Cancer Risk in the LGBT Community

By Mimi F.

Not long ago, I sat in on a SHARE Hotline training session that focused on supporting LGBT callers. When the trainer said that lesbians have higher cancer rates than our straight peers, incredulity swept the room. I understood their surprise: cancer is a disease, not a prejudice. It can strike anyone. Why should the LGBT community be more at risk?

The reasons are complicated, and involve a long history of marginalization of these communities – not only within society at large, but within the medical system and the socio-economic realm. The first thing to know is that the higher risk among lesbians does not spring from innately physiological or biological differences. Nevertheless, a "perfect storm" of interlocking social issues – and unhealthy behaviors that can be linked to those issues – disproportionately affects lesbians.

For example, studies show that lesbians are more likely to smoke, drink too much, and be overweight. These are all known breast cancer risk factors for anyone, heterosexual or otherwise. And that's not all: not having children, or having them after the age of 30, increases risk – often the case with lesbians. And we tend to see our doctors less often for routine check-ups (for a number of reasons) when other issues, such as smoking or weight, might be discussed.

According to The National LGBT Cancer Network, the increased prevalence of risky behaviors in the lesbian community – a "cluster of risks" known as a health disparity – can be "traced to the stress of living as a sexual/gender minority in this country." Pondering this idea, I also wonder: Are lesbians so oppressed in education and healthcare that we have fewer tools to take care of ourselves? How much does an often indifferent or even sometimes hostile medical system inhibit our willingness or ability to seek care? How much of a role does our lower rate of insurance coverage play in our higher rate of cancer?

I have my opinions, but no conclusive answer. As usual, our people and our issues sorely need more study. And, while we wait, we need to make sure that we, and our friends, loved ones, and queer peers are given the most up-to-date recommendations for taking care of our own bodies, and that we have the best access possible to healthcare. To that end, I've summarized below screening guidelines for breast cancer that lesbians, bisexual women, transmen and transwomen need to know.

IMPORTANT SYMPTOMS AND SCREENING GUIDELINES FOR LBGT PEOPLE:

All Lesbian and Bisexual Women: The National LGBT Cancer Network recommends that all women, including transgender women with breast tissue, have a mammogram every year starting at age 40. I would add that, if you have a family history of breast or ovarian cancer, you should start screening earlier; if you are well under 40, you may want to investigate alternate screening methods such as MRIs, which may be better at detecting cancer in the denser breasts of younger women. If you notice any changes in your breasts – a lump, discharge, skin puckering or discoloration, pain – get it checked by a culturally competent, sensitive doctor. (For a different view about mammography screening, see Alice Yaker's blog post on this topic.)

Transgender Female to Male: According to The Mautner Project, those who identify as FTM but have not had top surgery should follow the same guidelines as those for lesbian and bi women, above. I add that even those who have had top surgery should, during their yearly physical (which should include what is commonly referred to as a gyn exam), have their doctor perform a clinical exam of their chest area: "[T]here may still be risk of breast cancer even after sexual reassignment surgery…because breast muscle wall tissue remains. Breast tissue cells might be present in the nipple area as well as throughout the chest area."

Additionally, FTMs should make sure that they and their physicians "follow breast screening guidelines for their age group." There has been considerable debate about breast self examination and whether it's still necessary to do it every month; most who find their own lumps do so not during BSE but in daily routines – showering, dressing, adjusting clothing. Mautner recommends BSE and urges FTMs to know their bodies and be alert to changes.

Transgender Male to Female: Those who identify as MTF also need to be proactive about breast cancer risk. There no confirmed studies of this group, but estrogen is central to the mystery of breast cancer, so it makes sense that the good people at Mautner note that "transgender women (MTF) who are on high levels of estrogen may be at increased risk of breast cancer" and should act accordingly. Moreover, a small number of men, straight or potentially transgender (there are not stats on this) get breast cancer. So MTFs need to know their bodies, see their doctors, ask for clinical breast exams, know the signs of early cancer, and seek treatment if necessary.

NEXT POST: What we need to know about ovarian cancer incidence and symptoms.

Posted July 5, 2011.

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As an FTM (female to male transgender person) who received a diagnosis of breast cancer at the age of 52 I want to emphasize that FTM top surgery does not remove all breast tissue, as you pointed out. Top surgery is not a therapeutic mastectomy, it should be considered more as a breast reduction procedure, leaving behind many breast cells that can develop into malignancy.

Also, as someone who has not smoked, never drank alcohol, and has never been overweight, the absence of those risk behaviors does not offer complete protection, and screening is still very important. Early detection before metastasis of breast cancer is very important to improve long term survival odds.

Whenever we talk about the high prevalence of risk behaviors (drinking, smoking, overeating, etc) in the LGBT community I feel it is very important to point out the direct correlation between adverse childhood experiences (such as abuse, bullying family rejection and neglect) that our community is exposed to in high numbers, leading to higher rates of risk behaviors and premature disease and death in adulthood, as documented by the CDC and Kaiser Permanente in their joint ACE study of over 17,000 patients starting in 1995 and continuing today. They found a direct relationship between childhood trauma and neglect and the onset of disease later in life, including cancer. The more the trauma, the earlier the disease and death for the individual.

If we can support and protect LGBTQ children from the damaging effects of abuse, bullying, trauma, and family rejection our community will reap the rewards in health and longevity for years to come.

If anyone wishes to see the study you can find it here in the American Journal of Pediatrics:
http://www.ajpmonline.org/article/S0749-3797(98)00017-8/fulltext

Or if you prefer a nonacademic, layperson friendly article about their results, try here:
http://www.alternet.org/story/148385/how_a_traumatic_childhood_can_lead_to_obesity,_health_problems_and_early_death?page=entire

— Jay Kallio

Thanks for your comments, Jay. You make an excellent point about the correlation between adverse childhood experiences and risky behaviors that lead to early disease and death. In fact, the systemic marginalization that many LGBTs experience throughout life can have an adverse effect on health.

Thanks for the links to the study.

— Beth Kling, Communications Director

I very much appreciate that SHARE is devoting attention to our LGBTQ concerns, Beth.

The effects of systemic, institutionalized discrimination and stigma against us through our lifetime does exact a considerable toll, just as with other marginalized minority groups.

One report that made a huge impact on my view of this "minority stress" health risk was the Massachusetts Youth Risk Behavior Survey, one of the very few CDC and public health department surveys that included LGBTQ people as a minority group in the years 2001-2011.

The survey showed that for every risk behavior tracked LGBTQ youth fared the worst of any minority group. In some risk behaviors, like suicidal ideation, self injury, and being the victims of sexually abuse and rape, LGBTQ youth reported more than double the rate compared to Black, Hispanic, and Asian youth in the same age range. Other risk behaviors were also shockingly high, and in every category were significantly higher than other minority groups. It was clear that our LGBTQ health risk behaviors, including smoking, substance abuse, and eating disorders, started very early in life, setting the stage for later health impairment.

That survey data showed the profound degree to which, even in Massachusetts, one of the most progressive states in the US in regards to LGBTQ inclusion, our LGBTQ youth were already bearing a tremendous burden of minority stress, and suffering a lack of support that offered them few alternatives to the self soothing risk behaviors that would exact a huge cost on their later health. Other states do not track LGBTQ youth as a minority group, so we do not even have the data to compare other geographic areas to Massachusetts.

Rejection by family, and emotional, physical, and sexual abuse by adult authority figures appears to do the most damage to LGBTQ youth.

In some sense, I see this as how we "pay double" for suffering discrimination and abuse; first from the emotional toll of the damage done, then later with the suffering and losses of resultant illnesses later in life. I hope that risk behaviors will someday be seen as the high cost coping strategies of youth, who are too young to be equipped with more healthy, positive coping skills, instead of doubly imposing judgement and stigma on those trapped by those behaviors.

I especially hope the high rates of risk behaviors will not be used to further stigmatize our LGBTQ community, which would be terribly counterproductive, as blaming the victim so often is.

If you are interested in the Massachusetts Youth Risk Behavior Survey you can find the PDFs of their 2005, 2007, 2009, and 2011 results here:
http://www.doe.mass.edu/cnp/hprograms/yrbs/

— Jay Kallio

Thanks again, Jay. Yes, it's vital that high risk behaviors in LGBTQ communities get recognized for what they are -- the high cost coping strategies of youth who have no other options -- and not a reason to further stigmatize an already marginalized community. Thanks for the links to the surveys.

— Beth Kling, Communications Director

Mimi F.

Mimi has worked as a consulting LGBT Outreach Coordinator for SHARE. She is also a singer/songwriter/actress and yoga teacher in NYC.