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How breast cancer treatment decisions are made by women in North Dakota
How Breast Cancer Treatment Decisions Are Made by Women in North Dakota Douglas Stafford, MD, Robert Szczys, MD, Ricky Becker, MD, Julie Anderson, MS RN, Susan Bushfield, MSW, Grand Forks, North Dakota
Although equally effective, women in rural midwestern states choose modified radical mastectomy (MRM) over breast conservation surgery for early stage breast cancer. This study assessed treatment decisions by the women of North Dakota. METHODS: Surveys were sent to women treated for early stage breast cancer from 1990 through 1992. Separate surveys were sent out to surgeons in the state. The questions assessed physician and patient perceptions of treatment and the decision making process. RESULTS: A majority of surgeons believed that the long-term and disease-free survival was equal and that the preference for choosing MRM was due mostly to inconvenience of radiotherapy. The women reported that the surgeon was the most influential in the treatment decision and that concerns over radiation, duration of treatment, and travel restrictions all were factors in the decision. CONCLUSIONS: Education of surgeons and patients plus the early involvement of the radiation oncologist in discussing options is essential in the treatment of early stage breast cancer. Am J Surg. 1998;176:515–519. © 1998 by Excerpta Medica, Inc. BACKGROUND:
T
he use of breast conservation surgery (BCS) was first investigated as an option for women with early stage breast cancer in 1981 by Veronesi et al.1 This clinical trial concluded that when radical mastectomy was compared with quadrantectomy and radiotherapy, clinical outcome was similar for tumors less than 2 cm with no palpable axillary nodes. Additional randomized clinical trials have since confirmed this finding and have also shown that there is no difference in disease-free interval or overall survival for women with early stage breast cancer treated by BCS or total mastectomy.2,3 Despite these findings, a large number of women with early stage breast cancer (stage I and II) continue to undergo modified radical mastectomy (MRM). Nuttinger et
From the University of North Dakota Department of Surgery, Altru Health System, Grand Forks, North Dakota. Requests for reprints should be addressed to Robert Szczys, MD, Clinical Professor of Surgery, University of North Dakota, Altru Clinic, 1000 South Columbia Road, P.O. Box 6003, Grand Forks, North Dakota 58206. Presented at the 50th Annual Meeting of The Southwestern Surgical Congress, San Antonio, Texas, April 19 –22, 1998.
© 1998 by Excerpta Medica, Inc. All rights reserved.
al.4 reviewed 36,982 cases of women age 65 to 79, diagnosed with early stage breast cancer, and found that only 12% opted for BCS. Osteen et al5 found that of 13,557 patients with stage I disease, 56.9% opted for modified radical mastectomy, compared with 31.9% who chose BCS. Of the 11,991 patients in the study with stage II disease, 71.2% chose modified radical mastectomy compared with 19.1% who chose BCS. There appear to be geographical differences in the treatment of early stage breast cancer. The highest percentage of women with stage I or II breast cancer who underwent BCS (21%) were in the states of New York, Pennsylvania, and Massachusetts, as compared with Idaho (3.8%), Nebraska (5.3%), and Montana (5.4%). In North Dakota, 9.6% of patients with stage I and II breast cancer underwent BCS.6 Reasons for the differences in treatment have been studied. Patients treated at teaching hospitals are more likely to undergo BCS than patients treated at a non-teaching institution.4 More than 50% of patients with stage I disease and 40% to 50% of those with stage II disease underwent BCS at teaching institutions, compared with less than 30% at non-teaching hospitals.6 Other characteristics of the hospitals may influence the choice of BCS over mastectomy. Size of the metropolitan area, availability of radiotherapy, and the presence of geriatric services have been predictive of the choice of BCS over mastectomy.4 The attitude of the operating surgeon can also play a role in the decision made by the patient. A majority of the women (93%) indicate the primary source of information about treatment options for breast cancer originates with the surgeon. Sixty-nine percent of women said that a specific treatment option was recommended by their surgeon and that the recommendation was for mastectomy 89% of the time and for breast-conserving surgery 11% of the time, with compliance rates of 93% and 89% for these recommendations, respectively.7 The influence of a rural setting has not been specifically studied as a factor in breast cancer treatment choices. North Dakota is one of six states federally designated as a frontier state, defined as half or more of the state’s population density being less than 6 persons per square mile. In North Dakota, 35 of 53 counties are defined as frontier.8 This study was designed to determine what factors influence women with breast cancer in North Dakota to choose between mastectomy and breast conservation surgery. This study reviews the treatment decision from the patient’s perspective and investigates the surgeon’s knowledge, beliefs, and practices in regards to the option of treatment for early stage breast cancer. 0002-9610/98/$19.00 PII S0002-9610(98)00257-8
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MATERIALS AND METHODS Questionnaires for surgeons and patients were developed by board certified surgeons, surgical residents, a research nurse coordinator, and a social worker. The questions were reviewed by an expert panel and subject to modified Delphi analysis.9 Surgeons eligible to participate in the study were identified from records of the state Board of Medical Examiners. Twenty-one surgeons in the four largest cities in North Dakota (Fargo, Bismarck, Minot, and Grand Forks), who were listed by approved cancer registries, were sent letters and surveys. The letters requested participation in the study and permission to send questionnaires to patients they had treated. The physician portion of the survey contained 15 questions addressing the surgeons’ knowledge, beliefs, and practices in the treatment of early stage breast cancer. North Dakota women with early stage breast cancer treated from 1990 to 1992 were identified through the American College of Surgeons approved cancer registries. Surveys were sent to 266 North Dakota women who were eligible for participation in the study. The questionnaire consisted of 20 questions addressing the factors that lead patients to choose a specific treatment for breast cancer. Statistical analysis was performed with the Statistical Analysis System software (SAS software, Cary, North Carolina).10 General descriptive statistics, analysis of variance, and chi-square analysis were utilized with P , 0.05 as the level of significance.
RESULTS Of the surgeons surveyed, 17 of 21 (80%) agreed to participate in the study. Seven percent of the surgeons believed that long-term survival was greater with MRM compared with BCS, and 93% believe that survival is equal for the two procedures. Thirty-six percent felt that diseasefree survival was greater with MRM, and 64% felt that BCS and MRM had equal disease-free survival. The conditions under which the surgeon would perform a modified radical mastectomy were reported as stage of cancer (n 5 10), patient preference (n 5 8), access to radiation (n 5 2), convenience of surgery (n 5 1), and other reasons (n 5 2). With respect to specific lesions, the surgeons were asked their treatment preference for T1, N0 breast lesions. Breast conservation, with exceptions (ie, age, location, histology, etc.), was preferred by 46% of the surgeons, MRM by 15%, and 38% of the surgeons had no preference for either procedure. For T2, N0 lesions, breast conservation, with exceptions, was preferred by 21% of the surgeons, MRM by 43%, and 36% had no preference for either procedure. For T1 or T2, N1 lesions, breast conservation, with exceptions, was chosen by surgeons 21%, MRM by 29%, and 50% had no preference between procedures. The surgeons believed that for patients given the option of BCS or MRM, modified radical mastectomy was chosen for the following reasons: convenience (n 5 10), MRM is a more complete procedure (n 5 7), fear of radiation (n 5 6), age (n 5 4), influence of spouse or significant other (n 5 4), or cost (n 5 1). The surgeons believe that patients choose BCS over MRM for improved body image (n 5 9), knowledge of breast cancer (n 5 4), influence of spouse or 516
TABLE I Patient Demographics Mean age Marital status (%) Married Widowed Single Divorced Living together Separated Race (%) Caucasian Native American Black Asian Household Income (%) ,$10,000 $10,000–$29,999 $30,000–$49,999 $50,000–$75,000 .$75,000 Highest education level (%) Less than high school High school graduate Some college or vocational school College graduate Master’s degree or higher
65 66 24 3 3 1 1 85 9 1 1 14 32 21 7 3 17 25 32 15 3
significant other (n 5 3), influence of radiation oncologist (n 5 3), or age of patient (n 5 2). Sixty-four percent of surgeons reported discussing breast reconstruction before the definitive treatment, 14% of the surgeons discussed reconstruction after the procedure, and 21% reported not discussing reconstruction. The patient survey was sent out to 266 women and 191 were returned (72%). The mean age of all respondents was 65 years. Most of the women who responded to the study were married (66%) and Caucasian (85%). Most reported that their household income was in the $10,000 to $29,999 range (32%). The highest percentage of women reported some college or vocational school training (32%) (Table I). MRM was the treatment choice for 66% of the women and BCS for 33%. The women were asked if both MRM and BCS were discussed as treatment options. Statewide, 70% reported that both MRM and BCS were discussed, 23% reported that both treatment options were not discussed, and 7% did not remember if both treatment options were discussed (P 5 0.013). Of the patients who reported that both treatment options were discussed, the women recalled being told by the surgeon that in her particular case, MRM was better 55%, BCS was better 10%, and the treatments were equal 34%. In the decision-making process, 83% women were satisfied with the explanation given by their surgeon. Thirty percent of patients talked to significant others or friends, 23% obtained other written material other than what was provided by the surgeon, and 20% obtained a second opinion when deciding on a treatment option. The mean age of patients seeking a medical second opinion was 60 years compared with the mean age of patients
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of women have had reconstruction, and 94% of women who underwent MRM have not had reconstruction.
TABLE II Most Influential Person Your surgeon Spouse or significant other Personal physician Other family members Friends Missing
Frequency
Percent
98 34 28 18 4 9
51 18 15 9 2 5
n 5 191 patients.
who did not seek a medical second opinion, 65 years (P 5 0.0115). The mean age of patients who sought a second opinion from nonmedical sources such as friends, spouse, or journal articles was 61 years. The mean age of women who did not seek a nonmedical second opinion was 68 years (P ,0.0001). Of the women who obtained a second opinion, 21% reported that the opinion differed from the original recommendation and 79% reported that the recommendation was the same. Of the patients who got different second opinions, 38% opted for the first recommendation and 62% opted for the second opinion. With respects to others who may have helped the decision process, the patients reported the most influential was the surgeon (51%), followed by the spouse or significant other, personal physician, other family members, and friends (Table II). Twenty-seven percent of the women reported that they were significantly influenced in their treatment decision by a person who had breast cancer in the past. Factors that were very influential for the women in their treatment choice include survival or fear of recurrence (69%), family or friends (16%), fear of deformity, mutilation, loss of breast, or body image (13%), fear of radiation, duration of radiation, or distance to travel for radiation treatments (12%), thoughts of reconstruction (4%), and fear of pain (3%) (Table III). The majority of study participants (72%) indicated concerns of some nature regarding radiation therapy. Of the patients who indicated concern, 60% indicated general concerns with receiving radiation, 54% were concerned with duration of the treatment, and 52% were concerned with the distance of travel required for radiation therapy. With respect to satisfaction of the women’s choice of treatment for breast cancer, 64% were very satisfied, 25% were satisfied, 4% were somewhat satisfied, and 2% were dissatisfied. Seventy-five percent of women would recommend their procedure to another person with breast cancer. Of the patients who had MRM for the treatment of breast cancer, 42% had the MRM at the time of the initial biopsy and 43% had the MRM as a second procedure. Breast reconstruction was discussed by the surgeon before the procedure (45%), after the procedure (14%), or was not discussed (41%). Of the women who reported reconstruction being discussed before the procedure, the mean age was 60 years. The mean age of patients in which reconstruction was discussed after the procedure was 61 years, and the mean age of patients who report not having reconstruction discussed was 68 years (P 5 0.002). Only 6%
COMMENTS The results of the physicians survey shows that most of the surgeons in North Dakota are well educated with respect to treatment of early stage breast cancer. There still is a small percentage of surgeons that either prefer or recommend MRM for a patient when BCS would be a viable option. The patients reported that the most influential person in their treatment decision was the surgeon; therefore, continuing education of the surgeons must be undertaken to insure that all the treatment options are presented to the women in an unbiased fashion. Many factors are involved in a woman’s choice of treatment for breast cancer. Factors that influence the patient’s choice are not always the ones the treating physician think are important. The surgeons believed that most of the treatment choices were based on convenience and the patient’s belief that MRM is a more complete surgical procedure. The patients reported that fear of recurrence was the most influential factor in the decision. A majority of women also expressed some degree of concern over radiation treatments and that this was a significant factor in the decision-making process. The distance to travel for access to radiation therapy was an equally important issue in the choice of MRM over BCS. Since radiation therapy is only available in the four largest cities in North Dakota—Fargo, Grand Forks, Bismarck, and Minot—many patients would have to travel a great distance for treatment. Other factors such as weather, the cost of travel, and inconvenience were important in the decision against radiotherapy. Current radiotherapy treatment regimens require daily treatments for up to 6 weeks. This is a significant burden on patients who opt for conservative treatment. Currently, investigations are in progress to determine the optimal duration of treatment for radiation therapy. If shorter treatment times are found to be equally effective in the treatment of breast cancer, this would lessen the travel burden on patients. Shortened treatment schedules may help patients choose BCS over MRM, even though the distance to treatment centers may not change drastically in the rural setting. Although women expressed a fear of radiation as a significant factor in their choice of treatment, the physicians believed that a favorable impression toward a radiation oncologist was influential in the decision-making process. Therefore, early involvement of a radiation oncologist may help alleviate the fear of radiation by supplying the patient with treatment information. Answering questions and dispelling rumors, the patient can be better informed prior to making a treatment choice. Education on breast cancer as a whole must be more specific. Patients in North Dakota (93%) believed that “cutting it off ” or “ridding self of breast” is a better or more complete operation even though the current literature indicates for early stage breast cancer, BCS is as effective as MRM. Educational material that the patients can take home and review may be helpful to better educate the patients on treatment options. Information regarding breast reconstruction may also
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HOW WOMEN MAKE BREAST CANCER TREATMENT DECISIONS/STAFFORD ET AL
TABLE III Decision Factors
Survival Pain Family/friend support Self-image Sexual image Radiation treatment Reconstruction
Very Frequent 132 6 31 25 9 23 8
%
Somewhat Frequent
%
Minimally Frequent
%
Not Frequent
Missing
%
69.1 3.1 16.2 13.1 4.7 12 4.2
29 15 25 41 38 36 8
15.2 7.9 13.1 21.5 19.9 18.8 4.2
17 58 34 70 54 56 31
8.9 30.4 17.8 36.6 28.3 29.3 16.2
13 40 77 44 41 66 70
6.8 20.9 40.3 23 21.5 34.6 36.6
0 72 24 7 49 10 74
(Percentages calculated with denominator n 5 191)
help patients make their treatment choice. Physicians reported they discussed breast reconstruction before the treatment 64% of the time whereas the patients only recall being told about reconstruction before the treatment 27% of the time. The physicians reported discussing breast reconstruction either before or after the procedure 78% of the time where as the women report only being told about reconstruction 59% of the time. Forty-one percent of the patients reported reconstruction never being discussed with them. The mean age of the patients who said they were informed about breast reconstruction was 60 years compared with 68 years for patients who reported not being informed. Education material to take home may help the patient to remove the discrepancy in the information being portrayed. With valid information regarding reconstruction, fully informed decisions of breast cancer treatment can be made. The age of the patients seeking both medical and nonmedical second opinion was statistically significant. The mean age was younger for the women seeking a second opinion, and a majority of women who obtained a second opinion opted for the second treatment option. Less emphasis should be placed on patient age by the treating physician to insure that all patients, regardless of age, are given all the viable treatment options for her particular stage of breast cancer. By educating all patients as to both treatment options that exist for early stage breast cancer, the women will be able to make an informed decision regarding their treatment choice. Although a smaller percentage of women in North Dakota as compared with more populated states choose BCS for the treatment of early stage breast cancer, there appeared to be well-defined reasons for their choice. Some of the reasons may never be overcome in a rural state. The distance to travel for radiotherapy, the weather, and inconvenience of treatment may never change owing to the limited population base of a rural state. Factors were identified in this study that could be acted on to increase the number of patients who choose BCS over MRM. The biggest factor that needs to be changed is education, of both surgeon and patient. Although most surgeons believe that BCS and MRM are equally effective treatments for early stage breast cancer, there still is a small percentage of
518
surgeons who are not convinced of the treatment data. All surgeons who are treating breast cancer must be well educated on the current treatment standards and not let their own bias influence the woman’s treatment choice. Efforts to educate the patient also need to continue. Women in the study seem to be basing their treatment decisions on incomplete information. Care must be taken to insure that the women have all the information presented to them and that they understand the information with respect to the surgical treatment of breast cancer, radiotherapy, and reconstruction. By making sure that all information is understood, a woman can then make an educated, informed decision on the treatment choice that is right for her.
REFERENCES 1. Veronesi U, Saccozzi R, DelVecchio M, et al. Comparing radical mastectomy with quadrantectomy, axillary dissection, and radiotherapy in patients with small cancers of the breast. NEJM. 1981; 305:6 –11. 2. Fisher B, Anderson S, Redmond C, et al. Reanalysis and results after 12 years of follow-up in a randomized clinical trial comparing total mastectomy with lumpectomy with or without irradiation in the treatment of breast cancer. NEJM. 1995;333:1456 –1461. 3. Consensus statement. Treatment of early-stage breast cancer. NIH Consensus Development Conference, June 18 –21, 1990. Bethesda, Md: National Institute of Health; 1990;8(6):1–19. 4. Nuttinger A, Gottlieb M, Veum J, et al. Geographic variations in the use of breast conserving treatment for breast cancer. NEJM. 1992;326:1102–1107. 5. Osteen T, Steeke G, Menck H, et al. Regional differences in surgical management of breast cancer. CA. 1992;42:39 – 43. 6. Lee-Feldstein A, Anton-Culver H, Feldstein P. Treatment differences and other prognostic factors related to breast cancer survival. JAMA. 1994;271:1163–1168. 7. Kotwall C. Society of Surgical Oncology 48th Annual Cancer Symposium, Boston, Massachusetts, 1995. 8. US Department of Commerce, Bureau of the Census. 1990 Census of Population and Housing. Washington, DC: US Government Printing Office; 1993. 9. Hutchinson SA. Getting started on a study. In: Wilson HS, ed. Research in Nursing. 2nd ed. Redwood City, Cal. Addison-Wilson Publishing; 1989:227–274. 10. SAS Users Guide Version 6. 4th ed. Cary, NC: SAS Institute Inc., 1989.
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DISCUSSION Byron McGregor, MD (Reno, Nevada): This was a nice effort to wring a lot of information out of a relatively small database. Just the numbers involved in a 15-point questionnaire to 17 surgeons and only a 72% response rate from your women must have wreaked havoc with your power analysis. But these are intriguing observations, nevertheless. Without getting lost in the numbers, and if I read your manuscript correctly: (1) All but one surgeon in the entire state of North Dakota has bought the party line that these two therapies are equivalent; (2) most of the women thought equivalent survival was the most important factor, and most of the women learned this from their surgeon; (3) most of the women said both options had been discussed; but (4) all those who did have both options discussed came away from that counseling session thinking that mastectomy was a better choice. Is there some disingenuousness alive on the high prairie, or how else does your survey explain this dichotomy? Second, as we just heard from Dr. Weintritt, there’s more to education than whether to perform a radical mastectomy or one of its modifications. There are hormone receptors, S-phase analysis, at least half a dozen molecular markers, chromosome analysis, and polymerase chain reaction analysis of lymph node cytology. Are these modalities available in the pioneer counties, and how do you suggest we make this information about them available? James A. Edney, MD (Omaha, Nebraska): Why did you limit this study to the four population centers in the state? I suspect that North Dakota is not a lot different from other rural states. If you included the surgeons in the rural areas where radiation therapy wasn’t available, or breast reconstruction wasn’t available as an immediate option, I suspect that the incidence of mastectomy would be even higher than it has been presented in your study. J. Gary Maxwell, MD (Wilmington, North Carolina): In our area, the facility fee alone for radiation therapy is of the order of $15,000, not including the therapist’s professional fee. Do you have any information about the facility fee for radiation therapy or the professional fee charged by the radiologist? Do you think they might be operative in the decision-making process? Norman C. Estes, MD (Kansas City, Kansas): I notice in your study that patients were only 65% “very satisfied.” Unless some of those patients had a recurrence, I would have thought you would have a higher percentage. Did you have any data that they thought they had made the wrong choice? I think we’re looking at numbers too much in trying to get an exact percentage of patients who are going to get minimal operations. Patients need to remain satisfied, and if the surgeon recommends a clinically successful treatment that the patient remains satisfied with for life, wouldn’t that be a success? G. Douglas Schmitz, MD (Torrington, Wyoming): From a very small town surgeon’s perspective, I wanted to ask
whether we should present both options to these patients and tell them that they really can’t make a bad decision. But it sounds like the more breast conservation surgery, the better. Should I be pushing breast conservation surgery, or should I let the patient make up their mind? We don’t have the availability of radiation very close. And so that affects it a lot. Charles K. Harmon, MD (Tulsa, Oklahoma): I was intrigued that 61% of women that sought a second opinion chose to stay with that second opinion. And I was interested to know if most women who sought second opinions had been advised to have a modified radical mastectomy or the breast conservation surgery. Do you have any information on what the first recommendation was? James A. Edney, MD (Omaha, Nebraska): I’m reminded of a paper presented by Charlie Abernathy in about 1992 at this meeting, which was a statewide survey of Colorado surgeons, questioning the high incidence of mastectomy versus breast-conserving surgery. They found that while the surgeons generally agreed that the two options were equal in these cases, over 34% of the surgeons admitted to subtly biasing the patient toward mastectomy. I think one of the common threads in all of this is that the deciding factor is largely the way a surgeon presents the information as opposed to the availability of radiation therapy facilities or whether you’re in a rural or urban area.
CLOSING Douglas R. Stafford, MD: With respect to the question why just the surgeons in the four major cities in North Dakota were surveyed, those are the four cities in which radiation therapy is available, and in an attempt to limit our data, that was our starting point. North Dakota is a rural state, and there are similar states that are members of the Southwest Surgical Congress, including Montana, Utah, and Nevada, which have similar problems with respect to breast conservation surgery. If patients are going to go on to radiation therapy, it’s a great burden to travel great distances, often in adverse weather. The winters in North Dakota are quite difficult, and many times days go by that you cannot travel out in the country. Many women, although they’re being told that both treatments are of equal value, choose mastectomy just to be done with their procedure and not have to worry about the travel burdens that are placed on them; and that really is a significant factor when these women are choosing their treatment. Dr. Schmitz, I think it’s important that all the information is explained to the patient and that they are both equal treatment options, and then the patient has to decide. I don’t think it’s right that the surgeon should be pushing breast conservation surgery over mastectomy. With respect to the patients who were dissatisfied, we did not analyze the reasons they weren’t satisfied. And I agree, you’d like to see more patients very satisfied with their treatment choice.
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Although equally effective, women in rural midwestern states choose modified radical mastectomy (MRM) over breast conservation surgery for early stage breast cancer. This study assessed treatment decisions by the women of North Dakota. METHODS: Surveys were sent to women treated for early stage breast cancer from 1990 through 1992. Separate surveys were sent out to surgeons in the state. The questions assessed physician and patient perceptions of treatment and the decision making process. RESULTS: A majority of surgeons believed that the long-term and disease-free survival was equal and that the preference for choosing MRM was due mostly to inconvenience of radiotherapy. The women reported that the surgeon was the most influential in the treatment decision and that concerns over radiation, duration of treatment, and travel restrictions all were factors in the decision. CONCLUSIONS: Education of surgeons and patients plus the early involvement of the radiation oncologist in discussing options is essential in the treatment of early stage breast cancer. Am J Surg. 1998;176:515–519. © 1998 by Excerpta Medica, Inc. BACKGROUND:
T
he use of breast conservation surgery (BCS) was first investigated as an option for women with early stage breast cancer in 1981 by Veronesi et al.1 This clinical trial concluded that when radical mastectomy was compared with quadrantectomy and radiotherapy, clinical outcome was similar for tumors less than 2 cm with no palpable axillary nodes. Additional randomized clinical trials have since confirmed this finding and have also shown that there is no difference in disease-free interval or overall survival for women with early stage breast cancer treated by BCS or total mastectomy.2,3 Despite these findings, a large number of women with early stage breast cancer (stage I and II) continue to undergo modified radical mastectomy (MRM). Nuttinger et
From the University of North Dakota Department of Surgery, Altru Health System, Grand Forks, North Dakota. Requests for reprints should be addressed to Robert Szczys, MD, Clinical Professor of Surgery, University of North Dakota, Altru Clinic, 1000 South Columbia Road, P.O. Box 6003, Grand Forks, North Dakota 58206. Presented at the 50th Annual Meeting of The Southwestern Surgical Congress, San Antonio, Texas, April 19 –22, 1998.
© 1998 by Excerpta Medica, Inc. All rights reserved.
al.4 reviewed 36,982 cases of women age 65 to 79, diagnosed with early stage breast cancer, and found that only 12% opted for BCS. Osteen et al5 found that of 13,557 patients with stage I disease, 56.9% opted for modified radical mastectomy, compared with 31.9% who chose BCS. Of the 11,991 patients in the study with stage II disease, 71.2% chose modified radical mastectomy compared with 19.1% who chose BCS. There appear to be geographical differences in the treatment of early stage breast cancer. The highest percentage of women with stage I or II breast cancer who underwent BCS (21%) were in the states of New York, Pennsylvania, and Massachusetts, as compared with Idaho (3.8%), Nebraska (5.3%), and Montana (5.4%). In North Dakota, 9.6% of patients with stage I and II breast cancer underwent BCS.6 Reasons for the differences in treatment have been studied. Patients treated at teaching hospitals are more likely to undergo BCS than patients treated at a non-teaching institution.4 More than 50% of patients with stage I disease and 40% to 50% of those with stage II disease underwent BCS at teaching institutions, compared with less than 30% at non-teaching hospitals.6 Other characteristics of the hospitals may influence the choice of BCS over mastectomy. Size of the metropolitan area, availability of radiotherapy, and the presence of geriatric services have been predictive of the choice of BCS over mastectomy.4 The attitude of the operating surgeon can also play a role in the decision made by the patient. A majority of the women (93%) indicate the primary source of information about treatment options for breast cancer originates with the surgeon. Sixty-nine percent of women said that a specific treatment option was recommended by their surgeon and that the recommendation was for mastectomy 89% of the time and for breast-conserving surgery 11% of the time, with compliance rates of 93% and 89% for these recommendations, respectively.7 The influence of a rural setting has not been specifically studied as a factor in breast cancer treatment choices. North Dakota is one of six states federally designated as a frontier state, defined as half or more of the state’s population density being less than 6 persons per square mile. In North Dakota, 35 of 53 counties are defined as frontier.8 This study was designed to determine what factors influence women with breast cancer in North Dakota to choose between mastectomy and breast conservation surgery. This study reviews the treatment decision from the patient’s perspective and investigates the surgeon’s knowledge, beliefs, and practices in regards to the option of treatment for early stage breast cancer. 0002-9610/98/$19.00 PII S0002-9610(98)00257-8
515
HOW WOMEN MAKE BREAST CANCER TREATMENT DECISIONS/STAFFORD ET AL
MATERIALS AND METHODS Questionnaires for surgeons and patients were developed by board certified surgeons, surgical residents, a research nurse coordinator, and a social worker. The questions were reviewed by an expert panel and subject to modified Delphi analysis.9 Surgeons eligible to participate in the study were identified from records of the state Board of Medical Examiners. Twenty-one surgeons in the four largest cities in North Dakota (Fargo, Bismarck, Minot, and Grand Forks), who were listed by approved cancer registries, were sent letters and surveys. The letters requested participation in the study and permission to send questionnaires to patients they had treated. The physician portion of the survey contained 15 questions addressing the surgeons’ knowledge, beliefs, and practices in the treatment of early stage breast cancer. North Dakota women with early stage breast cancer treated from 1990 to 1992 were identified through the American College of Surgeons approved cancer registries. Surveys were sent to 266 North Dakota women who were eligible for participation in the study. The questionnaire consisted of 20 questions addressing the factors that lead patients to choose a specific treatment for breast cancer. Statistical analysis was performed with the Statistical Analysis System software (SAS software, Cary, North Carolina).10 General descriptive statistics, analysis of variance, and chi-square analysis were utilized with P , 0.05 as the level of significance.
RESULTS Of the surgeons surveyed, 17 of 21 (80%) agreed to participate in the study. Seven percent of the surgeons believed that long-term survival was greater with MRM compared with BCS, and 93% believe that survival is equal for the two procedures. Thirty-six percent felt that diseasefree survival was greater with MRM, and 64% felt that BCS and MRM had equal disease-free survival. The conditions under which the surgeon would perform a modified radical mastectomy were reported as stage of cancer (n 5 10), patient preference (n 5 8), access to radiation (n 5 2), convenience of surgery (n 5 1), and other reasons (n 5 2). With respect to specific lesions, the surgeons were asked their treatment preference for T1, N0 breast lesions. Breast conservation, with exceptions (ie, age, location, histology, etc.), was preferred by 46% of the surgeons, MRM by 15%, and 38% of the surgeons had no preference for either procedure. For T2, N0 lesions, breast conservation, with exceptions, was preferred by 21% of the surgeons, MRM by 43%, and 36% had no preference for either procedure. For T1 or T2, N1 lesions, breast conservation, with exceptions, was chosen by surgeons 21%, MRM by 29%, and 50% had no preference between procedures. The surgeons believed that for patients given the option of BCS or MRM, modified radical mastectomy was chosen for the following reasons: convenience (n 5 10), MRM is a more complete procedure (n 5 7), fear of radiation (n 5 6), age (n 5 4), influence of spouse or significant other (n 5 4), or cost (n 5 1). The surgeons believe that patients choose BCS over MRM for improved body image (n 5 9), knowledge of breast cancer (n 5 4), influence of spouse or 516
TABLE I Patient Demographics Mean age Marital status (%) Married Widowed Single Divorced Living together Separated Race (%) Caucasian Native American Black Asian Household Income (%) ,$10,000 $10,000–$29,999 $30,000–$49,999 $50,000–$75,000 .$75,000 Highest education level (%) Less than high school High school graduate Some college or vocational school College graduate Master’s degree or higher
65 66 24 3 3 1 1 85 9 1 1 14 32 21 7 3 17 25 32 15 3
significant other (n 5 3), influence of radiation oncologist (n 5 3), or age of patient (n 5 2). Sixty-four percent of surgeons reported discussing breast reconstruction before the definitive treatment, 14% of the surgeons discussed reconstruction after the procedure, and 21% reported not discussing reconstruction. The patient survey was sent out to 266 women and 191 were returned (72%). The mean age of all respondents was 65 years. Most of the women who responded to the study were married (66%) and Caucasian (85%). Most reported that their household income was in the $10,000 to $29,999 range (32%). The highest percentage of women reported some college or vocational school training (32%) (Table I). MRM was the treatment choice for 66% of the women and BCS for 33%. The women were asked if both MRM and BCS were discussed as treatment options. Statewide, 70% reported that both MRM and BCS were discussed, 23% reported that both treatment options were not discussed, and 7% did not remember if both treatment options were discussed (P 5 0.013). Of the patients who reported that both treatment options were discussed, the women recalled being told by the surgeon that in her particular case, MRM was better 55%, BCS was better 10%, and the treatments were equal 34%. In the decision-making process, 83% women were satisfied with the explanation given by their surgeon. Thirty percent of patients talked to significant others or friends, 23% obtained other written material other than what was provided by the surgeon, and 20% obtained a second opinion when deciding on a treatment option. The mean age of patients seeking a medical second opinion was 60 years compared with the mean age of patients
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of women have had reconstruction, and 94% of women who underwent MRM have not had reconstruction.
TABLE II Most Influential Person Your surgeon Spouse or significant other Personal physician Other family members Friends Missing
Frequency
Percent
98 34 28 18 4 9
51 18 15 9 2 5
n 5 191 patients.
who did not seek a medical second opinion, 65 years (P 5 0.0115). The mean age of patients who sought a second opinion from nonmedical sources such as friends, spouse, or journal articles was 61 years. The mean age of women who did not seek a nonmedical second opinion was 68 years (P ,0.0001). Of the women who obtained a second opinion, 21% reported that the opinion differed from the original recommendation and 79% reported that the recommendation was the same. Of the patients who got different second opinions, 38% opted for the first recommendation and 62% opted for the second opinion. With respects to others who may have helped the decision process, the patients reported the most influential was the surgeon (51%), followed by the spouse or significant other, personal physician, other family members, and friends (Table II). Twenty-seven percent of the women reported that they were significantly influenced in their treatment decision by a person who had breast cancer in the past. Factors that were very influential for the women in their treatment choice include survival or fear of recurrence (69%), family or friends (16%), fear of deformity, mutilation, loss of breast, or body image (13%), fear of radiation, duration of radiation, or distance to travel for radiation treatments (12%), thoughts of reconstruction (4%), and fear of pain (3%) (Table III). The majority of study participants (72%) indicated concerns of some nature regarding radiation therapy. Of the patients who indicated concern, 60% indicated general concerns with receiving radiation, 54% were concerned with duration of the treatment, and 52% were concerned with the distance of travel required for radiation therapy. With respect to satisfaction of the women’s choice of treatment for breast cancer, 64% were very satisfied, 25% were satisfied, 4% were somewhat satisfied, and 2% were dissatisfied. Seventy-five percent of women would recommend their procedure to another person with breast cancer. Of the patients who had MRM for the treatment of breast cancer, 42% had the MRM at the time of the initial biopsy and 43% had the MRM as a second procedure. Breast reconstruction was discussed by the surgeon before the procedure (45%), after the procedure (14%), or was not discussed (41%). Of the women who reported reconstruction being discussed before the procedure, the mean age was 60 years. The mean age of patients in which reconstruction was discussed after the procedure was 61 years, and the mean age of patients who report not having reconstruction discussed was 68 years (P 5 0.002). Only 6%
COMMENTS The results of the physicians survey shows that most of the surgeons in North Dakota are well educated with respect to treatment of early stage breast cancer. There still is a small percentage of surgeons that either prefer or recommend MRM for a patient when BCS would be a viable option. The patients reported that the most influential person in their treatment decision was the surgeon; therefore, continuing education of the surgeons must be undertaken to insure that all the treatment options are presented to the women in an unbiased fashion. Many factors are involved in a woman’s choice of treatment for breast cancer. Factors that influence the patient’s choice are not always the ones the treating physician think are important. The surgeons believed that most of the treatment choices were based on convenience and the patient’s belief that MRM is a more complete surgical procedure. The patients reported that fear of recurrence was the most influential factor in the decision. A majority of women also expressed some degree of concern over radiation treatments and that this was a significant factor in the decision-making process. The distance to travel for access to radiation therapy was an equally important issue in the choice of MRM over BCS. Since radiation therapy is only available in the four largest cities in North Dakota—Fargo, Grand Forks, Bismarck, and Minot—many patients would have to travel a great distance for treatment. Other factors such as weather, the cost of travel, and inconvenience were important in the decision against radiotherapy. Current radiotherapy treatment regimens require daily treatments for up to 6 weeks. This is a significant burden on patients who opt for conservative treatment. Currently, investigations are in progress to determine the optimal duration of treatment for radiation therapy. If shorter treatment times are found to be equally effective in the treatment of breast cancer, this would lessen the travel burden on patients. Shortened treatment schedules may help patients choose BCS over MRM, even though the distance to treatment centers may not change drastically in the rural setting. Although women expressed a fear of radiation as a significant factor in their choice of treatment, the physicians believed that a favorable impression toward a radiation oncologist was influential in the decision-making process. Therefore, early involvement of a radiation oncologist may help alleviate the fear of radiation by supplying the patient with treatment information. Answering questions and dispelling rumors, the patient can be better informed prior to making a treatment choice. Education on breast cancer as a whole must be more specific. Patients in North Dakota (93%) believed that “cutting it off ” or “ridding self of breast” is a better or more complete operation even though the current literature indicates for early stage breast cancer, BCS is as effective as MRM. Educational material that the patients can take home and review may be helpful to better educate the patients on treatment options. Information regarding breast reconstruction may also
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TABLE III Decision Factors
Survival Pain Family/friend support Self-image Sexual image Radiation treatment Reconstruction
Very Frequent 132 6 31 25 9 23 8
%
Somewhat Frequent
%
Minimally Frequent
%
Not Frequent
Missing
%
69.1 3.1 16.2 13.1 4.7 12 4.2
29 15 25 41 38 36 8
15.2 7.9 13.1 21.5 19.9 18.8 4.2
17 58 34 70 54 56 31
8.9 30.4 17.8 36.6 28.3 29.3 16.2
13 40 77 44 41 66 70
6.8 20.9 40.3 23 21.5 34.6 36.6
0 72 24 7 49 10 74
(Percentages calculated with denominator n 5 191)
help patients make their treatment choice. Physicians reported they discussed breast reconstruction before the treatment 64% of the time whereas the patients only recall being told about reconstruction before the treatment 27% of the time. The physicians reported discussing breast reconstruction either before or after the procedure 78% of the time where as the women report only being told about reconstruction 59% of the time. Forty-one percent of the patients reported reconstruction never being discussed with them. The mean age of the patients who said they were informed about breast reconstruction was 60 years compared with 68 years for patients who reported not being informed. Education material to take home may help the patient to remove the discrepancy in the information being portrayed. With valid information regarding reconstruction, fully informed decisions of breast cancer treatment can be made. The age of the patients seeking both medical and nonmedical second opinion was statistically significant. The mean age was younger for the women seeking a second opinion, and a majority of women who obtained a second opinion opted for the second treatment option. Less emphasis should be placed on patient age by the treating physician to insure that all patients, regardless of age, are given all the viable treatment options for her particular stage of breast cancer. By educating all patients as to both treatment options that exist for early stage breast cancer, the women will be able to make an informed decision regarding their treatment choice. Although a smaller percentage of women in North Dakota as compared with more populated states choose BCS for the treatment of early stage breast cancer, there appeared to be well-defined reasons for their choice. Some of the reasons may never be overcome in a rural state. The distance to travel for radiotherapy, the weather, and inconvenience of treatment may never change owing to the limited population base of a rural state. Factors were identified in this study that could be acted on to increase the number of patients who choose BCS over MRM. The biggest factor that needs to be changed is education, of both surgeon and patient. Although most surgeons believe that BCS and MRM are equally effective treatments for early stage breast cancer, there still is a small percentage of
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surgeons who are not convinced of the treatment data. All surgeons who are treating breast cancer must be well educated on the current treatment standards and not let their own bias influence the woman’s treatment choice. Efforts to educate the patient also need to continue. Women in the study seem to be basing their treatment decisions on incomplete information. Care must be taken to insure that the women have all the information presented to them and that they understand the information with respect to the surgical treatment of breast cancer, radiotherapy, and reconstruction. By making sure that all information is understood, a woman can then make an educated, informed decision on the treatment choice that is right for her.
REFERENCES 1. Veronesi U, Saccozzi R, DelVecchio M, et al. Comparing radical mastectomy with quadrantectomy, axillary dissection, and radiotherapy in patients with small cancers of the breast. NEJM. 1981; 305:6 –11. 2. Fisher B, Anderson S, Redmond C, et al. Reanalysis and results after 12 years of follow-up in a randomized clinical trial comparing total mastectomy with lumpectomy with or without irradiation in the treatment of breast cancer. NEJM. 1995;333:1456 –1461. 3. Consensus statement. Treatment of early-stage breast cancer. NIH Consensus Development Conference, June 18 –21, 1990. Bethesda, Md: National Institute of Health; 1990;8(6):1–19. 4. Nuttinger A, Gottlieb M, Veum J, et al. Geographic variations in the use of breast conserving treatment for breast cancer. NEJM. 1992;326:1102–1107. 5. Osteen T, Steeke G, Menck H, et al. Regional differences in surgical management of breast cancer. CA. 1992;42:39 – 43. 6. Lee-Feldstein A, Anton-Culver H, Feldstein P. Treatment differences and other prognostic factors related to breast cancer survival. JAMA. 1994;271:1163–1168. 7. Kotwall C. Society of Surgical Oncology 48th Annual Cancer Symposium, Boston, Massachusetts, 1995. 8. US Department of Commerce, Bureau of the Census. 1990 Census of Population and Housing. Washington, DC: US Government Printing Office; 1993. 9. Hutchinson SA. Getting started on a study. In: Wilson HS, ed. Research in Nursing. 2nd ed. Redwood City, Cal. Addison-Wilson Publishing; 1989:227–274. 10. SAS Users Guide Version 6. 4th ed. Cary, NC: SAS Institute Inc., 1989.
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DISCUSSION Byron McGregor, MD (Reno, Nevada): This was a nice effort to wring a lot of information out of a relatively small database. Just the numbers involved in a 15-point questionnaire to 17 surgeons and only a 72% response rate from your women must have wreaked havoc with your power analysis. But these are intriguing observations, nevertheless. Without getting lost in the numbers, and if I read your manuscript correctly: (1) All but one surgeon in the entire state of North Dakota has bought the party line that these two therapies are equivalent; (2) most of the women thought equivalent survival was the most important factor, and most of the women learned this from their surgeon; (3) most of the women said both options had been discussed; but (4) all those who did have both options discussed came away from that counseling session thinking that mastectomy was a better choice. Is there some disingenuousness alive on the high prairie, or how else does your survey explain this dichotomy? Second, as we just heard from Dr. Weintritt, there’s more to education than whether to perform a radical mastectomy or one of its modifications. There are hormone receptors, S-phase analysis, at least half a dozen molecular markers, chromosome analysis, and polymerase chain reaction analysis of lymph node cytology. Are these modalities available in the pioneer counties, and how do you suggest we make this information about them available? James A. Edney, MD (Omaha, Nebraska): Why did you limit this study to the four population centers in the state? I suspect that North Dakota is not a lot different from other rural states. If you included the surgeons in the rural areas where radiation therapy wasn’t available, or breast reconstruction wasn’t available as an immediate option, I suspect that the incidence of mastectomy would be even higher than it has been presented in your study. J. Gary Maxwell, MD (Wilmington, North Carolina): In our area, the facility fee alone for radiation therapy is of the order of $15,000, not including the therapist’s professional fee. Do you have any information about the facility fee for radiation therapy or the professional fee charged by the radiologist? Do you think they might be operative in the decision-making process? Norman C. Estes, MD (Kansas City, Kansas): I notice in your study that patients were only 65% “very satisfied.” Unless some of those patients had a recurrence, I would have thought you would have a higher percentage. Did you have any data that they thought they had made the wrong choice? I think we’re looking at numbers too much in trying to get an exact percentage of patients who are going to get minimal operations. Patients need to remain satisfied, and if the surgeon recommends a clinically successful treatment that the patient remains satisfied with for life, wouldn’t that be a success? G. Douglas Schmitz, MD (Torrington, Wyoming): From a very small town surgeon’s perspective, I wanted to ask
whether we should present both options to these patients and tell them that they really can’t make a bad decision. But it sounds like the more breast conservation surgery, the better. Should I be pushing breast conservation surgery, or should I let the patient make up their mind? We don’t have the availability of radiation very close. And so that affects it a lot. Charles K. Harmon, MD (Tulsa, Oklahoma): I was intrigued that 61% of women that sought a second opinion chose to stay with that second opinion. And I was interested to know if most women who sought second opinions had been advised to have a modified radical mastectomy or the breast conservation surgery. Do you have any information on what the first recommendation was? James A. Edney, MD (Omaha, Nebraska): I’m reminded of a paper presented by Charlie Abernathy in about 1992 at this meeting, which was a statewide survey of Colorado surgeons, questioning the high incidence of mastectomy versus breast-conserving surgery. They found that while the surgeons generally agreed that the two options were equal in these cases, over 34% of the surgeons admitted to subtly biasing the patient toward mastectomy. I think one of the common threads in all of this is that the deciding factor is largely the way a surgeon presents the information as opposed to the availability of radiation therapy facilities or whether you’re in a rural or urban area.
CLOSING Douglas R. Stafford, MD: With respect to the question why just the surgeons in the four major cities in North Dakota were surveyed, those are the four cities in which radiation therapy is available, and in an attempt to limit our data, that was our starting point. North Dakota is a rural state, and there are similar states that are members of the Southwest Surgical Congress, including Montana, Utah, and Nevada, which have similar problems with respect to breast conservation surgery. If patients are going to go on to radiation therapy, it’s a great burden to travel great distances, often in adverse weather. The winters in North Dakota are quite difficult, and many times days go by that you cannot travel out in the country. Many women, although they’re being told that both treatments are of equal value, choose mastectomy just to be done with their procedure and not have to worry about the travel burdens that are placed on them; and that really is a significant factor when these women are choosing their treatment. Dr. Schmitz, I think it’s important that all the information is explained to the patient and that they are both equal treatment options, and then the patient has to decide. I don’t think it’s right that the surgeon should be pushing breast conservation surgery over mastectomy. With respect to the patients who were dissatisfied, we did not analyze the reasons they weren’t satisfied. And I agree, you’d like to see more patients very satisfied with their treatment choice.
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