April 2015 Ask the Expert: Getting Good Breast Cancer Care as a Lesbian, Gay, Bisexual or Trans Person
Everyone deserves quality health care. But as an LGBT person with breast cancer, you may feel that there aren’t enough resources out there just for you. You may feel unsure about coming out to your providers or talking about the disease with a partner.
This April, Living Beyond Breast Cancer expert Katherine Campbell, PhD, LCSW answered your questions about whether and how to come out to your care team; your breast cancer risk as an LGBT person; and fertility, dating with a history of breast cancer, and talking to a partner about breast cancer.
Remember: we cannot provide diagnoses, medical consultations or specific treatment recommendations. This service is designed for educational and informational purposes only. The information is general in nature. For specific healthcare questions or concerns, consult your healthcare provider because treatment varies with individual circumstances. The content is not intended in any way to substitute for professional counseling or medical advice.
Dr. Campbell: The short answer is yes. The long answer is it's complicated. We do know that LBT women are at higher risk due to behavioral aspects including higher rates of smoking, higher rates of drinking and higher rates of obesity. All of these contribute to a higher rate of cancer. In addition we know that LBT women are more likely to be diagnosed at a later stage, which may be due to a greater risk of not having insurance access.
Dr. Campbell: Open communication with your provider is critical. There could be multiple reasons for a lack of conversation regarding fertility, including the doctor's lack of knowledge or comfort with the topic. The most important thing is that you feel comfortable having the conversation. If your doctor is not comfortable with your conversation or if you feel like you're not getting all the information, there are a few options you can take for personal advocacy, including
Dr. Campbell: Open communication is one of the most important aspects of a patient/doctor relationship. When safe, sharing can provide more information and support. If you are concerned about whether it is safe to disclose, you can gather more information first. Ask if the doctor is part of a practice with a patient non-discrimination policy that includes gender identity and sexual orientation and notice if there is literature in the office that is affirming.
Dr. Campbell: The recent study in the journal LGBT Health, which looks at U.S. veterans' medical records, indicates that overall, transgender people are not more likely to develop breast cancer than people who are not trans. That being said, the research for long-term cancer risk for transgender individuals is still limited. The most important thing for someone who is transgender to know is that their health is important. The specific care you need varies depending on a variety of factors including your health history, family history, self-care behaviors (such as weight and use of alcohol or tobacco). GLMA: Health Professionals Advancing LGBT Equality has an article called "Ten Things Transgender Persons Should discuss with Their Healthcare Care Provider." It is as an excellent resource to help you take charge of your health.
Dr. Campbell: I am so sorry to hear about your experience. There are a few ways that you can address your concerns depending on your comfort level and your access to resources. Here are some suggestions:
- Have a conversation with your doctor, letting him or her know your concerns. Being your own advocate can be difficult, especially when you feel vulnerable. But this is your care and you are in control. Talk about what is bothering you and be clear about your wishes and expectations. It may help to write down what you want to say beforehand. You may also ask your partner to help with this conversation.
- If you don't feel safe talking to your doctor alone, you can ask an oncology social worker or an oncology nurse, if they are available to you, to help start the conversation.
- If you feel you are at risk of losing your care if you bring up this concern, you may want to consider getting a second opinion. Second opinions are not just for your diagnosis but also a part of the patient/doctor relationship. It is critical that you have a relationship with your doctor where you can talk about issues that are vital to you.
Dr. Campbell: There are number of ways to protect yourself and ensure your wishes are met. It is important for you to know that your wishes will be honored best if you communicate them both verbally and in writing. Having a conversation with your healthcare providers about your wishes is critical to helping them help you. But having the conversation is not enough. You must be sure to have written documentation as well. Documentation varies by location, but the minimum form you will need to complete is a Health Care Surrogate form. This can be obtained via many office supply stores, online (look here for information specific to your state), or through legal counsel. In addition, many healthcare providers can give you forms that their facility uses.