WGLB-TV Presents: Women’s Health: LBTs Fighting Breast Cancer

arvan's picture

For over a year, in the 1990s, I worked for a county HIV testing clinic. During that time, I gave HIV test results to frightened people who sat across from me waiting for news that might change the course of their lives; knowing that a positive result would bring more tests, toxic medications, changed relationships, and possibly death. With each test result, positive or negative, I tried to put myself in that person’s place and treat them how I would want to be treated—with kindness and compassion—if the situation were reversed. But I knew, no matter how much empathy I had, I would never really know what that person was going through. I would never know what it was like to sit on the opposite side of that table, hoping for the best but expecting the worst. I would never know…until suddenly, in a different but all too similar way, I did know.

This year, an estimated 175,000 women in the United States will be diagnosed with breast cancer and approximately 43,300 will die from it. In November 2008, I became part of these statistics. I was diagnosed with pre-menopausal, invasive ductal, triple-negative, grade 2/3, Stage IIa breast cancer.

Are We Really More At Risk?
Whenever a person receives a diagnosis of a potentially fatal illness, the first questions—not matter what the disease—are fairly similar: Am I going to die? What treatments are available? How will this affect my family/partner/child? But once the initial shock wears off, other questions start creeping into the consciousness: Why did this happen to me? Did I have more risk factors than the average person? Could this have been prevented?

I'd started having regular mammograms at age 35 because I knew I already had several "built-in" risk factors for breast cancer: family history (two maternal aunts with breast cancer), early menses, and dense breast tissue. After my diagnosis, I began doing research and discovered the theory that being a female bisexual may have also increased my risk for breast cancer. My first reaction was, "Huh? How could that be?" But when I dug a little deeper I found that the issue of LBT risk factors has been refined and redefined several times over the last 15 years.

In the 1990s, a National Cancer Institute researcher examined known breast cancer lifestyle risk factors and compared them what little information was known about the lifestyles of lesbians and female bisexuals. The report, presented at a national health conference, concluded that the risk for developing breast cancer might be two to three times higher for lesbians and female bisexuals than for heterosexual women. Unfortunately, this conclusion was based on several assumptions which were not based on clinical data, including:

  1. Lesbians/female bisexuals are more likely to be overweight than heterosexual women. (This also includes the risk factors of high fat diet and lack of physical activity.)
  2. Lesbians/female bisexuals drink, use drugs, and smoke at a higher rate than heterosexual women.
  3. Lesbians/female bisexuals are more likely not to have children or to have children late in life. (Both having children early and breast feeding seems to reduce the risk of breast cancer.)

This single report, while well meaning, was enough to cause a panic about the breast cancer "epidemic" among lesbians that resonated throughout the late 1990s. Fortunately, it also sparked interest in conducting new clinical research to determine if LBTs actually were at a higher risk for breast cancer than their heterosexual counterparts.

One of the first studies (in 2002) was conducted by University of California, San Francisco. They distributed surveys to lesbians, age 40 and older throughout the state of California and asked each lesbian participant to have a heterosexual female friend and a sister (if they have one) closest in age to fill out an identical survey. The results from the 1324 participants produced some interesting results (emphasis mine).

  1. As expected, lesbians had less live births/miscarriages, and used birth control pills significantly less than their heterosexual sisters and friends.
  2. There were no significant differences in alcohol use between lesbians when compared to their sisters or friends.
  3. At the time the survey was taken, lesbians actually smoked less than their sisters and friends.
  4. Lesbians had an overall higher BMI (weight to height ratio); however, there were no significant differences in weekly exercise, being a vegetarian, or eating a low-fat diet among the groups.

The study concluded that lesbians might have a slightly higher risk profile for developing breast cancer based on this sample, but it was by no means two or three times higher than for heterosexual women.

Societal Risk Factors
Research following the UCSF study showed similar results: lesbians and female bisexuals were at a slightly higher risk for the development breast cancer at sometime in their lives. However, they also seemed to show lesbians and female bisexuals were being diagnosed later and dying at higher rates than their heterosexual counterparts.

A study by The Lesbian and Breast Cancer Project conducted in Ontario, Canada began to shed light on the disparities experienced by the lesbian and female bisexual populations in the diagnosis and treatment of breast cancer. Their conclusions about women who were partnered with women (WPW) included:

  1. Fear of discrimination or being outed prevented WPW from seeking medical care.
  2. Reasons why heterosexual woman visit their gynecologists—like sexually transmitted disease concerns, birth control, and infertility issues—aren't perceived to be as important to WPW, so they may not receive checkups or clinical breast exams as often.
  3. WPW often earn lower salaries and have less earning potential than heterosexual women, leading to less access to quality health insurance/healthcare and delayed testing and/or treatment.
  4. WPW cannot provide healthcare coverage to their partners due to lack of marriage rights or domestic partner benefits. Even when domestic partner benefits are available, many WPW don’t take advantage of it for fear of outing themselves.

Breast Cancer in Transgendered Women and Men
As understudied as the lesbian and female bisexual populations are in regards to breast cancer, the situation is even worse with the transsexual/transgender population. To date, there are no studies of the incidences of breast cancer in transsexual or transgender individuals. There have only been three documented cases of breast cancer in this population, but that's probably a significant underestimate given the reluctance of many transgender individuals to reveal their transsexualism to their physicians.

Transgender people often faced the same barriers to breast cancer diagnosis and treatment as lesbians and female bisexuals, including fear of discrimination or outing, lack of available healthcare, and financial barriers to breast cancer treatment and testing. In addition, transgender people may have their own unique set of breast cancer risk factors, including:

  1. Transgender (MtF) women who are on high levels of estrogen may have an increased risk for breast cancer, based on studies showing that non-transgender women are at higher risk for breast cancer after five years of hormone replacement therapy.
  2. Excessive testosterone in transgender (FtM) men can be converted into estrogen, which may lead to estrogen-induced health problems (including breast cancer).
  3. Transgender men may feel disassociated from their breast and, as a result, may be hesitant to perform breast self-exams.
  4. Even after sexual reassignment surgery, transsexual men may still be at risk for breast cancer because breast tissue cells may still be present in the chest muscles, nipple area, and throughout the chest area.

There may be other risk factors that are important to understand in the transsexual/transgender populations, but without research medical professionals are flying blind. In fact, much more research needs to be done in the LBT population to study a more diverse range of race, income, and societal factors.

What Can You Do To Protect Yourself?
Breast cancer is the second most common cancer in women (lung cancer is #1) and the fifth most common cause of cancer death. These numbers are frightening but there are things you can do to manage your risk.

  1. Know your risk factors – The www.cancer.org website has an easy-to-use risk calculator that covers the most common risk factors and Wikipedia has a very comprehensive and detailed list of epidemiological risks. However, it's important to remember that the biggest risk factor for breast cancer is gender. Although men due get breast cancer, the chances are 100 times greater if you are female.
  2. Get regular screenings – Your first line of defense is breast self-examination. If you do not know how to perform a self exam, there are several instructional videos on YouTube. In addition to self examination, regular doctor visits and annual mammograms (baseline at age 35, yearly after 40) greatly increase your chances of catching breast cancer in its earliest stages. If you do not have insurance or think you cannot afford yearly mammograms, there are many resources out there that provide this service to low income women.
  3. Take control of your own health – An honest relationship with your healthcare provider can be the most important factor in maintaining good health. If you have a doctor that makes you feel uncomfortable or who doesn't respect you and your partner, find another a soon as possible. If you fear being outed by the healthcare system, remember that HIPAA laws guaranteee your privacy.

As for me, my prognosis is good. I had a lumpectomy on December 10, 2008 and discovered that my cancer had not spread – the surrounding tissue, lymph nodes, and other organs were all clear. For me, early detection was truly a lifesaver, since triple negative breast cancer is considered one of the most aggressive forms and spreads very rapidly throughout the body if undetected. I completed chemotherapy on April 30, 2009 and will begin radiation treatments in about three weeks.

Allison does chemo (and chicken)

Resources
For more information on breast cancer, please visit these websites:

National Cancer Institute

Susan G. Komen

BreastCancer.org

Triple Negative Breast Cancer Foundation

Remember, breast cancer is a survivable disease. But your best chance of survival begins with you!

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Breast Cancer in Trans Women

Sarah Riggle's picture

Your article mentions 3 documented cases of trans women with breast cancer.  I would like to add my history with breast cancer to your cases.

  As a 59 year old M to F have recently begun my transition I didn't expect getting breast cancer.  But having been diagnosed with invasive ductal carcinoma after being on the estrodol .075 mg patch and aldactone "T" blockers for 14 months, I underwent a modified radical mastectomy in Dec of 05.  Being that the lump was so small, I am taking tamoxifen with out radiation or chemo therapy.  I was treated by my surgeon and Cancer endocrinologist with them both knowing that my trans history.  I had known that my mother had bi-laterial breast cancer but it wasn't until I was recovering that I learned that two of my sisters had the same breast cancer that I had.  Being diagnosed with 'male' breast cancer requires that all hormone treatments stop, forever; so I started getting a Lupron injections to control my testostrone.   I took lupron for 2 1/5 years until this past November I got authorization to have an Orchectomy performed removing all the testosterone from my system. My health care provider paid for all of my medical needs.

  I have spent the last year undergoing a breast reconstruction to the infected breast and I had augmentation performed on the other side, so they are pretty close to the same size, a "C" cup.

  Living in South Georgia, I was the only trans women that I and my doctors knew about and being treated for breast cancer.

I am always telling my sisters to do their self breast exams religiously, you never know.

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