THE BLOG
11/19/2013 01:37 pm ET | Updated Jan 23, 2014

The Invisible Epidemic: Lesbians and Cancer

October was Breast Cancer Awareness month. Everywhere you looked, from city lights to supermarkets, was awash in pink, the color designated for the "cause" of breast cancer. In my city, Philadelphia, the fountains ran pink and the lights atop three of the premiere skyscrapers in Center City were also pink, as were the lights in the famed Love Park as well as outside City Hall. Nationwide, pink ribbons, pink yogurt tops, pink energy drinks, pink caps, pink scarves, even the pop singer, Pink, herself supporting awareness, were in abundance.

Now the pink has been put away for another year and breast cancer is no longer in the spotlight. Unless you happen to be a breast cancer survivor or be battling the disease yourself, that is -- like me and millions of other women, many of us lesbians.

Throughout the month of pink, I kept waiting for the issue of lesbians with breast cancer to be highlighted in the media. But with the exception of a splashy feature I had written for the October issue of Curve magazine featuring Dr. Susan Love, the renowned breast cancer specialist and out lesbian who is spearheading research and is herself a cancer survivor, and my cover story for that same issue on lesbian comedian Tig Notaro and her own battle with cancer, lesbians seemed to have been elided from the breast cancer awareness story.

We are, yet again, invisible. But we are also getting -- and dying -- of cancer.

Everything we know thus far about lesbians and breast cancer stipulates to lesbians being at high risk for the disease -- and at high risk from other cancers as well.

I first wrote about lesbians and cancer nearly two decades ago for The Advocate and OUT. My own experience with cancer led me to investigate just how prevalent it was among lesbians. The more I delved into what few details were available, the more harrowing the story became: Lesbians were getting cancer at a rate well above the national average for non-lesbian women, yet there were no studies being done on lesbians and cancer, no outreach to lesbians on cancer.

Two decades later sexual orientation is still elided from the statistics being compiled on women and cancer.

Why?

Every effort has been made to include data on race, ethnicity and age with regard to women and cancer. But not sexual orientation. We know African American women are more likely to be diagnosed later and thus face more aggressive disease for many of the reasons lesbians are also clearly at higher risk.

So why aren't the National Institute of Health (NIH) and the National Cancer Institute (NCI) compiling this data?

Anecdotal information was all that was available when I was first writing about lesbians and cancer in the 1990s as the first journalist to write about lesbians and cancer for mainstream publications. Much like gay men during the early years of the AIDS epidemic, lesbians had to discern their own connection to the disease, but unlike for gay men, there was no eventual back-up from NIH or NCI to clarify what lesbians themselves were witnessing.

Nevertheless, there did indeed seem to be a cancer epidemic among lesbians. I knew dozens of women who had had cancer and met dozens more as I investigated the disease in my community-it wasn't just me.

The Helen Mautner Project was begun in Washington, D.C. specifically to address lesbians with cancer and give support to them. In 2000, I my book Coming Out of Cancer: Writings from the Lesbian Cancer Epidemic (Seal Press/Perseus Books) detailed the experiences-including my own-of lesbians and cancer. The book was done in concert with and as a benefit for the Mautner Project and landed me on OUT's Top 100. The book won awards, but it didn't get lesbians any closer to getting the kind of research attention we needed.

I was first diagnosed with breast cancer at 26 -- an anomalous age for breast cancer, as most women are diagnosed over the age of 40 and one's risk increases with age. I was one of the lucky ones -- I was diagnosed early. I'd gone to see my doctor because of continued discomfort in my right breast. She immediately sent me to a specialist who sent me directly to a surgeon. A little over 12 hours after I had first walked into my doctor's office, I was on an operating table having a tumor the size of a plum cut out of my right breast.

I had three surgeries in four years because the tumors returned. It was a harrowing time for me. The third surgery was especially gruesome and the recovery longer than the others. I had to go home from the hospital with a drain in my breast, leaking bloody lymphatic fluid into a bulb at the end that needed to be changed every few hours. The first time my then-partner (who has since died of cancer herself) changed the bandage, she fainted when my blood spilled all over our bathroom floor.

The sight and smell of your own blood is unsettling and scary. Your mortality is vividly in front of you all the time-blood, bandages, weird medicalized bras to hold your damaged breast together while it heals. Scars on an otherwise youthful body.

Cancer isn't pretty. It's not pink. It's not cute hats and infinity scarves and little pins on your lapel. When your hair falls out you don't look sexy like women with cancer on TV or in the movies. Your skin turns a color that isn't natural-mine had a greenish tinge for at least a year. Always in the back of your mind is the concern that it will come back. And in many cases, it does. Early detection like I got is essential, but it's still no guarantee, as I recently discovered.

According to NCI, based on current incidence rates, 12.4 percent of American women, or one in eight will be diagnosed with breast cancer in her lifetime. That number is, according to NCI, on the rise. In the 1970s it was one in 10.

The risk factors cited by NCI impact lesbians dramatically: Never having been pregnant or having had a pregnancy after age 30. Obesity (more than 20 percent over the ideal weight for your height and a BMI over 25; obesity after menopause is a significant risk factor). Smoking. Excessive alcohol use. Lack of exercise. (As Dr. Susan Love told me, "Sitting is the new smoking" -- meaning a sedentary life style is as dangerous as a two-pack a day habit.)

According to all preliminary research on lesbians and cancer, lesbians are at higher risk because they smoke more, drink more, are less likely to have had a full-term pregnancy before the age of 30 and are more likely to be overweight/obese.

So why is no one addressing the risks for lesbians?

Among other risks that impact all women are age-the older you are, the more at risk you are. Having gotten your first period before the age of 12 and/or the onset of menopause after the age of 55 are also risk factors.

Having the breast cancer genes -- BRCA1 or BRCA2 -- is a risk factor, but only a small percentage of women have that. [I wrote about this aspect for SheWired in May after Angelina Jolie disclosed her double mastectomy: click here.]

A familial history of breast cancer increases risk, particularly if the women in your family who have had the disease are close to you: a mother, sister, aunt.

In an interview on NPR's "On Being" with Krista Tippett on Nov. 17, Eve Ensler, author of The Vagina Monologues and herself a breast cancer survivor, talked about how the trauma she and many other women have experienced as girls and women -- sexual abuse, rape, incest, discrimination, sexism, misogyny -- may be risk factors for women developing cancer.

Ensler believes her own experiences with sexual abuse influenced her own cancer. Other women, notably famed lesbian poet and essayist, Audre Lorde, who died of metastatic breast cancer, and lesbian photographer and artist Tee Corinne, who died of liver cancer just months after her partner died of cancer, have made similar statements.

According to both NIH and NCI, stress is certainly a factor in disease and the stress of being a lesbian in a heterosexual-dominant society can cause women to self-medicate, which can exacerbate the risk of getting cancer. The theory I have written about over the past two decades with regard to lesbians and breast cancer is what scientists term "cluster risk"-a series of risk factors that are endemic to a particular group. That's what's happening to lesbians.

Another issue, which is ultimately the most serious risk factor for lesbians is lack of regular health care. While heterosexual and bisexual women must see the gynecologist frequently for birth control, infections and other issues related to being sexually active with men, lesbians do not. As a consequence, many lesbians-who are often on the lower end of the economic spectrum and may not have health insurance-don't get regular gynecological check-ups.

Two of my former partners died of cancer under the age of 50. Both died because they were uninsured and received their cancer diagnoses late -- too late to save their lives.

A mammogram can cost as much as $100 as an insurance co-pay, but without insurance it can cost more than $600. A PAP smear to test for cervical cancer -- one of the most treatable (and also most common) cancers if caught early -- is about $350 for the test and the doctor's visit without insurance.

It's easy to see why lesbians short on cash would forego these tests if they didn't have health insurance. Yet consider that according to NCI and womenshealth.gov, millions of women have HPV. HPV (human papilloma virus) is one of the most common STDs and one that is easily spread. But as Dr. Love notes, we now know it's the source of cervical cancer in women (and a risk factor in oral and throat cancers as well).

Homophobia is also an issue for lesbians. Many of us have struggled with finding doctors who are sensitive to our sexual orientation. But outing one's self to a doctor about one's lesbianism is discomfiting, even if one is out elsewhere. Many of the lesbians I interviewed over the years said they lied to their health care providers about their sexual orientation because it was "easier" or "less upsetting."

Being in the closet with our health care providers-or being too daunted by the thought of revealing our orientation to our health care providers to get regular exams-could kill us.

As I embark on my own cancer journey again, I will have to face all of this anew: coming out to each new doctor, explaining that my partner is not my sister or a "friend," but my spouse of 15 years. There will be the lack of support groups for lesbians with cancer or their care givers.

And what about all the women out there, all over the country, facing these same issues? Or all the women who don't even realize they are at greater risk for cancer than their straight sisters?

At present there is little research being done on lesbians and cancer. The Lesbian Health Research Center at UC Medical Center at UC San Francisco is doing some research, as is Dr. Love herself, but this is early research and the samplings are still too small to be valuable. Love has partnered with Avon to do her research at Army of Women.

But what is necessary -- essential, actually -- is for NIH and NCI to incorporate sexual orientation into their studies, as they have race, ethnicity and age to broaden the data base and give lesbians a clear picture of what risks they face for breast, cervical and other cancers.
My life, your life, the lives of all the lesbians out there -- we are all at risk. Pink stuff won't help us. Information will.

The best you can do for yourselves until that happens is cut your risk factors as much as you can. Do self-exams. Practice safe sex. If you don't have health insurance, seek a free clinic for testing and a mammogram. Keep yourself as healthy as you can. And hope that you won't be the one in eight, like me.