lymphedema: experience of a cohort of women with breast cancer followed for 4 years after diagnosis...

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ORIGINAL ARTICLE Lymphedema: experience of a cohort of women with breast cancer followed for 4 years after diagnosis in Victoria, Australia Robin J. Bell & Penelope J. Robinson & Raychel Barallon & Pamela Fradkin & Max Schwarz & Susan R. Davis Received: 18 July 2012 / Accepted: 11 February 2013 / Published online: 24 February 2013 # Springer-Verlag Berlin Heidelberg 2013 Abstract Purpose The aim of this work was to study the incidence and prevalence of self-reported lymphedema in breast can- cer survivors between 2 and 4 years following diagnosis, the factors associated with the development of lymphedema and the impact of lymphedema on psychological well-being. Methods We assessed self-reported lymphedema in the BUPA Health Foundation Health and Wellbeing After Breast Cancer Study, a questionnaire-based study of 1,683 women newly diagnosed with their first episode of invasive breast cancer in Victoria, Australia. Psychological well- being was assessed using the Psychological General Well- being Index. Results Two years after diagnosis, nearly 20 % of women reported lymphedema and this proportion remained above 18 % 2 years later. However, self-reported lymphedema was a dynamic phenomenon, with the condition resolving in some women and others reporting onset for the first time up to 4 years from diagnosis. Lymphedema 2 years from diagnosis was positively associated with the number of nodes removed at initial surgery, although this variable only explained a small proportion of the likelihood of reporting lymphedema. The presence of lymphedema was associated with lower psychological general well-being. Conclusions Lymphedema after breast cancer treatment fre- quently has a dynamic pattern and may emerge as an issue for women several years after their initial treatment. It is associated with a lower level of general well-being. Keywords Lymphedema . Breast cancer . Prevalence . Incidence . Resolution . Determinants Introduction Secondary lymphedema of the arm due to disruption of the lymphatic channels by either surgery or radiotherapy com- monly occurs after treatment for breast cancer [1]. If left untreated, lymphedema can persist for months to years and can predispose to infection which can be life-threatening [1]. It can also impair quality of life [2] as it can be disfiguring, be associated with pain and tenderness and interfere with motor skills such as writing [3]. Although modern treatment for breast cancer incorpo- rates approaches that will minimise the risk of the develop- ment of lymphedema, including the use of sentinel node biopsy to minimise the need for axillary dissection [4], lymphedema following breast cancer treatment has not been eliminated. A recent Australian review concluded that one in five women will experience lymphedema following treat- ment for breast cancer with the prevalence of the condition increasing with longer follow-up; however, 7080 % of women were reported to have developed the condition with- in 12 months of treatment [5]. This review also suggested that large prospective studies were needed to improve R. J. Bell (*) : P. J. Robinson : R. Barallon : P. Fradkin : S. R. Davis Womens Health Program, School of Public Health and Preventive Medicine, Monash University, 99 Commercial Road, Melbourne, Victoria 3004, Australia e-mail: [email protected] M. Schwarz Department of Medicine, Central Clinical School, Monash University, 99 Commercial Road, Melbourne, Victoria 3004, Australia M. Schwarz Alfred Health, Commercial Road, Melbourne, Victoria 3004, Australia Support Care Cancer (2013) 21:20172024 DOI 10.1007/s00520-013-1763-1

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ORIGINAL ARTICLE

Lymphedema: experience of a cohort of women with breastcancer followed for 4 years after diagnosis in Victoria,Australia

Robin J. Bell & Penelope J. Robinson & Raychel Barallon &

Pamela Fradkin & Max Schwarz & Susan R. Davis

Received: 18 July 2012 /Accepted: 11 February 2013 /Published online: 24 February 2013# Springer-Verlag Berlin Heidelberg 2013

AbstractPurpose The aim of this work was to study the incidenceand prevalence of self-reported lymphedema in breast can-cer survivors between 2 and 4 years following diagnosis, thefactors associated with the development of lymphedema andthe impact of lymphedema on psychological well-being.Methods We assessed self-reported lymphedema in theBUPA Health Foundation Health and Wellbeing AfterBreast Cancer Study, a questionnaire-based study of 1,683women newly diagnosed with their first episode of invasivebreast cancer in Victoria, Australia. Psychological well-being was assessed using the Psychological General Well-being Index.Results Two years after diagnosis, nearly 20 % of womenreported lymphedema and this proportion remained above18 % 2 years later. However, self-reported lymphedema wasa dynamic phenomenon, with the condition resolving insome women and others reporting onset for the first timeup to 4 years from diagnosis. Lymphedema 2 years fromdiagnosis was positively associated with the number ofnodes removed at initial surgery, although this variable only

explained a small proportion of the likelihood of reportinglymphedema. The presence of lymphedema was associatedwith lower psychological general well-being.Conclusions Lymphedema after breast cancer treatment fre-quently has a dynamic pattern and may emerge as an issuefor women several years after their initial treatment. It isassociated with a lower level of general well-being.

Keywords Lymphedema . Breast cancer . Prevalence .

Incidence . Resolution . Determinants

Introduction

Secondary lymphedema of the arm due to disruption of thelymphatic channels by either surgery or radiotherapy com-monly occurs after treatment for breast cancer [1]. If leftuntreated, lymphedema can persist for months to years andcan predispose to infection which can be life-threatening[1]. It can also impair quality of life [2] as it can bedisfiguring, be associated with pain and tenderness andinterfere with motor skills such as writing [3].

Although modern treatment for breast cancer incorpo-rates approaches that will minimise the risk of the develop-ment of lymphedema, including the use of sentinel nodebiopsy to minimise the need for axillary dissection [4],lymphedema following breast cancer treatment has not beeneliminated. A recent Australian review concluded that onein five women will experience lymphedema following treat-ment for breast cancer with the prevalence of the conditionincreasing with longer follow-up; however, 70–80 % ofwomen were reported to have developed the condition with-in 12 months of treatment [5]. This review also suggestedthat large prospective studies were needed to improve

R. J. Bell (*) : P. J. Robinson :R. Barallon : P. Fradkin :S. R. DavisWomen’s Health Program, School of Public Health and PreventiveMedicine, Monash University, 99 Commercial Road,Melbourne, Victoria 3004, Australiae-mail: [email protected]

M. SchwarzDepartment of Medicine, Central Clinical School, MonashUniversity, 99 Commercial Road,Melbourne, Victoria 3004, Australia

M. SchwarzAlfred Health, Commercial Road,Melbourne, Victoria 3004, Australia

Support Care Cancer (2013) 21:2017–2024DOI 10.1007/s00520-013-1763-1

understanding of the patterns of incidence of the condition.Lymphedema has been assessed using a variety of objectivemethods. A gold standard volumetric method is lacking anddifferent volumetric assessments have been shown to pro-vide discordant results [6]. Furthermore, the repeated use ofvolumetric measures to assess a large study sample wouldbe logistically challenging. Most importantly, volumetricmeasures do not necessarily identify the women actuallybothered by the condition, which is what is the most impor-tant clinically.

The aim of this study was to determine the incidence andprevalence of lymphedema in the BUPA Health FoundationHealth and Wellbeing After Breast Cancer Study (BUPAstudy), a questionnaire-based prospective cohort of 1,683women with their first diagnosis of invasive breast cancerrecruited across the state of Victoria, Australia between2004 and 2006 [7]. Lymphedema was documented by self-reporting through a series of questions. This allowed boththe inclusion of all women in the study at the time ofcompletion of each questionnaire and enabled us to trackboth the incidence and resolution of the lymphedema overtime. Critically, lymphedema was not defined or graded byspecific measurements but was determined from the per-spective of the experience of the individual.

Methods

Study population

Women in the BUPA study were recruited mainly (78 %)through the Victorian Cancer Registry (VCR) with theremaining women recruited directly to our research unit. Adetailed account of recruitment to this study has been pub-lished [7]. For recruitment through the VCR, we were onlydenied access to 5 % of potential recruits on the recommen-dation of the managing clinician. Only 16 % of womenapproached through the VCR declined to participate. Thewomen recruited to the study are representative of all wom-en diagnosed with invasive breast cancer in the state ofVictoria in terms of their age distribution, the size of theirtumours at diagnosis and their location of residence [7].

Study procedures

The study was conducted entirely by mail. All participantscompleted an enrolment questionnaire (EQ) within12 months of their diagnosis and then completed an annualfollow-up questionnaire thereafter (FQ1, FQ2 and FQ3).Time between diagnosis and the completion of the enrol-ment questionnaire was on average 0.8 years (90 % ofquestionnaires were completed in the interval 0.2 to1.1 years from diagnosis). Subsequent questionnaires were

completed at 12-month intervals and so were completed onaverage 1.8 (90 % confidence interval (90 %CI) 1.2 to 2.2),2.8 (90 %CI 2.1 to 3.2) and 3.8 (90 %CI 3.1 to 4.3) yearsfrom diagnosis.

The details of the pathology for each participant, whichincluded the number of axillary lymph nodes removed atsurgery, were provided to our study by the VCR. The EQincluded questions about demographics and initial treatment[7]. Subsequent questionnaires included questions aboutlymphedema as well as questions about the developmentof further active disease (evidence of recurrence either localor distant as well as another primary breast cancer) andfurther treatment including surgery, radiotherapy and adju-vant therapy.

In FQ1, women were asked whether they had experi-enced lymphedema in the previous 12 months and wereasked to rate how disabling the condition was (not at all, alittle, moderately so to severely disabling). To be consideredfree of lymphedema, women needed to answer “no” to thequestion about whether or not they had experienced lymph-edema in the past 12 months. To be classified as havinglymphedema, a woman had to answer “yes” to the questionand also give an indication of the degree to which she wasbothered by it.

The questions about lymphedema were preceded by anexplanatory statement: “Lymphedema occurs if the lymphat-ic system, which normally maintains fluid balance in thebody, is impaired. This causes swelling of certain body parts(e.g. arm). Lymphedema may develop following certainmedical treatments or procedures.” The questions aboutlymphedema were repeated in FQ2 and FQ3.

Each of the follow-up questionnaires included thePsychological General Well-being Index [8] (PGWB).We have reported on its use in our cohort previously[9] as well as in healthy women in the community [10].This is a 22-item questionnaire with six domains: anxi-ety, depressed mood, positive well-being, self-control,general health and vitality. The six domains of thePGWB are created by summing the scores of groups ofquestions. The answers to some questions are reverse-scored so that for the individual domains and for thescore as a whole, a higher score indicates a higher levelof well-being. Each of the domain scores takes values upto 15, 20 or 25, depending on the number of questionsin the domain and the highest total score possible is 110.The PGWB has been shown to demonstrate validity andreliability, and data from its use in the National Healthand Nutrition Examination Survey have demonstrated thatit can be generalised to adults aged 25 to 74 years [8].

The data were initially explored using tables, cross tabula-tions and bar graphs. Comparisons of medians were madeusing non-parametric statistics where data were not normallydistributed.

2018 Support Care Cancer (2013) 21:2017–2024

Statistical analyses were performed using the statisticalsoftware SPSS 19.0 for Microsoft Windows (SPSS Inc., Chi-cago, IL, USA). The characteristics of women who did anddid not report lymphedema at FQ1 were included in a forwardlogistic regression analysis to describe which variables con-tributed independently to the likelihood of reporting lymph-edema at FQ1 and estimate what proportion of the likelihoodof reporting lymphedema could be explained by the differ-ences observed between groups. Forward multiple linear re-gression was used to explore factors both positively andinversely associated with the PGWB total score.

Results

At the time of completion of the FQ1 when the questionsabout lymphedema were asked for the first time, 1,588participants remained in the study. Women were lost to thestudy either because they did not survive long enough tocomplete a subsequent questionnaire, they elected not tocontinue in the study or they (rarely) were lost to follow-up. Eleven women who completed at least one study ques-tionnaire were excluded from the analysis because they didnot answer the question about lymphedema. The final num-bers of women completing each questionnaire and includedin the analysis who did and did not report lymphedema ineach of FQ1, FQ2 and FQ3 are shown in Fig. 1.

The prevalence of lymphedema at the time of the FQ1was the highest reported in the study at 19.7 %. There was a

marginal reduction in the prevalence of lymphedema fromthat point to 19.5 % in the subsequent questionnaire (FQ2)nearly 3 years from diagnosis and 18.2 % nearly 4 yearsfrom diagnosis (FQ3).

Despite the relative consistency in the prevalence oflymphedema at each time point, there was a substantialmovement of women between the groups reporting presenceor absence of the condition with about one in four womenwho reported the presence of lymphedema in FQ1 or FQ2reporting no lymphedema in the subsequent questionnaireand about 1 in 20 women who reported “no lymphedema” inFQ1 or FQ2 moving into the “lymphedema” group in thenext questionnaire. Forty-three women reported lymphede-ma for the first time nearly 4 years from diagnosis.

By the time of the FQ3, only 163 women had reported thepresence of lymphedema in each of the three follow-up ques-tionnaires and represent 11 % of the 1,435 women whoremained in the analysis by FQ3. The total number of womenwho reported no lymphedema in each of the follow-up ques-tionnaires was 1,044 and represents 73 % of the womenremaining in the analysis by FQ3. Some women reporteddeveloping either recurrent disease or a new BC (active dis-ease) in FQ2 and FQ3. However, this phenomenon did notexplain the development of new lymphedema in the majorityof cases as between both FQ1 to FQ2 and FQ2 to FQ3, onlytwo women reported new active disease.

The majority of women reporting lymphedema at eachpoint reported that they were only minimally bothered by it.At FQ1, 229/311 (74 %) reported being only minimally

311 (19.7%) lymphedema

290 (19.5%) lymphedema

261 (18.2%) lymphedema

1266 (80.3%) no lymphedema

1195 (80.5%) no lymphedema

1174 (81.8%) no lymphedema

Did not complete FQ2

Did not complete FQ3

213(68.5%)

1588FQ1

1496FQ2

1444FQ3

203(70.0%)

79(25.4%)

71(24.5%)

77 (6.1%)

58 (4.9%)

19

1116(88.2%)

1103(92.3%)

73

3416

Fig. 1 Numbers of women who did and did not report lymphedema in FQ1, FQ2 and FQ3 amongst the total number of women completing each ofthe questionnaires (with 11 women excluded from the analysis)

Support Care Cancer (2013) 21:2017–2024 2019

bothered with the remaining 26 % (82/311) reporting beingmoderately or severely bothered. The proportions at FQ2 andFQ3 reporting that they were minimally bothered were 73 and72 %, respectively.

Women who reported lymphedema at FQ1 were morelikely to be beyond stage 1 at diagnosis (p=0.001), have beentreated with chemotherapy by FQ1 (p<0.001), live outside themetropolitan area (p=0.007), report being on an aromatase

inhibitor rather than tamoxifen at FQ1 (p=0.003), be younger(by about 2 years) (p=0.002), have a higher body mass index(by about 1 unit of BMI) (p<0.001) and have had more lymphnodes removed (about four more) (p<0.001) (Table 1). None-theless, Fig. 2 illustrates the large variation in the number ofnodes removed in both groups.

Lymphedema was not more likely amongst women whowere treated with mastectomy compared with breast-

Table 1 A comparison of women who did and did not report lymphedema at FQ1

No lymphedema1,266 (80.3 %)

With lymphedema311 (19.7 %)

Total1,577

N (%) N (%) N (%) χ2 p value

Age at diagnosis (median, range) 57.2 (26.7, 88.7) 55.1 (29.0, 84.9) 56.7 (26.7, 88.7) −3.0a 0.002

Body mass index (median, range) 25.4 (16.3, 54.2) 26.5 (18.6, 54.0) 25.6 (16.3, 54.2) −4.6a <0.001

Number of nodes removed (median, range) 9.0 (0, 36) 13.0 (0, 40) 10.0 (0,40) −8.4a <0.001

Stage at diagnosis

Stage 1 632 (51.8) 126 (41.2) 758 (49.7) 11.051 0.001>Stage 1 588 (48.2) 180 (58.8) 768 (50.3)

Type of surgery by FQ1

Mastectomy 371 (29.4) 107 (34.4) 478 (30.4) 2.987 0.084Lumpectomy 892 (70.6) 204 (65.6) 1,096 (69.6)

Reports active disease

Active disease by FQ1 37 (2.9) 8 (2.6) 45 (2.9) 0.11 0.74No active disease by FQ1 1,229 (97.1) 303 (97.4) 1,532 (97.1)

Radiotherapy at any point up to FQ1

Treated with radiotherapy 967 (76.4) 239 (76.8) 1,206 (76.5) 0.03 0.862Not treated with radiotherapy 299 (23.6) 72 (23.2) 371 (23.5)

Chemotherapy at any point up to FQ1

Treated with chemotherapy 603 (47.6) 187 (60.1) 790 (50.1) 15.6 <0.001Not treated with chemotherapy 663 (52.4) 124 (39.9) 787 (49.9)

Endocrine therapy

None 360 (28.4) 87 (28.0) 447 (28.3) 11.785 0.003AI 332 (26.2) 110 (35.4) 442 (28.0)

Tamoxifen (reference group) 574 (45.3) 114 (36.7) 688 (43.6)

Education

Year 12 or below 691 (54.7) 164 (52.7) 855 (54.3) 0.376 0.54Post secondary school 573 (54.3) 147 (47.3) 720 (45.7)

Location of residence at EQ

Metropolitan area 879 (69.4) 191 (61.4) 1,070 (67.9) 7.355 0.007Non-metropolitan area 387 (30.6) 120 (38.6) 507 (32.1)

Partnership status at FQ1

Has a partner at FQ1 696 (76.5) 241 (77.7) 1,210 (76.8) 0.202 0.653No partner at FQ1 297 (23.5) 69 (22.3) 366 (23.2)

Smoking status at FQ1

Current smoker 117 (9.2) 22 (7.1) 139 (8.8) 1.460 0.227Non- or past smoker 1,149 (90.8) 289 (92.9) 1,438 (91.2)

Consumes alcohol at FQ1

Yes 930 (73.7) 238 (77.0) 1,168 (74.3) 1.443 0.230No 332 (26.3) 71 (23.0) 403 (25.7)

There were 1,588 women who completed FQ1, but 11 women are not included as they did not complete the question about lymphedema; not alltotals add to 1,577 due to small numbers of missing data pointsaMann–Whitney test

2020 Support Care Cancer (2013) 21:2017–2024

conserving surgery and was also not more likely amongstthose who reported treatment with radiotherapy.

The single most important factor contributing to thelikelihood of lymphedema at FQ1 was the number of lymphnodes removed (p<0.001), although this variable alone onlyexplained about 7 % of the likelihood of reporting lymph-edema (Nagelkerke R2 0.067) (Table 2). Other variables wefound to be positively associated with the presence oflymphedema were body mass index (p<0.001), living out-side of the metropolitan area (p=0.024) and being treatedwith an aromatase inhibitor rather than tamoxifen (p=0.004).Age was inversely associated with the likelihood of reportinglymphedema (p=0.005). Our most complete model onlyexplained 10% of the total likelihood of reporting lymphedema(Nagelkerke R2=0.10).

The total well-being score at FQ1 for women reportinglymphedema was lower by about six points compared withwomen who did not report lymphedema (Table 3). Thescores for each of the domains of the PGWB (apart fromthe domain of self-control) were also lower in the womenreporting lymphedema. In a multi-linear regression model,lymphedema was associated with a lower total PGWB scoreat FQ1 (p<0.001) as were smoking (p<0.001), the presenceof active disease (p<0.001), being educated beyond school(p=0.001) and having a higher body mass index (p=0.009)

(Table 4). Being older (p<0.001), having a partner(p=0.001) and being on tamoxifen compared with eitherbeing on no endocrine therapy or an aromatase inhibitor(p<0.001) were each associated with a higher total PBWBscore at FQ1.

Discussion

Our study has confirmed that about one in five womenreported lymphedema by 2 years post diagnosis of invasivebreast cancer and that this proportion remains relativelyconstant until nearly 4 years from diagnosis. Although thelikelihood of lymphedema 2 years post diagnosis was asso-ciated with removal of more lymph nodes from the axilla atthe time of initial surgery for breast cancer, this variableexplained only a small proportion of the likelihood ofreporting lymphedema.

The majority of women with lymphedema in our studyreport were only mildly bothered by it, although the meanpsychological well-being of women reporting lymphedemawas lower than that of unaffected women, even when otherfactors known to be associated with reduced well-being weretaken into account. The magnitude of the difference in theoverall well-being score was of a similar order of magnitude

Fig. 2 Number of women withand without lymphedema ineach category determined bythe number of nodes removed atsurgery

Table 2 Logistic regressionmodelling factors associated withlymphedema at FQ1 (forwardregression (n=1,500, R2=0.10))

aData provided by the VictorianCancer Registry

No. added Predictor Nagelkerke R2 Odds ratio p value

1 Number of nodes removeda 0.065 1.072 <0.001

2 Body mass index (kg/m2) 0.081 1.046 <0.001

3 Age at diagnosis 0.087 0.983 0.005

4 Endocrine therapy 0.096 0.015

None vs. tamoxifen 1.225 0.223

Aromatase inhibitor vs. tamoxifen 1.590 0.004

5 Metro vs. country 0.100 1.371 0.024

Support Care Cancer (2013) 21:2017–2024 2021

as we have documented with other chronic health conditionssuch as urinary incontinence [11] and back pain [12].

A novel finding is that self-reported lymphedema fluctu-ates over time. Some women who reported lymphedemaearly did not continue to report it. This could be because itresolved spontaneously or no longer bothered them enough,or it could have responded to treatment. Although we askedwomen about the use of massage therapy in our question-naires, this question was not specifically related to thetreatment of lymphedema so we are unable to assess theimpact of therapy on resolution of the condition. Somewomen reported lymphedema for the first time nearly 4 yearsfrom diagnosis, possibly as a consequence of an event suchas a skin infection which highlighted the presence of thecondition which had previously gone unnoticed. There hasbeen a recent report of a woman with a past history of breastcancer developing lymphedema for the first time after avaccination [13].

More conservative axillary surgery has been associatedwithreduced likelihood of morbidity from lymphedema [14, 15]and our data did show a significant association betweenlymphedema and the number of axillary nodes removed. How-ever, lymphedema has been reported in women whose onlyaxillary surgery has been sentinel lymph node biopsy and whohave only had on average three lymph nodes removed [4].

Our estimate of one in five fits well with the recentAustralian review which included studies using a numberof different objective measurements to define the presenceof lymphedema [5]. Our results suggest that the proportionof women who reported lymphedema at some point aftertheir treatment is likely to be more than one in five. By thetime of completion of the FQ3 nearly 4 years from diagno-sis, about 27 % of women had reported lymphedema atsome point after treatment but only 11 % had reported it ineach questionnaire. Consistent with this picture, a studywhich ascertained the presence of lymphedema in womenfor 20 years after mastectomy and axillary dissection hasshown that 49 % reported lymphedema at some point [16].

Many factors will affect the findings of studies of lymph-edema including the characteristics of the populationrecruited, particularly stage at diagnosis (which will influencetreatment including management of the axilla) and also thedistribution of age and body mass index [17, 18]. The esti-mated prevalence of lymphedema will also be affected bywhether women are assessed on only one occasion (and thetime from diagnosis at which that assessment is performed) orwhether they are followed over time. If women are followedover time, the findings will be affected by whether women arelost to follow-up between assessments (as in our study) inwhich case each assessment of prevalence is performed on a

Table 4 Multiple linear regres-sion modelling for factors associ-ated with the total PGWB score(forward regression, n=1,521,R2=0.104)

Number added Predictor R2 R2 change Beta coefficient p value

1 Current smoker at FQ1 0.026 0.026 −9.181 <0.001

2 Age at diagnosis 0.047 0.022 0.229 <0.001

3 Lymphedema at FQ1 0.064 0.017 −4.572 <0.001

4 Active disease at FQ1 0.080 0.016 −11.463 <0.001

5 Partnered at FQ1 0.087 0.007 3.344 0.001

6 Tamoxifen (vs. none/AI) 0.095 0.008 2.890 <0.001

7 Education beyond year 12 0.100 0.005 −2.724 0.001

8 BMI 0.104 0.004 −0.203 0.009

Table 3 A comparison of PGWB domain and total scores for women who did and did not develop lymphedema at FQ1 (n=96 women missing asthey withdrew prior to FQ1, n=11 women missing because their lymphedema status was missing)

No lymphedema1,266 (80.3 %)

With lymphedema311 (19.7 %)

Total1,577

Mann–Whitney M-Wtest

Median, mean (SD) Median, mean (SD) Median mean (SD) M-W p value

PGWB subscale—anxiety 19.0, 18.3 (4.8) 17.5, 16.8 (5.3) 19.0, 18.0 (4.9) −4.6 <0.001

PGWB subscale—depressed mood 13.0, 12.7 (2.7) 13.0, 12.0 (3.1) 13.0, 12.5 (2.8) −3.7 <0.001

PGWB subscale—positive well-being 14.0, 13.2 (3.6) 13.0, 12.4 (3.9) 14.0, 13.1 (3.7) −3.5 <0.001

PGWB subscale—self-control 9.0, 9.3 (1.6) 9.0, 9.2 (1.6) 9.0, 9.3 (1.6) −1.6 0.114

PGWB subscale—general health 10.0, 10.0 (2.8) 9.0, 9.0 (3.0) 10.0, 9.8 (2.9) −5.9 <0.001

PGWB subscale—vitality 13.0, 12.3 (3.8) 11.0, 11.0 (4.1) 12.0, 12.1 (3.9) −5.2 <0.001

PGWB total 78.0, 75.9 (15.8) 72.0, 70.2 (17.5) 77.0, 74.7 (16.3) −5.3 <0.001

SD standard deviation

2022 Support Care Cancer (2013) 21:2017–2024

slightly different group of women each time or whether therepeated assessments are restricted to women available for allassessments (in which case the study is restricted to a relative-ly low risk group as all women must have survived to com-plete all the assessments). The statistic chosen for reporting isalso important. Most studies report a point prevalence or aseries of point prevalences while others report a cumulativeincidence [19–21]. Where a cumulative incidence is reported,once a woman has developed lymphedema, she will always becounted in the lymphedema group. This approach is limited interms of assessing a condition which our results would sug-gest is quite dynamic.

The feature of lymphedema studies which has receivedthe most attention has been the method of assessing thepresence of lymphedema. Objective methods used includethe following: differences in arm circumference (either be-fore or after studies or comparing one arm with the other),water volume displacement studies, perometry (where anarray of optoelectronic sensors is used to assess limb vol-ume) and bioimpedance spectroscopy to assess the volumeof extracellular fluid [22]. Studies which have used differentobjective methods in the same women have demonstratedthat they give different results [6] and studies in whichsubjective assessment has been included have shown thatit compares favourably with objective approaches [23, 24].Although the apparent attraction of objective methods isreproducibility, they miss the point in terms of the impactof lymphedema on the affected women and this is what iscritical from a clinical care perspective.

The strength of our study is that it is large and generalisableto women diagnosed with their first episode of invasive breastcancer in the southern Australian state of Victoria. Anotherstrength is that we assessed women onmore than one occasionbetween 2 and 4 years from the time of diagnosis and we didnot assume that once a woman had reported the presence oflymphedema, she would always be classified as havinglymphedema. Although assessing the presence of lymphede-ma using self-report could be considered a weakness [5], self-report has been found to be a sensitive measure of the impactof lymphedema on the individual and objectivemeasures havearbitrary cut-off values and do not agree well with each other[6]. Another weakness could be that we only asked womenabout the presence of lymphedema and did not ask aboutfeelings of “heaviness” or problems with rings not fitting ordifficulty writing or other symptoms and signs that could haveindicated the presence of lymphedema [19]. However, we didexplain what lymphedema was in a preamble to the question.

In conclusion, we have confirmed that self-reported lymph-edema is experienced by at least 27 % of breast cancer survi-vors by the time they are 4 years from diagnosis, with mostwomen being only mildly bothered by the condition. Despitethis, lymphedema is independently associated with lower self-reported psychological general well-being. It is important for

health-care providers to understand that the phenomenon is adynamic one and that some women may report lymphedemafor the first time as long as 4 years from diagnosis. As thesurvival of women with breast cancer continues to improve[25], lymphedema remains a clinical priority.

Acknowledgments The authors wish to thank the study participantsand the members of our Study Advisory Group: Dr Jacquie Chirgwin,A/Professor John Collins, Professor Graham Giles, Mr Peter Gregory,Mr Stewart Hart, Ms Suzanne Neil and Mrs Avis McPhee. The authorsalso wish to thank the members of the research team of the Health andWellbeing After Breast Cancer study, without whose hard work thislarge cohort study would not be possible (Maria La China and JoBradbury). Finally, we thank Ms Helen Farrugia, Director of Informa-tion Systems and Professor Graham Giles, Director, of the VictorianCancer Registry, for their ongoing support of this study.

Funding sources This work was supported by the BUPA HealthFoundation (previously the Medical Benefits Fund of Australia Limit-ed Foundation) (to SRD and RJB), the National Health and MedicalResearch Council of Australia (grant nos. 219279 to SRD and RJB,490938 to SRD), Novartis Oncology Australia, the L.E.W. Carty Trust,the Jack and Robert Smorgon Families Foundation and Connie andCraig Kimberley and Roy Morgan Research (all to SRD and RJB).This research project was also supported by the Victorian Governmentthrough a Victorian Cancer Agency Research Fellowship (to RJB).

Conflict of interest None of the authors consider that they have anyconflict of interest that could inappropriately influence or bias thiswork. None of the funding agencies had any role in determining studydesign; in the collection, analysis and interpretation of data; and in thewriting of the manuscript or in the decision to submit the manuscriptfor publication.

Ethical approval The study is being carried out with the approval ofthe Ethics Committee of the Cancer Council of Victoria and the HumanEthics Committee of Monash University and all participants haveprovided written informed consent.

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