For Any Cancer Diagnosis
- Q.
I'm a patient navigator and have had a few requests from patients and their families for LGBT resources (groups and information mainly). Any recommendations?
A.Although everyone’s experience with cancer is unique, we do know that the LGBT cancer experience can present many challenges, just a few of which include increased cancer risk, lack of social supports, and impacted communication and comfort with health care providers. The cancer experience, in addition to the stigma around sexuality and/or gender for an LGBT person navigating the medical system, can have an negative effect on a person’s health, both physically and emotionally.
As a patient navigator, you have the opportunity to humanize a setting which often feels dehumanizing for patients, particularly those that identify as LGBT. By making yourself aware of the resources that exist and learning to ask questions that show your sensitivity, you can make a big difference. Access to resources that are LGBT-focused and/or friendly often depends upon the area you live in. While many larger, more metropolitan areas have LGBT community centers and/or services, smaller communities often lack LGBT-specific resources, which can leave LGBT people feeling isolated or marginalized. However, there are a number of national organizations that provide a multitude of services for LGBT individuals with cancer and their loved ones, as well as their health care providers. These organizations do incredible work to address existing disparities through their research, advocacy, education, outreach and direct support services.
A great place to start is by reading LGBT Patient-Centered Outcomes: Cancer Survivors Teach Us How To Improve Care For All, a report published by the National LGBT Cancer Network. The National LGBT Cancer Network works to educate, train and advocate for LGBT cancer survivors. What’s fantastic about this report is the way it uses language, including quotes and stories, from actual LGBT cancer survivors, which gives you powerful insight into what LGBT cancer survivors find meaningful and relevant in their work with you, your team and your agency.
Secondly, the public policy advocacy organization, GLMA: Health Professionals Advancing LGBT Equality (formerly the Gay & Lesbian Medical Association), has many resources for professionals as well as patients, including Top Ten Issues to Discuss with Your Heath Care Provider for Lesbians, Gay Men, Bisexuals, and Transgender People. They also have a wealth of information on trans health resources.
For LGBT seniors, SAGE (Services and Advocacy for Gay, Lesbian, Bisexual and Transgendered Elderly is an important national resource. SAGE can direct callers to their local gay support systems closest to them.
And last, but certainly not least, here at CancerCare we have a number of support services for LGBT patients, survivors, and caregivers. CancerCare has a fact sheet “Coping with Cancer as an LGBT Person” that can be ordered by calling the our Hopeline at 800-813-4673 or ordered online. We offer free, short-term individual counseling over the phone and in person. We also have a face-to-face support group running in our New York City office:
- Gay and Bisexual Men With Cancer Support Group, in collaboration with SAGE
In addition to checking out the above resources, please feel free to call our Hopeline at 800-813-HOPE (4673) to speak with an oncology social worker about helping your LGBT patients and caregivers locate additional support.
- Q.
I work in a hospital and would like to better understand the challenges LGBTQ+ people face in medical settings. I'd like to educate the team I work with.
A.It is important to be mindful of the fact that the LGBTQ+ community has historically faced a great deal of violence and discrimination. Although we have made massive strides toward greater equality, stigma and biases do still exist. A 2010 study by Lambda Legal revealed that 56% of LGBTQ+ respondents had experienced discrimination in healthcare, including being refused treatment and/or physical touch, as well as being blamed for their health status. For this reason, be mindful of the fact that an LGBTQ+ identified client may be feeling fear or anxiety during your encounters with them.
Healthcare providers may assume their acceptance of LGBTQ+ patients is a given, or that sexual orientation and gender identity is not relevant to the quality of their care. However, implementing simple changes such as visibly displaying a rainbow flag or utilizing more inclusive language at intake can go a long way in soothing underlying concerns and foster a greater sense of safety. Clearly indicating that your practice is an accepting environment signals to both LGBTQ+ patients and staff that it is okay for them to be “out” without fear of intolerance. This has been linked to improved health outcomes and overall wellness across the continuum of care. The National LGBT Cancer Network and the HRC’s annual Healthcare Equality Index both outline best practices and recognition criteria for LGBTQ+ affirming healthcare services.
Much of the potential harm or misunderstanding LGBTQ+ folks experience in medical settings is likely inadvertent and usually results from a lack of familiarity or fluency with LGBTQ+ culture. Your desire to educate yourself and your team is a vital first step in creating a more inclusive environment. The National LGBT Cancer Network offers excellent LGBTQ+ Cultural Competency trainings, which can make a huge and lasting impact in both the mental and physical health outcomes of your LGBTQ+ patients.
For Breast Cancer
- Q.
I am a lesbian and my family is not accepting of this. I recently have been diagnosed with breast cancer, and I'm really feeling the loss of having family for support. I'm not sure if it would make a difference to speak with them - should I tell my family about my diagnosis?
A.You took a very courageous step by disclosing your sexual identity to your family, and their rejection can feel devastating especially during times of need. It is the most natural desire to want to be accepted by the people we love, and while some homophobic reactions may be intense, there are many shades of gray. In extreme cases, disclosure sometimes results in permanently severed relationships, but the coming out experience and the reactions of loved ones can be a process that evolves over time. It is understandable that you are concerned about communicating with your family given the risk of further rejection, but you may find that family members who have difficulty accepting your lesbian identity would want to be part of your life and be able to support you given the chance.
It is important that you seek out support from family, friends, co-workers, and healthcare professionals. CancerCare’s professional oncology social workers are here to help by linking you to practical support, education, support groups, or referrals. In addition to getting support around your cancer diagnosis, you can also receive counseling about your relationships with your family that can guide you toward the best course of action for you.
Learn more about our breast cancer services. You might also contact The National LGBT Cancer Network. Cultivating a network of support and sharing your experiences with others can be a liberating and self-affirming experience and I encourage you to explore these resources.