Factors influencing surgical treatment decisions for breast cancer: a qualitative exploration of surgeon and patient perspectives

Original Article


Factors influencing surgical treatment decisions for breast cancer: a qualitative exploration of surgeon and patient perspectives


E. Dicks, PhD*, R. Roome, J. Chafe, RN MN, E. Powell, MD§, F. McCrate, PhD§, C. Simmonds, PhD*, H. Etchegary, PhD*


doi: http://dx.doi.org/10.3747/co.26.4305


ABSTRACT

Background

The rate of mastectomy is much higher in Newfoundland and Labrador than in any other province in Canada, even for women diagnosed at an early stage. In this paper, we present qualitative data from women who have made a decision for surgical treatment and from breast surgeons in an effort to better explicate factors influencing breast cancer (bca) surgical decision-making.

Methods

The study’s descriptive, qualitative design involved holding interviews with breast surgeons and holding focus groups and interviews with women who were offered the choice of breast-conserving surgery (bcs) or mastectomy (mt).

Results

Participants included 35 women and 13 surgeons. High interest in mt and increasing requests for prophylactic contralateral mt were evident. A host of factors—clinical, demographic, psychosocial, education-related, and cultural—influenced the decisions. A key factor for women was fear of recurrence and a need to “just get rid of it,” but the experiences of others also influenced the decisions. Life stage and family considerations also factored prominently into women’s decisions.

Conclusions

Women with early-stage bca more often chose mt and often demanded prophylactic removal of the healthy breast. Findings highlight the importance of ensuring that women at average risk are appropriately counselled about the low likelihood of a subsequent contralateral bca and the lack of survival benefit associated with prophylactic contralateral mt. Findings also revealed other areas of presurgical discussion that might help women think through their personal circumstances and values so as to encourage informed surgical decisions.

KEYWORDS: Breast cancer, mastectomy, lumpectomy, surgery, decision-making

BACKGROUND

Breast cancer (bca) remains the cancer most commonly diagnosed in Canadian women1. However, improvements in research and treatment suggest a favourable prognosis for many women diagnosed with early-stage bca (stage i or ii)1,2. Guidelines suggest that, as primary surgical treatment (if not contraindicated), these women be offered a choice of mastectomy (mt) or breast-conserving surgery (bcs) with radiotherapy3,4. Survival rates for those two options are equivalent5,6. Given that bcs has a comparable survival benefit and is less invasive in nature, it might be assumed that women with early-stage bca would be more likely to choose bcs. However, wide variation in the surgical management of bca is observed worldwide710, highlighting the need for further research into the factors that influence surgical treatment decisions.

Interprovincial variation in surgical choices for bca is reported in Canada2. The mt rate ranged from 26% in Quebec to 69% in Newfoundland and Labrador, with an average crude rate of 39%. Most cases of bca in Canada are diagnosed at an early stage, but in Newfoundland and Labrador (compared with other provinces), a higher percentage are diagnosed at an advanced stage (stage iii or iv)1. The higher mt rate in Newfoundland and Labrador might be explained by the larger number of advanced cases. However, recent quantitative work by our team11 revealed that, although tumour stage is a significant predictor of surgical choice, mt was the favoured choice across all age groups, tumour stages, and regions of the province, suggesting that additional factors underlie these surgical decisions.

A host of factors affect a woman’s choice of mt or bcs. Recent reviews12,13 revealed distance from a radiation facility1,2,14, fear of cancer recurrence and perceived survival outcome1517, concerns about radiation18, concerns about body image and sexuality19,20, demographic factors such as age and education12,13, and surgeon recommendation to be key factors in surgical treatment choices21,22. Fewer publications about the perspectives of breast surgeons are available, but those that are describe not only increasing rates of mt in their practices, but also increasing requests for contralateral prophylactic mt (cpm)23,24. Surgeons described offering choice only when the clinical benefits were equal; they generally did not make a recommendation for either mt or bcs, instead they presented all the relevant risk and benefit information to women making the decision23,24.

The rate of mt in women with early-stage bca is higher in Newfoundland and Labrador than in any other province2. A better understanding of that pattern is required to ensure appropriate surgical care and to promote informed discussions between women and providers. In the present paper, to better explicate factors influencing bca surgical decision-making, we present qualitative data from surgeons and women who have made such surgical decisions.

METHODS

Sampling and Recruitment

This study was approved by the provincial Health Research Ethics Board (no. 16.023).

Recruitment and data collection occurred simultaneously between May 2016 and May 2017 in the 4 regional health authorities (rhas) of Newfoundland and Labrador. Eastern Health is the largest rha and includes the capital city of St. John’s. The other 3 rhas have smaller populations, with Central being the second most populous, followed by Western Health and Labrador–Grenfell Health. The provincial radiation treatment facility is located at the tertiary health centre and main cancer care site in St. John’s. Thus, any woman living elsewhere in Newfoundland and Labrador and choosing bcs must travel for radiotherapy.

We purposively sampled women and surgeons from the 4 rhas. Purposive sampling is a standard qualitative technique that aims to sample a diverse selection of participants who have lived experience with the issue25. Surgeons and surgical residents for potential participation were identified by the medical oncologist on the study team (EP) through the Canadian Medical Directory and the surgical residency program of the Faculty of Medicine at Memorial University. Surgeons were purposively sampled to ensure variation in rha, rural or urban place of practice, and sex. Surgeons and residents received an e-mail invitation from the medical oncologist.

Multiple methods were used to recruit women who had made surgical decisions. All participating surgeons were invited to inform eligible patients about the study; however, no women were recruited in that way. Multiple study advertisements were disseminated in the 4 rhas. Communications departments of health care centres within the rhas advertised the study through typical social media channels (e-mail messages, e-mail list messages, online newsletters); through provincial events attended by team members who could then advertise the study and answer questions (for example, the Run for the Cure fundraising event); through the annual bca retreat, which placed a 1-page study description in participant information packs; through support groups, who were contacted and sent study invitations (in one instance, a team member attended and explained the study); through a radio interview with the corresponding author held in the Central rha; and through study posters circulated in hard copy to multiple sites and posted to multiple Facebook pages. In all instances, women who were offered a choice of mt or bcs were invited to contact the research team to take part.

Data Collection

Surgeons were invited to take part in a face-to-face or telephone interview, but were also given the choice to provide their answers in a Word document after they had received the interview guide by e-mail. Women were invited to a focus group discussion with other women who had made a bca surgical decision. In an effort to accommodate as many participants as possible, women were also given the option to attend an individual interview or to provide their answers by e-mail. Guides for the interviews and focus groups were created by the study team after a literature review; the guides were also underpinned by the experience of study team members (including a patient partner). The guides are available upon request.

All discussions were semi-structured, using prompts and open-ended questions to facilitate discussion. Focus groups are ideal for exploring the personal meaning of health and illness, and are useful when people have shared experiences26. Focus groups were moderated by two team members (ED, HE) experienced in qualitative data collection. Interviews were conducted by one team member (CS) experienced in qualitative interviewing. Interviews lasted about 40 minutes; focus group discussions lasted about 60 minutes. In all discussions, questions were not confined to a specific order, and participants were encouraged to discuss other issues important to them. Despite some different wording that emerged naturally during interviews and focus groups, all discussions encompassed the same content. A core set of topics was covered, including influences on surgical decisions, the decision-making atmosphere, information provided during surgical consultations, and information needs. Here, we focus on the factors that influenced surgical treatment decisions.

Data Analysis

All discussions were tape-recorded and transcribed verbatim. A small proportion of the participants used e-mail, and their transcripts were included verbatim in the analysis. Qualitative description27 was used to summarize the data pertaining to surgical decisions. Qualitative description is a form of naturalistic inquiry with no specific assumptions about the data. Instead, data are presented in the language of participants; no attempt is made to present the data in theoretical ways. The end result is a comprehensive summary of the event in question27.

Transcripts were read and reread several times by one investigator (HE). Interview data were then isolated and organized by discussion topic (for example, initial diagnosis, choice of bca surgery, information provided, and so on). Those sections were read and reread to identify and index emerging categories and themes, which were annotated on the transcripts. No qualitative software was used in the analysis. Inductive subcoding of the data relevant to the surgical decision was completed using the constant comparison method28,29. In that process, data were compared between and within transcripts to establish analytical categories and themes2729. The method required constant shifting between (and within) transcripts to continuously compare the perceptions and experiences of participants. Three other team members (ED, RR, JC) independently read all transcripts and highlighted emerging themes. Discussions between those investigators throughout the analysis verified emerging categories and themes until no new themes could be added. When the investigators had agreed on the thematic analysis, findings were presented to and discussed with the research team. No new categories or themes were suggested after the team discussion, and data saturation was deemed complete.

RESULTS

The study attracted participation by 35 women, 12 surgeons, and 1 surgical resident. The resident’s responses were very similar to those of the surgeons and are therefore reported with the surgeon group. Focus groups were held with women around the province: 3 in St. John’s, 2 in Corner Brook, 1 in Gander, and 1 in Happy Valley–Goose Bay (Labrador). Table I provides details about data collection.

TABLE I Data collection methods used

 

Participants

Table II displays demographic information for the participating surgeons and women.

TABLE II Demographic information for 13 surgeon participants and 35 patient participants

 

Of the women, 74% underwent either mt as their first and only surgery or mt followed by prophylactic removal of the other breast at a later date. In keeping with the high rate of mt reported in the literature and in accounts from surgeons, a small proportion of the women underwent bcs. Women were 54 years of age on average, and about 5 years had passed since their last bca surgery. Three quarters lived in an urban setting. Most were married with children (approximately 83%), rated themselves in a middle (66%) or high (26%) income bracket, and were highly educated (approximately 60% had an undergraduate or graduate degree).

Surgeons had been in practice for an average of 10 years, and mt constituted the greatest proportion of the bca surgeries that they performed (63%). Some surgeons indicated that they performed no bcs at all. Most practiced in an urban and academic setting, although about one third practiced in a community setting.

Factors Influencing Surgical Treatment Decisions

A host of clinical, demographic, cultural, and psychosocial factors were noted to influence women’s decisions about mt or bcs. The accounts of the women and the surgeons showed a high rate of concordance, with only slight differences. Tables III and IV outline key concepts in the data, with supporting quotes.

TABLE III Key concepts raised by surgeons, with supporting quotes


 

TABLE IV Key concepts raised by women, with supporting quotes


 

Surgeons

All surgeons recognized the high rate of mt in the province, and none were surprised. In keeping with the rising rate of cpm12,16, some recalled patients who requested that both breasts be removed despite the lack of a clinical need (Table III).

Surgeons explained that their surgical recommendation (if one was made) was based strictly on clinical criteria and guidelines: “The standards of care. So basically, I follow our guidelines [Surgeon 13].” Specific clinical factors influenced the recommendation (Table III).

Although they referred solely to evidence-based surgical treatment recommendations, surgeons had clearly observed numerous variables that they perceived to be influencing the decisions taken by their patients (Table III). Those reasons ranged from fear and worry to geography, family influences, age, culture, and lack of education or understanding.

Women

Women recounted numerous influences on their surgical decision (Table IV). Although clinical factors or genetic predisposition were sometimes noted, those factors were mentioned least often. In some cases, women pushed for not only a mt, but a cpm, often against their surgeon’s advice (Table IV).

The factor mentioned most often, by far, was fear. Women described specific fears (for example, of radiation) or simply described generalized bca-associated fear and anxiety that they could not live with (Table IV). As one women remembered it, “Although offered the choice of surgery, I didn’t even consider a lumpectomy; it wasn’t even a consideration for me. I just wanted it gone” [focus group, Labrador]. There was a feeling of relief when breasts were removed (Table IV).

Women described family considerations as well— in particular, having young children or a partner for whom they were a caregiver, as factors in their declining radiation and concomitantly being away from home (Table IV). Related were a woman’s life stage and age at the time of the decision. Those who had finished childrearing indicated that the choice of surgery might have been different had they been younger or still raising children. The experiences of others also seemed to influence decisions, or at least were used as partial justification for bcs or mt (Table IV).

Of the few women who chose lumpectomy, their recollections included a recommendation from their surgeon:

He was very supportive and told me of all the options—types of surgeries, follow-up possibilities (chemo, radiation, meds, etc.)—and recommended lumpectomy and radiation. I was one hundred percent positive that a mastectomy was the only way to go, but after the information obtained, I fully supported that recommendation (lumpectomy/rad), as did my husband.

—St. John’s, e-mail interview

For others, body image concerns seemed to be an important consideration:

I was not ready to look down and see nothing where my breast should be. I made my decision based on my own feelings, which were confirmed by those of my surgeon. Body image and my role as a “woman” were the most important factors in my decision. I didn’t need a whole lot of time and was quite comfortable with it.

—St. John’s, second e-mail interview

DISCUSSION AND CONCLUSIONS

Surgical treatment decisions in bca have been well studied. Nonetheless, the perspectives of surgeons are underexplored, and considerable variation in breast units worldwide suggests that additional research is warranted.

Women described demanding a mt, and often cpm, which was echoed by surgeons. Recent literature describes increasing interest in cpm despite evidence of no significant survival benefit, at least for women with a first diagnosis of unilateral bca23,24,30,31. Although the present study did not focus on cpm, the fact that women spontaneously talked about their experiences with asking surgeons for that surgery is notable. Such findings highlight the importance of ensuring that women at average risk are appropriately counselled about the low likelihood of a subsequent contralateral bca and the lack of survival benefit with cpm. Discussions with those women might cover less invasive treatment options (for example, anti-estrogen therapy) and the risks associated with additional surgery (for example, the potential for additional complications and longer recovery time)23.

Surgeons mentioned clinical factors (tumour characteristics, for instance) and practice guidelines as influencing their surgical recommendation (if a recommendation was made). Otherwise, they presented information about bcs and mt and left the decision to patients, in keeping with practice guidelines in Canada for the treatment of early-stage bca24. In contrast, surgeons in the United States are guided by state legislation that mandates elements of the surgical discussion with patients (for example, reconstruction, presentation of all treatment options)24. Surgeons in our study rarely mentioned reconstruction, and those who did indicated that their patients expressed little interest—a finding that corresponds with the women’s accounts (very few described undergoing or even considering reconstruction).

All participants described a culture in Newfoundland and Labrador that clearly favours mt. Quantitative data generated by our team also bear this out11. Women described the strength and resilience of women in the province; surgeons and women both described a lack of attachment to the breast as a sexual entity and a lack of concern with cosmesis. Only 1 participant who chose bcs spoke about her identity as a women being a key factor in her surgical choice. Body image and sexuality concerns have been reported to influence women’s surgical choices19,20,32, but we did not readily observe such concerns in our data. Although we do not know exactly what it is about the culture in Newfoundland and Labrador that influences the trend of mt, we think it important to note—particularly for surgeons who come to practice in the province. Those findings could provide a kind of anticipatory guidance about what they could face in practice and allow them to prepare alternatives for discussion.

Our findings suggest that the type of information provided to women is critically important; surgeons reported deficiencies in women’s understanding of the equivalence of surgical options for early-stage bca. Women described a need to “just get rid of it” so as to lessen fears or worry and increase their chance of survival, a robust finding in the literature12,13,17,18,32,33 and an attitude that persists despite the equivalency of bcs and mt for prognosis in early-stage bca. Those findings suggest the need for reconsideration of the timing and type of information provided to women about their surgical options. In this paper, we have focused on factors affecting surgical choice; however, a second paper by our team will explore the decision-making context in more detail, including focusing on the information provided and women’s information needs. Here, we note that the push for mt in women eligible for bcs highlights the need to explore what women understand and what is presented during initial surgical consultations. For example, women should understand their personal risks for local, contralateral, and systemic recurrence and how removal of the unaffected breast does not affect those risks equally16.

In line with other research, we observed no consistent effect of age on the surgical decision1113. But findings in the present study and in other publications suggest a trend of younger women choosing mt. Although surgeons noted that older patients were more likely to be unconcerned about losing a breast, women and surgeons both recognized that life stage—and particularly whether children were grown or not—influenced the decision. The personal circumstances of patients should be part of the discussion at the surgical consultation to encourage women to reflect on personal values and surgical preferences in light of their personal circumstances. Those circumstances can also reflect the influence of geography on the surgical decision. In our quantitative data11, driving time to the province’s only radiation facility was a significant predictor of surgical choice. Women living in rural and remote areas have a greater distance to travel for radiation. In a downloadable Quick Stats file, the Canadian Institute for Health Information provides bca surgical data for the provinces and territories for 2013–2014: https://www.cihi.ca/sites/default/files/document/quickstat_breastcancer_en_1.xlsm. Those data also show a high rate of index mt for Newfoundland and Labrador (63.2%), exceeded only by the territories (70.7%). Saskatchewan and Prince Edward Island had the next highest rates (54.4% and 53.8% respectively). In our quantitative study11, women were 1.15 times more likely to choose mt for every 40-minute increase in driving time. Nonetheless, mt remained the most common choice across all categories of driving time.

The literature is robust in highlighting the influence of proximity to radiation facilities on surgical choice1215. We had expected to find similar evidence in the present study, such that women from health authorities outside of Eastern Health would be more likely to undergo mt. However, the present findings reveal that distance is particularly problematic depending on life circumstances, such as having school-age children or being a caregiver for a partner. In those situations, women stated that they simply could not be away from home for 6 weeks. Indeed, some reported they did not even consider bcs for that reason. Again, we note that reflection on personal circumstances and a discussion of potential solutions for those women might be an important component of the presurgical discussion so as to ensure that women are not disadvantaged because of where they live. Continued improvements in irradiation techniques (for example, shorter regimens) could mean that surgical trends will favour bcs in the future12. It will therefore be important that women understand the shorter time needed.

Finally, we note the effect of the stories and experiences of others on women’s surgical choices, a factor also described by surgeons and reported in the literature18. It will be important to discuss with women the influence of the stories of others, particularly when those surgical choices were made in a different era, when treatment options were fewer, and prognosis was not as positive. Such experiential knowledge, including empathetic knowledge of the experiences of the cancer journeys of others, influences prophylactic surgical decisions in the context of inherited breast and colon cancer34,35. Our findings suggest that it also plays a role in the surgical decision-making of bca patients. That role is not well described in the literature, and future studies could focus on the influence of experiential knowledge on bca surgical choices.

Study findings should be interpreted in light of our study’s limitations. We did not have access to the clinical records of women participants. We therefore cannot confirm clinical details or factors that might have affected decisions (for example, hormone receptor status, genetic mutation status) or provided a more comprehensive picture of the surgical decision (for example, reconstruction). We note, however, that very few women or surgeons described reconstruction requests.

A key limitation of the study is the small number of women who had chosen bcs. That limitation was unsurprising given the clear preference for mt in our province, but future research might focus exclusively on this group to more clearly elucidate their understanding of surgical choices. We were also able to recruit only a small number of surgeons. Their accounts were very similar, and we noted great congruence between their accounts and the accounts of women. However, larger numbers of participants from areas outside Eastern Health might have highlighted additional influences on surgical decisions.

As in all research, selection bias might be present, in that women with a preference for mt could have been more likely to take part. The data are also subject to recollection and memory biases. Most women had made their surgical decision at least 5 years before being interviewed; although their perspectives are important, they do not reflect the experiences of women who made the decision more recently. Future research could include newly diagnosed women to better reflect decisions at the time of diagnosis.

Despite the foregoing limitations, the data reveal a consistent choice of mt by participants and surgical practices, raising questions about how patients with bca in Newfoundland and Labrador are understanding and exercising their treatment options. We hope that the findings are helpful to women and clinicians alike—in particular, by outlining areas for reflection and discussion during surgical consultations.

ACKNOWLEDGMENTS

We are grateful to the women and surgeons who took part in this study. Funding to HE and ED (co-principal investigators) was provided by a grant from the Enhancing Healthcare in Newfoundland and Labrador competition, administered through the Newfoundland and Labrador Centre for Applied Health Research, St. John’s, NL.

CONFLICT OF INTEREST DISCLOSURES

We have read and understood Current Oncology’s policy on disclosing conflicts of interest, and we declare that we have none.

AUTHOR AFFILIATIONS

*Faculty of Medicine, Memorial University, St. John’s, NL,
Patient partner, Eastern Regional Health Authority, St. John’s, NL,
Centre for Nursing Studies, Eastern Regional Health Authority, St. John’s, NL,
§Cancer Care Program, Eastern Regional Health Authority, St. John’s, NL.

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Correspondence to: Holly Etchegary, Faculty of Medicine, Memorial University, Room 4M210, Craig L. Dobbin Centre for Genetics, St. John’s, Newfoundland and Labrador A1B 3V6. E-mail: holly.etchegary@med.mun.ca

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Current Oncology, VOLUME 26, NUMBER 2, April 2019








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