Queer Women Breast Cancer Survivors & Reconstruction Decisions

Among American women, breast cancer is the most commonly diagnosed cancer other than skin cancer, and breast cancer death rates in women are higher than those for any cancer other than lung cancer.  In 2018, an estimated 266,120 new cases of invasive breast cancer are expected to be diagnosed in women in the U.S., along with 63,960 new cases of non-invasive (in situ) breast cancer (breastcancer.org 2018).  It is not clear what percentage of these cancers will affect lesbians, transgender people or bisexual women since national cancer registries and medical practices are not consistently gathering data on the sexual orientation and gender identity of cancer patients.  But we know that one of eight women will develop breast cancer at some point in their lives (breastcancer.org), and studies have indicated that sexual minority women (SMW) have higher risk factors for cancer due to their higher rates of smoking, drinking, obesity and high-risk body mass index (BMI), and their lower rates of pregnancy and childbirth, which are protective against breast cancer (Mattingly 2016).  Higher rates of obesity, smoking and drinking also affect the potential for long-term recovery by SMW breast cancer survivors.

Surgery – either lumpectomy or mastectomy – is usually the first treatment approach for breast cancer. When a mastectomy is necessary, breast cancer survivors are presented with numerous decisions, including what type of surgery is best for them and whether or not to have breast reconstruction.

Most studies of women who have had breast reconstruction after mastectomy do not indicate whether any of the subjects are lesbians or bisexuals.  But several studies since 2007 have focused specifically on SMW breast cancer survivors and questions regarding reconstruction.

Studies that appear to describe the breast cancer and reconstruction experience of primarily heterosexual women indicate that the existence of breasts is intrinsic to survivors’ feelings about body image, sexual attractiveness, femininity, and even to basic identity.  Some women equate losing their breasts with “losing myself” (Fallbjork 2012).

But studies focused on lesbians and, in some cases bisexual women, tell a different story (Hall 1997) – that the loss of breasts due to mastectomy without reconstruction does not seriously threaten their body image, sense of self or attractiveness. A 2007 study of sexual minority women reported that those who chose reconstruction had difficulties and regrets, and those without reconstruction adjusted well over time; the study also found that feelings of attachment to breasts appear even less severe in sexual minority women whose original breast size was smaller (Boehmer 2007). Among postings by participants in a lesbian-specific online support forum for breast cancer survivors, rejection of breast reconstruction was pervasive, and five major themes were expressed in their remarks: 1) they reject the idea of being defined by their body image; 2) they emphasize sensation over appearance; 3) they believe that being without breasts is protective with respect to future cancer risk; 4) they perceive their social context within the lesbian community as supportive of rejecting reconstruction; 5) but they feel pressured by social norms to undergo reconstructive surgery. (Wandrey 2015). In one of the most recent studies of SMW breast cancer survivors who rejected breast reconstruction, one subject stated, “Now I have a body that fits me,” suggesting that for some women, their breasts were not consistent with the gender presentation they preferred (Brown 2018). This study indicated that a trend of SMW breast cancer survivors rejecting reconstruction is so strong, and that being without breasts was a source of pride, that they refer to themselves as “flattoppers.”

Without regard to sexual orientation or gender identity, several studies show that breast cancer survivors who have had surgery, with or without reconstruction, express dissatisfaction with the amount of information, cautions, and support they received from their health care providers about the short and long-term impact of breast surgery and/or reconstruction.  This is particularly true in a study of younger breast cancer survivors whose poignant and blunt remarks make abundantly clear all of the impacts of being diagnosed and treated for breast cancer, as well as all the shortcomings of care and support within the medical system (Ruddy 2013).

Some studies conclude that SMW are more dissatisfied with their breast cancer care than heterosexual women, and that they suffer greater distress during and after treatment (Matthews 2002) (Jabson 2014).  There is speculation that this is due to the heterosexist bias that they encounter within the healthcare system, the failure of their providers to be aware of health concerns specific to sexual minorities, and that their special support needs as sexual minorities are neglected.  Another study found that SMW survivors think that disclosing sexual orientation and gender identity (SOGI) affected their care (Brown 2018).

At the same time, a study that compared the experience of lesbians to heterosexual breast cancer survivors found that lesbians reported less thought avoidance, lower levels of sexual concern, less concern about their appearance, and less disruption in sexual activity, but also substantially lower perceptions of benefit from having had cancer. Lesbians reported less social connection to family, but no group difference emerged in connection to friends. Lesbians reported less denial coping, and more use of support from friends, more venting, and more positive reframing (Arena 2007).

The involvement of a female partner in decision-making, support and caregiving for SMW appears to have a significant impact on both choices and outcomes (White 2012).  A study found that SMW reported less fear of cancer recurrence (FOR) than heterosexual women, and that this was predicted by their caregivers’ FOR, suggesting that caregiver interventions may help survivors’ well-being and should be integrated into care (Boehmer 2016).

SMW who wish to consider breast reconstruction after mastectomy should press their oncologists and other health care providers for detailed comparative information on their options.  Recent research explores the differences in complications and outcomes due to the numerous ways that breast reconstruction can be conducted.  A study that examined complications at one year post-surgery found that complications were lower for expander/implant reconstructions than for all others studied, including pedicle transverse rectus abdominis musculocutaneous (PTRAM), free TRAM (FTRAM), and deep inferior epigastric perforator (DIEP) techniques.  Significantly higher risks were associated with older age, higher body mass index, reconstruction immediately after mastectomy, bilateral procedures, and radiation.  For major complication, risks were significantly greater for PTRAM and DIEP than expander/implant procedures. (Wilkins 2018).

Another examination of patients at two years after postmastectomy breast reconstruction has found that patients who underwent autologous reconstruction (i.e. “flap” reconstruction using tissue from elsewhere in your body) had greater satisfaction with their breasts, psychosocial well-being and sexual well-being at two years compared with patients who underwent implant reconstruction (Santosa 2018).  However, neither of these studies examined the specific experiences of lesbian or bisexual women.

More information about the various types of breast reconstruction can be found at https://www.breastcancer.org/treatment/surgery/reconstruction/types.

The site https://community.breastcancer.org/  is a place where women can seek out the opinions and experiences of others who have been diagnosed, treated for, and survived breast cancer, including sexual minority women at https://community.breastcancer.org/forum/76.

Recommendations

 

Studies that focus on the postmastectomy experience of sexual minority women have many recommendations for improvements in care, support and research that take SMW needs into account:

  • Because breast cancer survivors are at risk for multiple severe and persistent symptoms, assessing such symptoms is an important aspect of survivorship care. If health care providers learn about differences in impairment and symptoms by sexual orientation, this knowledge will help them provide high quality care to breast cancer survivors and may enhance cancer survivorship. Awareness about vulnerabilities due to partner status and about the sexual minority–specific issues that contribute to adjustment is important for medical and mental health professionals who have lesbian and bisexual breast cancer survivors as patients (Boehmer 2013).
  • Enhancement of resilience could be an aim of psychological intervention for SMW breast cancer survivors (Kamen 2017).
  • Lifestyle interventions (focused on reducing smoking, drinking, obesity) to reduce the risk of poor outcomes after cancer should be implemented in SMW breast cancer survivors, as well as in sexual minority women without cancer (Boehmer 2015).
  • Caregivers of breast cancer survivors are central for survivors’ well-being and should be integrated into the care process (Boehmer 2016).
  • There is a need for research on the physical and emotional effects of breast cancer treatment on SGM breast cancer survivors, as well as further exploration of the social support needs and experiences of SGM breast cancer patients and their partners. (Brown 2018 in Supportive Care in Cancer)
  • Health care providers would benefit from training about sexual orientation and gender identity as they related to breast cancer treatment choices. (Brown 2018 in Women Health)
  • Medical and mental health professionals who have lesbian and bisexual breast cancer survivors as patients need greater awareness about vulnerabilities due to partner status and about the sexual minority-specific issues that contribute to adjustment to treatment and life thereafter (Boehmer 2013).
  • Health care provider communication with patients should be evaluated for heterosexist biases, including the implication that breast reconstruction should be a part of a normal course of treatment. The range of treatment and construction options, including the decision not to reconstruct, should be presented in a nonbiased, neutral way (Wandry 2015).
  • To address misconceptions and knowledge gaps about LGBT health issues among oncology providers, cultural competency training about this patient population may improve care and impress upon providers the need to inquire about their patients’ sexual orientation and gender identity. (Shetty 2016)

National LGBT Cancer Network: https://cancer-network.org/

https://www.breastcancer.org/treatment/surgery/reconstruction/types

https://community.breastcancer.org/forum/76

Cancer’s Margins: Canada’s LGBT2Q Arts-and Community-Based Project features videos of sexual minority women describing their experience with breast cancer and other cancers:

https://www.lgbtcancer.ca/experiences-of-breast-cancer/

 

Young Survival Coalition

https://www.youngsurvival.org/blog/survivor-stories/tag/body_image

https://www.youngsurvival.org/directory/lgbtq/national-lgbt-cancer-project

 

The National LGBT Cancer Project –  Lesbian, Gay, Bisexual and Transgender cancer survivor support and advocacy non-profit organization. Their online support group community, Out With Cancer, is committed to improving the health of LGBT cancer survivors with peer to peer support, patient navigation, education and advocacy.

https://lgbtcancer.org/about/

https://cancer-network.org/

REFERENCES

July 2018, https://www.breastcancer.org/symptoms/understand_bc/statistics

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Fallbjork, U., Salander, P., Rasmussen, B.H. (2012) From “no big deal” to “losing oneself”: different meanings of mastectomy.Cancer Nursing. 35(5), E41-48.

doi: 10.1097/NCC.0b013e31823528fb.

 

Hall, L. 1997) Re-Figuring Marked Bodies on the Borders: Breast Cancer and “Femininity.”Journal of Gay, Lesbian, and Bisexual Identity. 2(22), 101-121.

 

Boehmer, U., Linde, R., Freund, K.M. (2007) Breast reconstruction following mastectomy for breast cancer: the decisions of sexual minority women. Plastic Reconstructive Surgery. 119(2), 464-472.

 

Wandrey, R., Qualls, W., Mosack, K. (2016) Rejection of Breast Reconstruction Among Lesbian Breast Cancer Patients. LGBT Health.3(1).

http://doi.org/10.1089/lgbt.2015.0091

 

Brown, M.T., McElroy, J.A. (2018) Sexual and gender minority breast cancer patients choosing bilateral mastectomy without reconstruction: “I now have a body that fits me”. Women Health. 58(4), 403-418. doi: 10.1080/03630242.2017.1310169

 

Ruddy, K., Greaney, M., Sprunck-Harrild, K., Meyer, M., Emmons, K., Partridge, A. (2013) Young Women with Breast Cancer: A Focus Group Study of Unmet Needs. Journal of Adolescent and Young Adult Oncology.  2(4), 153–160.

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Wilkins, E.G.,  Hamill, J.B. ,Kim, H.M., Kim, J.Y., Greco, R.J., Qi, J., Pusic, A. (2018) Complications in Postmastectomy Breast Reconstruction One-year Outcomes of the Mastectomy Reconstruction Outcomes Consortium (MROC) Study. Annals of Surgery. 267(1), 164–170.

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