Because cancer registries do not collect data on sexual orientation [1], it has hardly been assessed whether sexual orientation differences exist with respect to other demographic characteristics, stage at diagnosis, and receipt of life-saving treatments. So far, the best data on these characteristics stem from one population-based study, which recruited survivors of non-recurrent and non-metastatic breast cancer from a state cancer registry an average of 5 years after diagnosis [2]. When SMW, who participated in the study, were compared to the population of registry cases, SMW were significantly younger at diagnosis and less likely married, but similar with respect race or ethnicity [2]. In this study of ductal carcinoma in situ (DCIS) and stage I to III cancers, sexual minority women were more likely diagnosed with DCIS or stage I than the population of registry cases [2]. When the cancer treatments of the heterosexual and sexual minority women who participated in the survey study were compared, breast-conserving lumpectomy was more common among sexual minority than heterosexual women, and among women who underwent mastectomy, comparatively fewer sexual minority than heterosexual women opted for breast reconstruction [3]. Receipt of adjuvant therapies, that is radiation, chemotherapy, and/or anti-estrogen treatments, however, was similar for heterosexual and sexual minority women. Convenience samples confirm this pattern [4] of SMW having earlier diagnoses of breast cancer and receiving more breast-conserving surgical treatment. Nevertheless, caution is required when interpreting these results because the inclusion and exclusion criteria limited this study to women who were alive approximately 5 years after their diagnosis, all treatment data were self-reported, stage IV breast cancers and recurrences were excluded, and the study’s geographic scope was limited to one US state in the Northeast with a pre-dominantly white population. These inclusion and exclusion criteria may have biased the results towards an equal or possibly even favorable diagnosis stage and treatment pattern for sexual minority compared to heterosexual breast cancer survivors.

The role of sexual minority women in treatment decision-making, their preferences for treatments when presented with a choice, and issues of adherence to treatments have rarely been the focus of studies. So far, there is an absence of knowledge about sexual minority women’s preferred role in decision-making, a lack of information about their process of decision-making, including to what extent they obtain second opinions on treatment regimens, their uptake of referrals to specialists, and whether clinical trial participation is weighed as an option. Further, it is unclear if SMW of reproductive age who receive a diagnosis of breast cancer receive information about fertility options, and whether retaining their ability to have children later is taken into account when determining treatment options, as suggested for young, heterosexual women with breast cancer. Information about SMW’s decision-making stems from four studies. Two studies focused on LGB’s participation in clinical trials, yet neither study focused on breast cancer specifically, both included sexual minority men, and the two studies report contradictory results [5, 6]. Egleston et al. conducted a review of the ClinicalTrials.gov database, which includes detailed information on more than 80,000 clinical trials sponsored by the National Institutes of Health, other governmental agencies, and private industry. They concluded that lesbian and gay men are frequently excluded from clinical trials and that their exclusion is particularly likely when studies focus on sexual function [6]. The second study analyzed self-reported data on clinical trial participation, comparing gay, bisexual, and lesbian individuals to heterosexual individuals, concluding that gay, bisexual, and lesbian individuals have a greater likelihood of participating in clinical trials, again referring to clinical trials in general, not breast cancer specifically [5]. Because both studies included sexual minority men, it is unclear to what extent these findings are impacted by HIV/AIDS-related clinical trials. From two qualitative studies with SMW surgically treated with mastectomy, insights can be gained about SMW’s decision-making regarding breast reconstruction [7, 8]. According to Boehmer et al. when deciding for or against breast reconstruction, SMW prioritize a sense of well-being, which includes body strength, survival, and physical function, over outward appearance and normative standards of beauty [7]. SMW who decide against reconstruction perceived breast reconstruction not contributing to their well-being, in that it did not provide them with an improved physical function. SMW who chose reconstruction hoped it would enhance their well-being, preventing depression triggered by their breast loss, but some reported regrets when they did not achieve an enhanced well-being from reconstructive surgery [7]. Rubin and Tannenbaum’s findings are generally consistent with the earlier study. Their findings expand the earlier study by stating SMW’s decision-making about reconstruction is influenced by sexual, gender, and political identities, as well as by experiences with physicians. Further, Rubin and Tannenbaum state that SMW deciding about breast reconstruction weigh reasons and concerns similar to those reported in the literature as reasons that heterosexual women consider when deciding about reconstruction [8].

Breast cancer treatments have known side effects and long-term effects, including arm morbidity, lymphedema due to surgical treatments and radiation, but also cardiovascular disease, chest pain, myocardial infarction, cardiac toxicity due to radiation and other adjuvant systemic therapy. The prevalence of symptoms and side effects varies greatly among breast cancer survivors in general. While disease-related factors explain much of breast cancer survivors’ perceptions, survivor characteristics, including demographics, make an additional contribution towards explaining symptoms. So far, two studies focused on sexual minority status, assessing the subjective impact of breast cancer treatments approximately 5 years after diagnosis, using breast cancer survivors’ self-reports of their side effects. When lesbians were compared to heterosexual women, lesbians reported more chemotherapy-induced side effects [9]. The second study reported greater physical impairments in sexual minority women following surgery, radiation, and hormone therapy compared to heterosexual survivors, indicating sexual minority women’s poorer perception of these treatments [10]. The paucity of information about SMW’s treatment decision-making, their perceptions of breast cancer treatments, including SMW’s responses to mastectomy, hair loss, pain, discomfort, and ovarian failure, speak to the need for future studies on these topics.

Such future studies should assess SMW’s perceptions and decision-making, to ensure SMW achieve their desired role in decision-making, are fully informed about treatments and their side effects, receive appropriate attention to alleviate the side effects, and are supported in coping with the side effects of treatments.

From the moment, a breast cancer diagnosis is made, women are engaged with health care providers and navigate the health care system to address their life threatening disease. Little is known about SMW’s perceptions of this process, such as their access through health insurance coverage, their ability to find providers that specialize in breast cancer, and their navigation of the oncology world while they are undergoing life-saving treatments for many weeks or months. To date, much of the research of the general (that is non-cancer population) reports on sexual minority women’s greater prevalence of being uninsured compared to heterosexual women [11, 12]. Positive changes are expected in the future due to the Affordable Care Act and the legalization of same-sex marriage in more states, which contributes to SMW’s access to health insurance through their spouses. To date, the effects of being uninsured on SMW’s use of health care and their breast cancer survival have not been assessed. Research that assessed breast cancer survivors who were alive 5 years after their diagnosis, concluded that there were no differences in insurance status by sexual orientation [3], suggesting that SMW who survive breast cancer have gained access to health insurance, possibly relying on Medicaid or Medicare if they meet eligibility criteria.

Qualitative studies inform about SMW’s perceptions of their interactions with health care providers. SMW actively disclosed their sexual minority status to physicians, whereas none of the physicians actively inquired about sexual orientation [13]. The majority of SMW with breast cancer disclosed their sexual orientation to their breast cancer providers, nevertheless SMW perceived their relationship with their providers as difficult [13]. Women who took it upon themselves to tell their breast cancer providers about their sexual minority status were more open about their sexual orientation to others in their social network than women who decided against disclosing their sexual minority status to their provider. Both groups of SMW perceived themselves to be in a life-threatening emergency situation and evaluated their personal safety when deciding whether to disclose their sexual minority status. The disclosers had more personal resources available, which reassured them that disclosure was safe. Nondisclosers had fewer resources available, feared homophobia, and perceived disclosure as unsafe [13]. SMW with breast cancer reported a preference for female providers [14]. Nevertheless, the study ultimately concluded that physicians of either gender can achieve satisfying sexual minority patient-provider relationships. Learned provider traits, consisting of positive interpersonal behaviors, e.g., expressions of respect, seeking a connection with and showing an interest in the patient, perceiving the patient as an equal, and having good communication skills, as well as providers’ medical expertise are linked to SMW’s satisfaction with their physician relationship [14]. Qualitative as well as quantitative studies that compare lesbian to heterosexual women with breast cancer reported that lesbians were less satisfied with the care they received, and were less satisfied with their health care providers [15, 16]. Yet sexual minority women did not differ from heterosexual women in their rating of their communication with providers [16]. A study of breast cancer survivors, 5 years post diagnosis, found that sexual minority and heterosexual women reported similar levels of trust in their physicians, [17]. Interestingly, when lesbian women were compared to bisexual women with breast cancer, bisexual women reported significantly less trust in their providers [18]. A qualitative study of lesbians diagnosed with breast or gynecological cancers reported on their experiences with providers [19]. In this study, most lesbians described negative experiences with providers, yet reported not feeling discriminated against. Few described being targeted, denied standard care, or that aspects of their identity and social context relevant to cancer care were dismissed [19]. Another study of SMW assessed discrimination experiences in the health care system, concluding SMW’s discrimination experiences are low [20]. When discrimination experiences captured everyday life experiences and not discrimination in the health care setting specifically, sexual minority women with breast cancer reported more experiences of discrimination than heterosexual women [17]. Overall, the research to date describes a complex relationship between SMW and their providers and the health care system, pointing to opportunities to improve the quality of care for SMW. Recently, the Institute of Medicine placed much emphasis on improving the quality of care cancer survivors receive [21], recommending the use of survivorship care plans to facilitate coordination of care and adherence to the recommended follow up care. While there is variation in the implementation of such plans and their use is still infrequent [22], it is unclear if SMW with breast cancer are considered equally in this quality improvement and whether SMW’s survivorship plans are tailored to address their unique needs.

In this chapter, the term ‘secondary survivor’ refers to spouses, partners, friends, or family members of the breast cancer survivor. Some may be more familiar with the term informal caregiver, to describe loved ones or friends to a person living with cancer. NCI defines loved ones as secondary providers to signify that they are a part of cancer survivorship. Because of the stress associated with a cancer diagnosis and the impact of the cancer treatments, sexual minority survivors who are diagnosed with breast cancer are likely utilizing their social support network for a variety of tasks, which may range from providing transportation, assisting with treatment decision-making, and providing care as well as emotional or spiritual support. So far, one study provides information about the sources of social support for SMW with breast cancer, in that survivors were asked to identify “their trusted other” or most important support person for their cancer experience [23], without forcing a particular choice of type of support provider. This approach resulted in 10 % of SMW with breast cancer reporting not having such a person. Another 10 % reported having such a person, but did not allow the researchers to contact their support person because they currently had a strained relationship or felt it be too upsetting for their support person. Of the contacted support providers, all but one agreed to participate in the study [23]. All support providers were female, 79 % were relationship partners, 13 % were friends, and 9 % relatives. Further, having a support provider was independent of the size of the survivors’ social network, yet partnered sexual minority women were more likely to have a support person. Finally, those who had a support provider available to them reported greater social support than SMW who did not have a designated person, from which one can infer that single SMW are at risk of not being supported when dealing with breast cancer [23]. Some hypothesized that sexual minority survivors of breast cancer will be at risk for low support, in that they may not be able to rely on support from their families of origin. Therefore, a number of studies have evaluated the available social support of SMW with breast cancer [16]. Two studies, using different measures of social support and assessing breast cancer survivors at different time points in their survivorship, concluded that sexual minority women with breast cancer have the same level of support as heterosexual survivors [17, 24]. However, when studies assessed the sources of social support, differences between heterosexual and sexual minority women became apparent. Lesbians relied less on relatives and more on friends for support compared to heterosexual women, who relied more on relatives and less on friends [16, 24]. Some studies focused on the spouses or partners of breast cancer survivors. So far, the results are less than conclusive, in that one study found that heterosexual and lesbian women with breast cancer reported similar relationship satisfaction and relationship fighting or friction [24]. Further, the two survivor groups were similar on their perceptions of their partners being bothered by their surgical scars, on the amount of affection their partners expressed, and their partners’ reaction to breast cancer as a threat to their lives [24]. Fobair and colleagues, however, found differences in that lesbians were more likely to report feeling loved and supported by their partners, while heterosexual women more likely reported their partners made too many demands on them [16]. The latter findings were echoed by a qualitative study that found female partners are the most valuable source of support for SMW and that female partners provide support by fulfilling complex social support functions, which may range from discussing the survivor’s distress to managing the home [25]. An important aspect put forth by this qualitative study is SMW’s perception of their partners being stressed and greatly burdened by their breast cancer diagnosis and by providing support to them [25]. An important gap in the literature is that with the exception of one study, the experiences of secondary breast cancer survivors have not been assessed. Comparing breast cancer survivors and their support providers who were mostly relationship partners, some friends, and some family members, showed that support providers had less support available and a trend towards a smaller social network than the breast cancer survivor. Survivors and their support providers reported similar levels of mood disturbance and sexual orientation disclosure [23]. So far the experiences of secondary survivors is a particularly underdeveloped aspect of cancer survivorship, indicating that more research is needed to understand these secondary survivors’ experiences, allowing for a wide range of secondary survivors, including relationship partners and children of SMW with breast cancer. Despite an absence of studies that inform in much detail about the social support needs of sexual minority survivors of breast cancer and their secondary survivors, it is of note that throughout the country, in urban areas and online, cancer support services are available that focus specifically on SMW and in some cases their partners. One study that compared heterosexual and sexual minority survivors of breast cancer concluded that sexual minority survivors more likely attend cancer support groups and are also more likely seek out mental health counseling to deal with their breast cancer compared to heterosexual survivors [26]. However, this study did not assess whether sexual minority survivors’ use of cancer support groups referred to lesbian or sexual minority specific groups. Three qualitative studies reported on sexual minority women’s experiences with cancer support groups made up of predominantly heterosexual group members [15, 27, 28]. These studies reported on SMW’s “otherness” and alienation from the heterosexual women in the group, reporting that heterosexual group members lacked awareness and openness for sexual minority women’s lives, which caused sexual minority women to conceal their sexual orientation, leave the group, or perceive diminished benefit from the group meetings [15, 27, 28]. Therefore, it is necessary for future studies to carefully measure that SMW’s rates of support group use refers to continued social support group attendance and having support needs met, rather than a reflection of short-term utilization followed by dropping out of groups due to a lack of benefit. Secondary support providers’ use and interest in support groups and mental health counseling due to the stress of the survivors’ breast cancer is unknown to date. However, finding appropriate and positive support groups for partners that match their needs is likely magnified and an unmet need to date [28].

Much of the research to date focused on assessing SMW’s coping with a breast cancer diagnosis, their quality of life, and psychological adjustment after breast cancer. Several studies report that sexual minority women’s coping styles differ from heterosexual women’s coping, revealing mostly areas of strengths in sexual minority women’s coping. Compared to heterosexual women, lesbians use less cognitive avoidance, less denial, less anxious preoccupation, and less hopelessness coping, which are strengths. Other strengths are SMW’s greater expression of anger, increased venting, and more positive reframing [16, 24, 26]. Compared to heterosexual survivors, sexual minority survivors show vulnerabilities too, in that one study found lesbians have less fighting spirit [16]. However, a later study concluded that sexual minority women were similar to heterosexual women with respect to fatalism and fighting spirit coping [26]. According to one qualitative study, at the time of diagnosis lesbian women experience significantly more stress than heterosexual women [15]. Most other studies that assessed stress, anxiety and depression, reported on sexual minority survivors at later time points, frequently years after their diagnosis.