Chapter 3 – Coming Out to My Breast Surgeon

When I was diagnosed in 2002, it was not uncommon to hear about lesbians experiencing hostility in healthcare settings because of their sexual orientation, or for partners to be left out of each other’s healthcare altogether. And it wasn’t very common to hear about lesbians who were open with their healthcare providers about their sexual orientation or same-sex relationships. This is the context in which I was facing breast cancer.  

Even though my gynecologist knew I was connected to MG and her family, we had yet to tell her that we were a couple. From our perspective it seemed implicit, but we weren’t comfortable yet making it explicit, and it hadn’t seemed important enough in that setting to take the risk. I was so used to just answering no to birth control questions, and having that be the end of that particular line of questioning. I had never had a gynecologist pursue the topic any further or ask for clarification about my sexual orientation, and there were never any questions about sexual orientation or non-heterosexual sexual activity. 

But now we were facing the possibility of breast cancer, and I needed MG by my side and visible to the doctors, so MG went with me to my first appointment with the breast surgeon.  We were both nervous.  While we were waiting for my appointment, we saw two other women in the waiting room, who looked to me like a lesbian couple.  I thought, hmmm, maybe this doctor is going to be okay.  I mean, if she’s a breast surgeon, most of her patients are women, so she has to have her fair share of lesbians among those women, right? So, when we met her that day, I introduced MG as my partner.  I wanted to make sure that she was aware of our relationship right out of the gate, rather than waiting until the “right moment” or an “appropriate time” and finding myself paralyzed by fear in situations when I need MG the most.  She didn’t even blink, which I loved about her.  She included MG in the conversation that day (and every appointment after that) asking her if she had questions, making sure that she and I both understand what she was telling us. 

This is the kind of reaction you want from your potential surgeon, or from any healthcare provider. And if you are lucky, it’s the kind of reaction you get.  Now, if she had been freaked out about my partner being a woman (something I have not encountered even once on this journey, thankfully), I would have had to either talk to her about her reaction and see if she could find a way to be more accepting, or I would have had to reconsider my choice of surgeon.  Since we really felt comfortable with her all around, I’m very glad that we didn’t have to worry about her acceptance of our relationship.

In addition to her acceptance of our relationship, the surgeon became an important source of information for me when I was facing new cancer care providers and medical settings. Based on her reactions, I was more confident about being open with new providers about our relationship. My ability to approach new providers with that confidence, as well as the changing attitudes towards the LGBTQ community in this area and in our community, may be why I have always had positive experiences with cancer care providers, as well as any other healthcare providers. In addition to her influence on my confidence levels with other providers, if I ever had any doubt about the kind of reactions I might get, I could ask her if she felt that provider or facility is safe.  She was very familiar with the local health care system and, as a heterosexual provider, had a great “insider” perspective on other providers’ attitudes about LGBT patients. She always understood why I might be concerned, and she never steered me wrong about the kind of reaction I could expect in any setting. 

Because of our confidence in my breast surgeon, we came out to everyone else involved with my cancer care. With the oncologists, radiation oncologist, with nurses, office staff, with everyone. And this also extended to being more open with my other healthcare providers as well – primary care, gynecology, allergist, just about everyone. Not that many of them needed to be told; I think it was obvious to most of our routine providers already, they just never brought it up on their own. Their intake forms never asked, their routine medical records update forms didn’t ask. MG was always my emergency contact, but I was never sure what I should list in the “relationship” box next to her name. Even after our wedding in 2005, it wasn’t until 2010 when our state passed legislation for insurance providers to recognize same-sex marriage performed in other localities where it was legal, that I felt comfortable listing MG as my spouse, rather than my “significant other” or “partner.” When the US finally recognized same-sex marriage as legal in 2013, we could feel comfortable choosing “married” as our relationship status or listing each other as “spouse.” 

I remember being particularly concerned in January 2008, when I was preparing for my mastectomy and reconstruction, which would involve a few days in the ICU before being moved to the regular post-surgery unit. I was very worried that MG would be denied the right to stay with me in the hospital. Especially the first night. This was pre-COVID, when you could have people stay with you overnight in your room or, in the case of ICU stays, in the family waiting room but with access to you throughout the night. But I had heard stories about same-sex partners being denied that right, and I had one family member who suggested that she should be the one to stay with me that night instead of my wife, as she was my “real family.” If my own family member could be so wrong about how important MG was to me, I worried that nurses or staff physicians might also be that wrong.  I took that concern to my breast surgeon, and she assured me that she had other lesbian patients have the same procedure in the same hospital, who stayed in the same ICU, and none of them had ever reported facing homophobia there. She also offered to mention how important MG was to me, and to assure that she would have full access to me in the hospital. Because she was so understanding about my concerns, I had full faith we would be treated just like any other patient and their partner. And we were.

 

What kind of person would I be if I wasn't ...

... born into poverty, would I have compassion for the poor?
... born to mentally ill parents, would I have compassion for the mentally ill?
... female, would I have compassion for women who need access to affordable reproductive healthcare? Would I be pro-choice?
... the daughter of an Irish immigrant, would I have compassion for immigrants from other countries?
... a lesbian, would I have compassion for people in the queer community? Asexual people? Trans people? Non-binary gendered people? Genderqueer people? For people in other minority groups?
... a foster child, would I have compassion for young people struggling in that system? For young people struggling as they age out of the system?
... bullied in school, would I have compassion for the underdog?
... physically and sexually abused as a child, would I have compassion for child abuse victims and survivors of childhood sexual abuse?
... raped, would I have compassion for rape victims?
... someone with an eating disorder, would I have compassion for people struggling with eating disorders or food addiction?
... an alcoholic, would I have compassion for the addicted?
... sober, would I have compassion for people struggling to stay clean and sober?
... a caregiver to parents with dementia, would I have compassion for people with dementia and their caregivers?
... a breast cancer survivor, would I have compassion for people without adequate health insurance? Without access to adequate healthcare? Living with a pre-existing condition?

We are the product of our environments and life experiences, and I know that I have relied on and benefited from the compassion of others as I faced all of the challenges stemming from these different aspects of my identity, my childhood, my adult life.

I would like to believe that had I lived a different life, I would still be compassionate and know right from wrong on all of these issues, but what if that wasn't the case? Every moral, social and political value that I hold dear is rooted in my experiences with different kinds of oppression, with the consequences of being neglected and abused as a child, with facing my own mental health issues, eating disorders, addictions, breast cancer, and the resulting chronic health concerns resulting from these experiences. All of my choices are the result of my experiences. But is that the only thing that makes us who we are?

I am surrounded by people who have not had all of these experiences, who are just as or more compassionate as I. But there are also people in this world who have many of the same experiences who do not seem as compassionate.

What IS it that makes us compassionate? What is it that makes YOU a compassionate person?

Why should we care about sexual minority women with breast cancer?

I have said this in previous blog posts, and it bears repeating: when an entire body of cancer-related literature basically ignores a particular community of women, we all remain ignorant of the experiences of that community, even those of us who are a member of it.

To try to shed some light on the breast cancer experiences of sexual and gender minority women (lesbians, bisexual women, queer women, women who have sex with women, gender queer and trans women - MTF and FTM, intersex people), I am conducting a study of social support and sexual and gender minority (SGM) women with breast cancer.  So far, recruitment has been fairly slow, as this is a difficult population to find. So to directly access a larger number of women and improve response rates, I am using crowd-funding to raise money to recruit potential subjects through the Susan B. Love Foundation's Army of Women.  Please donate for this important study!

Over a series of blog posts, I am sharing detailed sections from my original research proposal, so that you can see what my thinking was in choosing this topic and what I hope to accomplish with the study.  I hope you find my argument compelling enough to make a donation to my Indiegogo campaign and to share the study link with any women you know who might qualify or know someone who qualifies.  
Today's post is about the background of my study - a discussion of the existing literature on breast cancer and non-heterosexual, non-cisgendered women.  I hope you will read it, and post any questions you have in the comments.

Study Background

The invisibility of sexual minority women in breast cancer literature is incongruent with what researchers have identified as differential levels of breast cancer risk among women based on SGM identity, and a greater risk for fatal breast cancers among SGM women. Based on these greater risks, one would expect to find more representations of the breast cancer and survivorship experiences of SGM women.

This invisibility in the breast cancer literature, combined with experiences of heterosexism and homophobia in health care settings, and barriers to health insurance and access, may contribute to under-utilization of breast cancer screenings by lesbian and bisexual women. Increasing the visibility of breast cancer in the lesbian community, and improving understanding of the experiences of SGM women with breast cancer  could improve utilization of breast cancer screenings and reduce heterosexism and homophobia in health care settings.

Previous studies of lesbian and bisexual women cancer survivors indicates the importance of social support in negotiating the cancer experience, as well as the sense of isolation experienced by SGM women, many who do not personally know other SGM women who have had cancer.  Some studies of female SGM cancer survivors indicate that for sexual minority women, sexual identity is not as important to the cancer experience as one might expect, and female SGM cancer survivors may not be experiencing higher levels of anxiety or depression than heterosexual or traditionally-gendered women.

Other research indicates that older women living with female partners are generally more likely to need some assistance with activities of daily living than those living with men . More specific to cancer survivors, female bisexual survivors are more likely to smoke but less likely to report physical inactivity then female heterosexual cancer survivors, and  lesbian and bisexual female cancer survivors report poorer self-rated health than heterosexual female cancer survivors. Other research has identified perceived discrimination and perceived social support as impacting the quality of life of female sexual minority breast cancer survivors . The diversity of findings from the handful of studies of sexual minority women with breast cancer indicates that additional research is needed to understand the stresses experience by this population, and of the supports needed by, and available to, them as they navigate breast cancer treatment and survival.

The costs of invisibility for sexual minority women

When an entire body of cancer-related literature basically ignores a particular community of women, we all remain ignorant of the experiences of that community, even those of us who are a member of it.

I am conducting a study of the social support and sexual and gender minority (SGM) women with breast cancer.  So far, recruitment has been fairly slow, as this is a difficult population to find. So to directly access a larger number of women and improve response rates, I am using crowd-funding to raise money to recruit potential subjects through the Susan B. Love Foundation's Army of Women.

Over a series of blog posts, I will be sharing detailed sections from my original research proposal, so that you can see what my thinking was in choosing this topic and what I hope to accomplish with the study.  I hope you find my argument compelling enough to make a donation to my Indiegogo campaign and to share the study link with any women you know who might qualify or know someone who qualifies.

SGM women are essentially invisible in academic and mainstream breast cancer survivor literature and in breast cancer advocacy movements.  Books written to guide breast cancer survivors through treatment or recovery assume that all women with breast cancer are heterosexual and traditionally gendered. Commonly available breast cancer memoirs are also written by heterosexual women. While SGM women may still find useful information in materials written from and for the female heterosexual perspective, the heterosexism in these written accounts of breast cancer and recovery experiences tells SGM woman that their breast cancer experiences are unimportant. The heterosexism in breast cancer and recovery literature also reflects the heterosexism many SGM women encounter, or expect to encounter, in health care settings. An additional result of this invisibility is that care providers lack a real understanding of how their interactions with SGM women and the different influences in the lives of SGM women function as sources of stress or support for SGM women facing breast cancer.

For SGM women, heterosexist assumptions in the breast cancer literature and in health care settings may serve as sources of stress and as barriers to seeking the help and support they need during one of the most difficult times of their life. Because SGM women with breast cancer may not have access to a community of other SGM women with breast cancer for support, breast cancer can be a stressful and isolating experience. Women may hunger for information from other SGM women who have been through the same experience. As one survivor in the Lesbians and Cancer Project (LBCPT) stated:

I don’t have other lesbians who are survivors around, or I don’t know other lesbians who’ve had breast cancer. And so I haven’t really had a chance to explore other issues that could come up (2004, p. 6).

This study asks if sexual orientation and gender identity are related to stresses and support in the lives of SGM women with breast cancer. This is an exploratory study, using personal stories to learn about the experiences faced by SGM women who have breast cancer. Data is collected using an online survey. The specific aims of this study are to: 1) learn about the breast cancer experiences of SGM women; 2) to explore sources of stress encountered by SGM women facing breast cancer; 3) to explore sources of support available to and needed by SGM women facing breast cancer; and 4) to develop written resources for SGM women facing breast cancer.