Between 420,000 and 1,000,000 lesbian, gay, bisexual, and transgender (LGBT) cancer survivors are estimated to live in the United States [1, 2]. LGBT survivors are comparable in number to other subgroups of cancer survivors that have been the target of specific research and clinical attention, [3, 4] and yet they have remained invisible in psychosocial cancer research and in oncology clinics for decades [5]. National databases and epidemiological surveys do not routinely collect information on sexual orientation and gender identity, and assessments of cancer survivors’ needs have remained relatively mute on the specific needs of LGBT survivors [6].

In this chapter we will outline what little research exists on the needs of LGBT survivors. We will also summarize existing services aimed at addressing these needs, and provide suggestions and recommendations for tailoring future services to this underserved and underrepresented population. Throughout, we will examine findings about the LGBT population in general through the lens of cancer survivorship, theorizing ways in which needs of the LGBT community broadly may manifest in the specific context of cancer survivorship.

We will also interweave findings from a qualitative study of LGBT cancer survivors into our discussion. The study’s principal investigator, Marilyn Smith-Stoner from California State University San Bernardino, worked with Liz Margolies, LCSW, the Executive Director of the National LGBT Cancer Network. A total of 311 self-identified lesbian, gay, bisexual, or transgender cancer survivors (with a range of cancer types) participated in the study. Data are included below from qualitative responses to two open ended survey questions: “If you were to give a class to healthcare workers, focused on cancer care, what would you tell them about being LGBT and being diagnosed with cancer?” and “Is there anything else you’d like us to know about your experience of cancer?” [7, 8]. We will move from the needs of survivors generally, to the needs of LGBT survivors as a group, to the experiences of specific survivors to frame this issue.

Receiving a diagnosis of cancer is a frightening and stressful experience [9]. The process of seeking cancer treatment and supportive care only compounds this stress. Cancer survivors are bombarded with clinical data and clinical options, asked to make complex medical decisions, and confronted with myriad uncertainties and unanswered questions. Their loved ones and care partners also experience considerable stress as they (often invisibly) support the cancer survivor through treatment and its side effects and into long-term survivorship [10].

The cancer experience takes a toll not only on the patient’s physical body, but on mental health as well. Almost all patients experience some distress and between 15 and 40 % of cancer patients will develop clinical anxiety and/or depression [11]. Distress and clinical anxiety and depression may persist for years post diagnosis [12]. The risk for distress is less related to cancer type than to psychosocial factors, such as being younger, non-white, female and/or having a history of depression [13].

How, then, is the experience of cancer survivorship similar or different for LGBT survivors and their partners? The NCI website does not list sexual orientation or gender identity in their inventory of factors that affect coping, but identifies multiple conditions that are more prevalent and problematic in this population, such as “whether the patient is able to get into treatment,” “the number of stressful life events the patient has had in the last year,” and “whether the patient gets support from friends and family.” As a group, LGBT people are less likely to have adequate health insurance, [14] more likely to have experienced stressful discrimination based on their gender identity and/or sexual orientation, [15] and more likely to be alienated from their families of origin [16].

For many LGBT cancer survivors, therefore, the stress inherent in cancer diagnosis and treatment is greatly magnified by pre-existing disparities. Disparate factors can result in increased distress among LGBT survivors over the course of treatment, as well, and critical questions about treatment options and recovery may be followed immediately by concerns about social stigma. While every new patient wonders “Will I survive this?” LGBT patients may also experience concerns about their safety, such as, “Can I come out to my doctor?”, “Will I be treated differently if I do?” ,“Will my chosen family be welcome?” and “Will I be offered the information I need to know to take care of my relationship, my sexuality, my fertility, and my family?” LGBT survivors face potential discrimination within the healthcare system. Their questions about sexual side effects may be left unanswered due to discomfort, lack of knowledge, or lack of cultural competence on the part of providers. Their families of choice may be invisible or unwelcome. This latter issue is particularly problematic, as multiple studies that examined quality of life (QOL) after a breast cancer diagnosis found a relationship between social support and mental health [17–24]. Taken together, these factors make navigation of the cancer experience considerably more challenging for LGBT survivors and their care partners than for their heterosexual counterparts.

We discuss below the unique facets of LGBT survivorship, including issues of disclosure, differences in social support systems, sexuality concerns, and the impact of cancer on gender identity. Providers and social service organizations need to be aware of these needs and skilled in addressing them in order to deliver quality care.

Given the lack of research attention paid to LGBT survivors, it is not surprising that few interventions and support services have been designed to address the specific and additional needs of LGBT survivors [49]. The tacit assumption has been, and continues to be, that sexual orientation and gender identity do not play a role in treatment and supportive care for cancer. Many LGBT patients may also feel that their LGBT identity has little bearing on cancer care. As one patient from the online study put it, “I don’t think being labeled as LGBT helped or hindered…we are all human beings first.” Another said, “I don’t feel as if I’ve been denigrated because I’m LGBT or even that it was an issue before, during, or after my diagnosis,” and a third added, “The environment in which I received my care was extremely hetero-normative. I never would have felt comfortable enough to be out at that time. Also, I was fighting for my life, so sexual orientation didn’t seem so important at the time.” Support groups typically operate under this assumption and use a one-size-fits-all model, thereby attempting to parse messages to a common denominator and introduce topics that will be of relevance to all survivors with a specific cancer type or stage on the cancer continuum, regardless of sexual and gender identity.

However, a growing body of knowledge indicates that LGBT identity does affect cancer care [50–53]. The majority of LGBT survivors echo this perspective, saying, for example, “As an alone, aging senior, I am also dealing with fear of rejection by being “out” even though I was very “out” when younger and in a partnership. There is a big part of the “cancer” experience that never gets shared with the care givers or service providers when you are not comfortable letting them know who you really are!” and “I can say I have had mixed experiences going through cancer as a lesbian, compared to my original diagnosis when straight.” One participant stated, “My LGBT status… as someone who is not quite cis-gender and who is definitely without a doubt QUEER… doesn’t really affect much in terms of my attitude and my experience,” but then went on to add, “Another strange thing is that it is REALLY HARD to find information about getting very small implants or implants appropriate for a male appearing chest. So, in this regard, I guess that my LGBT status comes to play… because everything is centered on this society’s “ideal” breast size.” Even LGBT survivors who might initially perceive their identity as unimportant to their cancer care can think of ways in which the system of care was not responsive to their particular needs. Below, we offer reflections on the types of services that currently exist, and how they meet or do not meet the needs of LGBT survivors outlined above. We also provide recommendations for increasing support services for LGBT survivors at the clinic level.

Given the stress and psychological distress experienced and reported by LGBT cancer survivors, providers are likely to refer these survivors to support groups or other supportive services. Research suggests that support groups and services can positively impact quality of life and influence health outcomes in individuals with cancer [54]. However, services provided must be perceived as supportive by those who access them [55]. Given the lack of attention paid to LGBT-specific issues, LGBT survivors are likely to be referred to general groups of survivors. These groups and services are likely to be unresponsive to the six LGBT-specific needs discussed above, and may therefore be of limited use to LGBT survivors.

There is limited empirical data on the experience of LGBT cancer survivors seeking supportive services. One study of lesbian/bisexual breast cancer survivors found that they were more likely to have had histories of discrimination, but that they were also more likely to have attended a cancer support group or mental health counseling [56]. In the LGBT community more broadly, 99 % of therapy providers report seeing an LGBT client in their practice, [57] and gay men have been shown to be more likely than heterosexual men to seek care for psychological distress [58]. If LGBT individuals are seeking supportive services more often than their heterosexual counterparts, and if this tendency continues in the context of cancer care, are they able to find culturally competent service providers who also understand the needs of cancer survivors and who welcome them into treatment?

Extant research findings are inconsistent. In general, LGBT persons who have sought supportive services in the community do appear to benefit from these services [59, 60]. However, the current model of social support groups for cancer patients and survivors is not always welcoming to LGBT survivors. Lesbian, gay, bisexual, transgender and gender nonconforming survivors may find that they are the only member of the group with their specific identity and set of concerns, and most facilitators have not received LGBT cultural competence training [61]. For example, the language of “husbands” in breast cancer support groups and the talk about vaginal intercourse in prostate cancer support groups can be alienating to lesbian and gay survivors. Simply switching the gender of the partner is not the same as understanding the impact of cancer on LGBT relationships [62]. Similarly, the same-sex partner who seeks support may be the only man or woman in a care partner support group. Many transgender people have been actively excluded from support groups, like transgender men who are not welcome in a breast cancer group [63]. Even if accepted, being the only LGBT person in a group is isolating and defeats the purpose of healing through shared experiences. There is little chance for support and mutual sharing about the issues mentioned previously; heterosexual survivors may not be able to relate to the experience of disclosing a marginalized identity to providers and dealing with secrecy and discrimination, for example. As one lesbian breast cancer survivor put it, “I ended up going to a support group where I was the only queer woman. They were great people and my being out wasn’t a problem, but I missed having that support. The local LGBT health org did not have an active support group at the time for queer women going through cancer treatment. Very unfortunate. Ironically, my partner had a support group to go to at this place, but I didn’t.” From another: “The support group I was offered was the one provided at the hospital. I was the only queer person in the room and while the leaders were very well-meaning, there were moments of alienation (I spoke up but still) especially when the topic of sex and cancer came up.”

As this discussion of limitations highlights, there is an overwhelming need for services that can specifically address the needs of LGBT cancer survivors. Targeted groups for LGBT cancer survivors were the most requested service by the survivors themselves in the internet-based study described above. There are very few such groups in the entire country. They require not only a skilled facilitator, but a critical mass of eligible and interested group members, all available on the same day/time and within driving distance. Outside of the largest urban areas, it can be difficult to find enough people to start a group. Survivors who are not out to their providers will not be offered referrals to LGBT groups and the treatment center may not be aware that they have sufficient numbers to start their own. To successfully form an LGBT support group requires collaboration between community groups and cancer facilities.

These limitations often mean that LGBT support group members will be at different points on the cancer continuum, a less-than-ideal situation according to literature on support group formation [54]. People who have been newly diagnosed have different needs than those who are post treatment or dealing with metastatic disease. Similarly, people with different cancer types might be grouped together in LGBT-specific services, and the needs of a colorectal cancer patient, for example, may be very different than those of a head and neck cancer patient. As one participant said, “I found discrimination in entering existing LGBT groups, both older members versus newer members (older members bonding among their past experiences) and regarding different types of cancers…” LGBT groups focused on particular cancer types would be ideal, as highlighted by this participant: “Having a gay male support group was the best thing that happened to me. I feel very lucky to be able to discuss both feelings and sensations without any inhibition at all in the company of other gay men who also had prostate cancer.” However, such groups would suffer from extremely small participation rates in most areas in the US, assuming that LGBT survivors interested in forming such a group could find a suitable clinician.

Web-based/online LGBT support groups offer some advantages over the in-person format. First, in-person groups are becoming increasingly hard to fill across both heterosexual and LGBT cancer populations [64]. This shift is due in part to the large numbers of survivors who now keep their jobs during and after treatment, but then lack the time and energy to participate in an evening group. Online groups offer people the opportunity to get support while at home. Second, online groups permit geographically isolated individuals an opportunity to participate with other survivors. The third benefit of online support services is that they are accessible and welcoming for cancer survivors with physical, visual, hearing, cognitive or communication disabilities. Research confirms that a web-based support group can be useful in reducing depression and cancer-related trauma, as well as perceived stress, among women with primary breast carcinoma [65]. These online groups may still suffer from the problem of small numbers, as reported by one survivor: “Even online the LGBTQ support groups are hard to find and if found, there is never any activity in them. Reassurance or comfort in this arena has been impossible to find.”

Though few services target LGBT survivors directly, many educational materials and interventions may be still applicable to them and address their questions about cancer treatment and outcomes. Shallow and deep tailoring approaches [66] could ensure that the message of these materials reaches and resonates with the LGBT population. Shallow tailoring could simply involve including pictures of same-sex couples and LGBT individuals, or testimonials from LGBT survivors, into materials aimed at providing general information about cancer. The LIVESTRONG brochure on “Coming Out with Cancer,” for example, used similar information as was used in the LIVESTRONG brochure for heterosexual survivors; however, this information was interspersed with images and testimonials from LGBT survivors [2]. Once tailored, the information may need to use specialized outreach to access the LGBT survivors who could most benefit from the information.