By ecancer reporter Will Davies

It may have come to your attention recently that screening recommendations for cervical cancer in the UK have been recently rephrased to include anyone with a cervix. People with a cervix, as an umbrella term, discounts women who have had a hysterectomy (around 50,000 in the UK in 2013). However, media buzz around this rewording was not to address the exclusion of these women, nor at the inconsistency of this wording across other material, but at the inclusion of those whose gender presentation is now male, and have not had full internal gender alignment surgery.

Or, to be more brief, anyone with a cervix.

But the fallout from this change of wording exposed a bigger question for healthcare practitioners: Did you know there are screening guidelines in place for transgender cancer patients?

Let’s walk that back: Did you know there are transgender cancer patients? Maybe you’ve met them, maybe you’ve treated them, maybe you’ve done so without even knowing it.

Generally speaking, if a body contains an organ, that organ may get cancer given a long enough time frame. The gender presentation and sexual orientation of the patient in question will broadly have less to do with the risk of developing cancer in any organ they possess than other behaviours and societal factors, such as use of barrier contraceptives, smoking or alcohol consumption. However, there are other factors weighing upon a transgender patients experience of preventative care, screening and treatment in cases of cancer.

These factors, alongside the moral imperative to treat all patients with the best possible care, have led to the formulation of suggested guidelines for care in trans and non-binary patients. Guidelines exist in the UK and the US, either as standalone practice advice or supplementary to other screening and treatment recommendations, and are accompanied by many other reports on best practice .

So, why do so many doctors not know what they’re doing when it comes to trans patient care? And, having identified the many barriers to care for LGBT patients, how do so many not receive adequate care?

Even in the physical attendance of a screening procedure, there may be ingrained barriers to trans participation. For trans men with any remaining breast tissue or a cervix, a waiting room that incorporates a “feminine” aesthetic sits at odds with masculine gender presentation, and may be emotionally charged. 

As Penelope Damaskos, Director of Social Work at Memorial Sloan Kettering Cancer Center says:

“I think what's really important is for us as medical professionals not to operate on assumptions and to also look at just very simple things like the environment in which people might come to do screenings. It might make or break a person's willingness to have a screening done. If they're transmen and everything is all pink and kind of traditional gender-conform-ity in its presentation, there's gonna be no room for you at all. And this happens, and it drives me crazy. It happens in all of the breast cancer walks and the Cancer Awareness walks that are identified with particular genitals, or genital areas… The breast walks are very all ‘straight white women’ looking in their advertising. And I think it can work subconsciously, for even gay women to feel like they're not at risk for any of these cancers, when in fact they are, because there's no image that's projected back to them that conveys the potential for risk.

I don't know what it's like in the UK, but I think here in the states, and here in the bubble of New York City, we're trying really hard. We’re training people, we’re maybe making people aware to not operate on assumptions, and to be sensitive and as direct and honest as possible with all trans folks, so that they don't feel fearful or discriminated against. But obviously stuff still happens.”

And what could patients and practitioners take with them into screenings and their clinics, to improve access and uptake of procedures?

“I think there are a couple of things, obviously training for nurses and physicians needs to take place early on, not just in the medical arena, during residencies or internships, but actually in the medical schools and in the nursing schools. Right now, there are no courses or training specifically geared towards asking people about their gender expression, gender identity. For example, in most medical settings, they'll ask if you're male or female, those are the only choices, but increasingly hospitals are changing those choices to be more inclusive. Those kinds of things, I think, signal to an LGBT person, that this is an open and accepting environment. When the paperwork not only reflects their gender expression and identity, but also when they go in and they meet with the nurses, they meet with the physicians there, with not either hostility or derision or mistrust, that they're met more with openness and an understanding. That way they can get the appropriate and equal care that they deserve.”

To be sure, there are occasions when oncology for transgender patients differs from cisgender patients, and when transgender health itself raises unforeseen hurdles. In the recent case of a transmasculine individual undergoing a breast-reducing gender confirmation surgery, early breast cancer was detected and removed by surgeons. Dr Mieke van Bockstal, one of the authors on the report, described the findings and implications for cancer in breast reductive surgery:

“Technically, it’s impossible to remove every cell of a mammary gland, from the axila and the abdominal wall, and this remains an issue in BRCA 1/2 mutation cancers, and they are still at risk even even after they have total mastectomies. This is also the case non-BRCA patients, but their risk is much lower. At the moment we do not know if hormone treatment in female to male transgender individuals has a protecting effect or a stimulating effect on breast cancer, and this is something that needs to be studied."

"So we investigated 344 patients, and the reason for that was actually discovery of an unexpected breast cancer in 31 year old female to male trans patient. And then we started wondering whether we would find anything else in these specimens. And because Ghent University hospital has a lot of experience with gender confirming surgeries, we searched the archives of the pathology department for the remaining tissue slides, from all transgender FTM patients that we could identify. We reviewed all the slides. And that was actually the reason for this investigation, because we were curious about what we would find. And also because in a time where, let's say, governments are searching for reasons to cut costs, we wanted to investigate the incidence of breast cancer in these patients to justify the routine examination of gender-confirming mastectomy specimens.

"It's a quite complicated issue because we only have very few patients until now who have been diagnosed with breast cancer, and especially in female to male transgender patients. The patient that we reported, this 31 year old transman, he insisted on continuing hormonal treatment and it does have a certain danger. Because male hormones can be changed into oestrogen, and this of course can have a fuelling effect on any remaining cancer cells. So it's a risk which has been explained to the patient, but we only have very few numbers, until now, of transgender patients with breast cancer. So we do not have a lot of information about how to handle how to treat these patients, because most of them do insist on continuing hormonal treatment because of the gender confirming effect, but it has to be carefully discussed with them because it also inherits a certain risk of fuelling cancer growth, if there is anything left in a patient, especially in the case of known axillary metastases. It's very difficult to answer this question because the evidence is so limited. So I think we have to carefully follow up these patients to learn more about effects of hormonal treatment in these cases."

In justifying routine examination of samples from trans patients, the attitudes and perceptions of healthcare providers involved in focus groups sat at odds with guidelines when it came to Pap smears. Trans patients correctly identified this as a necessary screening step, though fewer trans individuals who are eligible for cervical cancer screening participate than cis-gender women, and may not undergo testing even when symptoms develop.

Educational support for care guidelines, or even knowledge of their existence, is clearly not reaching patients, or providers. The spiral of going without adequate professional education, low incidence of interaction with trans patients, and uncertainty or discomfort in administering care only leads down. Systematic exclusion of trans individuals from health insurance coverage in privatised systems can also be further complied when handling gendered cancers.

Acknowledging that some screening recommendations for a patient are going to change after gender-affirming procedures could be the first step to equitable care for these patients, followed by learning how best to provide support, screening and subsequent care. Until then, routine anatomy-based screening is a good start, while recommendations for transgender-specific care develop.

This is the position put forward in the recent advisory paper by Nathan Levitt. The paper highlights the barriers to trans patients in receiving any cancer care, from ignorance of health needs to blaming them for their health condition and physical roughness from attending physicians. It also provides useful bullet-points of who and when to screen for breast, cervical, and prostate cancers, and includes a few notes for civil treatment of patients, such as asking for preferred pronouns and how to approach the topic of hormone treatment and its impact on cancer risk.

Even while writing this article, another survey has been published calling for wider availability of transgender inclusive health care provision to tackle the thousands of preventable deaths in the US.

If all of these complicated care guidelines (read: showing human decency), are too much to keep track of, the pending wave of algorithmic care based on tumour epigenetic and cell marker expression is going to be a problem...

At the very least, remember the Hippocratic oath, a comfort not readily afforded to all:

First, do no harm.