Knowledge of Previous Treatments and Appreciation of Future Health Concerns Among Breast Cancer Survivors

October 2015 Vol 6, No 5
Grace Makari-Judson, MD
Chandravathi Loke, MD
Deborah Katz, MD
Wilson C. Mertens, MD, MSBA

Baystate Medical Center, The Baystate Regional Cancer Program, Springfield, MA; Tufts University School of Medicine, Boston, MA

Background: Breast cancer survivors’ understanding of treatment and future health risks is needed to gain insight into unmet survivorship needs in this population.

Objectives: To assess breast cancer survivors’ recall of diagnosis and treatment as well as their impressions of the risk for breast cancer recurrence and other diseases.

Methods: We conducted a retrospective study of 300 patients with breast cancer (stage I-III) that was diagnosed between 1997 and 2007 who responded to a questionnaire. Responses were verified by chart review, and actual risk estimates were obtained from Adjuvant! Online and literature review. Descriptive analyses were used to assess recall accuracy and to compare demographic data. Stepwise logistic multivariable regression analyses were conducted to evaluate univariate associations.

Results: Tumor stage was correctly recalled by 53.1% of participating patients. Younger patients, white race, higher income, and educational attainment were univariate associations; similar results were seen for recall of tumor hormonal status and chemotherapy regimen. Patients significantly overestimated the risk for local and distant disease recurrence, particularly if they correctly recalled their disease stage. Patients with higher income and higher education consistently reported higher risk for subsequent cancers, but not for benign ailments.

Conclusions: Patients recalled the general treatment plan, but finer details often were recalled imprecisely. Although younger age, white race, higher education, and higher income were associated with accurate recall of disease stage and treatment, patients with higher income and education perceived a greater risk for second cancer. Future studies are warranted to assess whether survivorship care plans overcome these disparities.

It has been estimated that there are 13.7 million cancer survivors in the United States today, and breast cancer survivors represent the largest subgroup of this population.1 Uncertainty about optimal care has led to a call for increased survivorship research.2,3 Survivors face not only the potential for disease recurrence but also the risk for second malignancies related to breast cancer–associated risk factors and previous treatment.

Although breast cancer survivors are at risk for new cancer in the same or opposite breast, screening mammography rates for US women are lower than expected.4 The long-term effects of cancer therapy may manifest as other health problems, such as secondary leukemia, cardiomyopathy, or osteoporosis, in addition to the psychological impact of a cancer diagnosis.5

If survivorship care is to be effective and tailored to individual patient needs, it will be imperative to accurately gauge patients’ understanding of their breast cancer treatment and knowledge of future health risks. Consequently, we set out to identify patients’ general knowledge of their breast cancer diagnosis and treatment, examine factors that may be associated with patients’ recall of treatment, and assess patients’ perceived risks for relapse and future problems.


Study Design

We conducted a survey of patients who were identified from the Baystate Medical Center tumor registry who presented with breast cancer between 1997 and 2007. The women had ongoing follow-up with a medical oncologist or with a breast cancer survivorship clinic with guideline-based surveillance but no survivorship care plan (SCP) and were initially treated by the present investigators. After confirmation of study eligibility (stage I-III disease, no distant relapse, age >18 years, able to complete questionnaires, and 1-10 years since diagnosis), an invitation-to-participate letter was sent by each patient’s physician.

The patients were asked to return the stamped preaddressed postcard indicating their interest in participating in the study, and then were mailed a consent form and the questionnaire. For most patients, the questionnaire was administered by the research associate over the phone, with the questionnaire in hand, and then returned by the patient along with the signed consent form. Some patients completed the questionnaire with a study representative, in person, before a prescheduled clinic visit.

Survey questions addressed the laterality of breast cancer; stage and hormone receptor status of the tumor; and surgical, radiotherapy, chemotherapy, and hormonal treatments. Age, ethnicity, family history of cancer, socioeconomic status, and educational level were queried. Patients were asked to estimate their risk for local and distant breast cancer relapse as 0% to 10%, 10% to 30%, 30% to 60%, or >60%. They were asked whether they perceived their risk for contralateral breast cancer, other cancers, and benign ailments as being less than, the same as, or greater than that of women without breast cancer. Patients also were asked to share behavior changes and express concerns relating to their cancer diagnosis, which were reported separately.6

Data on HER2-neu were not collected or included in the survey, given the standard of care during the study period. Medical records were reviewed subsequent to consent and completion of the questionnaire to verify and compare the elicited information. The study was approved by the Institutional Review Board of Baystate Medical Center.

Statistical Analysis

Descriptive analyses were used to determine the distributions of variables collected during the study. Univariate measurements were analyzed using t-tests for continuous variables, chi-square tests for categorical data (with the Cochrane-Armitage test for trend if suitable), and Spearman correlations, as appropriate. The McNemar test was used to compare paired nominal data (such as hormone receptor status, use of chemotherapy, and specific local therapies) between patient recall and medical record information.

Exploratory multivariate logistic regression models were constructed; individual variables with significance in univariate analyses of P <.20 were selected for consideration of incorporation into these models; and only cases with complete data for all considered variables were used in developing these models. Univariate and logistic regression results were compared. A statistical program (JMP 10; SAS, Cary, NC) was used to assist in calculation; all P values reported are 2-sided.


Letters were sent to 1022 eligible women; the first 300 patients who agreed to participate were enrolled in the study. Table 1 describes the patients’ characteristics. Most patients were older and had earlier-stage, hormone receptor–positive tumors; 56% received chemotherapy. In general, the participants were well-educated; 65% possessed college degrees and 56% had an annual income of $50,000 or more. Table 2 summarizes factors associated with correct recall.

Overall, 53.3% of patients recalled their stage of disease correctly (Figure). Of those who did not, 26% underestimated and 17% overestimated the stage of their cancer, whereas 57% could not recall the stage. Univariate associations with correct recall of disease stage were younger age (mean, 58 years ± standard error [SE]; 0.76 vs 63 ± 0.83; P <.001), white race (55.8% vs 30% nonwhite; P = .024), higher income (ptrend = .003), and higher educational attainment (ptrend = .001). Correct recall of disease stage was not associated with the number of years since diagnosis or the treating oncologist. According to multivariate logistic regression analysis, age at time of study participation and white race were independent variables.

Most (74%) patients who could recall the hormonal status of their tumor did so accurately according to their documented pathology (P = .37, McNemar test; Figure). Only 2.9% of patients with estrogen receptor (ER)-positive tumors believed that their cancer was ER-negative, and 1.7% of patients with ER-negative tumors believed they had ER-positive disease. Patient recall of progesterone receptor (PR) status was less accurate; 3.4% of patients with PR-positive tumors believed they had negative tumors, and 9.1% of patients with PR-negative tumors believed they were positive. However, 78 (26%) patients could not recall the hormonal status of their tumor.

The inability to recall hormonal status was associated with older age (mean, 64.8 years ± 0.6 for those who could not recall vs 58.9 years ± 0.6 for those who could; P <.001), nonwhite race (55.8% vs 22.6% for whites; P = .001), lower annual income (36% with incomes <$50,000 vs 14% with higher incomes; ptrend <.001), and lower educational attainment (41% with less than college vs 14% with college or more; ptrend <.001).

The number of years since diagnosis was not associated with inability to recall hormonal status or the treating oncologist. In multivariate analysis, age, white race, and educational attainment were independent predictive variables for the ability to recall hormone receptor status.

The majority (98.2%) of chemotherapy-treated patients recalled receiving chemotherapy, but only 60% of patients recalled accurately the chemotherapy regimen they received, even when choosing from a list of regimen drugs or acronyms; 28.6% did not attempt to recall a regimen at all (Figure). The univariate variables associated with accurate recall were younger age (mean, 55.3 years ± 0.84 for those who recalled vs 60.2 years ± 1.03 for those who did not; P = .004), white race (64% accurate recall vs 14% for others; P = .002), higher income (67% of those with income >$50,000 vs 52% with lower income; ptrend = .008), and higher educational attainment (66% of those with at least college vs 47% with less education; ptrend = .025).

Multivariate regression analysis also showed significant associations for age (P = .008) and white race (P = .0012). Of the 149 patients treated with an anthracycline, 42 (28%) either incorrectly stated that they had not received an anthracycline drug or could not recall therapy with an anthracycline, even though a positive response to receiving any anthracycline was accepted as correct.

Recall of Hormonal Therapy

Overall, 242 (81%) patients received some form of adjuvant hormonal therapy; 55% received tamoxifen, 35.7% received anastrazole, 18% received letrozole, and 13.6% received exemestane. (Because of intolerance or sequential therapy, some patients received more than 1 hormonal agent.) The majority (96%) of patients who received hormonal therapy recalled receipt of their medication (Figure). Whereas most (95.1%) tamoxifen recipients reported receiving tamoxifen, only 49.5% of anastrazole-treated patients accurately reported receiving this medication (P = .0018); similar results were found for recipients of letrozole and exemestane (20.3% and 10%, respectively; P <.001 for both).

The majority of patients who received adjuvant aromatase inhibitors acknowledged receiving hormonal therapy, but reported only tamoxifen. This was at least partly because many patients who received aromatase inhibitor therapy had also received tamoxifen (particularly letrozole [74%] and exemestane [85%] but also anastrazole [41%]) sequentially, although the aromatase inhibitor was the most recent medication in the overwhelming majority. Aromatase inhibitor recall accuracy for patients without previous tamoxifen treatment was better (anastrazole 84%, letrozole 71%, and exemestane 50%) and not significantly different from tamoxifen results when considered as a group (P = .42). Patients who accurately recalled their hormonal therapy had higher annual income (P = .009). Age at participation, education, race, and the treating oncologist were not associated.

Perceptions of Risk of Breast Cancer Recurrence

Patients perceived a higher risk of breast cancer recurrence than would be expected. Patients’ reported rates (impressions) of distant relapse did not correlate (Spearman P = .30) with the rates of distant relapse calculated by Adjuvant! Online; the rates were consistently higher than Adjuvant! Online estimates (P <.001).

Although half of the patients believed their risk of local recurrence ranged from 0% to 10%, the remainder felt it was substantially higher (31% believed the risk was between 10% and 30%; 19% felt it was >30%), despite the fact that all patients had undergone a mastectomy or breast-conserving therapy. Those who underwent mastectomy reported lower expectations of local relapse than those who received breast-conserving therapy (70.3% of mastectomy recipients anticipated local relapse rates of 0% to 10% vs 43.2% of patients receiving breast-conserving therapy; ptrend = .005), but the anticipated rates of distant recurrence were similar.

Patients who identified their disease stage correctly felt at higher risk for both local (ptrend = .033) and distant recurrence (ptrend = .041) than those who did not. Patients who could not recall their stage tended to feel that their risk for local relapse was lower than did those who attempted (accurately or not) to report the stage (ptrend = .038); rates of distant relapse did not differ (ptrend = .12). Recipients of adjuvant chemotherapy perceived a higher-than-calculated likelihood of distant relapse (ptrend = .003) and local recurrence (P = .057). Hormonal therapy in general, and tamoxifen therapy specifically, were not associated with perceptions of either local or distant recurrence. Older patients reported lower perceptions of the risk for distant relapse (P = .045) but not of local recurrence.

Perceptions of Risk for Developing Contralateral Breast Cancer

Overall, 31 (10%) patients had contralateral breast cancer before the study; of the remaining 269 subjects, two-thirds felt that their risk for contralateral breast cancer was higher than that of the average woman; 5% felt that their risk was lower. Patients who felt that their risk for contralateral breast cancer was higher were younger (mean, 59 years ± 0.72 vs 61.5 years ± 1.09 for those who perceived the standard risk and 66.2 years ± 2.64 who perceived a lower risk; P = .012), had higher annual income (Spearman P = .002), and were white (ptrend = .032). No association was found for educational attainment, patient report of hormone receptor status, the treating oncologist, or recall of chemotherapy or hormonal therapy in general; however, tamoxifen-treated patients tended to perceive higher contralateral breast cancer risk (P = .042).

Perceptions of Risk for Other Malignancies and Ailments

Impressions of increased risk for second cancer varied according to specific malignancies (eg, ovarian 42.7%, colon 31%, lung 28%); higher income and educational attainment were consistently associated with increased risk impressions for second cancers but not for benign ailments. Chemotherapy recipients perceived increased risks for osteoporosis (P = .011), ovarian cancer (P = .055), and heart failure (P = .060). Tamoxifen recipients felt at increased risk for endometrial (P = .016) and ovarian cancer (P = .029); anastrazole-treated patients perceived an increased risk for hypertension (P = .009), hypercholesterolemia (P = .0056), heart failure (P = .028), arthritis (P = .065), local recurrence (P = .005), and distant recurrence (P = .0025).


In 2005, the Institute of Medicine published a report on cancer survivorship detailing difficulties with current care,7 which led to major commitments from cancer advocacy organizations toward advancement of cancer survivorship care.8,9 As the number of patients living far beyond their cancer diagnosis continues to grow, survivorship will attain increasing importance.10,11 Understanding the completeness and accuracy of patients’ knowledge of their disease and treatment may help guide us in the provision of services and education to address deficits.

Overall, 25% of our study population could not recall the hormone receptor status of their tumors, regardless of whether they had received hormone-based adjuvant therapy. Furthermore, 40% of chemotherapy-treated patients could not recall the regimen they had received, and 28% of anthracyline-treated patients did not recall this treatment, despite having drug names and acronyms displayed in front of them, as well as clear interpretation of their responses. Patients who received an aromatase inhibitor tended not to recall this if they had previously received tamoxifen therapy.

In addition, nearly 50% of the patients could not correctly recall the stage of their disease, a finding similar to that of Nissen and colleagues, who found that 40% of breast cancer survivors could not identify their stage.12 Consistent with our findings, a recent study by Freedman and colleagues showed that 20% to 58% of a cohort (N = 500) of breast cancer survivors correctly reported stage and receptor status, with black and Hispanic women less likely to have correct answers.13

Reliance on patient reporting may lead to inaccurate data on such clinically crucial questions; for most of these results, erroneous reporting was linked to patients who were older, had lower educational attainment and annual income, and belonged to minority groups. In a study of older breast cancer survivors, the recommendation was made to tailor SCPs to geriatric-specific issues.14 Our data support the consideration of patients with specific needs when developing educational offerings for survivorship programs and when documenting novel treatments.

The rates of local recurrence among women who have undergone breast-conserving therapy are low overall, ranging from 1.8% to 14% at 10 years, with lower rates seen after the use of systemic therapy.15-17 Only 43% of breast-conserving therapy recipients in our study felt that their risk for local recurrence was less than 10%; many patients who underwent mastectomy also substantially overestimated their risk for local recurrence. Most patients correctly perceived that having a breast cancer diagnosis places them at higher-than-average risk for contralateral breast cancer; however, our study did not quantify this overestimation.

Abbott and colleagues described substantial overestimation of contralateral breast cancer risk (31% in 10 years) among 74 patients with early-stage breast cancer; 17% opted for contralateral prophylactic mastectomy.18 Even women with ductal carcinoma in situ overestimated their risk for local and distant recurrence 5 years after diagnosis.19 Our experience shows that misinterpretation of risk for local recurrence and contralateral breast cancer at the time of diagnosis, or years later, may impact treatment decisions groundlessly, may limit adherence to proved surveillance and risk mitigation strategies, and suggests the need for more effective education concerning treatment decisions.

Liu and colleagues queried women with invasive and noninvasive breast cancer regarding risks for recurrence and calculated a 10-year cumulative risk estimate from the literature, using Adjuvant! Online.20 They also inquired about risk perceptions of local recurrence, contralateral breast cancer, and distant disease as a single question.20 Only 17% of survivors were accurate in estimating their risk for recurrence at 6 months, and even fewer were accurate at 1 year; however, 44% underestimated their risk,20 unlike our findings of substantial overestimation more than 1 year after diagnosis.

Perceptions of elevated risk for second cancers were observed for common cancers in our study; patients with higher income and educational attainment felt at higher risk for subsequent malignancies; no such finding was noted for benign afflictions. Other investigators have proposed that anxiety plays a role in risk perception,21 which we did not measure in our study, but it was described in another report of patients at risk for cancer.22 Inaccurate risk perceptions raise concerns about provider communication. Although our study did not address the impact of physician information exchange on the results, we were unable to find any variable that was affected by the treating oncologist.

The desire to enhance the knowledge base of breast cancer survivors has led to a call for the use of SCPs. We have previously demonstrated the usefulness of SCPs to enhance coordination of guideline-based follow-up of breast cancer survivors.23 However, receipt of an SCP at the time of transfer of surveillance care to primary care physicians did not improve outcomes such as cancer-related distress, quality of life, general health status, or psychological distress.24

The current study, conducted before the use of SCPs, demonstrates that survivor impressions of disease risk varied according to demographics such as age, race, and socioeconomic factors. A focused effort to provide customized education, support, and enhanced healthcare documentation to these populations is worthy of future research on the role of SCPs in patient safety and surveillance guideline compliance.


This retrospective study has obvious limitations. We did not assess psychosocial variables or ask survivors to quantify their perceptions of risk for second malignancies.

Minorities represented a relatively small proportion of study participants.

The study used a convenience sample of first responders among all invitees, and it is probable that the variables found associated with recall and perceptions could have been affected by the recruitment method and the participants’ decision to participate.

However, we postulate that patients sufficiently motivated to participate in this study would have been more engaged in their care and, consequently, more knowledgeable about treatments and risks, suggesting that the gap in knowledge may be even larger for nonparticipants.


Overall, as oncology providers we need to do a better job at educating women with breast cancer about their risks for disease recurrence, how each specific intervention contributes to risk reduction, and what specific risks mean in the context of their overall health. Although it is common to discuss risks at the time of cancer diagnosis, discussions about residual risks after cancer treatment completion and the passage of time are more difficult, particularly for older patients with hormone receptor–positive disease. In a setting of constrained resources, research focused on targeted populations may lead to more effective interventions than a “one-size-fits-all” approach that, up to now, has yielded few benefits. Future areas of investigation should address whether erroneously high perceptions of disease relapse risk and second malignancies encourage health behavior changes or, alternatively, stimulate requests for unnecessary procedures and deviation from evidence-based surveillance guidelines.

We thank Robert Lufkin, DO, and Yassr Rehman, MD, for their assistance, and especially thank Ruth Barham for her tireless dedication to this study.

Funding Source
This study was funded by Rays of Hope, Springfield, MA.

Author Disclosure Statement
Dr Makari-Judson, Dr Loke, Dr Katz, and Dr Mertens have no conflicts of interest to report.


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