Initial results from study on being diagnosed with breast cancer
Each October, the autumn colors are hidden beyond a wall of pink, as well-meaning health care workers and activists decorate their scrubs and offices in cancer-pink ribbons. In addition, fundraising walks, runs and breast cancer educational programs will take place in cities across the U.S.
"Somehow, the country has collapsed all meaningful support for breast cancer survivors into the Wearing of the Pink.", said Liz Margolies, LCSW, the executive director of the National LGBT Cancer Network, "And this one-color-fits-all approach does not meet the needs of lesbian and transgender breast cancer survivors."
Margolies is the co-investigator, along with Marilyn Smith-Stoner, nursing professor at California State University, San Bernadino, of a recent national study of lesbian, gay, bisexual and transgender cancer survivors. Their findings suggest that supporters of breast cancer awareness month should "Pause before they Pink".
The study, "The Experience of Being Diagnosed with Cancer by Lesbian, Gay, Bisexual, Transgender People" reported that many LGBT cancer survivors in the study reacted negatively to the feminization of breast cancer care. "Many lesbians and transgender men are offended by the values inherent in the pinking of breast cancer. It becomes a source of further isolation and may diminish the caring relationship", says Dr. Smith-Stoner.
As one responded phrased it: "Reproductive cancers are loaded with gender issues. For example, not all women (or men) with breast cancer want to wear pink. I think over-feminizing BC is problematic."
Another wrote: "There's a hell of a lot of emphasis in breast cancer awareness about helping women look stereotypically feminine. I personally have no interest in breast reconstruction, and it irked me that I was automatically referred to a plastic surgeon at the time of my mastectomy".
A lesbian survivor wrote: "Being a Lesbian facing having your breasts cut off, it would be good if they did not assume you were concerned about how "men" would see you in the future!"
While the military has finally ended the Don't Ask Don't Tell policy, healthcare workers have not yet done so. LGBT patients are rarely asked about their gender identity and sexual orientation. When they are, clinicians have not been trained to respond appropriately. Few are equipped to discuss the impact of cancer on LGBT sexuality and relationships.
"Our research highlights the critical need to inquire about patients' sexual orientation and gender identity and to include "families of choice" in treatment. You cannot offer significant and tailored support otherwise.", said Margolies.
LGBT cancer survivors are often more isolated and frightened than their heterosexual counterparts.
As one respondent wrote: "I was never out during the whole process to anyone. I had no one in the hospital or doctor visits with me for fear of my gayness being discovered and then the doctors "accidentally" not removing all the cancer lesions. It would have been nice to have my partner with me. My family refused to come and told me they hoped I would die from the cancer."
As another said: "My support system, many of whom are trans and gender variant people, were made to feel very uncomfortable by my doctors and medical staff due to disregard for pronoun use, sideways glances, and overall awkward responses."
One respondent summed it up well, "Don't assume all patients are straight. Don't assume they have a support network. Don't assume ANYTHING".
"We can do better than that. We must do better than that. The voices of the LGBT survivors must be heard and their needs addressed with the respect offered other people with breast cancer.", said Dr. Smith-Stoner.
Further results of the study will be released soon. In the meantime, Margolies and Smith-Stoner ask that, beginning in October, healthcare workers ASK all their patients about sexual orientation, RESPECT the needs of unique needs of lesbian and transgender survivors and INVITE their support system into treatment.
"As we begin breast cancer awareness month we ask that you Pause before you Pink. Don't forget the needs of lesbian and transgender breast cancer survivors", said Margolies.
The study was funded by The DAISY Foundation's Patrick J. Barnes Grant for Nursing Research and Evidence-Based Practice Projects.
SOURCE California State University San Bernardino
National LBGBT Cancer Network,
Liz Margolies, Executive Director,
Marilyn Smith-Stoner, Professor of Nursing,
California Sate University,