Patient perspectives on breast cancer treatment side effects and the prospective surveillance model for physical rehabilitation for women with breast cancer†‡§¶
The articles in this supplement were commissioned based on presentations and deliberations at a Roundtable Meeting on a Prospective Model of Care for Breast Cancer Rehabilitation, held February 24-25, 2011, at the American Cancer Society National Home Office, in Atlanta, Georgia.
The opinions or views expressed in this supplement are those of the authors, and do not necessarily reflect the opinions or recommendations of the editors or the American Cancer Society.
A Prospective Surveillance Model for Rehabilitation for Women With Breast Cancer, Supplement to Cancer.
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Women's experience of breast cancer is complex, affecting all aspects of life during and after treatment. Patients' perspectives about common impairments and functional limitations secondary to breast cancer treatment, including upper extremity motion restriction, lymphedema, fatigue, weight gain, pain, and chemotherapy-induced peripheral neuropathy, are addressed. Women often report being uninformed regarding these side effects and surprised that they do not always disappear after treatment, but remain part of their lives. Breast cancer patients express strong, unmet needs for education, information, and intervention for these side effects. Evidence suggests that rehabilitation and exercise are effective in preventing and managing many physical side effects of breast cancer treatment. Nevertheless, few women are referred to rehabilitation during or after treatment, and fewer receive baseline assessments of impairment and function to facilitate early detection of impairment and functional limitations. The prospective surveillance model of rehabilitation will serve the needs of women with breast cancer by providing education and information about treatment side effects, reducing the incidence and burden of side effects through early identification and treatment, and enhancing access to timely rehabilitation. Integration of exercise as a component of the model benefits patients at every phase of survivorship, by addressing individual concerns about exercise during and after treatment and highlighting the important contribution of exercise to overall health and survival. The prospective surveillance model of rehabilitation can meet the evident and often expressed needs of survivors for information, guidance, and intervention—thus addressing, and potentially improving, overall quality of life for individuals diagnosed with and treated for breast cancer. Cancer 2012;. © 2012 American Cancer Society.
Women's experience of breast cancer is complex, affecting all aspects of their lives during and after treatment. Although each woman's experience with breast cancer is unique, they share common perspectives related to the physical and functional side effects of breast cancer treatment. Activity limitation, upper extremity motion restriction, lymphedema, fatigue, pain, and chemotherapy-induced peripheral neuropathy (CIPN) are well-documented concerns of breast cancer survivors.1-5 Impairments such as limited range of motion, pain, and fatigue appear to be inter-related, and may have an additive effect. Women note that upper extremity issues, fatigue, pain, depression, and body image disturbance tend to compound each other and impact quality of life.6-9 Less information is available about women's concerns regarding other treatment side effects addressed in this supplement (eg, arthralgias, osteoporosis, and cardiotoxicity). This may be because of lack of awareness of these potential long-term side effects, as research about their prevalence and time course is more recent. Cumulatively, these observations provide strong evidence of an unmet need for cancer patients generally, and breast cancer patients specifically, for information and intervention related to treatment side effects.10
This supplement introduces a prospective surveillance model for physical rehabilitation for women with breast cancer (see Stout et al in this supplement).11 The model's goals are to facilitate patient education, early detection, and rehabilitation intervention for physical impairments related to breast cancer. Paralleling the trajectory of medical management, the model includes diagnosis and treatment planning, postoperative, and adjuvant treatment/survivorship care phases. The model includes baseline assessment and ongoing surveillance for upper extremity dysfunction, lymphedema, fatigue, weight, pain, neuropathy, arthralgias, osteoporosis, and cardiotoxicity. Based upon a review of recent literature, this paper presents the patient perspective for the proposed model. After a description of the search methods used, findings are presented in 4 areas: physical impairments related to breast cancer treatment; activity and performance limitations; education, information, and support; and exercise and rehabilitation intervention. We conclude by making a case for the prospective surveillance model, based on our findings from the recent literature, including the voices of the women themselves captured within the quotes from qualitative studies.
Qualitative and quantitative studies were our primary sources, with data collected through systematic interviews, questionnaires, and focus groups. We searched MEDLINE and CINAHL from their inception through July 1, 2011, focusing on publications within the past 10 years. Key search words included “breast cancer,” “patient perspectives/perceptions,” “rehabilitation,” “qualitative research,” “exercise,” “patient education,” and “education,” as well as each physical impairment addressed in the prospective surveillance model outlined above. We limited our inclusion to English-language articles and those that focused on participants with primary rather than metastatic breast cancer. All authors were involved in the search and review process. Selection criteria included all articles that addressed 1 or more of the impairments, education needs, and/or exercise issues from a patient perspective. Relevant studies were found for all impairments except cardiotoxicity and osteoporosis.
Physical Impairments Related to Breast Cancer Treatment: Problems and Patient Perspectives
Women report being unaware of the side effects of treatment and express surprise that pain, fatigue, and impaired upper extremity movement do not always disappear after treatment but remain part of their lives, even years later.3 As women begin the process of moving on after treatment, they often experience lingering physical symptoms that are ongoing reminders of their breast cancer3 that may increase fear of recurrence.12
“It sounds trite, but I thought I was going to get through surgery and then chemo and then it would be over. But it is far from over and I never really expected that.”3
Other women withhold concerns because they believe disabling side effects are a normal part of breast cancer treatment. Some fear bothering their physicians and loved ones with unreasonable complaints.3
“I felt that I was bothering [the physician], and I didn't want to do that because if he got sick of me…then where would I be? The thing is, you don't know what your new normal is, and you are afraid that every little symptom is cancer again.”3
Upper extremity and trunk dysfunction
Short-term effects of breast cancer treatment on the shoulder, trunk, and neck are widely acknowledged. However, studies demonstrate that shoulder problems can occur or extend well beyond 1 year post-treatment, varying greatly in prevalence and severity (see Hayes et al in this supplement).13-15
“It's now 14 months since my operation and I still find if I stop doing exercises altogether, it's kind of a muscle tightness [that] sets in after some time.”7
Patient perceptions of dysfunction often differ from objective measures, with the latter frequently underestimating patient-reported problems.16-18 Patients' body structure, age, individual expectations, and ability to adapt over time may influence the extent of their reports.19-21 Satariano and Ragland21 found that women 12 months postdiagnosis were 40% to 60% more likely to report 1 or more upper-body limitations (pushing, lifting, and reaching) than age-matched controls, with the actual proportion varying somewhat across 4 age groups, ranging from 40 to 84 years old.
“I think that the biggest functional deficit that I have is related to the TRAM [breast reconstruction] in that I have adequate upper extremity muscle strength but I can't set my abdominals…I can no longer get the bags of mulch out of the car.” (Source: unpublished data collected in qualitative study by Levangie et al.4)
“I went to the first (exercise class) and I thought my movement was great. I thought to myself this is a bit of a waste of time but I'll go anyway and I did the warm up and I went through with them, and I thought this is very easy. Then she did it twice and I was thinking, oh my God. It wasn't that I didn't have the range of movement, it was that I couldn't hold positions for as long as I thought I could and I didn't have the strength I thought I did.”7
Miedema et al22 found that 48.5% of women who completed a survey less than a year after breast cancer surgery reported difficulty with activities requiring “some force or impact,” and 44% reported limitations in activities that involved “moving their arm freely.” Women >2 years postdiagnosis (median, 5.9 years) encountered similar difficulties.4
“When I go to throw a ball, I can't get my arm up there. I don't have the mobility that you need for throwing and that kind of thing.”17
Qualitative research suggests that patients need ongoing and long-term attention to shoulder and trunk issues:
“I'm still amazed at how much stretching you have to do of that tissue, and it's been a whole lot of years since [my treatment]. I can remember talking to people about stretching, but after you got range back, you thought you were home free and, boy, that's not true.”17
“I wish that the oncologist would have said that there are some effects that are going to occur 3 and 4 years out.”4
Lymphedema and the risk of lymphedema impose limitations on women's lives. Some women report more distress related to the threat of lymphedema than with breast cancer itself.23, 24 Lymphedema is a well-recognized global problem, with studies from Iceland, Scandinavia, Australia, Canada, and the United States (see Hayes et al in this supplement).15, 25-29 Across studies, results are consistent: lymphedema treatment, or the fear of acquiring it, causes lifestyle modifications; lymphedema is a persistent reminder of breast cancer; lymphedema and its treatment have potential psychosocial consequences, with changes in self-image and increased anxiety; and patient frustration occurs because of limited support and inadequate or conflicting education from health care providers.2, 3, 6, 30-35
In several studies, women reported limitations resulting from strategies they understand will prevent or reduce lymphedema: for example, advice to refrain from repetitive activities, strenuous exercise, and lifting, and to avoid sunburn, hot tubs, insect bites, and venipunctures that may trigger or worsen lymphedema and/or cause cellulitis.3, 6, 29
“I'd like to reach down and lift up my little granddaughter, but I don't do that, I modify my actions.”30
Many of these prevention strategies are not based on current research. For example, there is compelling evidence for the safety and benefits of exercise to decrease lymphedema risk,36, 37 and suggestions that elevated body mass index (BMI) increases lymphedema risk.38, 39 However, patients continue to be warned against strenuous upper body activity but are often not informed about the relation between BMI and lymphedema risk.38, 39
Issues that relate to the psychological impact of lymphedema40, 41 include cosmetic concerns and body image,25, 42 social stigma,23 and the complexity of treatment itself. Lymphedema management may include daily manual lymphatic drainage, compression sleeves, or bandages. Risk reduction measures and treatment of lymphedema can be cumbersome, costly, and time-consuming.
“Giving my daughter…a bath was hard. It wasn't that I was not capable, it was just a huge production to remove 8 layers of bandages, roll them up, and rewrap my arm. It's time consuming.”32
Even after successful treatment for the primary cancer, women see lymphedema as a constant reminder of breast cancer, to themselves as well as to friends and family.3, 7, 30, 31
“It is my mortality reminder each day.”31
Self-image issues related to lymphedema have been documented extensively. Women find lymphedema hard to conceal and report that compression garments are unsightly, uncomfortable, and impact clothing options. Others' reactions can affect a woman's self-image.
“…I stood in front of the mirror and started crying. The sleeve was so un-feminine. It was just awful.”25
“…You notice that people are looking at you all the time or people are constantly asking me: What's happened to your arm? So it mostly attracts attention.”25
Knobf and Sun43 found that survivors experience increased psychological distress when they believe they are unprepared for outcomes such as lymphedema. Health professionals provide limited support and information about lymphedema; this dearth of information may delay diagnosis and intervention, increasing the burden of lymphedema on both the patient and the health care system.7, 23, 44
“Frankly no one told me that these problems were going to be part of my life.…They acted like I just needed to get through treatment and then things would return to normal. It really bothers me because no one tells you these things are going to last for a long, long time.”2
Treatment-related fatigue is among the most distressing impairments associated with cancer (see Berger et al in this supplement).5, 45 Patients describe it as different from tiredness because of overwork or lack of sleep, not relieved by adequate rest or sleep, and interfering with usual daily activities.46 Fatigue is an issue across all stages of breast cancer and a significant concern for women with metastatic breast cancer, yet health care providers underestimate its incidence and impact.5
In a quantitative survey, 379 cancer patients were questioned about unanticipated toxicities of treatment. Of the 250 who were breast cancer patients, 75% reported fatigue as a significant concern before treatment and 80% as a post-treatment concern.47 In 2 small (n = <11) qualitative studies, women with breast cancer described fatigue as overwhelming, nonstop, and unrelieved by rest, restricting their activities of daily living and altering usual activity patterns.48, 49
“I couldn't overcome it. I couldn't force myself…the fatigue was overwhelming…there would be times when you might be tired but you can make yourself do it anyway. I couldn't make myself do things anyway during certain phases of it. So it was just overwhelming, it kind of took over my life…”48
In another qualitative study of 13 women, 1 to 18 years after breast cancer treatment, participants reported fatigue and loss of energy that lingered for years.3
“I feel anger at the loss of energy. I used to hop on my bike, think about studying for a doctorate, but all that gets disrupted. Everything is disrupted. I get mad because I never knew that I would have to learn to live with this.”3
Treatment-related weight gain affects >50% of women (see Demark-Wahnefried et al in this supplement).49, 51 However, in a study of unanticipated treatment-related toxicities, only 27% of participants expressed concern about weight gain before chemotherapy.47 This suggests that women may not be aware of the risk of weight gain related to breast cancer treatment, because they often report great distress after weight gain and changes in body composition.52 The issue of weight gain is critical to patients, as it relates to body image, but is also a risk factor for impairment and poorer outcomes of treatment (see Demark-Wahnefried in this supplement).49
“My weight is distributed differently. I never had this (pointing to the lower portion of her abdomen) before; it looks like a 55-year-old woman. I never had that, but since I went through menopause, I can see changes in the way my weight is distributed.”52
In a focus group study exploring experiences of weight change in 34 African American breast cancer survivors, an ethnic group particularly vulnerable to weight gain after breast cancer treatment, 47% of participants reported gaining weight.
“…this is the heaviest I've ever been. So it's very, very frustrating. Because I know that I'm not eating to the point that I should gain weight. Why can't I lose weight? You know I walk a lot during the day…and the weight just won't go off.”53
Many women stated they would have liked more information about how to prevent or minimize weight gain.52
Ongoing pain after treatment is an unexpected reality for some women with breast cancer and may create anxiety about cancer recurrence.3 Cancer patients report lack of knowledge regarding cancer pain, what to expect in terms of pain relief, and how to access support.54 Barriers to asking questions about pain include fearing the answer, that it is inevitable, and that concerns about pain will be ignored.54 A substantial number of women who undergo axillary lymph node surgery continue to experience pain or physical discomfort during the year after treatment.14
“[My shoulder] does bother me at extremes and midrange of motion. I've also had problems in the thoracic spine just lateral to that area—a lot of pain. I've had upper thoracic back pain for over a year and a half.”18
Arthralgias, a common side effect of aromatase inhibitors, can produce painful mobility limitations and impact activities of daily living (See Winters-Stone et al in this supplement).55, 56 One woman reported that “she felt like a 100-year-old woman” since starting aromatase inhibitors, and was concerned the treatment was causing her body to age faster than normal.56
Symptoms of CIPN include numbness, tingling, weakness, and pain that can impact function and activities of daily living, as well as impair balance, leading to falls and injury (see Stubblefield et al in this supplement).1, 57 Patients report that CIPN symptoms are often dismissed by health care providers, and express frustration about conflicting information on expected severity and longevity of symptoms.
“I had such severe neuropathies that the only thing that could decrease the pain—the fiery, burning pain—was to keep my hands and feet in ice. My feet and my hands are still very sensitive so I'm very mindful when I'm doing activities with respect to temperature changes in particular.” (Source: unpublished data collected in qualitative study by Levangie et al.4)
More than 1 year after treatment for early stage breast cancer, a former Marine spoke about the taxane-associated neuropathy she continues to experience:
“I could barely believe [the neuropathy in] my feet. I couldn't do simple things like open jars. I think my (military) training was good in being able to get through it, but until you've gone through it, you don't understand.”58
These issues may be more pronounced and distressing for women with metastatic breast cancer because of increased exposure to taxanes, antimetabolite chemotherapies, and other standard medications associated with peripheral neuropathy.59 For these women, CIPN poses both psychosocial and physical problems that may lead them to decrease or halt potentially effective treatments because of dose-related toxicity.1, 60
Activity and Performance Limitations: Issues and Patient Perspectives
Women describe significant gaps between postoperative expectations and the reality of functional limitations, expressing needs for more information to plan for needed support after surgery.7
“[In the] first week post-op [it was] virtually impossible to do my usual physical tasks…complicated by drains.”7
Women report shock at the impact that pain, limitation in range of motion, and fatigue have on daily life.3 Restrictions in activities of daily living are compounded by lack of preparation and a sense of being misunderstood. Limitations that impact child care, such as difficulty lifting, carrying, or bathing a child, are among the most distressing.3
“It bothered me so much because I could only pick the baby up if I favored my left side. I had to constantly maneuver myself.”3
In a phenomenological study including 10 women with breast cancer, participants reported significant activity limitations.61
“I just wanted to be able to get more of a range with this arm because it meant the end of my golf—if I couldn't swing it all the way up.”61
“Obviously, I gave up playing tennis. I gave up playing volleyball. I can't do any of my upper extremity sports. I still ski; I just don't pole-plant anymore.”17
Women also need to attenuate or adapt activities even years after finishing treatment.4
“I'm finding ways to keep [working] full-time that don't worsen my upper extremity symptoms so that I can still have quality of life. I still go to the gym for a resistance training program.…It is a daily decision that I have to make and adapt depending upon what symptoms are present.4”
For many women, decisions about continuing or returning to work outside the home can be difficult.62, 63 A literature review identified issues that influenced women's decisions and experiences of working during treatment, including uncertainty about physical appearance and concerns about ability to work and losing jobs. Once treatment ends, limited concentration, arm issues, and fatigue can interfere with return to work.62, 64
“I used to paint, but now this situation [arm problems after breast cancer] does not help me, so I don't really work…I cannot paint…so I cannot work.”64
Education, Information, and Support: Deficits and Patient Perspectives
Recent studies report a desire among patients for education, information, or support related to physical impairments or activity limitations, particularly from treating physicians and surgeons. Several studies suggest a need for education and awareness among health care professionals.4, 7, 34, 65
“I was given no advice as to when to start exercising after surgery, hence I did not begin exercise for about 5 weeks! In fact, not much advice [was] given about exercise at all!”34
In 1 study,7 the authors reported that some women received education on lymphedema from hospital physical therapists, but others felt unprepared or “dumped by the hospital.” In the same study, a participant commented positively about the information she received about lymphedema: “My experience was that I was given the information and I knew about it.”7 In contrast, a patient in another study65 bemoaned the lack of information from her surgeon:
‘It doesn't help him being a good surgeon, which he is, but I didn't get the information I needed—he only said ‘everything’s fine, the operation went well.’”
In a phenomenological study from the United Kingdom that included 15 people with lymphedema,23 1 woman with breast cancer-related lymphedema commented that the lack of information and awareness of lymphedema within the hospital setting made her feel like “fishing in the dark.”
Women report getting conflicting advice about using their arm after surgery.34
“I was given very conflicting advice on the day of discharge from hospital for removal of lymph nodes. Nursing staff insisted I rest the arm completely for at least the period of time I had the drain in [about 2 weeks]. [The] physician also came in that morning and his words were, ‘Whatever you do, don't carry your arm like a broken wing—use it as much as you can.’”34
Several studies highlight the importance of emotional and physical support to cope with physical impairments and activity limitations. One woman recounted positively: “My father-in-law would come out and visit and say ‘Right, what you want done in the garden?’”7 Others found unexpected but welcome psychosocial support from a group exercise program at a private breast clinic, commenting that the social interaction and information proved at least as beneficial as the exercises.7
Recommendations common to 2 or more of these 5 studies are: 1) health care services provided by breast centers should be based on needs defined by the patients themselves4, 65 and individualized to each patient's specific needs34, 65; 2) education, information, and support related to physical impairments and activity limitations should be provided by interdisciplinary care teams4, 65; and 3) health care providers should provide consistent, evidence-based advice and education about exercise and physical activity indications and contraindications.7, 23, 34
Exercise and Rehabilitation Intervention: Patient Perspectives
Evidence suggests that rehabilitation and exercise are effective in preventing and managing many physical side effects of breast cancer treatment.36, 37, 66-73 Nevertheless, few women are referred to rehabilitation during or after treatment,74 and fewer receive the baseline assessments of impairment and function that would help distinguish between treatment-related side effects and pre-existing problems. The few women aware of the benefits of rehabilitation must often advocate to receive care.61 Lattanzi et al61 reported that providers did not refer patients until they lost range of motion or experienced arm swelling.
“Since I pushed it and pushed it [rehabilitation], he finally said, ‘okay, here's your referral.’”61
“That is something your physician doesn't tell you though, about going to physio[therapy], they never say to you, you should go to physio and you should. It really helps you.”7
In a landmark prospective observational study, walking 3 to 5 hours per week at an average pace (or taking part in a comparable activity) decreased risk of breast cancer recurrence by 43% and risk of dying from breast cancer by 50% in women previously treated for stages I to III breast cancer when compared with women who were physically active <1 hour per week.66 These findings have been replicated in later studies.75, 76 Research shows that physical exercise enhances quality of life and physical function during active treatment with chemotherapy and/or radiation, as well as post-treatment.77 Other studies incorporated resistance exercises, such as weight training, into intervention protocols, demonstrating success in maintaining bone mineral density, increasing lean muscle mass,78, 79 and enhancing self-perceptions of body image in women with lymphedema.80 Although upper extremity resistive exercises were previously contraindicated for women with or at risk for lymphedema, recent research has shown them to be safe and demonstrated no increased incidence36 and no exacerbation of pre-existing lymphedema.81 Despite the positive effects of physical exercise that include overall health benefits, reduced risk of recurrence, and minimization of treatment side effects, almost ⅔ of breast cancer survivors do not meet the American Cancer Society physical activity recommendations.82 Reasons for this include treatment side effects such as pain, fatigue, stage of disease, depression, and level of exercise before diagnosis.53, 83-86 As 1 patient describes:
“Try to do the exercises even on the days you don't feel like it, because you will feel better.”87
Exercise may need to be attenuated during treatment because of fatigue and other treatment side effects. In a qualitative study involving 12 people with breast cancer who experienced cancer-related fatigue,88 factors that facilitated exercise were group programs involving other cancer patients that were individually tailored and supervised and that progressed gradually. As 1 participant stated:
“If I went to a normal class, I would feel very peculiar…and I think you need to feel that you are surrounded by people that at least have some idea…of what you are going through.”88
One of the most popular and visible group sports for women with breast cancer is Dragon Boat racing. Since the first breast cancer Dragon Boat team competed in international races in Vancouver in 1996,89 more than 140 teams have formed in 13 countries around the world.90 Several qualitative studies describe the impressions of women involved in this sport,91-93 most reporting overwhelmingly positive experiences about the physical and psychosocial aspects of racing.
“Mentally, emotionally…physically. I just feel stronger. I feel stronger and more alive.…My whole life has changed. Like, everything's more in perspective…things that I used to worry about or get all upset about, I don't anymore. I just think it's not that important. I think everybody you talk to, you'll find that their whole life, their perspective on life, has changed.”91
Limitations of the Review and Future Research Directions
The participants referenced in the patient perspective studies cited range from 30 to 81 years of age and from several months to >10 years after diagnosis. Patients from a variety of countries are included by the studies, including the United States, United Kingdom, Canada, Australia, the Netherlands, Germany, and Spain. The majority of participants, however, are university-educated, middle-aged (40-60 years), and Caucasian, limiting the generalizability of our findings. Effects on patient perspectives of variables such as stage of breast cancer, education, culture, race/ethnic background, and treatment setting have received little attention. Future research should assess the impact of these variables on patient perceptions of impairment and function during and after treatment.
The Case for the Prospective Surveillance Model for Physical Rehabilitation for Women With Breast Cancer From a Patient Perspective
The foregoing studies strongly suggest patient demand for consistent, evidence-based care to anticipate, prevent, and treat the short- and long-term side effects of breast cancer interventions. The prospective surveillance model of rehabilitative care (see Stout et al in this supplement)92 could fulfill this demand and address the physical impairments, activity limitations, and performance restrictions related to breast cancer treatment.
Patients are likely to benefit from each phase of the proposed model, but its limitations must be examined also. Lattanzi et al61 reported that many patients advocate for referral to rehabilitation during the preoperative phase. The pressures and confusion after a cancer diagnosis make this a vulnerable time, and may reduce some patients' comprehension of complex discussions of short- and long-term morbidities. The initial preoperative consultation focuses on gathering baseline upper extremity range of motion and volume, emphasizes the importance of range of motion exercises after surgery, and helps to foster realistic expectations about the postoperative period. In some cases, rehabilitation intervention and/or exercise may be commenced at this time, and in all cases, patients should receive written instructions and educational materials to guide expectations and exercise for the early postoperative period.
The logistics of adding another medical appointment to the preoperative experience may discourage patient participation. We believe, however, that with integration of the prospective model into standard practice, patients are likely to view a preoperative rehabilitation visit as part of the interdisciplinary nature of modern cancer care.
We identified no disadvantages from the patient's perspective to an early postoperative rehabilitation assessment, and in fact, the literature suggests that women want it.34, 61 Extensive evidence demonstrates the benefits of early intervention in reducing the risk for lymphedema and long-term shoulder morbidity.68-70, 72, 73, 95, 96 Patient voices throughout this paper note the desire and need for consistent advice on proper activity levels and exercise immediately after surgery and in the weeks thereafter.
Women may perceive both positive and negative aspects of ongoing rehabilitation surveillance during adjuvant treatment and throughout the survivorship phase of care. Ongoing surveillance for late effects of treatment, such as lymphedema, may reduce fears through better understanding of the issues. Knowledge that early detection and treatment have been shown to effectively control lymphedema may assuage anxiety. In addition, education may reduce patients' frustration if new issues, such as weight gain, postradiation stiffness, or CIPN occur.
Conversely, a potential disadvantage of continued surveillance is that rehabilitation may provide an ongoing reminder of breast cancer; for example, the literature points to medical appointments as potential triggers for fears of recurrence.12 Because the model is patient-centered, however, it incorporates patients' evolving needs. With regular re-evaluation, surveillance may be reduced or discontinued based on the time since surgery, personal risk factors for impairments, and patient preference. An additional strength of the model is the potential for positive psychological and practical impact from addressing ongoing, treatment-related medical concerns.
The integration of exercise as a routine component of the breast cancer rehabilitation model benefits patients at every phase of survivorship and addresses both individual patient worries and the important contribution of exercise to overall health and survival. A prospective surveillance model enables physical activity to be incorporated across the continuum of care and tailored to each phase of medical treatment and the post-treatment period. The inclusion of exercise as a routine aspect of breast cancer care within the model will assist women in accessing appropriate exercise resources. Women can be directed to community-based group exercise programs or receive individualized consultation to adapt exercise during and after treatment.
A thorough discussion of the physical needs of women with metastatic breast cancer is beyond the scope of this paper; however, published research suggests that women with stage IV breast cancer have a unique perspective on the need for a prospective model of care for breast cancer rehabilitation, in part because of the aggregate effects of ongoing treatment.97, 98 In 1 study of women with metastatic breast cancer, 67% of participants reported fatigue or weakness, and 49% reported pain.99 Another cross-sectional study demonstrated that 92% of metastatic breast cancer patients had physical impairments that could be improved with standard rehabilitation, yet <30% had received care.100 Low socioeconomic and ethnic minority status were strongly associated with lack of treatment. Moreover, 89% of patients who reported distress because of problems with mobility said they would be willing to accept help.100 We anticipate that the ongoing surveillance phase of the model will enhance access to rehabilitation care and exercise for women with metastatic breast cancer.
In this paper, the concerns of breast cancer survivors around multidimensional short- and long-term problems are voiced. The proposed prospective surveillance model of rehabilitation can meet the evident and often expressed needs of survivors for information, guidance, and intervention and contribute to the restoration of function and activity for individuals diagnosed with and treated for breast cancer.
Support for this meeting and supplement was provided by the American Cancer Society, through the Longaberger Company®, a direct selling company offering home products including handcrafted baskets made in Ohio, and the Longaberger Horizon of Hope® Campaign, which provided a grant to the American Cancer Society for breast cancer research and education.
CONFLICT OF INTEREST DISCLOSURES
The authors made no disclosures.