Cancer and LGBT Patients and Families
About the Lecture
Research shows that specific risk factors and health disparities may create a disproportionate cancer burden for gay, lesbian, bisexual and transgender (LGBT) people. This session sensitizes participants to LGBT cancer risk factors and the unique issues faced by LGBT cancer patients and their families. As a result of numerous social factors, many LGBT patients face obstacles finding preventive services and accessing treatment and support once cancer has been diagnosed. Additionally, there are important considerations about coming out to treatment providers, psychosocial care for non-traditional family structures, and discussion of survivorship issues and end of life care needs in terms sensitive to the LGBT population.
Allison Diamant, MD, a Professor of Medicine in the Division of General Internal Medicine and Health Services Research, Department of Medicine, David Geffen School of Medicine. Her research focuses on access and quality of care for underserved and vulnerable populations, including studying disparities based on race and ethnicity, health insurance, income, gender, and sexual orientation. Dr. Diamant also cares for the primary health care needs of patients with an active practice at UCLA and located in Santa Monica. She has a particular interest in LGBT patients and their families.
Thomas J. Pier, MSW, LCSW, is a Clinical Oncology Social Worker at the Simms/Mann – UCLA Center for Integrative Oncology where he provides psychosocial care to patients with cancer and their families. He also facilities the group for young adults with cancer and has done presentations on health disparities in the LGBT population. He is also the Field Instructor for UCLA’s Department of Social Welfare and for the American Cancer Society’s Master’s Training Grant for Clinical Oncology Social Work and has been working in oncology and end of life care for almost twenty years.
This is a summary of a lecture presented on October 8, 2013.
There are nine million lesbian, gay, bi-sexual or transgender (LGBT) Americans living in 99% of the counties in this country. They come from all racial and ethnic groups, ages, socioeconomic groups, and educational levels. There are approximately one million LGBT cancer survivors in this country. There are both common and unique issues related to cancer and LGBT patients and families that we need to consider. Most importantly it is important to LGBT patients and families to feel safe in disclosing their status to their health care providers in order to obtain the best health care. Those patients and families who feel safe to come out to their providers are more likely to access health care, adhere to treatment, and develop trust in the treatment team and facility. When patients do not feel safe, they are more likely to conceal information and/or depart.
Sex: The sex of a person refers to hormones, chromosomes, genital and reproductive anatomy and is a biological classification.
Gender: Refers to the concepts of femininity and masculinity and is a socially constructed system of classification.
Gender and sex may not be the same for any particular individual, i.e., a person with male anatomy may dress, speak and behave in a feminine manner.
Gender Identity: The persistent internal sense of being a man or a woman. Everyone has a gender identity. For most people, their gender identity and their sex-match and were assigned at birth. For transgender people, it does not. Gender identity may or may not match appearance, body, or other’s perceptions. For some gender identity is more fluid and non-conforming, which is called “Gender Queer.”
Sexual Orientation is an identity label. It is based on sexual, romantic and relational ties.
Lesbian is a label for the sexual orientation of women who have primary sexual, romantic and relational ties to other women.
Gay is a label for the sexual orientation of men who have primary sexual romantic and relational ties to other men.
Bisexual is a label for the sexual orientation of people who are attracted to and partner with either men or women.
There is also a group of men who label as MSM, men who have sex with men, but who do not identify with the label of gay.
Family: The traditional definition of “family” is a group of people who are part of a biological network of individuals. However, for LGBT populations, “family” may be defined very differently. The inability to be married in some states means long-term partners cannot obtain legal status as spouses; being a “spouse” is another term that officially defines a family. LGBT populations may become estranged from their families of origin when they come out. Instead, LGBT individuals often have families of choice, based on mutual support and care for one another. We believe every medical practitioner should always ask a patient, “Who do you call family;” this is an important question for all patients, but especially the LGBT population.
According to the National Institute of Health, “Health disparities are differences in the incidence, prevalence, mortality, and burden of diseases and other adverse health conditions that exist among specific population groups in the United States.” The Minority and Health Disparities Research and Education Act defined a health disparity population if there is a significant disparity in the overall rate of disease incidence, prevalence, morbidity, or survival rates in the population as compared to the health status of the general population.“
The LGBT population is a health disparity population.
Most health care providers assume a patient is heterosexuality. Most do not ask patients about their sexual behaviors or identity. As a result, risk may be assessed based on sexual orientation but not on the behaviors. Substance use or mental illness is under-assessed in the LGBT population. The importance of the relationship between sexuality and community is not appreciated. Same-sex partners or nontraditional family members often are not included in decision-making. Health care providers often assume that LGBT individuals are not having or planning for children. Confidentiality may not be addressed.
Disclosure rates are low not only because of patient reluctance to share information but also because patients fear discrimination and stigmatization. Studies have found that even when patients wished to discuss their sexuality with their physicians, they did not feel comfortable or were not given an opportunity to do so. Many opportunities are missed to test, treat, educate and advocate regarding medical and social problems.
Since 2001, the State of California has conducted a biennial study called the California Health Interview Survey (CHIS). Since its inception, the survey has included questions about sexual behavior. Out of 51,000 men, approximately 3,700 said they had been diagnosed with cancer as an adult. Over 8% of gay men but only 5% of straight men reported a history of cancer. The disparity in these rates cannot be attributed to differences in race, age or income between gay or straight men. Approximately 7,300 out of 71,000 women in the study reported they had been diagnosed with cancer as an adult, but cancer rates did not differ among lesbian, bisexual and straight women.
At Risk Behaviors
Obesity: Many studies have documented higher rates of obesity, based on body mass index (BMI), among lesbian (34.2%) women compared to heterosexual women (24.7%), and lower rates among bisexual women (21.9%). In contrast, studies find lower rates of obesity among gay men compared to straight men, and there is very limited data on bisexual men. It appears there is more body dysmorphia among gay men than straight men. Body dysmorphia is a condition in which the afflicted individual is excessively concerned with body image, and physical appearance, even if they are normal or even attractive.
Tobacco Use: There are higher rates of tobacco use among the LGBT populations. Lesbians are almost twice as likely to be current smokers, and over half of lesbians have ever smoked compared to less than one-third of heterosexual women. Current evidence suggests that gay and bisexual men are much more likely to smoke than heterosexual men. Cigarette smoking among gay men is nearly double that of the general population.
Alcohol Use: Based on the answers in the 2012 CHIS study, lesbians (72%) and bisexual women (67%) have a higher rate of alcohol use as well as binge drinking than heterosexual women (55%). Binge drinking is considered four or more drinks at one time. The prevalence of alcohol consumption decreases with age among all women, regardless of sexual orientation or identity with one exception: The rate of binge drinking persists and remains higher for lesbians.
Again using responses for the 2012 CHIS study, 80% of all gay men reported using alcoholic compared to 70% of all heterosexual men and 69% of all bisexual men. Rates of binge drinking were similar. All of these rates are high and raise general concern for alcohol consumption by men.
Sexually Transmitted Infections (STIs) and Sexual Risk Factors for Lesbians: Research estimates that 77- 93% of lesbians have had sex over the course of their lifetimes with men; recent sexual contact with a male partner is more common among younger women. Having sexual contact with gay men or IV drug users is more common in populations that report having sexually transmitted infections (STIs). Researchers have confirmed that Female-Female transmission is possible for HSV, HPV, Trichomonas, bacterial vaginosis, and reports of HIV. Pathophysiologically, it is possible to transmit Chlamydia and Gonorrhea.
What We Know About Specific Cancers and the LGBT Population
Breast Cancer: The two biggest risk factors for breast cancer are being a woman and getting older. A woman whose mother, sister, grandmother, or aunt has or had breast cancer has a higher risk. Being overweight, especially after menopause or drinking alcohol may add to the risk. Women who have not had children and have not breast-fed, have not used oral contraceptives, and are older when they first give birth are also at a slightly higher risk. The best defense against breast cancer is to find it early. When breast cancer tumors are small, and it has not spread, the disease is easiest to treat.
With regard to lesbian and bisexual women, there are no significant differences in breast cancer screening rates overall, but there are lower rates of screening among lesbian and bisexual women of color and those with lower income. There is a predicted increased risk of breast cancer based on a higher prevalence of proven risk factors, which include not having children or later childbearing, smoking, alcohol use, obesity and lower rates of oral contraceptive use. However, the actual rates of breast cancer among lesbians and bisexual women are unknown at this time.
Ovarian Cancer: Ovarian cancer accounts for only about 4% of all diagnosed cancers in women, but it is the fourth leading cause of cancer death for people with ovaries. Approximately 22,000 new cases of ovarian cancer diagnosed in the US, and 14,000 women died from the disease in 2012. If caught early, the 5-year survival rate for ovarian cancer is over 90%. However, 75% of women are diagnosed in advanced stages when survival rates are low, in part because there is no good early detection screening techniques.
There is a predicted increased risk of ovarian cancer for lesbian and bisexual women based on having a higher prevalence of proven risk factors that include no pregnancies, increased smoking, lower use of oral contraceptive use, obesity, and alcohol use. Use of oral contraceptives for at least 6 months reduces the risk of ovarian cancer. However, the actual rate of ovarian cancer among lesbians and bisexual women is unknown at this time.
Cervical Cancer: Cervical cancer was once considered the most deadly female cancer, but due to the highly effective screening test called the Papanicolaou (Pap) test, diagnoses and mortality have dropped dramatically, and cervical cancer is now considered the most treatable female cancer. Yearly, over 12,000 American women are diagnosed with cervical cancer and over 4,000 die from the disease. The majority of these women who die have never had a Pap test. Cervical cancer is dangerous to all women who do not undergo regular screening by receiving the Pap test. The majority of cervical cancers in the US occur among women who have never been screened or who were not screened within the past five years. Doctors recommend that the Pap test is done every three years after a normal Pap test.
Underutilization of cervical cancer screening is variable among lesbians. There are lower rates of Pap test in the past year for lesbians but no difference at 3 years. These data varies between population-based and observational samples. In some samples, there is variability in race/ethnicity, education, and income. The actual rate of cervical cancer among lesbians and bisexual women is unknown at this time.
Lung Cancer: People who smoke are at the greatest risk for lung cancer; smoking is responsible for 87% of all lung cancer deaths. It is also linked to many other cancers. Smoking is also responsible for other tobacco-related diseases such as heart disease, bronchitis, stroke, and emphysema. Research further suggests that HIV-positive smokers do not live as long as their non-smoking HIV-positive peers. Actual rate of lung cancer among LGBT is unknown at this time.
Colorectal Cancer: Most colorectal cancers (commonly known as colon cancer) are found in people ages 50 and older. People with a personal or family history of the disease, and people who have polyps in the colon or rectum, or inflammatory bowel disease are at greater risk. A person who eats a diet high in red and processed meats, uses alcohol, smokes, is overweight/obese, and is inactive is also at increased risk. Testing can save lives by finding polyps before they become cancer.
Screening rates are similar for heterosexual women (68%), lesbians (74%) and bisexual women (66%) who have ever been screened. Screening for colorectal cancer is higher among gay men (83%) compared to heterosexual men (69%) and bisexual men (70%). However, we don’t know if they are getting the necessary colonoscopies. The actual rate of colorectal cancer among LGBT is unknown at this time.
Anal Cancer: In the general population, anal cancer is a rare disease; each year about two people out of every 100,000 people in the general population are diagnosed with anal cancer. The same high-risk strains of HPV (human papillomavirus) that cause most cervical cancers in women are also responsible for causing anal cancer. The virus, spread through receptive anal intercourse, is estimated to be present in 65% of gay men without HIV and 95% of those who are HIV positive. Other factors that increase the risk of anal cancer include a high number of sexual partners and use of alcohol, drugs and tobacco.
HIV-negative men who have sex with men (MSM) are 20 times more likely to be diagnosed with anal cancer. Their rate is about 40 cases per 100,000. HIV-positive MSM are up to 40 times more likely to be diagnosed with the disease, 80 anal cancer cases per 100,000 people. A rectal exam will find some cases of anal cancer early. Some experts recommend screening with an anal Pap test for those who might be at high risk for anal cancer. The actual rate of anal cancer among MSM is unknown at this time.
Prostate Cancer: Prostate cancer is one of the most common cancers in men. Most prostate cancer occurs in men older than 50. African American men are more likely to develop prostate cancer than men of other races. Having one or more close relatives with prostate cancer also increases a man’s risk. Eating a lot of red meat or high-fat dairy products also increases the risk.
Talk to a doctor about prostate cancer screening tests every year starting when you are 50. Talk about the benefits and limitations of testing so you can make an informed decision about whether to be tested. If you are African American or have a close relative who has/had prostate cancer when they were younger than 65, you should start having these discussions at age 45. Gay men with prostate cancer have some additional social and sexual challenges that are rarely addressed adequately by their oncologists and social workers. The actual rate of prostate cancer among MSM is unknown at this time.
Testicular: Most testicular cancers occur in men between the ages of 20 and 34. White men have a higher risk than men of other races. The main risk factor for testicular cancer is a condition called cryptorchidism or undescended testicle(s). A family history of testicular cancer also increases a man’s risk. Some evidence suggests that men with HIV, especially those with AIDS, are at greater risk. The actual rate of testicular cancer among MSM is unknown.
Key Concepts Related Risk and Common Cancers
At this time, little is known about the actual rates of common cancers among LGBT populations, but stay tuned. We do know about the risk factors for many cancers, and these risks are found more commonly among LGBT individuals. It is vitally important to have a doctor you trust and with whom you are comfortable so that you can openly disclose your situation and any risk behaviors that might warrant additional monitoring. Receive all preventive health care aimed at reducing cancer risk or identifying it at an early stage. Eliminate those lifestyle choices that increase risk such as tobacco and alcohol use, increase protective factors such as physical activity, nutritious eating, and weight loss.