynecological cancer treatment varies substantially within literature. Our large, population-based study supports the main body of evidence,3,9,11,12,14,15,18,19 which suggests LLL is a morbidity experienced by a significant proportion of women after gynecological cancer treatment (10%; 95% CI, 8%–12%), with highest prevalence (36%) among vulvar cancer survivors and lowest (5%) among ovarian cancer survivors. Some of the variation in lymphedema prevalence in literature can be attributed to the type of gynecological cancer included in different studies and the way in which lymphedema was defined and measured. For example, Ryan et al.3 demonstrated that 47% of vulvar cancer survivors may develop lymphedema, a figure

very close to the 51% of vulvar cancer survivors in our study who reported either diagnosed or undiagnosed lower limb swelling. Also contributing to the variation may be the time of lymphedema onset. Both Ryan et al.3 and our study confirmed that most lymphedema diagnoses occurred within the first year after cancer diagnosis (84% and 75%, respectively) with the remaining proportion of cases diagnosed longer after cancer diagnosis. Our study showed that some documented contributing factors to the development of lymphedema after breast cancer treatment20 also increase risk for developing LLL; however, these factors differ across cancer types. Among cervical cancer survivors, women who had radiotherapy or who had lymph nodes removed were at higher risk of developing swelling. Among uterine cancer survivors and, to a lesser extent, ovarian cancer survivors, women who had lymph nodes removed or who were overweight or obese were at higher risk. This raises the issue that larger women post-treatment for endometrial or ovarian cancer may experience leg swelling unrelated to their treatment. However, caution is advised in completely separating BMI from treatment effects because lymph node dissection can be more difficult in obese patients. Although radiotherapy was associated with developing lower limb swelling for cervical cancer survivors in our study, it was not for uterine cancer survivors. This may, in part, be due to particulars of a radiotherapy regimen or, alternatively, to the combination of radiotherapy and chemotherapy among cervical cancer patients, which may be detrimental to lymphedema development. Apart from quantifying that women with LLL reported more than double the supportive care needs

Lymphedema After Gynecological Cancer/Beesley et al.

in a number of domains, our research is unique in that it has established particular supportive care needs related to lymphedema. Our study showed that 34% of women did not recall being informed about lymphedema until they were diagnosed with LLL. This was higher than the 17% reported by Ryan et al.6 however, both studies indicate that the time when information is received about lymphedema may be too long after cancer treatment is finalized and may need to be given greater emphasis earlier after diagnosis and treatment. This is consistent with 25% of women with LLL who identified a need for further information about causes, prevention, and treatment of lymphedema, and written information about ways to manage symptoms of lymphedema. Early identification of LLL and unequivocal instructions on how best to manage lymphedema have been identified as major concerns by patients within previous reports.29,30 These need to be reaffirmed during health professional training and continuous education sessions. Needs relating to help with pain or discomfort in the legs or groin and with managing the symptoms of lymphedema were also unmet among a significant proportion of our study participants with LLL. To alleviate the physical burden of lymphedema, it is important that women are aware of, and are treated with, the most up-to-date treatment regimen. Complex Physical Therapy (CPT), comprising lymphatic massage, special exercises, compression bandages and garments, and skin care is advocated as an effective treatment, sometimes in combination with benzopyrones.31,32 It is also important for women to have access to physical therapists trained in lymphatic massage and special exercises.33 The Lymphoedema Association of Australia32 has conducted additional training courses during recent years for some 500 therapists from all over Australia, New Zealand, the USA, and some other countries. Another recent initiative was to develop a lymphedema resource directory.34 While, at the time of our data collection, this resource was not available, its existence will potentially reduce the burden of unmet needs. Limitations of our study need to be considered when interpreting these results. Whereas the crosssectional design was appropriate to determine lymphedema prevalence, causality was not possible to infer. The slight under-representation of ovarian cancer survivors within the sampling frame compared with the population base means that this study’s reported prevalence of lymphedema and unmet needs may be somewhat inflated because LLL diagnoses in ovarian cancer survivors are signifi-

2613

cantly less prevalent compared with other gynecological cancer survivors. The 57% response rate resulted in under-representation of older women (ages 70 years) in the sample. Because age was categorized and women in the 701 group were only a small proportion of the sample, this bias is not likely to have substantially changed prevalence estimates. Prevalence of LLL within our study is likely to be representative of that among other westernized populations where treatment and disease characteristics of gynecological cancer survivors are similar. However, generalizability of unmet needs to other Australian states and territories, or to other countries, may be difficult because of differences in service provision and access to support modalities. Our study has highlighted the prevalence of LLL as well as its undiagnosed symptoms. Present data also found that many women who experience lymphedema, or its symptoms, have lymphedemaspecific unmet needs for information support and help with the physical burden of this condition. To address the substantially unmet needs specific to lymphedema sufferers identified within our study, it is recommended that self-management information, and referral information for suppliers and health providers specializing in lymphedema management, be given to women in high-risk groups, that is, women 1) who have been treated for vulvar cancer, or 2) who have lymph node dissection, 3) cervical cancer survivors who have radiotherapy, or 4) overweight or obese uterine and ovarian cancer survivors. Information on LLL should be given before surgery in addition to an explanation of benefits and risks of lymph node dissection. Information provision should probably be included as part of the hospital discharge procedure, but should be repeated at later follow-up visits to increase recall.

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