National LGBT Cancer Network

According to the American Cancer Society (2019), an estimated 1.7 million new cases of cancer will be diagnosed in 2019 and more than 600,000 individuals will die from the disease. As early detection has increased and cancer treatments have improved, we have seen a 27% drop in cancer deaths between 1991 and 2016 (American Cancer Society, 2019). This drop has resulted in there being more than 15 million cancer survivors in the United States (National Cancer Institute, 2018).

Unfortunately, the lack of sexual orientation and gender identity (SOGI) data collected in cancer registries makes it difficult to determine the cancer incidence, survivorship and mortality of lesbian, gay, bisexual and transgender (LGBTQ) individuals (Bowen et al., 2007). Multiple studies have shown that the LGBTQ community is at increased risk for several types of cancer due to behavioral factors (such as tobacco use, alcohol use, obesity) and delays in seeking preventive health services. For example, a meta-analysis conducted with pooled data from the California Health Interview Survey indicated that lesbian and bisexual women were 2.0 and 2.3 times more likely to have a cancer diagnosis than their heterosexual counterparts (Boehmer et al., 2011). Gay men are also at increased risk of anal, prostate cancers and cancers associated with HIV. (Rosser et al., 2016).

Enhancing Cancer Survivorship: During Treatment

Receiving a cancer diagnosis is a devastating and life-altering experience. Against the backdrop of suddenly dealing with one’s mortality, LGBTQ cancer patients also face the need to quickly understand the medical terminology they are newly exposed to, decipher and make decisions about a host of treatment options, and negotiate sexual orientation disclosure decisions with a team of health care providers. This scenario taxes the emotional resources of even the most resilient individuals. Members of the LGBTQ community, already saddled with a history of negative interactions with an often hostile and discriminatory health care system (Jabson et al., 2011), the fear associated with a cancer diagnosis is additionally complex and layered. Social support during cancer treatment can be important in mitigating this anxiety. However, coupled and married LGBTQ cancer survivors face the fear that their relationship may not be honored or recognized by their health care team, thereby marginalizing their main source of support and advocacy during cancer treatment. This is also true for LGBTQ patients whose family-of-choice is not “welcomed” or respected by the care team.

LGBTQ patients also grapple with the intersectionality of their multiple identities (sexual orientation, gender identity, race, and ethnicity) and the impact of various disparities (insurance status, poverty, literacy, etc.), along with the incorporation of a new identity as a cancer survivor. The ability to have all these identities embraced within the care environment is critical to reducing stress and facilitating healing. LGBTQ survivors must also negotiate disclosure of these identities to health care providers in ways that do not increase their vulnerability for mistreatment (Kamen et al., 2018). The inability to disclose their sexual identity to cancer care providers results in poorer health outcomes (Durso et al., 2013; Kamen et al., 2015).

The “gendering” of cancer treatment and survivorship can also be challenging to LGBTQ cancer survivors. For example, having breast cancer experience awash in pink may be off-putting for gender-variant women who do not conform to society’s concept of femininity. Also, the language associated with “waging war against cancer” may be alienating to men who have eschewed these battle concepts of masculinity. Therefore, the additional step of having to adopt a specific gendered representation in order to fit in within a clinical environment (i.e., women’s cancer center) places an undue burden on many gender non- conforming cancer survivors that compounds the stress and anxiety they already face (Taylor et al., 2016).

Post Treatment Survivorship: Survivorship Care Plan

Many survivors who have completed treatment indicate feeling adrift without the tools or support necessary to navigate their new post-treatment reality. For example, questions about how to discuss their survivorship status with friends, family and potential partners may be particularly salient to members of the LGBTQ community who already face stigma and isolation. Additionally, survivors often have questions about future primary care needs, late effects of cancer treatment, and profound fears related to disease recurrence. Survivorship care planning can help patients transition to this new period of survivorship. Unfortunately, most cancer survivorship care plans do not adequately address the needs of LGBTQ patients.

Survivorship care plans are prepared by the principal provider responsible for the coordination of oncology treatment and delivered by a member of the clinical team for individuals who have completed active therapy. In addition to providing a treatment summary and guidance on medical follow-up, care plans also offer an opportunity to assess and address the psychosocial needs of the cancer patient. Unfortunately, since most clinicians do not receive sufficient LGBTQ education, they may lack an understanding of the needs of their LGBTQ patients or may not believe differences in experience exist, and therefore appropriate resources and referrals may not be present in care plans. Additionally, few resources are available to support LGBTQ cancer patients. Therefore, additional work may be necessary to acquire relevant LGBTQ specific resources and training for health care providers to properly assess patient needs. Providers must also be able to comfortably engage in conversations that address the whole person, including sex and sensuality. Additionally, providing referrals to appropriate post-treatment supportive services such as LGBTQ cancer survivorship groups, where they exist, are critically important.

The stress associated with serving as a caregiver is often overlooked in cancer survivorship care models. However, caregivers can be emotionally and psychologically affected by the cancer diagnosis and treatment in unanticipated ways. For example, utilizing paid family leave to care for a same-sex partner or spouse may require coming out within an unsupportive work environment. Advocating for a same-sex partner or spouse in health care settings may also require having to repeatedly come out to hospital staff. Speaking from personal experience, having to explain my relationship to the patient over and over again, for even well-meaning hospital staff, including medical assistants, technicians, nurses, and food service staff, can be exhausting. Sometimes it’s easier to just accept the designation as a sister, friend, even daughter rather than reveal an identity that might impact the patient’s care, particularly when the patient is vulnerable. Safe spaces to openly discuss these issues, such as LGBTQ welcoming caregiver support groups are few and far between, often leaving the caregiver isolated and unsupported.

The Role for Comprehensive Cancer Control Programs

Comprehensive Cancer Control Programs (CCCP) can work toward improving LGBTQ survivorship in multiple ways including 1) adapting and/or incorporating a set of LGBTQ survivorship goals and objectives as part of the state cancer control plan; 2) supporting policies that include LGBTQ cultural competency training for health care providers; and 3) supporting the expansion of the number of cancer support groups that address the needs of LGBTQ cancer patients and their caregivers. CCCP can also help develop and/or promote resource lists for LGBTQ cancer patients and their caregivers including relevant assessment tools that can become part of survivorship planning activities. In addition, CCCP can be instrumental in promoting respectful provider-patient communication that incorporates and honors chosen support networks as well as inquires and uses preferred pronouns and gender identifiers (Kamen et al., 2018). These activities should be accomplished in partnership with local LGBTQ health centers, local or national LGBTQ cancer organizations, and/or LGBTQ leaders and community advocates.

Below is the list of survivorship related recommendations that might be useful in thinking about how best to incorporate LGBTQ survivorship in comprehensive cancer control activities.

The recent National LGBT Cancer Action Plan: A White Paper of the 2014 National Summit on Cancer in the LGBT Community, outlines six survivorship related recommendations for improving cancer care for the LGBTQ community

National LGBT Cancer Network Enhancing Cancer Survivorship among LGBTQ Individuals Increase research to document elevated cancer risks and cancer screening disparities in LGBT communities.

Develop psychosocial and educational support groups specifically for LGBT survivors and caregivers, and when this is not feasible, assure the cultural competence of professional support service providers to better meet the needs of LGBT communities.

Improve care coordination for LGBT patients, survivors, and caregivers through the integration of LGBT community resources. These resources include culturally competent oncologists, primary care and specialty physicians, mental health providers, and other professional providers.

Educate healthcare providers about the unique co-occurring conditions that LGBT cancer patients may present in their care settings.

Ensure that palliative and end-of-life care addresses the specific legal and psychosocial needs of LGBT communities.

Support efforts to increase insurance coverage for LGBT communities, with a focus on the transition and cancer care needs of transgender communities.

American Cancer Society. (2019). Cancer Facts & Figures 2019. Atlanta: American Cancer Society.

Boehmer, U., Miao, X., & Ozonof, A. (2011). Cancer Survivorship and Sexual Orientation. Cancer, 3796-3804.

Bowen, D. J., Boehmer, U. (2007). The lack of cancer surveillance data on sexual minorities and strategies for change. Cancer Causes Control, 18, 343-349.

Rosser, B. R. S., Merengwa, E., Capistrant, B. D. Iantaf, A., Kilian, G., Kohli, N., Konety, B., Mitteldorf, D., West, W. (2016). Prostate cancer in gay, bisexual, and men who have sex with men: A review. LGBT Health, 2(1), 32-41.

Burkhalter, J. E., Margolies, L., Sigurdsson, H. O., Walland, J., Radix, A., Rice, D., et al. (2016, January 27). The National LGBT Cancer Action Plan: A White Paper of the 2014 National Summit on Cancer in the LGBT Communities. https://doi.org/10.1089/ lgbt.2015.0118.

Jabson, J. M., Donatelle, R. J., Bowen, D. B. (2011). Breast cancer survivorship: the role of perceived discrimination and sexual orientation. Journal of Cancer Survivorship, 5(1), 92-101.

Kamen, C. S., Alpert, A., Margolies, L., Griggs, J. J., Darbes, L., Smith-Stoner, M. S., Lytle, M., Poteat, T., Scout, Norton, S. A.

(2018). “Treat us with dignity”: A qualitative study of the experiences and recommendations of lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients with cancer. Support Care Cancer, 1-8.

Durso, L. E., Myer, I. H. (2013). Patterns and predictors of disclosure of sexual orientation to healthcare providers among lesbians, gay men, and bisexuals). Sexuality Research and Social Policy, 10(1),

Kamen, C. S., Smith-Stoner, M., Heckler, C. E., Flannery, M., Margolies, L. (2015). Social support, self-rated health, and lesbian, gay, bisexual, and transgender identity disclosure to cancer care providers. Oncology Nursing Forum, 42(1), 44-51.

Taylor, E. T., & Bryson, M. K. (2016). Cancer’s margins: Trans and gender nonconforming people’s access to knowledge, experiences of cancer health, and decision-making. LGBT Health, 3(1), 79-89.

National Cancer Institute. (2018, April, 27). Cancer Statistics. Understanding Cancer. Bethesda, MD, USA.

Seave, J., Mitteldorf, D., Yankie, A., Pirl, W. F., Kobetz, E., & Schulmbrecht, M. (2018). Survivorship care needs among LGBT cancer survivors. Journal of Psychosocial Oncology, 36(4), 393-405.

Articles

This article outlines three areas where LGBTQ patients and their caregivers may face challenges and how the Comprehensive Cancer Control Programs (CCCP) can address these needs. Written by Dr. Amari Pearson- Fields, the former Comprehensive Cancer Program Director for Washington DC.

A Guide for Comprehensive Cancer Control Programs

Anal cancer is rare in the general population but increasing significantly among some groups of people, especially those infected with HIV, men who have sex with men (MSM), women with cervical cancer, tobacco smokers, and people who are immunocompromised due to organ transplants, steroid use, or the use of any medications that suppress the immune system (Roberts, 2017) (Gaisa, 2014). Rates are especially high among MSM who are infected with HIV and among black men, who have a higher rate of HIV infection.

A study of North Americans found anal cancer incidence rates per 100,000 person-years ranged from 131 for HIV-infected MSM to 46 in other HIV-infected men and 30 in HIV-infected women; the incidence in MSM is highly correlated with the HIV epidemic (GAisa, 2014). There are about 7000 new cases of anal cancer in the USA each year and the 5-year survival rate is 65.7%. There is no routine screening for the disease, even among those at high risk, and it is not covered by insurance (in the USA), as screening for cervical cancer is. As a result, a diagnosis of anal cancer is often delayed until the disease has progressed, resulting in a high rate of morbidity that could be prevented (Leeds, 2016). Data and studies about anal cancer are usually focused on anal squamous cell carcinoma (ASCC), the most common anal cancer.

There has been a great deal of research over the past decade about ASCC and the sexually transmitted Human Papilloma Virus (HPV). HPV-related cancers include cervical, anal, oropharyngeal (mouth and throat), and penile cancers. A recent study estimated the global incidence of HPV-associated cancers in 2012 to be 630,000 new cases that year and 35,000 of those were anal cancer (De Martel, 2017). Another study of the global incidence of anal cancer by country found that it was increasing significantly in men and women in higher income nations such as Australia, Canada, Denmark, France, Italy, Netherlands, the UK and the USA, while it increased only in women in Colombia, Estonia, the Russian Federation, Slovakia, and Switzerland.

The risk of anal cancer is highest among those who have a persistent or chronic HPV infection. Persistent HPV is often associated with HIV infection, receptive anal intercourse, multiple sexual partners, unprotected sex, and a history of HPV-related genital cancer. In North America, rates of anal cancer are higher among people living with HIV and much higher among HIV-positive MSM.

While HPV infection has become extremely common among the general population, most people clear it from their bodies over time through their immune system response (Shridhar, 2015, CA). The longer the duration of an HPV infection, the greater the chance that it will lead to cellular changes called anal intraepithelial neoplasia (AIN), and later to anal cancer. A meta-analysis has concluded that high-risk HPV is the cause of anal cancer. But it is also likely that the progression of AIN to anal cancer is associated with immunosuppression. It is suspected that HIV infection, as well as other immune-compromising conditions, promote HPV persistence indirectly due to immune system suppression. CD4 is a type of white blood cell active in immune response, and studies indicate that a low CD4 count in HIV-positive individuals is a risk factor for AIN and invasive anal cancer.

Continued Lack of Anal Cancer Screening Standards

Decades of PAP test screening in women to detect precancerous changes in cervical cells has been directly correlated with a significant reduction in cervical cancer. For the past two decades, it has been suspected that the use of anal PAP tests could detect AIN in the same manner, before cellular changes in anal epithelium progress to cancer. However, medical societies have still not established standards for anal cancer screening; even though a 2014 review by seven agencies concluded that it may be beneficial. Practice patterns by infectious disease specialists suggest that anal dysplasia screening of high-risk individuals is becoming common, but only the AIDS Institute of the New York State Department of Health has established formal screening guidelines for HIV-positive individuals.

The AIDS Institute recommends routine annual examination of the anus in all HIV-infected adults and cytologic (pap) testing in higher risk HIV-positive patients such as men who have sex with men (MSM), those with a history of genital infection, and women with cervical or vulvar dysplasia (Shrindhar, 2015). The AIDS Institute also refers to updated guidelines for HIV-positive patients posted in May 2018 by the U.S. Department of Health and Human Services (HHS) AIDS Info website, which states that positive cytology requires follow-up with HRA and that visible lesions should be biopsied. The updated HHS guidelines also address AIN treatment.

Current AIN and Anal Cancer Treatment Standards

Those who diagnose and treat anal cancer caution providers to distinguish signs of anal cancer (i.e. anorectal bleeding, pain, and/or fullness, and sphincter incontinence) from similar signs of hemorrhoids and colon cancer. Precancerous lesions of AIN are not always visible on routine examination and require both a digital anorectal exam and high-resolution anoscopy (HRA). HRA requires both specialized equipment and extensive training that is not available at many medical facilities, so patients should be referred to expert centers that can interpret tests, perform HRA, and treat AIN. The recurrence rates of AIN also warrant significant post-treatment surveillance.

While the HPV vaccine is currently recommended only as a preventive immunization for youth between the ages of 9 to 26, clinical trials have indicated that the quadrivalent vaccine reduces both genital lesions and AIN and may be effective in keeping AIN from progressing to anal cancer. Some studies indicate that the 9-valent HPV vaccine may be helpful in preventing recurrent AIN, especially in those at increased risk for SCCA. Unvaccinated patients above age 26 who are at high risk of anal cancer may want to ask their care provider about getting either the quadrivalent or 9-valent HPV vaccine. Since this is an off-label use of both vaccines, it may be challenging to obtain health insurance coverage for them.

Lab tests of those with anal cancer symptoms should include a complete blood count, renal and hepatic function and HIV status. When AIN or anal cancer is detected, scans of the chest, abdomen, and pelvis should be ordered to rule out metastatic disease. Radical surgery is no longer the first option in the primary treatment of anal cancers. Precancerous lesions can be treated with topical therapies and electrocautery to preserve sphincter function. Local excision is only advised for anal margin squamous tumors and not for anal canal squamous cancers. More involved anal cancers may require a combination of surgery, chemotherapy and radiation treatments; the standard of care in 2015 was chemoradiation with Fluorouracil (5FU) and mitomycin (MMC). Those with HIV-related complications, such as opportunistic infections, may need MMC dosage reduced (Shridhar, 2015). See the HHS AIDS Info website for more information on AIN treatment.

Anal cancer and its treatment often take a heavy psychological toll on survivors. Side effects include diarrhea, nausea, fecal incontinence, buttock pain, rectal urgency and flatulence, all of which may discourage survivors from returning to social and sexual activity. Greater attention is needed to identify and intervene with interdisciplinary approaches during long-term follow-up to assure a better quality of life for survivors.

Anal cancer can be prevented. The clearest path to prevention is the new two-dose HPV quadrivalent vaccine, which the CDC recommends for people of all gender identities and sexual orientations, starting at age 11 or 12. Since it is intended to be given before sexual activity begins, it can be given as early as 9 years of age. ACIP also recommends vaccination through age 26 years for those who were not adequately vaccinated previously, including gay, bisexual, and other men who have sex with men, transgender people, and immunocompromised persons (including those with HIV infection) (CDC, 2018). Although it is considered an off-label use of the vaccine, studies indicate that it is effective in slowing the progression from AIN to anal cancer, and thus, anyone diagnosed with AIN may benefit from the vaccine.

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There is a lack of knowledge among medical practitioners and patients in high-risk groups about the prevention, diagnosis and treatment of chronic HPV infection, AIN and anal cancer. To start, healthcare providers need to learn how to ask their patients about their sexual activities, regardless of stated or assumed sexual orientation, to better understand who is at risk. In addition, medical providers need better training to screen and treat those at high risk and to educate their patients about the risks. Medical facilities need to invest in the equipment and training required for high-resolution anoscopy (HRA). To that end, the International Anal Neoplasia Society (IANS) has defined minimum standards for services and clinical practice in the investigation of anal cancer precursors (Hillman, 2016). These standards offer guidance to HRA practitioners about the set-up and implementation of high-resolution anoscopy, the provision of information to patients, staffing, infection control, medical notes, and follow-up referrals to and communication with a team of specialists.

There is a need for prevention education among high-risk patient groups, such as men who have sex with me, including how high-risk sexual practices such as receptive anal intercourse and the failure to use condoms are associated with persistent HPV infection and AIN. Patients of all genders who are HIV positive, have had other HPV-associated cancers, or have a suppressed immune system should be considered at high risk for AIN and anal cancer. Anal pap testing and HRA are highly recommended for these patients.

National LGBT Cancer Network HPV & Anal Cancer

Given the high rate of sexually transmitted diseases and anal cancer in MSM, further research should examine gaps between recommendations and reported experiences of men who have sex with men, especially about health care providers’ efforts to ensure that MSM is offered recommended sexual health services, such as screening for STDs and HPV vaccination.

There is also a need for more research, including randomized control studies when possible, that will result in clear guidance from medical societies about screening for and treatment of anal cancer. In the meantime, medical practitioners and patients at risk can urge health insurance plans to cover anal pap smears and HRA for high-risk groups in order to identify and treat the disease in its earliest phases.

As this article was being written, a new study focused on cervical cancer found that primary screening for HPV resulted in fewer cases and a lower rate of precancerous conditions than traditional cytological (pap test) screening (Ogilvie, 2018). Only further research about HPV testing can assess whether similar findings might apply to AIN and anal cancer.

Anal cancer, though rare, is increasing among specific high-risk groups, including HIV-infected individuals, MSM, and immunocompromised patients. HPV plays a significant role in anal cancer development, with persistent infections leading to anal intraepithelial neoplasia (AIN) and potentially cancer. Despite the potential benefits of anal PAP tests, standardized screening guidelines remain absent. Current treatment involves a combination of surgery, chemotherapy, and radiation, with a focus on preserving sphincter function. Prevention through HPV vaccination is recommended, but barriers such as lack of awareness and inadequate screening infrastructure persist.

HPV and Anal cancer are associated with one another, here's what you need to know.

Understanding The Relationship Between HPV and Anal Cancer

We do not know nearly enough about cancer in the LGBT community and we need to. None of the large national cancer registries and surveys of cancer incidence collect data about sexual orientation or gender identity, leaving lesbian, gay, bisexual and transgender cancer survivors embedded and invisible among the vast wealth of information these surveys provide to other groups. Other ethnic, geographic, and racial populations are able to use the data gleaned from these statistics to develop prevention and treatment programs dedicated to eroding the health disparities they face; they know precisely how prevalent cancer is in their communities. Lesbian, gay, bisexual and transgender people do not.

However, there is reason to believe that LGBT people are carrying a disproportionate cancer burden. There is adequate research to confirm that lesbian, gay, bisexual and transgender people have a unique “cluster of risk factors” that would lead us to have both greater cancer incidence and later-stage diagnosis. We estimate that there are over 1 million LGBT cancer survivors in the country today. This disproportionate burden of disease is referred to as “health disparities”.

Health disparities in the LGBT community are caused by multiple factors. There are no biological or physiological differences between LGBT people and our heterosexual counterparts. Rather, the disparities are caused by a combination of social/economic factors and behaviors, many of which can be traced to the stress of living as a sexual/gender minority in this country.

For example, a study of health disparities in a statewide population of lesbian, gay, and bisexual women found that lesbian and bisexual women were more likely than heterosexual women to have poor physical and mental health, asthma, and diabetes, to be overweight, to smoke, and to drink excess alcohol. These women could be expected to be at especially greater risk for breast cancer, as well as other cancers that have been linked to smoking, obesity, and alcohol abuse.

Unfortunately, the existence of health disparities in the LGBT population does not stop with cancer diagnoses. For the 1 million LGBT cancer survivors in the country today, the impact of disease and treatment on quality of life is significantly different from that of our heterosexual counterparts in the areas of sexuality, social relationships, and dealings with the medical community.

For instance, changes in sexual functioning — one of the most ubiquitous life-altering, adverse effects of prostate cancer treatment –impact gay and heterosexual men very differently. Yet too few health care providers ask about their patients’ sexual practices or know the answers when asked about the effect of prostate cancer on gay men’s sexuality or where we can receive culturally competent support on issues of sex, intimacy and our relationships.

The LGBT community is faced with a disproportionate cancer burden that needs to be addressed.

National LGBT Cancer Network

A Guide for Comprehensive Cancer Control Programs

Understanding The Relationship Between HPV and Anal Cancer

The LGBT Community's Disproportionate Cancer Burden

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