Health care priorities for menopausal women with a history of breast cancer.

ABSTRACT

Background. The opinion of breast cancer survivors and their physicians about long-term health, especially menopause, is not well understood.

Methods. Seventy-three patients and 22 physicians answered questions regarding medical follow-up and menopause.

Results. One third of specialists preferred follow-up of 5 years or less, while 59% preferred 10 years or longer; 46% of patients preferred follow-up for 10 years or longer. Physicians preferred that primary care physicians supervise menopausal health (55%), but patients disagreed (30%). Physicians cited heart health most important, followed by skeletal health and climacteric symptoms. Physicians believed that climacteric symptoms were patients' leading concern, but patients cited heart health, followed by skeletal health and cognitive dysfunction. Neither patients nor physicians advocated estrogen use.

Conclusions. Differences of opinion exist between breast cancer patients and specialists regarding follow-up and management of menopause. However, both patients and physicians prefer prolonged surveillance by a cancer specialist, with attention to heart and skeletal health issues.

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EXTENSIVE INVESTIGATION of how to best diagnose and treat breast cancer has led to improvements in the quantity and quality of many women's lives. Breast cancer has become part of the medical history of many women who, with their physicians, must deal with specific health concerns that accompany their aging. Little information is available on which to base guidelines regarding long-term health care delivery for cancer survivors in general. The problem is even more complex for women who have had breast cancer because the intervention options offered for their menopausal health might be different from those available to the general population. In addition, it is not clear whether the patients' opinion regarding their care after the acute phase of cancer treatment are congruent with the opinions of the breast cancer specialists who have treated them. We contacted a group of women with a history of breast cancer and a group of breast cancer specialists and asked them who should perform follow-up care for the pati ents and what health issues are important to them.

Our goal was to understand opinions regarding the long-term health of these women, as well as diagnostic and treatment needs and options available for management of postmenopausal health. We also wanted to understand any differences in the viewpoints of breast cancer survivors and breast cancer specialists.

SUBJECTS AND METHODS

We constructed two pilot questionnaires. One was mailed to breast cancer specialists in self-addressed, stamped envelopes. The other was presented to patients who were breast cancer survivors attending the M. D. Anderson Breast Center. The questionnaires were distributed during the latter half of 1999. This study was approved by our institutional review board.

Patient Participants

Questionnaires were distributed to 200 women who had had breast cancer diagnosed at least 2 years earlier and who were no longer receiving therapy. We received 74 replies (37%), 73 of which were included in evaluation (1 patient was premenopausal). The patients' questionnaire contents are shown in Table 1.

Physician Participants

Questionnaires were distributed to 88 breast cancer specialists. We considered physicians to be breast cancer specialists if they were members of breast cancer guideline panels for the National Cancer Coalition Network or the American Society of Clinical Oncology or if they were faculty of the Breast Center at M.D. Anderson. The group included medical, surgical, and radiation oncologists. Of the 88 questionnaires, 23 (20%) were returned, and 22 were analyzed for the present report (1 was excluded as incomplete). Table 2 shows the physicians' questionnaire contents.

RESULTS

Patient Characteristics

Breast cancer had been diagnosed at least 2 years earlier (by definition). Diagnosis was within 5 years for 32% of patients, between 5 and 10 years for 35%, and more than 10 years for the remaining 32%. At the time of the survey, most women had medical contact with a breast specialist (89%).

Physician Characteristics

Twenty of the physicians indicated that more than three quarters of their practice was related to the treatment of breast cancer. The physicians were clinically active as a group; in any 3-month period, 50% of responders saw 20 to 50 new cases, and 86% of them cared for at least 50 long-term cases.

Opinions Regarding Health Care Delivery

Both patients and physicians indicated that prolonged follow-up by a breast cancer specialist was appropriate. Approximately one third of all responders proposed that supervision by a breast specialist for up to 5 years after diagnosis was sufficient. However, 46% of patients and 59% of physicians indicated that a breast specialist should follow the patient for 10 years or longer after initial diagnosis.

With respect to menopausal health, 60% of the patients indicated that the breast cancer specialist should participate in the supervision and treatment of menopausal issues, either primarily (44%) or together with the primary care physician (16%). In contrast, more than half of the breast cancer specialists (55%) believed that menopausal health matters were most appropriately handled by the primary care physician. Only 14% of the specialists believed that they should deal with menopause primarily, and 18% of them believed that they should work together with the primary care physician. Both patients and physicians indicated that they had participated in discussions of menopausal issues; however, each group believed that they were the ones most responsible for having initiated such a conversation. Most patients believed that they had initiated the dialogue either primarily (40%) or together with their physicians (15%). The physicians, on the other hand, believed that they had initiated the conversation either pr imarily (50%) or together with the patient (23%).

Prioritization of Menopausal Health Concerns

In the opinion of patients, heart disease was the leading menopausal health concern, listed as the number one priority by 38% of responders and among the top two priorities by 57% of them. Skeletal health was listed as the number one priority by 19% of patients and among the top two priorities by 54% of patients. Cognitive deterioration (Alzheimer's disease), although not a top concern, was most commonly listed as the third most important health issue. Climacteric and genitourinary symptoms were rated a high priority by only a small minority of women (Table 3).

In the opinion of physicians, heart disease was also the leading menopausal health concern, listed as the number one priority by 41% of the responders and among the top two priorities by 59% of them. Skeletal health was listed as the number one priority by 27% of physicians and among the top two priorities by 68% of them. Climacteric symptoms were listed as the number one priority by 23% of physicians and among the top two by 37% of them. Cognitive and genitourinary dysfunction concerns were less prominent (Table 3).

Most patients were correct in their perceived opinions of their doctors' priorities (Table 4). When asked about their perceived opinions of physicians' priorities regarding health care, the patients indicated that their doctors were likely to place highest priority on heart disease and second highest priority on skeletal health. Overall, the patients indicated that they believed their own health priorities were congruent with those of their physicians; nevertheless, the patients' responses to each item were "no comment" almost half the time, perhaps suggesting that they did not know what their doctors believed about issues of menopausal health.

Physicians were frequently incorrect in their perceptions about their patients' health priorities. None of the physicians recognized that heart disease was a top priority for patients. The specialists anticipated that immediate symptoms would be most important for their patients; 55% of physicians placed concern about climacteric symptoms as number one, and 78% placed it among the top two. Thirty-two percent of physicians suggested that skeletal health was a number one priority for patients and 50% of physicians ranked it among the top two priorities. Overall, the physicians offered an opinion on most points, "no comment" being an infrequent response (Table 4).

Estrogen Replacement Therapy 

Approximately one third of the patients offered no comment for the question on estrogen replacement therapy, and another third said it did not apply to them. Twenty percent stated that they would not consider estrogen, while 11% of patients were taking some form of prescribed or over-the-counter estrogen. Half of the physicians indicated that they prescribed estrogen replacement sometimes; the others prescribed estrogen rarely or never. While reluctance to use estrogen was expressed by both groups, the patients' responses suggested greater apprehension than did the physicians' responses.

Cancer Therapy and Tailored Health Surveillance

We asked patients and physicians whether previous treatments (eg, chemotherapy or radiotherapy), physical sequelae (eg, lymphedema), or early menopause should affect follow-up care. Most patients did not offer an opinion in this area; less than one fifth indicated that they or their physicians would find such a background significant. Similarly, most physicians did not indicate that special measures were needed for patients with these backgrounds. However, one third of physicians suggested that a focused history and physical examination were needed for patients treated with doxorubicin. For patients with chemotherapy-induced early menopause, almost half the physicians mentioned the importance of bone mineral density determinations. Half the physicians also suggested physical examination and other focused attention if radiotherapy or axillary dissection had previously been done.

Strategies for Preserving Overall Health after Menopause

Patients were asked to comment on health measures they were taking for a series of menopausal health concerns. Overall, skeletal health was the area of most active interventions; 55% of the women indicated that they were taking some specific treatment, 19% had no comment, and 22% said the question did not apply. Calcium, alone or in combination with vitamins, was mentioned most frequently as an intervention (more than one third of the patients), while only 8 women indicated that they used prescription drugs. For heart disease concerns, 19% had no comment, and 48% said the question did not apply; of the 33% of patients who were using some form of intervention, one fifth were using cardiac drugs. Aspirin, exercise, homeopathic measures, and estrogen were mentioned by 2 to 4 patients each. With respect to symptoms of menopause, 32% of women had no comment, and 44% said the question did not apply; the remainder mentioned a variety of over-the-counter supplements. Regarding cognitive and genitourinary health prob lems, approximately half the women said it did not apply, and one third had no comment. Among the miscellaneous interventions, 11 women mentioned ginseng to prevent Alzheimer's disease, and 4 women used exercise to improve incontinence; for vaginal dryness, 5 women mentioned over-the-counter creams, and 4 women mentioned estrogen creams.

The physicians also were asked to comment on their usual strategies for preventing heart disease and osteoporosis and for treating vasomotor instability and genitourinary atrophy (Table 5). For the prevention of heart disease, diet and exercise were the most frequent strategies, followed by control of comorbid conditions such as hypertension and diabetes. A small minority mentioned selective estrogen receptor modulator (SERM) or estrogen. For the prevention of osteoporosis, calcium supplements (with or without vitamin D) and exercise were frequently suggested. Prescription antiresorptive agents including alendronate, raloxifene, and calcitonin were mentioned by almost half the physicians. Bone density surveillance, referral to specialists, and estrogen replacement were occasional responses. For vasomotor instability, prescription nonhormonal remedies including bellergal, clonidine, megestrol acetate, venlafaxine, and paroxetine were mentioned by most physicians. Conservative and complementary measures or est rogen therapy were suggested by a few responders. For treatment of genitourinary atrophy, many physicians suggested the use of topical estrogen preparations or nonhormonal topical creams. A minority mentioned other hormonal interventions. Overall, nonestrogen prescription remedies and lifestyle interventions were the most prominent strategies that physicians recommend for menopausal health concerns.

DISCUSSION

The breast cancer patients and specialists who responded to our questionnaires provided valuable insights regarding practices and perceptions of long-term follow-up care and management of menopausal health. Both groups agreed that prolonged follow-up by a breast cancer specialist is preferable. However, while most patients preferred to see their specialists involved in menopausal health care, the specialists preferred that patients see their primary care physicians. While physicians generally place heart and skeletal health as top priorities (as did the specialists here), most menopausal women (including breast cancer patients) are thought to place climacteric symptoms as top priorities. It was, therefore, unexpected that the breast cancer patients in this survey ranked heart and skeletal health more important than other issues.

Questions, such as who should follow the patient after diagnosis and treatment of breast cancer and how extensive investigations for recurrent disease should be, have been debated in the medical literature for some time. Patients generally prefer continuity of care, either by a specialist or by a general practitioner. (1-3) Some studies suggest that specialists prefer to maintain long-term follow-up of their patients, whereas other studies indicate that more than one type of physician can be appropriate. (4-7) The abilities of nonspecialists to supervise the health of breast cancer patients' is supported by retrospective and prospective reports suggesting that complex investigations are not warranted in most cases. (8) Nevertheless, the opinions of our study participants were congruent with published findings in favor of prolonged contact between the patient and the specialist who treated her.

The best way to provide health care for menopausal women in general is of great interest in both the medical and lay literature, and it constitutes a topic of continuing discussion beyond the scope of the present study. For menopausal women who have been treated for breast cancer, the health decisions are even more complex. Adjuvant chemotherapy tends to accelerate the onset of menopause, and estrogen replacement is considered unsafe for most breast cancer survivors. These factors complicate the treatment of menopausal symptoms and menopause-related health problems in breast cancer survivors. For example, several studies indicate that climacteric genitourinary symptoms are frequent problems without well-defined solutions for women who have had breast cancer. (9-14) Perusal of the journals in which these studies are published highlights the fact that medical updates and strategies for this group of women are often discussed in the oncologic literature. These are frequently not included in the publications that many gynecologists or primary care physicians follow regularly. So, although cancer specialists may not need to participate in the menopausal health decisions for some cancer patients, their presence is valuable for patients treated for breast cancer. The patients' responses clearly indicate that they consider the breast specialist a desired member of the health care team for menopausal issues.

The perception exists that physicians emphasize the postmenopausal heart and skeletal health of their patients but that the women focus on climacteric symptoms. These priorities may also influence decisions to begin estrogen therapy. Among 833 women interviewed in a Gallup Poll, 72% of the women had significant vasomotor symptoms, but 58% of them had never taken hormone replacement for relief. (15) However, the same survey showed that the women were more concerned about their skeletal health (33%), heart health (28%), or cognitive health (28%) than they were about sexual dysfunction or other related problems.

Most reports about womens' attitudes and decisions regarding menopausal interventions tend to focus on what influences their decision to begin hormone replacement. In that context, input from physicians as well as climacteric symptoms and skeletal benefits appear to be important determinants of health care decisions including estrogen. (16-18) Information regarding the attitudes of women with a history of breast cancer is limited. Couzi et al (19) reported that former breast cancer patients were more concerned about their risk of recurrence than their risk of osteoporosis and heart disease. At the same time, they were most troubled by vasomotor instability and genitourinary atrophy, and these symptoms appeared most likely to influence patients to entertain the possibility of taking estrogen to relieve them. In our own experience, patients treated at M. D. Anderson have also said that they are concerned about osteoporosis and heart disease and would consider taking estrogen but are worried that estrogen would not be safe for them. (20,21) The health factors for breast cancer patients may therefore differ from the factors that would lead the general population to seek estrogen therapy. Patients in the present report commented that heart and skeletal health are more important than menopausal symptoms. This is congruent with earlier published data, as is the patients' indication that they are unlikely to take estrogen. Our patients' opinions in this sample, then, were much more in agreement with the breast specialists' opinion than the physicians realized themselves.

Overall, the patients in the present survey appeared to cope well with menopause. For survey questions related to therapy for heart, cognitive, or genitourinary health and physical signs of menopause, half of the women indicated that the questions were not applicable, and approximately one third of them had no comments. In contrast, only one fourth of the women considered skeletal therapy not applicable, whereas 58% of them were pursuing some specific intervention for it (mosdy calcium and vitamins). The variety of comments and interventions offered by the physicians emphasizes the significant number of nonhormonal interventions that can be offered to menopausal women with sequelae of estrogen deficiency who wish to avoid estrogen replacement therapy.

It is also important to keep in mind that patients' medical experiences, especially for breast cancer, may modify their priorities regarding health choices such as menopausal symptoms. Because the patient opinions were derived only from women who attend the M. D. Anderson breast clinics, it is possible that the results reflect prevailing opinions in our institution and are not generalizable. An expanded inquiry of breast cancer patients and physicians from broader geographic and professional circles can serve to validate or offer additional insight.

TABLE 1

Health Care Needs of Breast Cancer Survivors: Questions for Breast
Cancer Patients


Medical Follow-up After Breast Cancer Treatment
  How long has it been since you were diagnosed with breast cancer?
  How long after diagnosis and treatment should a patient be seen
    by the doctor who treated her?

Menopausal Health After Breast Cancer Treatment
(Heart disease, skeletal health, signs and symptoms, Alzheimer's
disease)
  Who initiates conversations you have on this subject?
  Who should be responsible for menopausal health concerns?
  Rank these menopausal concerns in order of importance to you.
  In you opinion, how do physicians rank these same concerns?
  What medications are you taking (including complementary)?
  Since your treatment, have you considered using any estrogen
    preparation?

TABLE 2

Health Care Needs of Breast Cancer Survivors: Questions for Breast
Specialist Physicians


Medical Follow-up After Breast Cancer Treatment
  What proportion of your practice involves breast cancer?
  How many new and long-term cases do you treat?
  Assuming no market restrictions and localized disease, how long
    should a breast specialist follow up a patient?

Menopausal Health After Breast Cancer Treatment
(Heart disease, skeletal health, climacteric and genitourinary
symptoms, cognitive dysfunction)
  Who should supervise/treat menopausal health?
  Who initiates conversations you have on this subject?
  Rank these menopausal concerns in order of importance.
  In you opinion, how do patients rank these menopausal concerns?
  What is your usual strategy for the prevention/treatment of these
    concerns?
  Do you prescribe estrogen to this populations?
  What additional surveillance do you consider important after
    Adriamycin therapy, chemotherapy-induced early menopause,
    radiotherapy, or axillary dissection?

TABLE 3

Menopausal Health Priorities of Patients and Physicians

                                      Priority Ranking *
Health Concerns             1          2          3         4

Patients' Opinion
  Heart disease            38 +       19          4        10
  Skeletal health          19         35         11         1
  Signs of menopause      5.5        5.5         12         8
  Vaginal dryness           4         11          8        11
  Alzheimer's disease       6          7         32        10
  Incontinence              1          3          3        22

Physicians' Opinion
  Heart disease            41         18          9         5
  Skeletal health          27         41         18         5
  Climacteric symptoms     23         14         23         9
  Cognitive dysfunction     0          9          9        36
  Genitourinary atrophy     0          9         32        36

                          Priority Ranking *     No
Health Concerns           5         6        Comment   Other

Patients' Opinion
  Heart disease           4         0          19        8
  Skeletal health         4         0          19       11
  Signs of menopause     21        15          30        3
  Vaginal dryness        14        15          29       11
  Alzheimer's disease     7         4          26       10
  Incontinence           10        19          38        4

Physicians' Opinion
  Heart disease          18         -           5        5
  Skeletal health         0         -           5        5
  Climacteric symptoms   23         -           5        5
  Cognitive dysfunction  36         -           5        5
  Genitourinary atrophy  23         -           5        5

* No. 1 = most important.

+ Percentage of responders giving various rankings of health concerns.

TABLE 4

Patients' and Physicians' Perceptions of Each Others' Menopausal Health
Priorities

                                         Priority Ranking *
Health Concerns                1         2            3        4

Patients' Perceptions of
 Physicians' Priorities
   Heart disease              32 +      16            4        1
   Skeletal health            19        23            8        3
   Signs of menopause          4         0          5.5       19
   Vaginal dryness             3         5            8        7
   Alzheimer's disease         0        11           22        0
   Incontinence                0         1            4       17
Physicians' Perceptions of
 Patients' Priorities
   Heart disease               0        18           18       36
   Skeletal health            32        18           23       18
   Climacteric symptoms       55        23           23        0
   Cognitive dysfunction       0        27           23       23
   Genitourinary atrophy      23        18           28       18

                             Priority Ranking *     No
Health Concerns              5          6       Comment   Other

Patients' Perceptions of
 Physicians' Priorities
   Heart disease             3          0         40        4
   Skeletal health           3          0         37        7
   Signs of menopause       14        5.5         51        1
   Vaginal dryness          15          9         46        7
   Alzheimer's disease      11          5         48        3
   Incontinence              1         22         54        1
Physicians' Perceptions of
 Patients' Priorities
   Heart disease            18          -          5        5
   Skeletal health           9          -          5        5
   Climacteric symptoms      9          -          5        5
   Cognitive dysfunction    36          -          5        5
   Genitourinary atrophy    23          -          5        5

* No. 1 being most important.

+ Percentage of responders giving various perceived rankings.

TABLE 5

Physician Measures for Menopausal Health


Prevention of heart disease
  (total number of comments = 50)
     Exercise                          24%
     Diet                              22%
     Refer to internist                 8%
     Control blood pressure, diabetes  16%
     Control tobacco, lipids, weight   16%
     Aspirin, SERM, * estrogen          8%
     Miscellaneous                      6%
Prevention of osteoporosis
  (total number of comments = 58)
     Calcium supplement                19%
     Prescription antiresorptives      52%
     Exercise                          16%
     Miscellaneous                     13%
Prevention of osteoporosis
  (total number of comments = 58)
     Calcium supplement                19%
     Prescription antiresorptives      52%
     Exercise                          16%
     Miscellaneous                     13%
Treatment of genitourinary atrophy
  (total number of comments = 28)
     Nonhormonal topical creams        29%
     Topical estrogen                  43%
     Miscellaneous                     28%

SERM = Selective estrogen receptor modulator.

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RELATED ARTICLE: KEY POINTS

* In general, physicians and patients agreed that long-term surveillance by a cancer specialist was desired.

* The perception of menopausal health priorities differed for patients and physicians.

* Treatment modalities were reviewed for treatment influence of menopausal health concerns.

From the Department of Endocrine Neoplasia and Hormonal Disorders, Division of Internal Medicine, the University of Texas M. D. Anderson Cancer Center, Houston.

Supported by a grant from the Texas Federation of Business and Professional Women.

Reprint requests to Rena Vassilopoulou-Sellin, MD, University of Texas M. D. Anderson Cancer Center, Department of Endocrine Neoplasia and Hormonal Disorders, Division of Internal Medicine, Box 435, 1515 Holcombe Blvd, Houston, TX 77030.