FormalPara Key Points

  • Women diagnosed with breast cancer and preparing for surgery can choose between breast-conserving therapy (BCT) and mastectomy. Breast cancer survival for BCT and mastectomy are equivalent.

  • Surgical patterns show that American Indian/Alaska Native (AI/AN) women in the United States have more mastectomy and less breast-conserving therapy for early-stage breast cancer compared to non-Hispanic White (NHW) women.

  • For all women, regardless of race, informed consent for lumpectomy vs. mastectomy is a complex, time-intensive process entailing comprehensive counseling. Additional historical and cultural considerations must inform consent guidelines for Indigenous women preparing for breast cancer surgery.

  • We propose innovative solutions to overcome the challenges that limit Indigenous women’s access to their preferred surgical choice.

Breast-conserving therapy (BCT) consists of lumpectomy followed by radiation. A lumpectomy removes the tumor and surrounding rim of normal breast tissue, leaving most of the breast volume and shape intact. A mastectomy removes the entirety of the breast tissue. Randomized trials with long-term follow-up demonstrate that, regardless of the stage of disease, survival is equivalent for both treatment options [1,2,3]. While the risk of recurrence with lumpectomy alone is higher, modern multidisciplinary care combining lumpectomy with radiation and various forms of systemic therapy achieves a similar low risk of recurrence, allowing clinicians to offer BCT or mastectomy as equally safe standard care options. This establishes a surgical choice that is highly personal and should be individualized to consider multiple unique factors, including age, family history, hereditary gene mutations, size of the tumor relative to total breast volume, ability to complete multimodality breast care and surveillance, future plans regarding fertility and lactation, and overall best outcome for the individual’s body-image, lifestyle, and peace of mind.

BCT consistently shows decreased surgical complications, decreased pain, faster recovery, more favorable cosmetics, and better-preserved sexuality and body image [1, 4]. This is not to say that it is the best choice for every woman. BCT is contraindicated for women with inflammatory breast cancer. For some, mastectomy is preferred for personal reasons, even with a full understanding of equivalent survival following BCT. Provided the patient is well-informed and has worked with her clinical team to ensure her decisions are safe, she should be supported in her surgical choice.

Surgical Disparities and Barriers for Indigenous Women

Overall, American Indian/Alaska Native (AI/AN) women have a statistically significant lower incidence of breast cancer compared with non-Hispanic White (NHW) women for all stages (RR 0.90, 95% CI 0.87–0.93) [1]. Unfortunately, despite overall lower incidence, AI/AN women have the worst breast cancer survival outcomes of all racial groups in the United States [1, 5,6,7,8]. Our data analysis, conducted with the Centers for Disease Control and Prevention, found no differences between AI/AN and NHW women in the type of operation performed for late-stage breast cancer. However, we found a statistically significant difference in the types of operations performed for early-stage disease. Overall, AI/AN women with early-stage breast cancer undergo mastectomy at a statistically higher percentage than NHW women (41% vs. 34.4%, p<0.001) and undergo lumpectomy at a statistically lower percentage (59% vs. 65.6%). Regional variations show a sharper disparity, with 47–49% of AI/AN women from the Northern Plains and Alaska undergoing mastectomy compared to 33–36% of NHW women in these same regions (Fig. 57.1) [1]. While our data cannot explain this phenomenon, they point to a missed opportunity for AI/AN women in the United States, and possibly for other Indigenous women (depending on global surgical patterns), to treat early-stage breast cancers with BCT, a treatment with documented benefits including reduced surgical risk and pain, faster recovery, and high patient satisfaction.

Fig. 57.1
An infographic includes the following data. 1. Disparities exist in cancer-related outcomes for A I slash A N women with breast cancer. 2. More A I slash A N women receive mastectomy for early-stage disease than white women. 3. Future clinical directions should focus on awareness, decision-making, and access to breast conservation.

Disparities in breast-conserving therapy for American Indian/Alaska Native women with early-stage breast cancer. (Source: Erdrich et al. [9])

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Disparities in Multidisciplinary Care: The Broader Context

Data analyses using different US national registries show that AI/AN women are less likely to receive guideline-concordant preoperative biopsy, adjuvant chemotherapy, and post-treatment surveillance for breast cancer [1, 10]. There are no published data for the completion of reconstruction following mastectomy among AI/AN women. Other studies show lower rates of reconstruction for racial minorities, and the same is suspected but unproven for AI/AN women [1]. Radiation is a cornerstone of breast conservation, and our data interestingly show no overall differences in uptake of post-lumpectomy radiation treatment between AI/AN and NHW women. It is reassuring that when BCT is implemented, it is completed effectively for AI/AN women [1].

Consent Guidelines for Indigenous Women Preparing for Breast Cancer Surgery

Counseling and consent for breast cancer surgery are exceptionally intricate and time intensive. In the early history of breast cancer care, the only option was the highly morbid and deforming radical mastectomy. Through medical advances and decades of research, modern breast cancer care has replaced radical mastectomy with customized multidisciplinary treatment pathways. Patients can now choose between lumpectomy and mastectomy and consider how their choice fits into the context of other treatment decisions regarding chemotherapy, endocrine therapy, radiation, unilateral or bilateral surgery, reconstruction, surveillance, and survivorship. This range of mutually influencing decisions places understandable pressure on the central decision between lumpectomy or mastectomy. It is a clinician’s responsibility and ethical duty to ensure that the patient is well-informed about her options and free to choose without coercion. For clinicians working with Indigenous and Tribal peoples, all standard tenets of consent specific to breast cancer surgical choices must be maintained. In addition, clinicians should be aware of the complex contexts in which decisions are made.

Historical, Social, and Cultural Context

There is a history of Indigenous women receiving inadequate information about procedures, being coerced into surgery, and even undergoing procedures to which they did not consent. In the mid-twentieth century, there were AI/AN women who consented to procedures such as appendectomy and then were sterilized without disclosure [11], and between 1962 and 1976, it is estimated that 25% of AI/AN women of reproductive age were forcibly sterilized [11, 12]. The methods that facilitated this dark history included, but were not limited to, the threat of withholding medical/Tribal services or removing children if women did not comply with the procedure. The fear of child removal was a very real and effective tactic facilitated by US boarding school policy and prevalent adoption practices prior to the passing of the 1978 Indian Child Welfare Act [11, 13]. When consent was obtained, it was often during childbirth, at a time when women were exhausted, vulnerable, and not in a position to make well-informed decisions [11]. The abusive practice of forced sterilization fits into a wider legacy of colonialism that has negatively affected every dimension of Indigenous health, and inevitably informs how Indigenous patients perceive modern healthcare, the degree to which they trust healthcare providers, and their interactions with health systems, including when preparing for breast cancer surgery. In addition, the functional, sexual, and symbolic meaning of the breast, together with its intrinsic meaning to personal identity, is rooted in highly varied cultural contexts, which contribute to a woman’s choice of lumpectomy or mastectomy.

Guidelines for Informed Breast Cancer Surgery Consent Among Indigenous Women

The following suggested guidelines derive from a combination of universal ethical surgical consent practices, expansion of our previously published consent guidelines for the reproductive freedom of Indigenous women, and active clinical experience in the delivery of breast cancer care in the American Southwest [11].

  1. 1.

    Consent is a legal requirement and an ethical process that should respect patient autonomy and engage the patient in active, shared decision-making. To safeguard this:

    1. (a)

      Offer and provide an interpreter fluent in the patient’s Indigenous language.

    2. (b)

      Use terms the patient can understand and explain new/unfamiliar terminology.

    3. (c)

      Complete the diagnostic workup prior to final surgical planning so that the patient has all available data for her decision. Although a breast cancer diagnosis might already be established, pending breast imaging and biopsies can sometimes dramatically alter recommendations and final choices.

    4. (d)

      Allow the patient ample time to ask questions and think over her options. Although some women are quick to assert their surgical choice, it more commonly takes repeated visits for a patient to arrive at a confident decision. Furthermore, depending on personal and cultural dynamics, a woman may need time to discuss her decision with her family, caregivers, or those for whom she provides care.

  2. 2.

    Procedures, risks, benefits, rationale, and recovery should be described as they specifically apply to lumpectomy and mastectomy to ensure accurate expectations of each pathway.

  3. 3.

    Patients must be assured that they will not be penalized or lose any medical or Tribal benefits by following one choice over another.

  4. 4.

    For women contemplating mastectomy, options for reconstruction must be clearly elucidated.

    1. (a)

      The surgical oncologist should lead the counseling, in addition to providing a dedicated consultation with Plastic surgery regarding unilateral vs. bilateral surgery, implant vs. tissue reconstruction, immediate or delayed reconstruction, and whether nipple preservation should be performed.

    2. (b)

      Reconstruction should not be over-promised if the sponsoring Tribal health facility does not have the financial budget to cover the service. This should be determined prior to mastectomy and the clinician should be familiar with the applicable regulations. In the United States, government and private insurance programs provide reconstruction, but these same protections are not guaranteed through the Indian Health Service (IHS) or Tribally run health facilities.

  5. 5.

    The type of treatment and surveillance following lumpectomy or mastectomy should be clearly delineated:

    1. (a)

      It should be explained that radiation follows lumpectomy and a brief overview of the anticipated treatment schedule is provided. This may impact the surgical decisions of Indigenous women faced with distance/transportation barriers.

    2. (b)

      It should be explained that, while most women who choose mastectomy do not undergo radiation, approximately 10% will have surgical pathology indication for post-mastectomy radiation.

    3. (c)

      The receptor status of the breast tumor should be described, together with the systemic therapy this will invoke (i.e., chemotherapy, targeted therapy, endocrine therapy), and the treatment sequence (i.e., preoperatively vs. postoperatively), which can vary for lumpectomy vs. mastectomy.

    4. (d)

      There may be long-term consequences for the reproductive health of younger patients. This requires transparent discussion on the effects on future fertility, on the inability to breastfeed post-mastectomy, and on possibly compromised lactation post-lumpectomy.

    5. (e)

      The frequency of health appointments and the types of imaging that will occur during survivorship should be discussed, including the cessation of mammograms post-mastectomy (a relief to some but the removal of a sense of annual security for others). For implant-based reconstruction, women may be expected to undergo breast MRI every 2–3 years.

  6. 6.

    Staging the axilla is a standard component of breast cancer surgery independent from the lumpectomy/mastectomy decision. While it does not carry the same nuanced choices as the breast options, it requires a thorough discussion of procedure, benefits, and risks, with particular emphasis on the risks and implications of lymphedema. For Indigenous women, an under-described secondary portion of the operation could harken historical practices of secondary coerced and unsolicited procedures (Table 57.1).

Table 57.1 Guidelines for informed breast cancer surgery consent among Indigenous women
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Possible Solutions to Improve Indigenous Women’s Access to Their Preferred Breast Cancer Operation and Treatment Pathway

Despite quality counseling and consent, barriers remain that may thwart a patient’s pursuit of her preferred surgical choice. Measures can be taken to overcome some barriers, making the patient’s choice more feasible. Geographic distance and limited transportation can be overcome through coordination between the multidisciplinary team to consolidate care into fewer visits. For example, Surgery, Medical Oncology, and Radiation Oncology appointments could be clustered into the same day. The team can also carefully evaluate the necessity of in-person visits. While a physical exam is indispensable for surgical planning, subsequent counseling visits can be completed via telehealth. Surveillance exams every 6–12 months can be performed by the local primary care physician. Transportation and short-term housing can often be arranged using Tribal health facility or tertiary referral center resources, community grants, or a combination thereof.

When appropriate, accelerated partial breast irradiation (APBI) can be offered, delivering radiation in courses as short as 5 days, rather than 5 weeks. This is a safe form of standard care that has become more popular among Indigenous patients. One study shows that rural AI/AN women use APBI more than twice as often as their urban counterparts [1].

Plastic surgery visits can be reduced by opting for direct implant reconstruction rather than tissue expanders. When there is limited IHS/Tribal health facility funding for reconstruction, this procedure may be delayed until discretionary funds become available. Many AI/AN women meet the criteria to enroll in Medicare/Medicaid, which authorizes reconstruction. Services for AI/AN women can be expanded by enlisting the help of social workers and nurse navigators to enroll eligible patients in Medicare/Medicaid programs.

Finally, welcoming traditional healers into the care pathway enhances trust and honors culture, thus increasing patients’ confidence in their choices. While the efforts described above demand time and special attention, and do not provide guarantees, they contribute to transforming the breast cancer experience for Indigenous women, allowing them to fulfill their preferred surgical choice. Individual successes promote the institutional capacity to design system processes that beget improved care and access for future Indigenous patients. Through these measures and sensitive, culturally responsive consent, we can help narrow breast cancer surgical disparities and honor Indigenous women’s surgical choices (Fig. 57.2).

Fig. 57.2
A cyclic chart, in a clockwise direction, reads as I H S or tribal health facility, tertiary referral center, clinician, social work, patient navigator, and traditional healer. The listicle at the center includes utilizing telehealth, housing services, community grants, and direct implant reconstruction.

Improving treatment choices for Indigenous women through multidirectional stakeholder coordination

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Jennifer Erdrich’s work reported in this publication was supported by the National Cancer Institute of the National Institutes of Health under award number K08CA276137. The content is solely the responsibility of the authors and does not necessarily represent the official view of the NIH.