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.

 

Chapter 1: Mom

**Copyright 2022 Maria Teresa Brown - All Rights Reserved**

Part 1: The First Go-Round (or Ductal Carcinoma In Situ)

Chapter 1: Mom

I will start my story by telling you that I am not the only woman in my family who has had breast cancer.  While neither of my grandmothers had it, as far as I know, or any of my aunts, my mother did. It was found during a routine mammogram, and she had a complete mastectomy on that side, but no other treatment. After the mastectomy, she wore a prosthetic or not, depending on her preference on any given day. Her cancer was found when she was 63, and she remained cancer-free until her death at 81. 

At the time of her diagnosis and mastectomy, I was in my late 20s.  I had been sober for a few years, but was still a heavy smoker. Around that time, I knew of a women in my local community who had breast cancer and was a heavy smoker – she had a mastectomy, kept smoking, got metastatic[1] breast cancer, kept smoking, and then she died. All within a few years.  It seemed really fast and frightening to me. All I could think about when I heard my Mom’s diagnosis was that now that breast cancer was officially “in my family” I didn’t want to be dealing with having breast cancer and trying to quit smoking or being unable to quit smoking and dying from cancer because of it. That was the year that I began making my first serious attempts at quitting smoking.  It took several years and multiple failed attempts, but I did finally quit smoking for good the year that I turned 32. 

Now, I don’t know for sure if cigarette smoking has ever been proven to cause breast cancer, but if your mother, a heavy smoker, had any kind of cancer, you would probably find yourself wondering if her smoking had anything to do with it. In my mother’s case, she did not quit smoking. Ultimately, she developed COPD, and her official cause of death was “complications of COPD.” Mom’s smoking was not something I could change. But I could change my own habits, and so I focused on that. And one of the first things I thought the first time I was diagnosed with breast cancer was “thank God I quit smoking when I did!” 

Since my first diagnosis, alcohol abuse has also been linked with breast cancer.  As I mentioned before, I was already sober a few years when Mom had her mastectomy, and I was sober 12 years when I had my first breast cancer. My doctors have always been confident that my history of alcoholic drinking was distant enough not to be linked to my breast cancer. I am not as confident, but I am certainly grateful that I was not still drinking when I was diagnosed. Because the only thing that was harder than quitting smoking for me was quitting drinking. And I would definitely have been told to do both once I had breast cancer. Whether I would have been able to, though, is highly unlikely. 

This chapter is about Mom, not just because of her history as a smoker and a breast cancer survivor, but because of my role as her caregiver throughout the years that I was dealing with facing and surviving breast cancer.

I was diagnosed with my first breast cancer in August of 2002. I had already spent pretty much every day of that summer at the hospital, trying to figure out what was happening to my mother.  That spring, she had been moved out of the apartment she shared with Dad into a homeless shelter for mentally ill women, and eventually into her own apartment in an enriched housing program.  Her enriched housing program was essentially independent living for older or disabled adults who qualifid for Social Security Disability, Medicaid, and public housing. It was not a good transition. She was very unhappy, and her health was bad. While she had lived with bipolar disorder all of her life, she was additionally depressed about being separated from Dad, but he just didn’t want to, or couldn’t, take care of her anymore.  She also started getting really forgetful.  More than I even realized at the time.  Nobody was aware of it, but she was experiencing a medical condition – hyperparathyroidism – that was causing all the calcium in her bones to leak out into her blood. This caused hypercalcemia, which caused the memory loss and started making her fall. The worst fall broke 2 vertebrae in her back and split her head open, landing her in the ER. They discharged her back to her apartment that day, which felt unsafe to me, but I didn’t know what else to do. A week later, she was completely incapacitated and had lost most of her ability to speak. She was back to the ER, and this time admitted into the hospital. Within a week, and before they could figure out what was going wrong, she ended up spending 20 hours in a coma. She survived the coma but was what they called “severely demented” for weeks afterwards. When she was well enough, they discharged her to a nursing home. And she lived in nursing homes for the rest of her life. Her dementia became less severe after that initial hospital stay, but she never recovered her short-term memory or her capacity to take care of herself well enough to live outside of a nursing home.

In the middle of Mom going through all of that, I went to the gynecologist for an annual exam.  I had been living in Syracuse with my partner for a year and a half and had not been to the gynecologist since before I moved. Which meant I was overdue for an annual exam. I hated going to the gynecologist, mostly because it is an unpleasant experience for any of us, but also because of repeated questions about birth control (no matter how many times I told them I didn’t have sex with men, they just kept asking those questions!) and my history as a sexual abuse survivor.  So I had been putting off my first visit to MG’s gynecologist.  Eventually, her mother told her to just make the appointment for me if I wouldn’t do it myself.  The best advice ever, it turns out.  MG made me the appointment for that July, and so like a good girlfriend, I went.  The gynecologist’s office was in the same building as an imaging office, so she sent me right over for my baseline mammogram.

I was only 36, and since Mom’s breast cancer a few years earlier, the former gynecologist had told me I didn’t need a mammogram until I turned 40, because Mom’s cancer was post-menopausal. But MG’s Mom, and their gynecologist, believed in early baseline mammograms, so that you have images to compare to when you start your regular mammograms at age 40. This is why I was sent over to imaging for a mammogram.  The physical examination of my breasts was totally normal.

The events of that afternoon are not entirely clear anymore, it was so long ago.  I know they wanted a magnification of my left breast, because the radiologist wanted to take a closer look at it. Which means that I had to have extra mammograms done on that side. And I know that the area they were concerned about was very close to my armpit, so they really had to pinch my breast in the machine, which hurt. After the second image, the technician sent me back to my gynecologist, who told me that there was a suspicious area in my left breast and they needed to refer me to a breast surgeon.  Before I left their office, I had an appointment with Dr. G, who ended up being my breast surgeon for both breast cancers. 

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[1] Metastatic breast cancer is when the cancer has spread to other parts of your body (like your liver, brain, or bones) or comes back (recurs) after you have complete treatment for the initial cancer. Some people might call it systemic cancer, or stage four cancer, or end stage cancer. At this point, the cancer is not curable, although depending on the particular details of an individual case, it may be manageable with the appropriate treatments, and some women have been known to live for many years with metastatic breast cancer.

My Breast Cancer, My Mother, My Wife, and Me: One Lesbian’s Breast Cancer Journey

I've decided to use this blog to share my breast cancer memoir, which I hope to self-publish. The title of this post is one of the titles I'm considering. Please tell me what you think of it in the comments.

Lesbians, and other members of the LGBTQIA+ community, are essentially invisible in mainstream breast cancer literature.  Mainstream books written to guide breast cancer survivors through recovery from treatment are written with an unacknowledged assumption that all survivors are cisgender heterosexual women, and the authors of commonly available cancer memoirs are cisgender heterosexual women. While lesbians may still find useful information in literature written from and for the heterosexual survivor’s perspective, their invisibility in these written accounts of cancer and recovery experiences effectively communicates that their cancer experiences are unimportant. Many lesbians may see these heterosexist assumptions as barriers to seeking the help and support they need during one of the most difficult times of their life. Because lesbians with cancer may not have a community of other lesbians with cancer around them, and cannot find themselves in the cancer literature, cancer can be a very isolating experience. They may hunger for information from other lesbians who are going through the same experience.

I was diagnosed with my first breast cancer less than ten years after my mother survived her own breast cancer. As a survivor of two breast cancers (DCIS in 2002 and Stage I in 2007), I have been through multiple lumpectomies, radiation therapy, a bilateral mastectomy with reconstruction, chemotherapy, and a hysterectomy. In addition to being relatively young for each of these cancers, 36 and 42 respectively, I am also a lesbian.  I was fortunate in that, at the time of my first diagnosis, I personally knew two other lesbians who had also been through breast cancer. I quickly realized, however, that all of the support resources offered by local and national breast cancer organizations assumed that all patients are heterosexual, and that at fundraising events in my area, it was assumed that we were all heterosexual. If I wanted a community of lesbian cancer survivors, I would have to create that community. In 2008, I created a Facebook group for lesbians with cancer and their partners. Our membership currently numbers 321 lesbian, bisexual, and gender non-binary patients, survivors, and partners or caregivers from around the United States and the world. Publishing this cancer memoir is another step in providing lesbian cancer patients and survivors some sense of community with other lesbian cancer survivors.

I tell my cancer story using a combination of narrative text, email messages, private journal entries, blog entries, and messages from family members and friends.  Throughout my cancer experience, I have made sure my sexual orientation and my relationship with my wife were visible to healthcare providers, and my wife has been an active partner in all of my treatment decisions and in my relationships with my healthcare providers. While I have always had to be intentional about that visibility, and sometimes had to risk that visibility in uncertain environments, I have been very lucky in terms of providers being respectful of me and of us. This is an important point for those lesbians who may be putting off preventive screenings for fear of discrimination and homophobia in healthcare settings.  While these negative experiences do sometimes happen, they are not inevitable. Depending on where you go for treatment, you may find providers who are more accepting than you expect. In this context, my memoir also communicates the importance of being proactive in terms of regular healthcare and cancer screenings, and provides a list of available resources for lesbians and their partners facing cancer.

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.

Social Support and Sexual Minority Women with Breast Cancer

I am conducting a research study on social support and sexual minority women (lesbian, bisexual, queer, women who have sex with women, trans men and women, etc.) who have had breast cancer. A full description of the study is available below.

If this survey applies to you, I hope you will consider participating. 

As this is a very small population and difficult to find, I am also hoping you can help me reach other women by sharing this link with your networks or with any individuals you know for whom this survey would be appropriate, or who may know someone themselves who might be appropriate. Your experiences are important to me, and your help would be greatly appreciated. 

Please let me know (mbrown08@syr.edu) if you have any questions, and thank you for your help! 

Maria T. Brown, LMSW, PhD
Syracuse University 

STUDY DESCRIPTION:
My name is Maria Brown, and I am a professor at Syracuse University. I am inviting you to participate in a research study. Involvement in the study is voluntary, so you may choose to participate or not, and you may change your mind and leave the study at any time. This page will explain the study to you and please feel free to contact me by email (mbrown08@syr.edu) with questions about the research. I am happy to explain anything in detail if you wish.

I am interested in learning more about the sources of stress and social support affecting sexual minority women (lesbians, bisexual women, women who have sex with women, transgender women) who have had breast cancer. I am asking adult women of all ages and from all walks of life, who identify as a member of a sexual minority (lesbian, bisexual, transgender, queer, or women who have sex with women) to share their breast cancer experiences, and how their life has been affected by having breast cancer. You are being asked to participate in a survey. This will take approximately 30-45 minutes of your time. Once you begin the survey, you can take a break at any time, and you will be able to return in the next 6 days to complete the survey. All responses entered in an incomplete survey will be saved for six (6) days. All information will be kept confidential. This means that your name will not appear anywhere and your specific answers will not be linked to your name in any way.

If you decide to take part in the survey, and at least partially complete the survey, you will be given the choice of entering in a raffle for a $10 Amazon e-gift card. The odds of winning the gift card will be 1 in 20. You do not have to answer any questions you are not comfortable answering. Entering the raffle will require you to share your email address at the end of the survey. This email address will not be used to link your survey responses to your email address, and we will make every effort to protect your confidentiality. Your survey responses and your email address will be stored in separate electronic files on my password-protected computer, and your email address will never again be connected to the survey data.

Whenever one works with email or the internet, there is always the risk of compromising privacy, confidentiality, and/or anonymity. Your confidentiality will be maintained to the degree permitted by the technology being used. It is important for you to understand that no guarantees can be made regarding the interception of data sent via the internet by third parties.

The benefit of this research is that you will be helping us to better understand the sources of stress and social support of sexual minority women with breast cancer, and identify ways in which sexual orientation or gender identity are relevant to breast cancer treatment and life as a breast cancer survivor. This information should help us to better understand what sexual minority women go through in these situations, in order to develop programs that better serve this population. In addition, I will be publishing the results of this survey, to serve as a resource for other sexual minority women facing breast cancer. There are no personal benefits to you from taking part in this study.

The risk to you of participating in this study is that it may be upsetting to think about things you went through during your breast cancer experience or as a result of having breast cancer. If participating in this project brings up difficult feelings about your breast cancer experience, or if you would like the support of other sexual minority women who have been through cancer, you can join the Facebook group for Lesbian Cancer Survivors and Caregivers (https://www.facebook.com/groups/LesCanSurvive/). This is a members-only group of lesbians who have had cancer, or who have cared for someone with cancer – they come from all over the world, have different types of cancer, and are at different stages of diagnosis, treatment, recovery, survivorship, or bereavement. You can also find additional information for LGBT people with cancer at The National LGBT Cancer Network (http://www.cancer-network.org/).

If you do not want to take part in this survey, you have the right to refuse to take part, without penalty. If you decide to take part and later no longer wish to continue, you have the right to withdraw from the study at any time, without penalty.

To protect your privacy, information about your participation in this study will not be shared with anyone else, including any acquaintances, agency staff members, or service providers who may have forwarded you the email invitation to participate in the survey.

Contact Information:
If you have any questions, concerns, complaints about the research, please contact the researcher Maria T. Brown at 315-443-4685. If you have any questions about your rights as a research participant, you have questions, concerns, or complaints that you wish to address to someone other than the investigator, or if you cannot reach the investigators, contact the Syracuse University Institutional Review Board at 315-443-3013.

314 Lyman Hall, Syracuse, NY 13244   (315) 443 3685
mbrown08@syr.edu
asi.syr.edu

https://syracuseuniversity.qualtrics.com/SE/?SID=SV_0rlucU4S6ThIejz