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About Lesbians and Cancer

By Arthur Washington,2014-06-15 16:51
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About Lesbians and Cancerand,About,about

    Coming Out

    About Lesbians and Cancer

“There‟s actually a title that

    says, Lesbians and Cancer I

    could not believe it when I saw

    that those two words actually

    existed in the same sentence. I

    mean seriously, that‟s the first

    time I‟ve ever seen it, you

    know.”

~ Sarah (research participant)

    Research Report

    The Lesbians and Breast Cancer Project

    June 2004

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Table of Contents

Introduction

     Acknowledgements

     The evolution, focus and values of this report

    Report summary

     The lesbians who shared their stories

     Demographic information about the research participants

    Lesbians and Cancer: Coming Out Again

Support

     Lesbians with cancer „better off‟ in terms of support?

     Support in lesbian communities: the challenge of fear

     Isolation during cancer

Fallout from treatment

     Hair loss

     Loss of physical strength

     Breast loss

     Sexuality

Partnerships and Dating

     Feeling „less than a wanted person‟

     Vulnerability and inequality in partnerships

Families and finances

     Lesbian families

     Families of origin

     Finances

Cancer Care

     Lesbian positive care ?

Heterosexism in cancer care

     Pink and blue coloured glasses

    ; The possibility that she‟s a lesbian not considered

    ; Lesbian identity, needs, culture and social context not taken into account

    ; Lesbian identity and social context ignored and dismissed

    Lesbians targeted, and denied standard care

    Lesbian families and partnerships: outside the cancer care box

    Heterosexism and patient self-advocacy

    Cancer support services: no place for lesbians?

    The fallout from heterosexism

    Getting good care, and avoiding bad care

     Screening for homophobia

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     Being out, and not being out

     Looking for lesbian health professionals

     Taking partners and friends along

     More about being out, and not being out, in the cancer care system

     Alternative treatments

    „I never got a hiccup, but I never got much further either‟: What‟s missing in cancer care

    Ideas for Change: the version with quotes and additional ideas Ideas for Change: the short version

    Appendix A: How the Lesbians and Breast Cancer Project happened Appendix B: Lesbians and Breast Cancer Project selected resources

    ? The Ontario Breast Cancer Community Research Initiative, June 2004

Citing this report:

    Lesbians and Breast Cancer Project Team (2004). Coming Out About Lesbians

    and Cancer. Toronto: Ontario Breast Cancer Community Research Initiative.

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    Introduction

    ACKNOWLEDGEMENTS

    Many people and agencies created the Lesbians and Breast Cancer Project.

    ~ The project began

    because lesbians and community agencies believed in it & wanted it to happen.

    ~ The project became possible

    when the Canadian Breast Cancer Foundation Ontario Chapter funded it.

    ~ The project gathered momentum

    when people in the queer, women‟s health and cancer communities started spreading the word.

    ~ The project became meaningful

    when lesbians with breast and gynecological cancer spoke with us

    about their experiences with cancer and cancer care.

    Members of the Lesbians and Breast Cancer Project Team

    Maureen Aslin

    Jennifer Alexander

    Lisa Barnoff

    Pauline Bradbrook

    Mich?le Clarke

    Teri Henderson

    Pam Grassau

    Patti McGillicuddy

    Fran Odette

    Samantha Sarra

    Chris Sinding

    Anna Travers

    Danielle Vandezande

    Lesbians and Breast Cancer Project Partner Agencies

    The 519 Church Street Community Centre

    DAWN Ontario: DisAbled Women‟s Network Ontario

    The Coalition for Lesbian & Gay Rights in Ontario

    Gilda‟s Club

    The Metropolitan Community Church of Toronto

    The Ontario Breast Cancer Community Research Initiative

    The Rainbow Health Network

    Sherbourne Health Centre

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Sunnybrook & Women‟s College Health Sciences Centre –

    Social Work & Professional Advisory Committee

    Willow Breast Cancer Support & Resource Services

    Reviewers of the draft report

    (research participants & members of the Project Team)

    Danielle, Fran, Glenda, Jennifer, Kate, Laura, Lisa, Liz, Maureen, Mich?le, Pam, Patti, Pauline, Samantha, Teagan, Theresa

    Ontario Breast Cancer Community Research Initiative

    Staff researchers

    Lisa Barnoff, Research Facilitator

    Pamela Grassau, Research Facilitator

    Chris Sinding, Research Co-ordinator

    Transcribers

    Randy Baker

    Catherine Stevens

    This project is made possible with the generous support of the

    Canadian Breast Cancer Foundation, Ontario Chapter

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The evolution, focus and values of this report

    When we first set out create this project, we had some ideas about why it was important. We know, of course, that homophobia and heterosexism exist in health care. We know, too, that lesbians have come together in strong ways to respond to suffering and fight injustice. We wanted to know about how oppression, and the strengths in lesbian communities, affected lesbians‟ experiences with breast and gynecological cancer. We also wondered if lesbians‟ particular feelings about our bodies, or the fact that we partner with women, shape what it is like to have a „women‟s cancer.‟

    It wasn‟t until we were almost at the end of the project that we really understood why it was so important.

    In an early interview for this research, we asked Maureen what she thought might be unique or particular about being a lesbian who has had breast cancer. This was part of her answer:

    In my case 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 that I haven‟t thought of, or have gone, „oh, that‟s happened to me too but I didn‟t realize it was because I was a lesbian.‟ It might be quite revealing to discuss this issue with other women who

    identify as lesbian.

    Because lesbians with cancer in Ontario have not yet had a chance to come together to talk, ideas and language for saying „what‟s lesbian‟ about one‟s own cancer experiences are not yet easily available.

    We learned in this research about the unnecessary isolation and struggle this can create for lesbians with cancer. It also creates a challenge for researchers.

A few of the research participants who read an early version of this report felt that „the lesbian

    part‟ was not strong enough. They felt that the report did not make really obvious how being a lesbian mattered to a woman‟s cancer experience.

    As we talked about this as a group, we reflected on the fact that the research interview was the first time many women had spoken in a full way about their experiences as a lesbian with cancer and that this affected what they were able to say:

    I think that for a lot of us that interview was perhaps the first time we‟d ever been asked really to think of how it did affect us as a lesbian and when I read the transcript of my own interview I felt that I sort of ducked some of the issues. I missed a bit of the point, not because the interview wasn‟t conducted beautifully, satisfactorily, sympathetically, but the more I think about this whole issue, the

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    more I realize yes I am a lesbian and that was never addressed at the time. And I could probably talk more about that now than I did when I was interviewed… [Liz]

    [The interview ] was the first time I got lesbian and breast cancer in the first sentence. So that was just an emotional interview. And as I sit back and look at this process and what the project means to lesbians, I‟d like to be interviewed again, because I got the emotion out and I got my story out, and now what I need to talk about is being a lesbian with breast cancer. [Sarah]

    Another woman, Teagan, said that reading other women‟s quotes, and having some time to reflect, changed how she understood her experience and what she wanted from the Research Report. Now she sees more aspects of her cancer experience being connected to being a lesbian. ”The lesbian voice [in the Research Report] needs to be louder”, she said.

    So we made the lesbian voice louder. And we did this not just because we understand better why the interviews unfolded as they did, but also because what happened in the interviews, and what didn‟t happen, is part of a bigger picture where lesbians‟ experiences with cancer are rarely named, welcomed, or given space. In the bigger picture, systems and individuals, working with a heterosexual „default setting‟ (assuming everyone is heterosexual) render lesbians invisible, or create a situation where lesbians have to do the work of coming out, explaining their needs (again), and, sometimes, asserting their right to equal care. As became very clear in our research, this kind of work, demanding at the best of times, can be especially taxing when you have cancer.

So in this report, we affirm the value of doing all we can to make „the lesbian part‟ of lesbians‟

    experiences with cancer visible.

    And yet… One of the consequences of focusing intently on „what‟s lesbian‟ about lesbians‟ cancer experiences is that lesbians for whom „lesbian‟ is not a particular focus in terms of

    identity and social life tend to be less well represented.

    As well, highlighting aspects of the cancer experience linked to lesbian identity means that certain other aspects of having cancer things that might in fact be very important to an

    individual lesbian‟s experience – receive less attention. So, for instance, one woman we

    interviewed said that many people focus on hair loss as the most difficult thing about chemotherapy:

They just don‟t know about all the other stuff, mouth sores, you know ... all the

    other stuff that comes with it.

Interviewer: Hm. Like they’re missing out on the main part of the story there.

Right, and all the suffering that goes on. [Theresa]

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    In this report, we do overlook some of the suffering that goes on, and we miss some of the joys that women have found after cancer, the positive life changes they have made. Yet we trust it is clear from what we have just said, why we have made the choices we have to bring „what‟s lesbian‟ about lesbians‟ cancer experiences to the foreground.

    While the central focus of this study was lesbians’ experiences with breast cancer, the Project Team decided early on that lesbians with gynecological cancers probably faced similar issues. Both for this reason and to increase the number of potential study participants, we promoted the study to lesbians with ‘women’s cancers’ – lesbians with either breast or gynecological

    cancers.

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Report Summary

    The Lesbians and Breast Cancer Project was a community-based participatory study conducted in Ontario, Canada in 2003. We interviewed twenty-six lesbians diagnosed with a „woman‟s

    cancer‟ (twenty-two with breast cancer, three with gynecological cancer, one with both) about their experiences of treatment, cancer care, and support, and their feelings and ideas about changes in identity, body, sexuality and relationships.

    In this report we focus directly on „what‟s lesbian‟ about lesbians having breast and gynecological cancer. The reason for this is simple: we haven‟t found this knowledge

    anywhere else. We read about „the experience of breast cancer‟ in books, watch it in videos, hear about it in support groups… yet lesbian cancer realities have, with rare exceptions, gone unnamed.

COMING OUT AGAIN

    For lesbians, being public about cancer has parallels with coming out as a lesbian. Cancer and lesbian identity have historically evoked shame, and we share a long tradition of hiding both. Often neither identity is immediately obvious to others, and so lesbians, and all women with cancer, face ongoing choices about „coming out.‟ Being public about having cancer, and about being a lesbian, is still a risk.

    Because of its echoes with coming out as a lesbian, the social consequences of „coming out about cancer‟ may be especially complicated and painful for lesbians with cancer. At the same

    time, lesbians have some familiarity with the feeling of being „other‟, and as communities we have developed strategies for responding to marginalization and loss. We can see from this research how these strategies can support lesbians with cancer.

    As well, it seems that the AIDS movement serves as a kind of touchstone for lesbians with cancer, an example of what‟s possible in terms of support, awareness and activism. That example is one we draw from in a positive way, and at the same time it shows us how much more we could have for lesbians with cancer.

SUPPORT AND ISOLATION

    Participants in the Lesbians and Breast Cancer Project frequently spoke of receiving strong support from partners and friends. Support in lesbian community can be emotionally engaged, competent and well organized immensely sustaining for individual lesbians and a kind of

    community achievement.

Feeling strongly supported was connected with participants‟ sense that women, and particularly

    lesbians, felt like „it could be me.‟ The fact that participant‟s partners are women and could be diagnosed with a woman‟s cancer was a source of understanding and connection. The „could be me‟ feeling also seemed to draw lesbians into support teams for women they did not know

    especially well.

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    Yet „could be me‟ worked against lesbians as well. As some research participants‟ experiences revealed, ideals of support in lesbian community do not always unfold in real life. Participants said that lesbians, witnessing another lesbian diagnosed with breast or gynecological cancer, sometimes identify with her in ways that make support awkward or impossible.

    In a more general way, the fear generated by cancer, and the lack of dialogue about the illness in lesbian communities, contributes to the isolation of lesbians with cancer. Our „phobia‟ about cancer perhaps especially strong in relation to women‟s cancers – affects the support lesbian

    communities can offer.

    Lesbians with breast cancer may be further isolated if they live in areas where homophobia goes relatively unchallenged, or where lesbian community is scarce or lacks diversity to begin with. Not having enough money for instance, to pay for self-care resources can isolate

    lesbians who are poor from lesbians with more resources. Experiences that are „out of synch‟ (because of age, for instance) are also linked with isolation.

FALLOUT FROM TREATMENT: HAIR LOSS, LOSS OF PHYSICAL STRENGTH,

    BREAST LOSS, SEXUALITY

    It became clear from this research that ideas society has about lesbians ideas about our

    appearance, bodies, sexuality and ideas lesbians have about ourselves, affect how lesbians

    experience the fallout from cancer treatment.

    Queer culture and community lends hair loss a wider range of meanings for women than does the dominant culture, and this can be a source of strength for some lesbians with cancer. Yet while lesbian identity might allow some women to buffer the difficult impact of hair loss, or even to find power in it, hair loss can also disrupt identity and be traumatic and disempowering for lesbians.

    Risking a stereotype, we can suggest that women‟s physical strength and competence are especially valued in lesbian culture (in contrast with norms of femininity valued in the dominant culture). Especially outside urban centres, sports teams are a rare safe public space for lesbians. A cancer diagnosis and the effects of treatment can challenge a lesbian‟s valued identity around physical strength and fitness; it can also disrupt her connection with lesbian community.

    The beliefs we hold in lesbian community about breasts are contradictory, and linked with our relationship to societal ideas about what woman should look like. We heard the belief that lesbians with cancer are less affected by breast loss than heterosexual women; we also heard that breast loss is especially difficult to lesbians because breasts matter more to us than they do to heterosexual women. Our beliefs about breasts sometimes suggest there is one „right way‟

    for every lesbian with cancer to deal with breast loss.

    Woman‟s cancers can have unique affects on lesbian sexuality. In very basic ways, women‟s bodies mirror one another; when two women are being sexual after one has had a woman‟s

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