What We Don’t Know Will Hurt Us: Gynecologic Cancers

Dawna Cornelissen

Did you know...?

  1. Nearly 80,000 U.S. women are newly diagnosed with cancers affecting reproductive organs each year.
  2. Ovarian cancer is the most deadly gynecologic cancer.
  3. Annually, more than 27,000 women in the U.S. die from some form of gynecologic cancer.
  4. Survival rates for gynecologic cancers are as high as 90% when diagnosed early but drop to 50% when diagnosed later.
  5. September is Gynecologic Cancer Awareness Month.

If you didn't know this information, don't feel bad, because most people don't. According to the Women's Cancer Network, almost one-third of U.S. women feel they are not knowledgeable about gynecologic cancers, the majority (55%) feel they are only somewhat knowledgeable, and only fourteen percent say they are very knowledgeable about gynecologic cancers (PDF). But, hopefully, this will soon change.

Did you know…?

  1. Nearly 80,000 U.S. women are newly diagnosed with cancers affecting reproductive organs each year.
  2. Ovarian cancer is the most deadly gynecologic cancer.
  3. Annually, more than 27,000 women in the U.S. die from some form of gynecologic cancer.
  4. Survival rates for gynecologic cancers are as high as 90% when diagnosed early but drop to 50% when diagnosed later.
  5. September is Gynecologic Cancer Awareness Month.

If you didn't know this information, don't feel bad, because most people don't. According to the Women's Cancer Network, almost one-third of U.S. women feel they are not knowledgeable about gynecologic cancers, the majority (55%) feel they are only somewhat knowledgeable, and only fourteen percent say they are very knowledgeable about gynecologic cancers (PDF). But, hopefully, this will soon change. On December 9, 2006, Congress approved the Gynecologic Cancer Education and Awareness Act, also known as Johanna's Law. The bill, which is currently awaiting President Bush's approval, would provide $16.5 million to Health and Human Services (HHS) in order to carry out a national campaign to increase awareness and knowledge of gynecological cancers among both the public and health care providers. This would be done in the form of written materials as well as public service announcements designed to encourage women to talk to their physicians about gynecological cancers.

Johanna's Law was created in memory of Johanna Silver Gordon by her sister Sheryl Silver. Gordon, who was diagnosed with late-stage ovarian cancer in 1997, passed away in 2000 at the age of 58. The bill Gordon's sister created in her memory would help to educate people about the many types of gynecological cancers, including ovarian, cervical, uterine, endometrial, vaginal, and vulvar. It took Silver more than three years to get the bill passed, but when it did it passed unanimously in both the House and the Senate. Although it is encouraging to know that politicians agree gynecologic cancer awareness is important, what concerned me was the lack of women's advocacy organizations supporting or promoting the bill. As a woman and a reproductive rights activist, this bill is something I should have known about long before it went through Congress.

Within the last month, I have experienced three instances where a friend of a friend was diagnosed with some sort of gynecologic cancer. All of these women are under 24 years old. This frightens me because even I don't know a lot about the signs and symptoms of these types of cancers. Growing up in the age of breast cancer awareness, I almost forgot that women get any other type of cancer. With the recent approval of the HPV vaccine and the likely enactment of this bill, I can only hope that people will become more aware of and better equipped for early detection of gynecologic cancers. I also hope that women's organizations will become more involved in the advocacy of gynecologic cancer awareness and education because what we don't know about it will hurt us.

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Q & A Sexual Health

Queering Sex Ed: What You Need to Know About Sex Between Women

Taja Lindley

Just in time for STD Awareness Month, Dr. Tonia Poteat answers questions about queer sexual health—from the most common sexually transmitted infections among queer women to describing how we can protect ourselves and reduce the risk of transmission.

Editor’s note: A previous version of this article referred to the people this article meant to help as “cisgender women.” We decided to remove the “cisgender” specification because after careful consideration we came to the conclusion it was needlessly exclusive. Throughout the article, when the interviewer and interviewee use the term “woman” or “women” they are referring to people who have female-assigned genitals at birth. We regret any confusion the term “cisgender” may have caused.

This piece is published in collaboration with Echoing Ida, a Strong Families project.

Last month, I wrote an article about the challenges of navigating my sexual health in bedrooms and exam rooms as a queer woman of color. I had lots of questions about safer sex practices as a woman who has sex with other women, but during my gynecological visit, my health provider had very few answers.

It’s frustrating. Queer sex isn’t uncommon. So why is it so challenging to find the information we need to take care of our sexual health? Where can I find accurate and comprehensive information that can address my concerns?

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Just in time for STD Awareness Month, I had an opportunity to interview a culturally competent woman of color health provider and ask all of the questions I had about queer sexual healthnamely, sex between women.

Meet Tonia Poteat, a certified physician assistant and adjunct assistant professor in the Department of International Health at the Johns Hopkins Bloomberg School of Public Health, where she teaches “Introduction to Sexual Orientation, Gender Identity, and Public Health” and conducts research on LGBTQ health disparities. She sits on the editorial board of LGBT Health as well as on the education committee of the Gay and Lesbian Medical Association, and she has worked as a clinician for 18 years, devoting her practice to providing medically appropriate and culturally competent care to LGBTQ communities and people living with HIV. She has worked at nationally recognized LGBT health centers, including the Callen-Lorde Community Health Center in New York and Chase Brexton Health Services in Baltimore.

Basically, she knows what she’s talking about. So let’s get right to it.

Rewire: If you had to give the nitty-gritty, safe(r) sex 101 for women who have sex with women, what would you say?

Tonia Poteat: Sexual behavior among women is so varied. A study was published in 2012 describing the variety and frequency of sex acts between women. This study included over 3,000 women, mostly from the United States and the United Kingdom. The most common sex acts included (in order): genital rubbing, vaginal fingering, cunnilingus (oral-vaginal sex), and genital scissoring.

As a clinician during individual sessions, I work to provide an environment where the woman feels safe, then I ask her to tell me more about the type of sex that she has. Once I have that information, I talk with her about how to make what she enjoys doing safer for her and her partner(s), based on what we know about which fluids transmit what infections.

I have also done safer sex workshops for women. In those workshops, we list sexual fluids that can transmit sexually transmitted diseases (STDs): menstrual blood, vaginal secretions, and fecal matter. Next, we list the places where STDs can enter the body during sex: broken skin, anus, vagina, mouth. Finally, we brainstorm a list of possible sex acts between women, rank them by risk for various infections, and talk about how to make each act safer. For example, when discussing risk for HIV transmission, oral sex on a woman is higher risk than fingering her (assuming there’s no broken skin). While HIV lives in vaginal fluid, it’s harder for it to enter intact skin than the soft mucous membranes of the mouth.

Rewire: What is considered “risky” sex for queer women? And how can we best protect ourselves and reduce the risk of transmission?

TP: “Risk” varies depending on which sexually transmitted infection (STI) you are trying to prevent. For example, herpes is very common, and it can be transmitted by skin-to-skin contact. Because the herpes virus can shed even when there are no sores, the best ways to prevent herpes transmission include: using latex barriers (condoms, gloves, or dental dams) and/or having the partner with herpes take antiviral medications such as valacyclovir as prophylaxis. Other STIs that are transmitted by blood or vaginal secretions (such as HIV) can be prevented by anything that keeps the fluid away from an opening—using latex barriers for oral sex, washing or changing condoms when sex toys are shared, not sharing sex toys, wearing gloves for fingering, etc.

The same study that reported on sexual acts between women also looked at safer sex strategies most often used by women. Cleaning sex toys before or after use was most common (70 to 80 percent), using a condom was less common (12 to 21 percent), and using a dental dam was rare (less than 5 percent). While this study provided important information on sexual behavior between women, it did not include the entire repertoire of potential sex acts or safer-sex strategies that could be used between women. For example, it did not include questions about analingus (oral-anal sex) or about the use of finger cots or gloves. This study did not assess why condom and dental dam use were less common than cleaning sex toys. However, other studies have found that women rarely practice safer sex with each other because they are not at risk for pregnancy with a female partner, and they believe that sex between women poses little risk for STI transmission.

Rewire: What are the most common STIs among women who have sex with women?

TP: The most comprehensive review of STIs among women was published in 2011. According to this summary of the evidence, human papillomavirus (HPV) and herpes simplex virus (HSV) are common among women who have sex with women, while gonorrhea and chlamydia are rarer. Studies also suggest that bacterial vaginosis can be transmitted between women as well as trichomonas, syphilis, and hepatitis A. There have been two confirmed cases of HIV transmission between women—one reported in 2003 and the most recent reported this year. However, this data is based on a review of individual studies because no national surveillance tracks HIV or STIs among women who have sex with women.

Rewire: I’m aware that HPV is one of the most common sexually transmitted infections among women, regardless of sexual orientation. Given its prevalence, how can HPV be transmitted between women? Is this something we should be concerned about?

TP: HPV comes in many different types and is transmitted through skin-to-skin contact. Some types cause warts, while other “high-risk” types cause cervical cancer. The types that cause genital warts are not the same as the types that cause cancer. However, it is possible to have more than one strain at a time. Just like other women, women who have sex with women should be tested if they have an abnormal cervical cancer screening test or if they are over the age of 30.

In terms of ranking ease of transmission, it’s easiest for viruses to enter through broken skin; next easiest is mucous membranes (the soft skin inside the mouth, vagina, anus); the hardest is intact skin like what is found on the fingers.

Therefore, HPV is less likely to be transmitted from a vagina to fingers during fingering than vagina to vagina during scissoring. (These are the types of rankings we do in the safer-sex workshops.) Oral sex between women usually involves the mucous membranes of the mouth touching the mucous membranes of the vagina, and HPV can be transmitted that way.

Rewire: The provider I last spoke with during my gynecological exam mentioned that HPV is tested in women under the age of 30 only if abnormal cells are found during the Pap test. Is this true? If so, why is this the case?

TP: Current national guidelines recommend cervical cancer screening at 21 years old and older. These guidelines discourage HPV testing in women younger than 30 years old because HPV often resolves on its own in younger women without intervention. Testing women younger than 30 years old can lead to unnecessary anxiety as well as needless, uncomfortable, and expensive medical procedures. However, if a younger woman has an abnormal result on cervical cancer screening (like a Pap test), then HPV testing may be warranted. The most recent (2012) guidelines for cervical cancer screening and HPV testing can be found here.

Rewire: As you already know, Gardisil is the vaccine that protects against four common strains of HPV. The literature I read usually recommends Gardisil for people up until age 26, but what about for women who are older? A friend once said Gardisil has only been tested on women up to age 26, which is why they only recommend it up until that age. Is that true? And does the HPV vaccine have any particular importance for women who have sex with women?

TP: Vaccination against HPV is not currently recommended for women over age 26 because research studies found that it provided very little protection against HPV-related diseases, specifically cervical cancer, after this age. The HPV vaccine works best when it’s given before someone starts having sex. Because HPV is so common, it’s likely that someone who has been having sex will already have been exposed to at least one of the four types that the vaccine works to prevent. It is just as important for women who have sex with women to be vaccinated as it is for any other woman. More information about the HPV vaccine can be found here.

Rewire: My medical provider told me that the herpes test is unreliable and can give a lot of false positives. She said it’s best to test only if there are visible symptoms, like cold sores. Do you agree? And how reliable is the herpes test? Are there different tests for the disease?

TP: There are several tests for herpes available on the market. One of these tests (HerpesSelect ELISA) has had problems with false positive results. This is not true of other herpes tests. (See this nice explanation of false positive herpes tests in a blog by Dr. Peter Leone in the New York Times.)

The Centers for Disease Control and Prevention (CDC) recommends herpes testing in the following situations:

  1. When someone has genital symptoms that might be related to herpes, to confirm the diagnosis;
  2. When someone has a sex partner with history of genital herpes, to see if they are infected;
  3. When seeking a full STD evaluation, especially when someone has multiple sex partners.

Rewire: Why do medical providers have difficulty providing information about these things? I imagine queer sex is quite common. What’s the disconnect?

TP: Unfortunately, most medical providers receive little to no training in queer sexual health. In addition, many providers have a hard time imagining the variety of sexual acts possible. (Just think of all the people who ask, “What do two women do together, anyway?”) Thus, most providers are unprepared to give culturally competent and medically accurate information. This is slowly changing as more medical, nursing, and physician assistant programs begin to integrate LGBT health into their curricula.

Rewire: A friend of mine mentioned to me that the medical research concerning women who have sex with women is limited and is partly to blame for why providers give wrong or inconsistent information. Is she right? How reliable is the research? And is this population a priority in sexual health research?

TP: While medical research on women who have sex with women is limited, it is not completely absent. Many people are simply not aware that the research is out there.

Or they make assumptions about the sexual behaviors of queer women and respond based on myths rather than data. Research that is published in a peer-reviewed scientific journal is considered the highest standard of evidence. This is the evidence I’ve been citing to respond to your questions. Because the HIV epidemic has had such a dramatic impact on men who have sex with men, sexual health research among that population has been a high priority for institutes that fund sexual health research. However, entities like the Lesbian Health Fund do prioritize studies of lesbian health.

Rewire: Are there any additional resources you can provide for women who have sex with women who are looking for more information about how to navigate their sexual and reproductive health?

TP: These two are my favorite go-to sites: LesbianSTD.com and WomensHealth.gov. I recently found this nice website from Australia that provides some reader-friendly info on the variety of sex that queer women can have, along with STD information.

An additional resource for those who are navigating queer-friendly health plans and providers is Where to Start, What to Ask, developed by Strong Families. And since Dr. Poteat was being modest, I’ll also direct you to the Gay and Lesbian Medical Association’s “Top 10 Things Lesbians Should Discuss With Their Healthcare Provider,” which she authored.

This interview was edited lightly.

Commentary Environment

What We Don’t Know Will Hurt Us: The Need for Chemical Policy Reform

Jessica Arons

The Chemical Safety Improvement Act is bipartisan legislation that offers an opportunity for chemical policy reform to help ensure all pregnant women see a decrease in exposure to chemicals.

When pregnant, I was lucky enough to receive excellent prenatal care. Still, I was bombarded—and frankly, sometimes overwhelmed—with messages about what to do and what to avoid during pregnancy. And despite doing my best to comply with the prevailing guidance, my son may have been born with a significant number of industrial chemicals or pollutants in his body.

So much for clean living.

And herein lies the conundrum that a new joint committee opinion on chemicals from the American College of Obstetricians and Gynecologists (ACOG) and the American Society of Reproductive Medicine (ASRM) recognizes and grapples with. Even those of us with access to the best prenatal care and the resources to make (sometimes expensive) changes to our lifestyles can’t completely eliminate exposure to chemicals that are harming our health and that of our families.

Why? To begin with, we don’t have adequate information. We don’t know enough about the chemicals to which we are exposed every day—in pesticides used to keep bugs away from our food, the hazardous materials in our workplaces, and even the shampoo we use to wash away the dirt and grime of the day.

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Because of the lax—in fact, nearly non-existent—way chemicals are regulated in the United States, few chemicals have been tested to ensure they are safe for humans. What this means is that all pregnant women are exposed to a bath of chemicals that are affecting their health and the health of their developing fetuses. But the impact is more acutely felt by low-income women and women of color, who disproportionately live and work in areas with higher exposures to chemicals.

The committee opinion tries to address this inequity by encouraging OB-GYNs to provide anticipatory guidance to their patients about how to reduce exposure to chemicals. This guidance will ensure more women are educated about the potential impacts of chemicals and the simple steps they can take to reduce their exposure. The power of this guidance could be enormous. One recent study demonstrated that simple changes, such as eating organic or eliminating canned foods, can reduce exposure to Bisphenol A (BPA) by two-thirds and phthalates by one-half.

But what gives the ACOG/ASRM committee opinion such strong moral authority is its recognition that not all pregnant women receive the same care. Because of lack of insurance, lack of doctors in their community, and other social and economic barriers to quality health care, many pregnant women do not receive adequate prenatal care, including counseling on ways to reduce exposure to toxic substances. These are the same women who are at risk for higher exposure to chemicals because of where they live or work.

Regardless of what kind of prenatal care a woman receives, no woman should have to know the chemical safety profile of every product to which she may be exposed—through the food she eats, the sunscreen she puts on her skin, the solvents used in her workplace, or the paint in her apartment—and try to avoid it just so she can have a healthy pregnancy.

The only way to ensure all pregnant women see a decrease in exposure to chemicals is through comprehensive chemical policy reform. The Chemical Safety Improvement Act (CSIA) (S. 1009) is bipartisan legislation that offers an opportunity for such reform. While in need of improvement, the CSIA gives the U.S. public a chance to have a serious conversation about how to achieve effective chemical regulation.

Instead of wasting time debating whether to set gestational limits on abortion or allow your boss to exclude birth control coverage from your health plan, members of Congress could be having a meaningful discussion about what we can do to better protect maternal and fetal health for the women who choose to become pregnant and carry a pregnancy to term.

ACOG and ASRM join a growing chorus of medical organizations, including the American Academy of Pediatrics, the American Nurses Association, and the National Medical Association, who have determined that chemicals are having a detrimental impact on human health. And their committee opinion acknowledges that even perfect information and universal access to prenatal care can’t eliminate pregnant women’s exposure to harmful chemicals. Only Congress can.

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