Cancer Comes Out

When Susan DiPronio was hospitalized with a fever during her chemotherapy treatments for stage I breast cancer in 2004, she had a bad reaction to the antibiotics she received and went into shock. As hospital staff rushed into the room, DiPronio s girlfriend was rushed out. She wasn t a family member, the nurses said. DiPronio, a writer, photographer and social activist in Philadelphia, recalls the unsettling feeling of being alone. During one of the scariest moments of her treatment, she says, the person who cares about you most is not there.

Fear, doubt and isolation can be part of treatment and recovery for any cancer survivor. For those who are lesbian, gay, bisexual or transgender (LGBT), these feelings can be magnified by worries about misunderstandings or discrimination. In addition, the LGBT population may be at greater risk for several types of cancer and may have worse outcomes than heterosexuals, according to research findings.

Different Experiences, Greater Risks

While very little cancer research has focused on the LGBT community, cancer may affect this population at different rates and in different ways than their heterosexual counterparts. A 2011 study in the journal Cancer found that gay men who responded to the California Health Interview Survey were nearly twice as likely as straight men to be cancer survivors. A 2012 study of women who responded to the National Health Interview Survey found that women who lived with other women had more than three times the risk of dying from breast cancer as those who lived with men. And the experience of recovering from cancer can be quite different: A review of studies about prostate cancer in men who have sex with other men found that, while these men are diagnosed with prostate cancer at about the same rate as heterosexual men, they experience poorer sexual function and quality of life after diagnosis and treatment.

Researchers believe LGBT people have risk factors that may predispose them to higher rates of certain cancers. Gay men are more likely than straight men to be infected with human papillomavirus (HPV), putting them at greater risk for anal and oral cancers. In the study of responses to the California Health Interview Survey, researchers suggested that infection with HIV, which can be a risk factor for cancers including Hodgkin lymphoma and lung cancer, may be responsible for higher cancer rates among gay men. (See Many Cancers in HIV-Positive Patients Go Untreated. ) Women who haven t had children or breast-fed have a higher risk of breast cancer, and these factors are more likely to be present in lesbian and bisexual women than in heterosexual women, according to the American Cancer Society.

LGBT people also have higher rates of depression and anxiety than their heterosexual counterparts, which can lead to alcohol use, smoking and obesity all risk factors for cancer. Nearly one in four gay, lesbian and bisexual adults smoke, while only one in six heterosexual adults are cigarette smokers.

These risk factors aren t caused by sexual orientation or gender identity, says Gwendolyn Quinn, a cancer researcher at Moffitt Cancer Center in Tampa, Florida, who studies reproductive health in at-risk populations. But they are linked to issues and situations that arise from being LGBT. In 2015, Quinn and her colleagues reviewed the available research on cancer in the LGBT population for CA: A Cancer Journal for Clinicians and found that LGBT people may be at greater risk for at least seven cancer types: anal, breast, cervical, colorectal, endometrial, lung and prostate.

Compounding the problem, LGBT people are less likely to get regular health exams, including cancer screenings. Going to the doctor may be uncomfortable a transgender woman, for example, might put off an office visit to avoid the discomfort of having to explain she needs a prostate exam. But the reasons for less-frequent checkups go beyond what happens in the doctor s office. Health insurance coverage is less common in the LGBT community than among heterosexuals, although the legal acceptance of same-sex marriages may start to expand access to health insurance. Employer-sponsored insurance coverage of married same-sex couples went up by more than 5 percentage points in the first 18 months after New York state passed the Marriage Equality Act in July 2011.

Getting More Data

Researchers and LGBT community members are concerned about cancer risks, but it s not clear yet to what extent these risk factors affect the number of cancer cases among LGBT people. We have a huge absence of data indicating potential disparities within the LGBT community, says Jack Burkhalter, a clinical psychologist at Memorial Sloan Kettering Cancer Center in New York City, who studies cancer risk-related behavior in the LGBT community. While researchers are starting to home in on cancer risk factors among LGBT people, he says, it s not the same thing as knowing what the actual incidence and prevalence of cancers are in the community.

To gather more information on these issues, Burkhalter and his colleagues organized a landmark 2014 meeting on cancer in the LGBT community at Memorial Sloan Kettering, bringing together researchers, physicians, policy experts and LGBT community advocates. In January 2016, the meeting resulted in a national LGBT cancer action plan that drew from the meeting s conclusions. Recommendations to improve cancer research and care for the LGBT community included developing targeted support services for LGBT patients, widening education and research programs on LGBT cancer risk factors, and supporting efforts to expand insurance coverage.

Experts also suggested that questions about sexual orientation and gender identity be included on national health surveys and on the intake forms people fill out when they first arrive at a doctor s office. A lot of times, in the context of cancer care, oncologists don t necessarily ask about someone s orientation, says Charles Kamen, a researcher at the University of Rochester in New York who studies how same-sex couples respond to cancer. When Kamen surveyed LGBT patients about the issue, most said they brought up their orientation with health care providers. Even for people who have been out to friends and family members for years, each interaction with a new member of their health care team requires coming out again. Kamen says people wonder, Do I go in with my rainbow flag and tell everyone from the front office to the tech to my anesthesiologist that I ll see for two minutes? A 2013 survey of more than 300 LGBT cancer survivors found that while 88 percent of the people surveyed had told their primary care physician about their LGBT status, only slightly more than half had come out to their oncologist and surgeon.

Change may be on the way. Starting in January 2018, Medicare and Medicaid programs will require health care providers to use electronic health care records that include sexual orientation and gender identity categories; patients can choose whether to provide this information. These government health care programs currently cover more than 120 million Americans. While this mandate will provide needed data for researchers studying LGBT health care, it also aims to better the patient experience by encouraging providers to be more aware of gender and sexual orientation. When this information is already part of a patient s chart, the patient won t need to come out to each new provider. The electronic system may also prompt providers to suggest the screenings that each patient needs; for instance, a transgender man s chart may include reminders for cervical cancer screenings.

Finding a Safe Place

Eighteen states have nondiscrimination laws that require LGBT patients to receive the same treatment and care as other patients, but several states are considering or have put into place religious freedom acts. For example, newly passed state laws in North Carolina and Tennessee allow providers to refuse care to LGBT people based on the providers religious beliefs. That s something we re very concerned about, says Sean Cahill, a health policy researcher at the Fenway Institute in Boston who studies LGBT health disparities. If your provider says, Are you gay? you may be reluctant to tell the truth.

Regardless of location, individual providers can make LGBT patients feel welcome or worried. In a national survey conducted by the New York City-based National LGBT Cancer Network, some respondents talked about their excellent health care teams, while others expressed their fears. One respondent avoided mentioning sexual orientation in the hospital so that surgeons wouldn t accidentally miss removing cancer lesions; others reported hearing disparaging remarks made by doctors.

Transgender survivors have particular concerns about discrimination. In the January 27, 2016, issue of LGBT Health, a peer-reviewed journal, two family medicine physicians reported the case of a 28-year-old transgender woman who was diagnosed with testicular cancer. The case report includes the woman s concern about her future interactions with health care providers: Regardless of how I look, [having to bring up my diagnosis] may result in being treated like a man for the rest of that visit. Testicular cancer is seen as a male-only problem. I feel like the moment it s brought up, a light switch goes off and I m instantly a man to people.

To try to improve the quality of care, the National LGBT Cancer Network is one of several organizations offering cultural competency training for health care providers. For patients, the group provides a list of screening and cancer treatment facilities nationwide that are LGBT-friendly. Several clinics and programs, such as the Penn Medicine Program for LGBT Health in Philadelphia, offer resources tailored to the LGBT community from transgender patient health advocates to a list of providers dedicated to addressing LGBT health care needs.

Creating a more welcoming environment can help LGBT people feel safe to come out to their health care teams and some studies suggest that doing this can improve care. When doctors knew their male patients had sex with other men, they were more likely to recommend screening for HIV and vaccinations for sexually transmitted diseases. Survivors may feel better, too: In a survey published in 2015 in Oncology Nursing Forum, LGBT cancer survivors who told their health care team about their sexual orientation and gender identity reported better health overall. For DiPronio, coming out to her oncologist led to additional support. After learning what had happened in her hospital room, he made sure the staff recognized her girlfriend as a family member who needed to be included in all aspects of care.

Even with the most welcoming of providers, LGBT survivors may find that some of the ramifications of diagnosis and treatment can be hard on their relationships. Rhonda Watson of Canton, Georgia, had surgery in December 2007, soon after being diagnosed with stage IIIC ovarian cancer at age 36. As parents, Watson, a data management analyst for the American Cancer Society in Atlanta, and her partner had an extra set of concerns. The state of Georgia considered Watson, the biological mother of the couple s daughter, to be the child s only legal parent. Watson and her partner had to prepare for the possibility that, should Watson die, the surviving mother would not automatically get legal custody. For our daughter, losing one parent to cancer and another because of society s view of our family would have left her confused and lost, Watson says. I can t even begin to imagine how a 2-year-old would have processed these events.

Going through a cancer diagnosis and its consequences can be hard for adults to process, too. A July 2011 testicular cancer diagnosis left Aaron Olson, who is gay, reeling both physically and emotionally. The 39-year-old contracts manager had one testicle removed and then learned the cancer had spread to his abdomen. At Virginia Mason Medical Center in Seattle, he underwent nine weeks of chemotherapy in the fall of that year, followed by a second surgery in February 2012 to remove abdominal lymph nodes. The surgery damaged nerves that controlled his bladder; even now, he experiences retrograde ejaculation, in which sperm is shunted toward the bladder.

I had this idea that I was damaged goods because my body had changed, Olson says. Fortunately, he had a strong support system of family and friends, but still, months after the surgery that removed any trace of cancer, he was hit by depression. Cancer is an intimate thing, he says. Not everybody can walk away from it feeling OK.

Discussing these concerns in a nonjudgmental setting with people who understand can help stave off isolation. Olson requested a gay therapist at Virginia Mason, who explained to him that his post-cancer depression was normal. I wanted to be in a room with someone who had a better understanding of what I was experiencing, Olson says.

Other survivors, like Watson, have found support groups helpful. If in-person groups don t feel safe, Watson recommends online support groups run by the National LGBT Cancer Network. And, she says, recognizing the support that s already around you is critical. Having a group of friends that will be there for you is incredibly important, she says. There will be times when you need someone to lift you out of the fear and pain. Don t be afraid to take their hand and allow them to help you.