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The 2001 documentary film Southern Comfort chronicles the final year of Robert Eads’ life. A transgender man living in Georgia, USA, Eads died of ovarian cancer because over 24 doctors refused to treat him out of fear that by doing so, they would damage their medical reputations.
No doubt, the British healthcare system today is not comparable to the system that Eads faced in Georgia during the late Nineties, but Southern Comfort remains a culturally relevant point in thinking about the treatment and perception of trans men with ovarian cancer in the UK and the barriers that they face.
”Most campaigning messaging for ovarian cancer, particularly in the UK, is targeted at cis gender women. This messaging and public health is not inclusive [for trans men with ovarian cancer],” says Victoria Clare, CEO of Ovacome; the UK’s ovarian cancer charity.
Ovarian cancer is far less common than other types of cancer. Only 7,500 people are diagnosed with ovarian cancer each year in the UK, a relatively low figure compared to the 55,000 diagnosed with breast cancer. More commonly diagnosed in the over-55s, there are over 80 kinds of ovarian cancer, yet high-grade serious ovarian cancer – ovarian carcinomas (cancers that start in cells that make up the skin or tissue lining of an organ) that are classified as Grade 3 – account for approximately 84 per cent of ovarian cancer diagnoses.
There are approximately 200,000-500,000 trans people within the UK, and representation for these people within the UK healthcare system remains scant. This issue is not helped by the fact that, according to a 2020 review of services by the LGBT Foundation, the majority of people within this group felt alienated from mainstream psychosocial cancer support.
No battle with cancer is easy, but for those who present as a gender that does not align with stereotypical assumptions of who should have ovarian cancer, the challenge is even greater. Trans men with ovarian cancer note moments of discomfort about having to repeatedly declare themselves as transgender when attending cancer treatments, whilst others express feelings of gender dysmorphia that invasive cancer treatments such as scans and colonoscopies can trigger. This sense of alienation continues beyond the treatment rooms as trans men are traditionally excluded from ovarian cancer support groups that are aimed and marketed exclusively at women.
“There is a real lack of research into health and trans people full stop,” says Victoria.
March hails the start of Ovarian Cancer Awareness month; a period in which campaigning ramps up around the world and healthcare professionals highlight the research work undertaken to create a world wherein ‘no woman dies of ovarian cancer.’
With the proof of LGBTQIA+ exclusion in the wording of these messages, charities around the UK are working to redress the structural gendering of the healthcare system. They are determined to change the narrative around ovarian cancer so as to include the voices of the trans men affected by this disease.
“The cancer section of the healthcare system is built in a very gendered way,” says Stewart O’Callaghan, a gender queer activist who, through his own battle with chronic myleoid leukaemia, experienced first-hand the issues facing LGBTQIA+ people with cancer. Determined to offer these people a space, Stewart founded Live Through This, the only UK charity to expressly support LGBTQIA+ people living with cancer.
“We always see ovarian cancer clinics covered in pink. The reality is that there is a proportion of people who need to access these cancer services, but they don’t feel accessible to them purely because of the way that they are presented,” says Stewart.
Frustratingly, the lack of representation for trans men with ovarian cancer does not end with the prioritisation of cis-gendered women in support groups and awareness messaging, but has instead has become embedded in all facets of the UK healthcare system and those who work within it.
“Ovacome work with a lot of clinicians,” says Victoria, “and there is often not an unwillingness to learn about and address those issues discrimination [in the healthcare system], there is just a lack of understanding. I don’t doubt that many clinicians have the best interests of their patients at heart.
“But it goes broader than that, it is not just about the healthcare system ‘othering’ people and being gendered in its nature; it is also about public health messaging, follow up care and palliative care. It is about a lack of research and lack of availability for people from minority groups to be able to access trials. If there is a lack of research, there is a lack of evidence base and if there is a lack of evidence base then it’s very hard [for healthcare professionals] to extrapolate what actions to take.”
Whilst recognition of trans men with ovarian cancer may be muted within the healthcare system, Ovacome offers a telephone support line and 24 hour online forum to support those suffering, as well as providing information and support to healthcare practitioners and patients alike.
Ovacome’s work is not about trying to group those who feel marginalised, but about “listening, extrapolating, and understanding individual experiences so that we can move forwards to try and address issues”, says Victoria.
Live Through This are also on a mission to take a more “holistic” view to ovarian cancer, and such work is conducted through their peer support groups. These groups, which Live Through This runs in partnership with Maggie’s, allow trans men with ovarian cancer to connect to those with similar experiences, thereby combatting the sense of alienation felt by those who often feel excluded from the cancer support groups simply because they do not present as the female gender that these groups are often marketed towards.
Whilst these groups are most firmly established in London, Stewart states that the charity is looking to expand their network to cities, such as Oxford and Leeds, “to give more trans people an opportunity to meet others in a similar position”.
The drive to increase awareness around trans men with ovarian cancer has gained pace thanks to the emotional interview that Ian Duncan, Deputy Speaker of the House of Lords, gave last year to the i about his own brother’s death from ovarian cancer.
Nonetheless, there are significant steps that need to be taken; commenting on what trans men want to hear this ovarian cancer awareness month, Stewart is succinct: “They just want to be acknowledged and hear themselves discussed in a positive way.”
More information on support for trans men with ovarian cancer can be accessed at: ovacome.org.uk