In December, I attended a roundtable discussion on cancer prevention outreach to the trans community in the Bronx (a borough of New York City). The American Cancer Society chapter in the Bronx has received a grant to overcome cultural barriers within minority communities to prevention of breast, ovarian, and prostate cancers, and their grant included outreach to lesbian and transgender communities. The grant also included money to provide medical information and sensitivity training to care providers.
According to numbers for the lesbian roundtable the representative from the ACS gave us, the trans roundtable, with about two dozen participants, was much more highly attended. Most present, in their introductions, indicated that they worked with organizations that provided health and housing assistance to trans people in New York City.
A patchwork of programs already exists in New York State and in New York City that transgender people can take advantage of for screening for these cancers: the Healthy Women Partnership and the Breast Health Partnership are paid in part by the CDC and the New York State Department of Health, and both cover mammograms for patients who aren’t covered by their insurance, including trans people who have insurance, but are still not covered because of their current or legal gender.
Reasons given by various members of the roundtable discussion why trans women avoid mammograms included a belief that free-floating silicone injections, if squeezed as in a mammogram, can cause harm, that free-floating silicone mimics lumps and can be misdiagnosed, and that mammograms are more difficult to provide for trans women with either free-floating silicone or breast implants. According to one woman present, in a patient with implants, the mammogram images must be taken from a variety of angles in order to gather enough information, yet there are no national or professional directives on the number or angle of these images.
It’s important for trans women to know what is rumor and what is scientifically supported fact when it comes to their health. According to Dr. Jamie Feldman of the University of Minnesota Committee on Transgender Health and Research, free-floating silicone can feel like a lump to a woman conducting a self-exam or to her doctor, prompting a work-up (mammogram, ultrasound and possible biopsy) to make sure the lumps are silicone and not cancer. But “the medical literature on free silicone actually causing cancer is very mixed,” says Dr. Feldman. “There are cases reported but it certainly does not happen very often–we don’t even have enough cases to say that people with silicone get cancer at a certain rate compared to other people.”
“There is no evidence that mammography increases cancer risk in anyone, silicone or not. People unfortunately make the following unsupported connection: ‘Silicone may be involved in cancer. Mammograms are X-rays and radiation can cause cancer. Therefore, mammograms cause cancer, especially if I have silicone.'”
According to Dan Klotz of the American Cancer Society, the ACS does not address silicone in mammography, except to say that with proper communication between patients and their physicians, there is no risk of rupturing a silicone implant during a mammogram. They do admit that injected silicone, which is not condoned by the FDA, is almost impossible to differentiate from lumps in mammograms, and does not have a statement on whether a woman with injected silicone in her breasts is at any greater risk from a mammogram.
Dr. Feldman also says that there are standards for radiologists and technicians performing and interpreting mammograms, but that the standards are not “one size fits all.” Whether a woman has implants or free-floating silicone, whether an implant is above or below existing breast tissue, and other factors determine the techniques the technicians use to improve the mammography image. And for trans women who have not had silicone injections or implants of any kind, a mammogram is as simple as for a bio-woman. Injected hormone-grown breasts look the same as those on a biological female to a mammographer.
The roundtable discussion lasted for two hours, the first three-quarters of that time spent discussing barriers individuals in the room had faced in accessing care, and programs that existed to provide care to trans people. In the last portion of the roundtable, Emmaia Gelman of the American Cancer Society Lesbian and Transgender Cancer Outreach program asked those present to brainstorm ideas for doing outreach to the trans community. Among the suggestions made were providing contact information of providers who are trans friendly, talking to the “moms” of “transy houses” in NYC, training outreach volunteers on speaking about the transgender experience with sensitivity, and bringing people together (as in the roundtable discussion) rather than doing street outreach.
One physician who was present at the roundtable discussion, Dr. Barbara Berger of the Community Healthcare Network’s Westchester Avenue clinic, is doing research on the social and medical traits common to trans people and the increased risks they face. Her clinic currently has no FTM clients, but she was very interested, when I asked, in seeing FTM clients and expanding the scope of her research to more adequately address the specific needs of trans men.
Dr. Feldman, with several others, are developing guidelines based on rates and risks of cancer for trans people which will hopefully be endorsed by The Harry Benjamin International Gender Dysphoria Association. Until those guidelines are available, she says “My guiding principle… [is] screening based on the body parts a person has– if someone has breasts, they should consider mammography starting at age 40; if they have a prostate, they should consider prostate cancer screening starting at age 50. The most important thing to know [is] what body parts one has, and be prepared to take care of them.” Adding to this, according to Dr. Sheila Kirk, HBIGDA as an organization, while it has interest in creating a registry of trans people with certain cancers, feels that specific guidelines for trans people are not strictly necessary. She added that she believes cancers such as those of the prostate and ovaries are lower among trans people because hormones offer some protective benefits against these cancers.
The American Cancer Society has a web presence at http://www.cancer.org. For more information on the New York City Community Healthcare Network, call their executive offices at (212) 924-1400 or (212) 366-4500.