Information for Providers
Please note that we have used breast cancer for clarity in the text below, but that patients may prefer the more gender-inclusive term “chest cancer.” In the patient tool, we use “chest cancer” after explaining that this does not include other cancers that occur within the chest, like lung cancer.
CHESTcare Tool
What does the CHESTcare patient tool do?
The patient risk tool asks the transgender or gender-diverse person some basic history and intention questions about both their gender-affirming medical care as well as basic personal and family history questions about cancer and cancer-related germline genetic testing. These basic questions assess:
1) History and/or intentions about top surgery
2) History and/or intentions regarding testosterone usage
3) A high level family and/or personal history of cancers known to be associated with hereditary breast cancer risk genes
4) History of germline genetic testing for hereditary cancer risk-associated genetic variants. If the patient has a history of genetic testing, it asks questions about their results.
Then, the tool provides the patient with personalized education about their risk related to the specific combination of their responses. This means that there are many possible personalized responses (over 70 unique variations).
The tool is designed to empower patients with knowledge to have informed risk discussions with their providers to make their own personal, informed choices.
What is the patient risk tool NOT designed to do?
The patient risk tool does not:
1) Conduct a detailed personal or family history-related cancer risk assessment
2) Determine a patient’s absolute or relative risk for breast cancer
3) Replace risk assessment in primary care
4) Replace genetic counseling
5) Replace genetic testing
6) Suggest that a person at a potentially high risk of cancer be denied gender-affirming care until genetics risk is further assessed
7) Suggest that a person with a positive genetic test be denied gender-affirming care
Cancer Risk-Related Information
Breast Screening
All average risk patients (assigned female at birth) with intact breasts, regardless of testosterone usage, should undergo annual mammogram starting at age 40 (NCCN). Recommendations for patients who have undergone gender-affirming top surgery are emerging, but are not yet consistent across recommending entities. Individuals with a known familial or genetic risk require earlier and more frequent surveillance.
Top Surgery and Cancer Risk
Unlike patients who receive a risk-reducing mastectomy to prevent cancer, patients who have top surgery (gender-affirming mastectomy) retain fibroglandular tissue, which results in residual breast cancer risk.
Exogenous Testosterone and Cancer Risk
Current studies provide conflicting details on the impact of exogenous testosterone on breast cancer risk in people assigned female at birth. It is likely that many factors influence the impact of testosterone on risk. However, strong data indicate that testosterone results in histological changes. These changes may impact how testosterone interacts with breast tissue both before and after top surgery.
Genetics and Risk
While most breast cancer is sporadic, about 10% of cases are found to have a genetic cause. Genetic counselors often order panels of 80+ genes to help patients understand their hereditary cancer risk. Determining whether someone has a genetic predisposition allows patients to receive personalized cancer screenings and care and explore all of their options for chest surgery.