Cancer Screening for the Trans and Gender Diverse Community
Invisibility, Emerging Visibility, and the Need for Change
Cancer is the leading cause of death in Australia – half of men and a third of women will have had this disease by the time they are 85 . Trans and gender diverse people are largely invisible in cancer literature, research, and registries . Indeed, so much cancer literature presumes people have gender normative experiences; talks about body parts in highly gendered ways; and overlooks the issues related to gender-affirming treatments or other issues specifically relevant to trans and gender diverse people. Gender-affirming medical and/or surgical technologies can influence cancer risk and screening . A few researchers have begun to argue that as more people present at younger ages for gender-affirming hormone treatment there may be an increase in cancer over time [3-5]. However, as there have been few studies that address the affects that medical and/or surgical transition have on cancer, the extent to which trans and gender diverse people are at risk of developing this disease remains unknown . There is a lack of adequate evidence and general discussion on this issue, and as a result there are no policies, clinical guidelines, or resources in Australia dedicated to cancer care in the trans and gender diverse community. With the long-standing invisibility of gender diversity evolving into an emerging visibility, there is a need for change within cancer services.
The use of umbrella terms around gender identity can result in the mistaken belief that trans and gender diverse people are an homogenous group, but this is far from the reality. Individuals express their gender in many ways, and one trans man may have significantly different life experiences when compared with another trans man, brotherboy, a trans woman, sistergirl, genderqueer person, or any other gender nonconforming person . The word ‘cancer’ may also seem to suggest one phenomena; however hundreds of different malignant tumours can originate from vastly different cells in the human body – producing distinct and unique types . In thinking about cancer care for Australia’s trans and gender diverse community, we must therefore throw away over-generalisations that simply do not represent the diversity of human experience. We must instead see this topic as complex, requiring a broader research base which will help healthcare professionals to provide appropriate, sensitive, and timely services, and inform outreach to community members to improve their knowledge and access.
Why Is This Issue Urgent?
The Australian trans and gender diverse community’s health and wellbeing are adversely affected by relatively high rates of homelessness, familial rejection, social isolation, alcohol or substance abuse, low socioeconomic status, anxiety, depression, self-harm, and suicide risk [5, 9-13]. Broadly, these experiences are a result of stigma and discrimination, cisgenderism (the delegitimisation of genders and bodies that do not fit cultural norms of gender/sex), and the lack of access to gender-affirming treatments . Trans and gender diverse Australians have mixed experiences with our healthcare system, including experiencing inconsistency in services and an invisibility of gender diversity [13, 15]. Those who live rurally or remotely have less access to key services [16, 17], whilst many trans and gender diverse people report professionals showing persistent misconceptions and prejudices [12, 13, 18]. Many individuals therefore delay or avoid accessing services or disclosing their gender identity . This is particularly concerning in terms of cancer, because early detection is the best defence against serious illness.
On top of all of this, cancer journeys themselves can be truly overwhelming, and if you already experience many disparities in your health care and social support, it may be even more complicated. People commonly respond to diagnoses with intense feelings of distress, isolation and vulnerability, with their mortality being called into question . Diagnostic testing is an uncertain and anxious time, and rapidly progresses to the treatment phase . Therapies commonly take a sledge-hammer approach, leading to side effects from nausea and vomiting to bone marrow suppression . Long-term side effects may persist for years after treatment ends, and periodic check-ups to see whether or not disease has recurred can be stressful . Approximately a third of cancer patients die within five years of diagnosis, and end of life care is a fundamental aspect of oncology care . Patients are immersed in the medical world, forced to learn the jargon, navigate specialist services, and interact with many healthcare workers .
‘Gendered’ or ‘sexed’ cancers and screening procedures may pose particular problems for those who find certain body parts distressing or feel disassociated from them . Trans and gender diverse people may use their own terms for such organs, and medical environments and professionals may not be aware of, or respect these. Added to this is the fact that mainstream services may make trans and gender diverse people and their loved ones feel alienated and unwelcome . Distress around these issues can lead to under-attendance to cancer care services . It is vital that these issues are addressed by the people working within this area so that the trans and gender diverse community can benefit from prevention and screening programs to the same degree that cisgender individuals do.
How Can We Overcome This?
The LGBTIQA+ community (inclusive of lesbian, gay, bisexual, transgender, intersex, queer, asexual, and allies) has a strong history of advocacy, and is capable of influencing impressive change. The concept of ‘patient-centred care’, which is a highly used term in medical services today, was directly influenced by the LGBTIQA+ community pushing for the rights and better treatment of people with HIV/AIDS since the 1980s . Incredible progress has been made in both the social and medical treatment of people with HIV/AIDS, and the LGBTIQA+ community’s passion, creativity, and activism played a major part in this. This community is capable of spirited mobilisation around an issue, with a unique understanding of the need for positivity, sensitivity, and vivacity. There is a critical need for research that examines the provision of oncology services to trans and gender diverse people – as currently these individuals are not receiving equitable cancer care [2, 25, 26]. Barriers and facilitators should be highlighted, along with the current experiences and needs of trans and gender diverse cancer patients. The findings of such studies need to be shared throughout oncology services, and within trans and gender diverse communities and networks, in order to improve health and enhance social justice. We should also identify and draw on a range of the strengths of Australian trans and gender diverse communities as they relate to healthcare. By building on these strengths, we may be able to supplement the gaps between all the pink and blue campaigns which so clearly provide wonderful supports and aid for cisgender and typically bodied females and males. In short, trans and gender diverse people deserve so much better care and consideration than they are getting.
Love Yourself, Screen Yourself
Beyond and whilst working on research and improvements to the Australian healthcare system, we need to encourage regular cancer screening for our trans and gender diverse friends, lovers, parents, siblings, extended family, mentors, and mentees – and (where relevant) one’s self. A basic awareness of the signs and symptoms associated with cancer is a good starting point; however, it is important to keep in mind that many of these may be related to more common and less serious health issues. Gender affirming treatment may even cause some of these symptoms. Such signs and symptoms include the following; lumps, bumps, irregularities, sores, or ulcers out of the ordinary; a cough that does not go away or with blood present; ongoing hoarseness; unexplained weight loss; moles that have changed in their appearance; a change in toilet habits that continues for an extended period (loose bowels, constipation, bleeding, discoloured faeces); problems/changes in urination; unusual changes in your chest/breast tissue; any unexpected bleeding from a frontal opening/vagina; and for individuals with ovaries, persistent pain or bloating in the abdomen . These symptoms may or may not indicate the presence of cancer, but it is important to discuss them with your doctor anyway. Organs which may be uncomfortable to think of as a part of your body can still develop cancer. It is important to pay attention to these organs, or ask a health professional, partner, or friend to look at them for you.
Cancer Screening for Chest/Breast Tissue
The current BreastScreen recommendation is that women between the ages of 50 and 74 have a mammogram (an x-ray of the breast) once every two years . Although BreastScreen’s recommendations are for women, if you identify with a different gender and have chest/breast tissue you should also follow these screening guidelines. If you have had a mastectomy (removal of chest/breast tissue), then as there is not enough tissue, an x-ray (mammogram) cannot be performed. Other imaging may be used such as ultrasound or magnetic resonance imaging (MRI), however, unless you are deemed high risk because of a family or personal history of cancer, it is unlikely that this is necessary. If you do not have a high risk of chest/breast cancer, visual inspection and touching your chest (including up to your armpits) to monitor for abnormalities regularly is advised [28-30]. Breast cancer screening in trans women is advised for those aged over 50, who have been on gender-affirming hormonal treatment for more than five years in the form of a mammogram (x-ray of the breast) every two years [28-32]. Breast implants may lower the sensitivity of mammograms, but they have not been linked to an increased risk of breast cancer.
Cancer Screening for Individuals with a Cervix
In Australia, cervical cancer rates have been drastically reduced due to an effective cervical screening program. In fact, one of the biggest risk factors now for developing cervical cancer is lack of attendance to screening services. It is highly important that if you have a cervix, and you have been sexually active in any way, that you have your cervix checked regularly .
Please note that the National Cervical Screening Program has changed as of the 1st of December, 2017. Cervical screening is now recommended for individuals with a cervix aged between 25 and 74 every five years. The previous recommendation for cervical screening (Pap smears) was once every two years for people with a cervix aged between 18 and 69. Now, the time between tests is lengthened from two years to five years. Although it is no longer a Pap smear, the test is still performed in a similar way. That is, the healthcare professional needs to take a sample from your cervix, and to do this they have to access your cervix through your frontal opening/vagina. If you find this kind of testing particularly distressing, there are ways it could be made less so:
- Remember that you can say ‘stop’ at any time.
- You could bring a partner or a friend for support.
- Try relaxation strategies (e.g. music, deep-breathing).
- Talk to your doctor about taking anti-anxiety medication beforehand.
- Tell your healthcare provider what you need them to do – for example to get it over and done with as quickly as possible or do it slowly.
- Discuss with your healthcare provider any problems you may have had in the past.
- Ask for a smaller speculum, more lubricant, or a numbing agent [33, 34].
International research has documented that trans men have a higher rate of ‘inadequate Pap smears’, and this may extend to other gender diverse individuals with a cervix. An ‘inadequate Pap smear’ may be due to a variety of factors, and means that the sample taken from the cervix is not able to be tested. It is important, if you have an inadequate test, to return for re-testing within the next few months .
Cancer Screening for Individuals with a Prostate
Prostate cancer screening does not have a nation-wide program implemented, and recommendations for prostate cancer screening in cisgender men vary. Prostate cancer is almost exclusively found in people aged over 50, and screening for people at average risk may occur between the ages of 50-69 in the form of a prostate-specific antigen (PSA) test. It is important that healthcare professionals are aware that for trans and gender diverse people on gender-affirming hormone treatment and/or after surgical removal of the gonads/testicles, the PSA level may be lowered. Alternatively, a digital rectal or frontal opening exam may be performed to feel if there are any irregularities . Please remember that most genital surgeries for trans women do not include removal of the prostate. If you have had this surgery, it is still important to pay attention to this body part.
Cancer Screening for Individuals with Ovaries
There is no routine screening for ovarian cancer because there is currently no test that is sensitive enough to be able to diagnose this disease at an early stage. Ovarian cancer has a high mortality rate when diagnosed at a later stage, so it is very important if you notice symptoms associated with ovarian cancer to see your doctor . For people who are concerned about their risk, paying attention to their bodies and having an awareness of the signs and symptoms of ovarian cancer is important. Signs and symptoms may include abdominal pain and bloating, and changes in bowel habits. For individuals who have a family history or genetic susceptibility to ovarian cancer, it may be advisable to have regular pelvic examinations and/or ultrasounds. Please discuss this with your GP or another healthcare provider.
The problems that are posed by the gendering of cancer services for trans and gender diverse people are wide-ranging. Issues exist in relation to discrimination; access to appropriate and sensitive services; lack of research, knowledge and awareness; and the unique needs of this community being unmet. These issues affect all areas of cancer care – risk, screening, diagnosis, treatment, survivorship, and end of life care. There is a critical need for research and health promotion in this complex area, as currently trans and gender diverse people are not receiving equitable cancer care.
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Lucille Kerr is a PhD student at La Trobe University, and a Specialist Cancer Nurse. Her current research with Dr Tiffany Jones through ARCSHS is on cancer and the trans and gender diverse community. Data collection will begin in early 2018, and involves surveys to document the patterns of screening in this community as well as the ways the community’s strengths can best be utilised in this healthcare area, and one-on-one interviews to explore the experiences of trans and gender diverse individuals who have experienced cancer. Email: L.Kerr@latrobe.edu.au