Cancer Doesn’t Do Labels: Trans Cancer Awareness Event Saturday 18th March 2017 1. 2. 3. 4. 5. 6.
The brief The event The participants Participant feedback Possible actions from the event The sessions – Mixed messages, Trans cancer awareness quiz, Drawing it out, Re-writing history
APPENDIX – Cancer awareness quiz, ‘Drawing it out’ images
1. The brief The event came out of meetings around developing cancer awareness activity for trans communities in and around Manchester. These were attended by representatives from the LGBT Foundation, Action for Trans Health, the University Hospital of South Manchester NHS Foundation Trust, and Manchester City Council’s Macmillan Information and Support Service. It forms part of the Trans People and Cancer Workstream in the LGBT Cancer Support Alliance. The meetings highlighted the following challenges to engaging with trans communities on the subject of cancer: 1. Lack of trust in health professionals. 2. Issues around the core message of ‘go to your GP’ relating to trans people’s negative experiences of GPs (especially around GPs focusing on someone’s trans identity over their presenting symptoms). 3. Avoidance of the subject – many trans people are reluctant to engage with public health messages and avoid thinking about things such as cancer, end of life care etc. as they already expect to receive bad treatment. 4. Reluctance to engage with organisations not perceived to be trans-friendly or transled.
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2. The event The event focused on capturing trans people’s stories and experiences around cancer awareness. Following on from some research on trans people and breast/chest cancer, the aim was to creatively capture trans people’s experiences, understanding and awareness around breast/chest and other cancers. It was a place to discuss: screening programmes and why trans people avoid or are missed from them, trans people’s awareness of cancer and cancer risk factors, how cancer services could better meet trans peoples’ needs, and why evidence suggests trans people avoid thinking about cancer despite being a group with significant risk factors. Laurence Webb lead on the organisation and the event took place at the LGBT Foundation on Saturday 18th March, 11am – 3pm, with most sessions being delivered by trans people. It was promoted primarily by Action for Trans Health, LGBT Foundation, and local trans community organisations and groups. It was open to trans people based in the North of England with travel bursaries available. The event was funded by Manchester CCGs.
3. The participants 20 people attended the event: 15 of those identified themselves as trans, 4 identified themselves as cis, and 1 participant declined to answer. Of those who gave an answer, 7 identified themselves as men, 6 as non-binary, 4 as women, and 2 identified in another way, giving the responses demi-girl and non-binary woman. Participants had a range of sexual orientations, with 4 describing themselves as bisexual, 2 as gay, 1 as lesbian, and 9 describing themselves in another way. Of those who described themselves in another way, 6 identified as queer, 2 as pansexual, and 1 as pansexual polyamorous. Participants ranged in age from 19 to 54. 8 participants identified themselves as disabled. 17 came from Greater Manchester, with most attendees living in the south or centre of the city. Participants also travelled from Derbyshire, Warrington, and Lancaster.
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4. Participant feedback Overall, how satisfied are you with the service you’ve received? Very satisfied Satisfied Dissatisfied Very dissatisfied
17 3 0 0
I’d recommend this event/workshop to a friend or someone close to me Strongly agree Agree Disagree Strongly disagree
13 6 0 0
Knowledge – do you feel more informed as a result of coming to this event/workshop? A lot more informed More informed No change
15 4 0
Confidence – do you feel more confident about the issue(s) the event/workshop covered? A lot more confident More confident No change
11 8 0
Positive feedback: ‘Very informative, fun!’ ‘Informative and enjoyable’ ‘Thoughtful. Useful discussion’ ‘I’d say it was a great opportunity to discuss trans issues in a safe and supported environment, and one that recognises that trans health doesn’t start and finish with gender affirmation surgery’ ‘I got a lot out of the cancer quiz…it was a really great day.’ ‘A very helpful event that opens up thought processes around the specific issues that affect trans people and cancer care.’ ‘Free to access. Light and inclusive. Important for general trans healthcare.’ ‘You can voice many different ideas and concerns freely here and also get help and advice for many different types of people.’ ‘It’s important that the needs of our LGBT population is understood. This workshop is thought provoking and would be beneficial for you to attend as a health professional.’ ‘Very interesting way to consider experiences that aren't necessarily mine. Trans-specific and good.’ 3 | Trans Cancer Awareness Event 2017
‘Interesting discussion, thought provoking.’ ‘Very informative - came away with lots to think about.’ ‘It was very informative and thought provoking.’ ‘It's educational, free and a good resource to find otherwise inaccessible information.’ ‘educational, provides new conversations and topics’ Suggested improvements: ‘Breaks to alleviate heaviness.’ ‘Breaks in between so it's easier to process.’ ‘Few more breaks.’
5. Possible actions from the event
The quiz seemed to be very well received. There were two separate conversations about how useful it would be to have it as an online resource. It would need reviewing, with the input of trans people, and could be supported by real life stories.
There are a number of possible routes in Manchester / Greater Manchester for the trans experience to be fed into cancer services. For example, Lisa Jowitt and Mandy Peet from Greater Manchester Bowel Screening attended the day and were interested in input into their service. Is there a way of co-ordinating this activity, bringing together a group of trans people that various parties can consult with at the same time?
Trans people responded positively to the event and fed back that they had learnt and felt more confident as a result, which indicates future outreach work, particularly relating to cancer screening programmes, should be undertaken with trans communities.
6. The sessions Mixed messages Delivered by: Ashleigh Talbot What health issues do trans communities think about? Which public health messages are reaching trans communities and how? Four groups were each given a poster to look at and explore the messages being given. Comments were fed back from each table. Public health breast screening poster aimed at women over 70 It’s a women-centric message. It’s ‘mega pink’. Not all people with breasts are women, it’s a gendered message. ‘Don’t assume you’re past it’. Ageist implication, if you’re over 70 you’re too old. They’ve tried to do a pun but it’s a ‘bit weird. As a trans person you may not call it ‘breast’, using ‘chest’ instead. Must be difficult and embarrassing too for people assigned male at birth. Important to use language that makes it easier to talk about particular body parts. 4 | Trans Cancer Awareness Event 2017
Heteronormative ‘grandma’ image. Breast is gendered in this context. What kind of language could be used for parts of body? Trans people can feel left out of research and images.
Public health bowel screening poster Older white man, not very diverse, suggests only older white men get bowel cancer. Doesn’t look like a man going through cancer treatment, not realistic portrayal of someone going through this. There tends to be a success narrative – not about dealing with bad news, the difficulty of something like cancer. He looks very cheerful, happy to be on an advert about cancer. Do we have an idea in our heads about what people going through cancer looks like? Is this person having the appropriate emotions? Do we expect people to be sad, look like a victim? Not a normal situation; white guy in white shirt in white room. Detached from reality. Age and risk – images of older people might make you think you don’t have to think about it, as you’re not old enough, but obviously younger people do develop particular cancers. Macmillan - ‘Help me make sure no one with cancer is alone’ It’s saying, help ‘me’ but it’s actually Macmillan, a large charity, not an individual. There was some dislike about the fundraising focus of the poster. ‘When you’re trans you already feel an expensive person – this makes you feel even more expensive’. Funding messages give the impression the NHS is underfunded. Why aren’t services already in place? Why is charity money needed so much? Chuggers in the street, they are all about getting money. One person spoke to a chugger, saying they didn’t have any money to give but how could they help in other ways. The chugger wasn’t interested. Some agreement that in Macmillan adverts it is the women doing the looking after; men are the people they talk to and support. Maternal imagery - the idea of mothers looking after us when we are sick as children. Images of family. Trans people often don’t have the stereotypical ‘family’. Friends are very important. Being alone – it isn’t always a bad thing. Trans people often know what it is to be alone. Macmillan’s message could be a bit stigmatising – you should have done better at not being alone. Cervical screening poster – ‘You wouldn’t miss your hair appointment’ It’s normalising the screening and that’s a positive – the message that hair appointments and screening are nothing to be scared of. Plays down that it’s about cancer and might result in a diagnosis, so that’s good, safe.
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Not a diverse image. Clearly white, middle class woman. How could you address diversity? Multiple posters with different faces perhaps? (NB. This poster was one of a series of three; the other two were ethnically diverse.) You could have a poster showing several people eg. in a hair salon. Discussion around ideas of typical patients for particular cancer types. Some very strong images of stereotypical patient – it’s important to break them down. Health professionals carry those images around. There aren’t posters about smear tests for trans men - but not sure they would want to see it, not wanting to be reminded or think of it. On the other hand, it might raise the issue for trans men, encouraging them to raise the issue with their GP. ‘It can be difficult to know what our preferred images would be - but we do need to know what we are at risk of.’
The session facilitator, Ashleigh, talked about how public health messages tend to be very gender specific, reinforcing heterosexual stereotypes. ‘‘Here’s your pink cancers, here’s your blue cancers’. This is alienating for so many different reasons. The message given is, ‘This is the way to be’, making assumptions that people live, or want to live, in a certain way. This follows through to support offered.
Trans Cancer Awareness Quiz Delivered by: Ali Davenport, Macmillan Information & Support Service, Manchester City Council and Laurence Webb, Pride in Practice Manager, LGBT Foundation Ali and Laurence put together a quiz (see Appendix) covering some general cancer awareness and three specific cancers - breast/chest, prostate and cervical. Information for the quiz was taken from Screening for Life – Public Health Wales, Cancer Research UK’s statistics, and other reliable sources. The main features and messages were: Trans-friendly and gender-neutral language – eg. ‘breast/chest’ rather than ‘breast’. Referring to body parts in a detached, non-personal way eg. Using ‘people with a prostate’ rather than ‘your prostate’. Including and pre-empting trans-specific issues, eg. use of binders in relation to breast health, information around trans monitoring. Cancer can be very difficult to talk about. When you’re trans, this can be even harder for all kinds of reasons. But it’s important to talk about it, especially as risk factors and screening services aren’t as straightforward for trans people. As a rule of thumb, if a person has the body part, they are advised to consider the risk, screening, and signs and symptoms, relating to that body part. Issues that came up in the quiz: A person shared their experience of cervical screening. They said it was uncomfortable, but okay. The GP was understanding, giving them time to deal with their anxiety. This said, the same GP also asked if they were going to ‘grow a prostate’! This lack of knowledge was echoed by a trans man who had ultra sound. The radiographer asked them if they had had their testes replaced with a womb and ovary. This made them feel that the radiographer didn’t really know what they were doing. 6 | Trans Cancer Awareness Event 2017
Another person had experienced ultra sound in the pelvis area. None of the health professionals mentioned or raised their trans status. It was the ‘elephant in the room’. There were some issues around eligibility for cervical screening – not knowing who to contact if you received a letter but didn’t need the screening.
This was the first time the quiz had been used and it seemed to be received well, with lots of questions and, as expected, some clarification. Ali and Laurence, and two members of the Alliance who were present, think it would be useful to make the quiz available in some kind of on-line format, with supporting real-life examples.
Drawing It Out Delivered by: Jess Bradley, founder of Action for Trans Health An interactive session through craftivism, exploring the barriers that prevent trans people from going to the GP. Jess gave each of the four tables an area to discuss in terms of barriers to screening: financial, social, knowledge and emotional. After the discussion and feedback, each group created their own drawings exploring aspects of the screening journey for trans people (see Appendix). Financial Travel expenses, not being to claim back for self or care workers, processes not always great. No funding for trans services. Where is the impetus to get that in place? Is there funding for training health professionals around trans issues? Wastage, repeated letters, reissue of documents. Small things but key when it comes to access issues. Missing screening letters, eg. when moving house. Social Images on materials tend to be white people, even trans images. People of colour less likely to attend screening. Trans asylum seekers/refugees, wary of being out to GP if they come from the country they are fleeing from. Not being out to your health provider, they assume you are cis. Reception areas not trans-friendly, reception staff giving you ‘that look’. Dysphoria, worried about what people might think, not fitting in, being judged. Services are gender-specific, not for trans people. Being in stealth, wondering how you deal with a diagnosis, fear of being outed, eg going to a female clinic when a trans man. Trans people invisible, not talked about in media, not being educated about cancer. Trans people at higher risk of abuse, so might avoid screening, eg. having smear might trigger things.
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Knowledge Follows on from quiz, if you don’t know what screening there is, you don’t know what you’re entitled to. It’s difficult if you haven’t got a social network. Many trans people get knowledge from other trans people, not health services. Hard to know about screening if you don’t get a letter, eg. a trans man not getting breast screening invite. Cancer isn’t always something you want to self-educate about, out of sight out of mind. Maybe need to build yourself up to it. One attendee’s mother gave them information when they were a child. Cervical screening was normalised. A lot of people wouldn’t have that. Another attendee went to an LGBT teenage group. Specialist people brought in to talk to them, so much more thorough than anything at school. Good to have the information at a young age. If lesbian, mis-information that smear isn’t needed. Emotional Anxiety, dysphoria, uncertainty of response, frustration and anger, depression. The trouble and difficulty of getting through health services. Fears of what will happen based on past negative experience. It can be a negative cycle. Past experience can affect expectations. Trans people may be more confrontational and challenging, which can lead to negative communication with service people. This feeds back into perceptions. Intersectionality – eg being trans and disabled, not considered to have much body autonomy. People may think something is due to a person being trans but it can be disability, eg. the way it affects the voice and / or walk – ‘You’re so feminine’.
The four drawings (Larger images of the full drawings can be found in the appendix) 1 Mario theme
Represents the pitfalls, goals, platforms, people having different levels of support, the secret level underground. Difficult to get over some barriers; starting platform makes a difference. ‘Mushroom of Empowerment’. Being in conflict with authority, people saying you can’t do something, bouncing on their heads to get to next platform. Using the system against the system, eg equality policy. Getting through complaints/PALS. Societal pressures. ‘Moat of transphobic despair’. 8 | Trans Cancer Awareness Event 2017
2 Which way to the clinic?
I want to take care of myself but how? Depends on whether you have helpful or unhelpful parents / carers. School sex education tends not to be helpful. Might not be able to afford to get the services you need. Wondering if you’re welcome, if you’re going to get inappropriate questions.
3 Snakes and ladders
4 The tree
The goal is the screening. It depends on whether you get a good or bad square. You can go one way or another. The way you are treated can affect your cancer journey. Professionals talking to you with the wrong pronouns.
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4 The tree
A sloth because it’s a slow process. The leaves represent different barriers. Intersection important. Cancer affects all parts of life.
Rewriting History Delivered by: Felix McNulty, Action for Trans Health A look at trans people’s experiences and stories of accessing screening programmes and cancer services. What would your ideal experience look like and how do we write that story? Felix introduced the session by talking about stories in healthcare. ‘It’s so common to meet with ignorance, hostility and prejudice. Everyone knows more than a few horror stories. These circulate - we carry them into our interactions. It’s just as important to focus on how it should look, so we can tell health practitioners what services should look like. It’s important for us too – to make us feel better about ourselves. The faults are in the system. It isn’t that there’s something wrong with us.’ Each of the four tables looked at a different story, plotting the negative experience of four individuals. They considered the reactions of health professionals and how that impacted on the experience. They were asked to rewrite the stories; how they could have gone well.
Story 1 – Sam When I spoke to my doctors about getting my gender marker changed, they asked if I had a Gender Recognition Certificate and I was asked if I had had ‘The Surgery’. I was told that I couldn’t change my gender marker until I had undergone surgery due to the need for cervical screening alerts. I later received a letter from my GP reminding me I was due a cervical smear. First off, the letter was addressed to ‘Ms’, and all of the language in it referred to women, females, girls, and never just ‘people with a cervix’. The cervical screening lab wouldn’t accept a male sample, so my doctor had to change my gender on my records from male back to female, and now they’re saying they can’t change it back. It’s infuriating that there’s no space in the system to recognise men who have cervixes. I regret ever having my screening.
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Group discussion feedback First of all, the story opens with misinformation – a GRC is not required for gender to be changed on medical records. The consequence of this for Sam is misgendering and alienation, as well as intrusive questioning. Preparing healthcare systems/IT systems to accommodate trans patients would have improved this story dramatically, as it may have helped the issue of screening alerts to be avoided, and also meant that Sam didn’t receive a screening reminder containing inappropriately gendered language. This is not only distressing, but also potentially dangerous, as receiving letters addressed in such a way could ‘out’ a person to the post worker or to other people living with them. Discussion of alternative screening reminders would also have been beneficial here. Ensuring that systems are inclusive would also have changed the story in terms of Sam’s male sample being rejected from the lab. This would have prevented the ensuing difficulty with Sam’s gender marker, which has put Sam off going back for another screening, potentially endangering his health.
Story 2 - Jack When I was pushing to get my gender changed on my medical records, I was informed that I would no longer receive reminders about screenings. At the time I was so focused on getting my gender marker changed that it didn’t really occur to me that an alternative to the reminders should have been discussed – there was no conversation about how often I should be requesting screenings or how to make sure I was still having them regularly. During my last smear the nurse noticed that I was obviously anxious and uncomfortable and asked me what the matter was. I explained that I am non binary, and she responded by asking what I felt were inappropriate and intrusive questions about what non binary means, how I have sex and how I feel about my periods. This continued throughout the test. It’s put me off going back.
Group discussion feedback Jack says they were ‘pushing’ to have their gender marker changed – this should never have been necessary. Health providers should provide help, advice and support in facilitating requested changes of gender marker on medical records. Alternative screening reminders should have been raised proactively by the practice – Jack should not have had to come to recognise this issue independently. Cis people aren’t expected to remember, yet trans people are expected to carry all this knowledge. This relates to a lot of experience with health professionals – there seems to be an attitude that you’re not entitled to understand health issues because you’ve made the ‘choice’ to be trans. We do not expect cisgender people to monitor their own risk and screenings in this way. The group identified the nurse’s initial attention to Jack’s discomfort and anxiety as a good thing, but then highlighted the problem common in trans people’s interactions with health professionals of personal curiosity overpowering professional boundaries and professional responsibility. In this case the result was that the nurse’s actions increased the very anxiety and stress that drew her attention in the first place. 11 | Trans Cancer Awareness Event 2017
If there had been a way of noting Jack’s non-binary identity and perhaps their preferred pronouns/language regarding their body, then the staff may have been aware and ready to receive them as such. In this way Jack’s experience is in part a consequence of the fact that the system is unequipped to accommodate for nonbinary individuals. The story may also have been different had the nurse and other staff involved received adequate training on transgender awareness. Sam was put off going back. It can feel like a stream of negative experiences, only so much energy to complain. This means something like screening can go under radar, being considered less important than other health issues.
Story 3 - Alisha I had to ask the locum consultant and other consultants about the effects of HRT on my prostate. They hadn’t a clue if there were any concerns whatsoever. I have a friend in Bristol who is also a trans woman who is not receiving HRT and is the same age, and we have both been told by the same hospital independently that the staging level of PSA is 2.0. This suggests that they have not taken account of whether oestradiol testosterone levels have implications on PSA levels. That’s another point that comes into the issue of trans women and prostate cancer because nobody could give me any information about the impact of treatment on my transition or vice versa, I kept asking about it and nobody was able to tell me right until the last moment. I found out after the treatment that it meant I wouldn’t be able to have gender affirmation surgery.
Group discussion feedback The burden of self-education was the first point highlighted by the group – the story would be different if the clinicians actively engaged with Alisha’s transition-related treatment and explained clearly to her whether and how her hormone treatment may affect her prostate health and vice versa. This point was related to the burden of education placed upon the community, in the discussions Alisha has with her friend and the way they combine their knowledge and experience to try to gain a better picture of their treatment. For instance, the group discussed the potential for false readings due to hormones, and also flagged that the story as a whole would look different if medical knowledge in this area were more comprehensive – at the moment it is lacking. The story should have been different from the start in that it should have been made clear to Alisha what the impact of treatment would be on her transition so that she could make an informed decision and also prepare emotionally for the resulting impossibility of gender affirmation surgery. This was potentially life-shattering, with knock on effects on Alisha’s well-being. No one should be in that position. Alisha states that she had to ask the locum consultant, and group participants mentioned that it would have been much better for her to see a regular consultant for continuity. This may have improved the ‘joined-up’ aspect of her care. There needs to be trans specialists – clinicians who can advise on trans related issues. The group mentioned that for clinicians a ‘this is what you need to know’ assumption can be made, which obscures significant points for patients such as Alisha. Therefore, challenging the assumption of a patient’s needs and the idea of a ‘standard’ experience of prostate cancer would potentially have improved this story as a whole.
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Story 4 - Andrea When I was being treated for cancer, the first problem was being invited for treatment in all male clinics. Where there are mixed patients or mixed waiting areas, that’s much less of a problem for me. I was obviously nervous and uncomfortable about this, and was on the receiving end of stares and some comments, but no one seemed to know what to do about it. I just got through it the best I could. Another thing about being a trans woman with prostate cancer, is it’s a constant reminder that I was assigned male at birth. Every time I go to the hospital, “I have prostate cancer” – so therefore “I’m male”. I’m constantly being told when I go for blood tests that I’ve got the wrong forms and I say to them “No, I’m a trans woman and I’ve got prostate cancer”. It can be quite hard to be a trans woman with prostate cancer, no harder than others with the same cancer but there are just other things we have to deal with.
Group discussion feedback The first point flagged by the group was the heightened gendering of specific cancers, in ways that alienate many people including trans people. The story could have been different if this were not the case to the extent that it currently is, and the group discussed the worrying current trend towards single sex wards, rather than towards safe mixed sex wards, clinics and waiting areas. The story may also have been different if a zero tolerance policy around transphobic harassment had been in place and effectively implemented at the clinics Andrea attended. Andrea may also have found the experience easier if it had been made clear to her that she could bring someone with her for support – it’s not clear whether this was explained as an option. It would be helpful if there was cancer support for trans people in relation to gender specific cancers eg. prostate. Finally, the group called attention to the fact that patients should never be interrogated about the correctness of the records or identification they present with, and this is an aspect of the story that adequate training may have helped to be avoided. Health professionals should be informed enough not to keep asking same questions – and the patient should be trusted with their information.
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APPENDIX 1
TRANS CANCER AWARENESS QUIZ 1. How many people in this room have been affected by cancer? a) About a third b) About half
c) Most of us
Cancer affects so many of us – our family, friends, partners, work colleagues and ourselves. Despite this, it can still be very difficult to talk about. When you’re trans, this can be even harder for all kinds of reasons, We hope today is giving you an opportunity to talk about cancer in a way that’s supportive and relevant to you.
2. How many of us will be diagnosed with cancer at some point in our lives? a) 1 in 2
b) 1 in 3
c) 1 in 4
The lifetime risk is increasing due to more people living into old age, where cancer is more common. The one in two figure is for people born after 1960 (1 in 3 if born before). It’s estimated that at least 300,000 trans people in the UK will experience cancer in their lifetime. ADDITIONAL INFO: The agreed estimate for the number of trans people used by GIREs, NHS and Government in the UK is 1% of the population or roughly 600,000 people (and this is expected this to be a conservative estimate).Taking Macmillan’s predicted stat for 2030, this is how the figure has been arrived at.)
3. Approximately how many different cancers are known to exist? a) 100
b) 50
c) 200
There are more than 200 different types of cancer, each with different causes and symptoms requiring different treatments. Some cancers are more common than others, of course. Breast/chest, lung, bowel and prostate cancers together account for over half of all new cancers each year.
4. Which of the following do you think are risk factors of cancer? a) Age b) Hereditary factors c) Lifestyle choices - Tobacco and alcohol use, diet and exercise d) Occupational hazards - Asbestos, chemicals, metals, tobacco smoke e) Environmental exposure - Radiation, sun, viruses 14 | Trans Cancer Awareness Event 2017
They are all risk factors. Some of them we can’t do anything about – like our age - but there have been large increases in the incidence of many cancers strongly linked to lifestyle, such as lung and skin cancers. 4 in 10 cases could be prevented through lifestyle changes. We’re not here today to tell you how to live a healthy life and we recognise the extra barriers that often prevent trans people from being able to make healthy choices, it’s just something to think about. One of the things we will look at in this quiz is how risk relates to gender and being trans – and what that might mean for you.
5. If detected early, chances of survival from cancer is much higher. a.) True b) False This is the positive news. Finding out you have cancer early could save your life. Half of people diagnosed with cancer now survive the disease for at least ten years. Cancer survival rates in the UK have doubled in the last 40 years. Early diagnosis is very important in this. If you notice anything unusual about your body, or have one of the warning signs or symptoms, it’s really important to talk to your doctor about it. But we know this is an issue for many trans people. You might not be out to your GP or you may feel your GP isn’t supportive. We’re going to explore this in the session after lunch.
We’re now going to ask some questions around particular cancers. It isn’t always straightforward, so please say if you are unsure.
BREAST/CHEST CANCER 6. Can anyone develop breast/chest cancer? Yes or no. 7. What is the age for screening (mammogram) in Manchester? a) 50 - 70 b) 47 - 73 The national range is 50-70. Manchester is part of a trial of an extended age range. Screening is offered on a geographical basis once every three years, so if your 50 th birthday was just after the screening had been in your area, you wouldn’t be invited for three years. The extended age range accounts for this.
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8. If you have breast tissue, are you recommended to go for screening? Yes or no. If you have had top surgery or the construction of a more masculine appearing chest, some breast tissue generally remains, so it is advisable to go for screening. Mammograms can be taken even when there is a small amount of breast tissue. If you have had a bilateral mastectomy (both breasts removed), there is no need for screening. Your risk goes down but it’s still important to be aware of the signs and symptoms of breast/chest cancer. If going into a breast screening mobile unit is difficult for you, it is worth calling the screening services. Perhaps they can provide a more suitable time – eg. first of the day or a longer appointment so you don’t feel as rushed, removing binders, for example, or time to allow you to deal with emotional aspects. It’s important that you always feel you are treated with dignity and respect. ADDITIONAL INFO: There is no evidence to say that wearing a binder long term increases the risk of breast/chest cancer. However, it may damage breast tissue. If you have any concerns, speak to your GP or Practice Nurse. If you are a trans man on long term hormone therapy you may be at an increased risk of developing breast/chest cancer, regardless of your age. It is unclear, however. Research around trans people is low and a number of studies between 2013 – 2016 have found no increased risk of breast/chest cancer in any trans person relating to HRT.
9. If you are a trans woman taking hormones are you advised to have screening? Yes or no. While recent evidence suggests that long term hormone therapy may not increase your risk of breast/chest cancer, data relating to health and risk of trans communities is weak, so it is probably better to have the screening than not. Speak to your GP about having a mammogram. Again, call the breast screening services if you would like an appointment at the start or end of day, or a longer appointment.
10. If you are a trans man or non-binary person assigned female at birth and your record with your GP shows you as male, will you be invited to screening? Yes or no. You won’t appear on the IT system. Screening systems currently operate on a binary basis – ‘Male’ or ‘Female’. If you would like a mammogram, talk to your GP about arranging one at your local hospital breast clinic. ADDITIONAL INFO: You don’t need a Gender Recognition Certificate to change the gender you are registered under in the NHS system. It’s up to you. However, the choice is only ‘Male’ or ‘Female’, with no trans options. (There are unlikely to be trans options in the near future due to the complexities of NHS data collection and systems.) Your GP practice is a different matter. They may include trans status in their monitoring. All GPs in Manchester signed up to ‘Pride in Practice’ are encouraged to do this. 16 | Trans Cancer Awareness Event 2017
11. If you are a trans man or non-binary person assigned female at birth and your record with your GP shows you as female, will you be invited for screening? Yes or no. If you don’t want to receive the letters, you need to opt out by contacting the local screening office.
12. If you are a trans woman or non-binary person assigned male at birth and your record with your GP shows you as male. Will you be invited to screening? Yes or no. As already discussed, if you are on long term hormone therapy, you may want to speak to your GP about having a mammogram.
We all need to be aware of the signs and symptoms of breast/chest cancer, noticing any changes and raising them with our GP. Cancer can develop anywhere across the whole breast / chest area, including under the arms and up to the collarbone. 13. What are the signs and symptoms? Lumps, swelling and thickening / Change in skin texture / Appearance or direction of the nipple / Inverted nipple / Discharge or liquid from the nipple / Rash or crusting / Change in size or shape / Pain If you’ve recently had top surgery, it is likely you will experience pain and swelling for some time afterwards, and nipples can go through changes in appearance before settling. If you have any concerns or questions, you can talk to your surgeon or staff at the hospital where your surgery took place.
PROSTATE CANCER 14. The prostate is a walnut-sized gland beneath a. the stomach b. the bowel c. the bladder
15. If you have had surgery to create a vagina, do you need to think about prostate health? Yes or no. The prostate is not removed during surgery due to the difficulty and safety of the procedure. Removal risks damaging important nerves or the bladder in what is already a complicated procedure, so the preferred option is to leave it in place. This means you are advised to consider prostate health if you were assigned male at birth. 17 | Trans Cancer Awareness Event 2017
16. Taking hormones reduces the risk of prostate cancer. Yes or no. Not sure Hormones cause the prostate to shrink but there doesn’t seem to be conclusive evidence on how much this reduces the risk of prostate cancer.
17. There is a national screening programme for prostate cancer. Yes or no. It hasn’t been proved that the benefits of a screening programme would outweigh the risks. Many people would receive unnecessary treatment. Instead, there is an informed choice programme called ‘Prostate Cancer Risk Management’ for people with a prostate aged 50 or over who raise concerns with their GP. It is over 50 because prostate cancer is rare in younger people – age becomes a major risk factor after 50.
18. What are the three main ways the GP checks the health of the prostate? Family history – People are two and a half times more likely to develop prostate cancer if a parent or sibling with a prostate has had it. This risk increases if they have more than one close relative or they were under 60 when diagnosed. There may also be a higher risk of prostate cancer if a person’s parent or sibling has had breast/chest cancer, particularly if they were diagnosed under the age of 60 and had faults in genes called BRCA1 or BRCA2.
PSA test – This is a blood test that measures the amount of a protein called prostate specific antigen (PSA) in the blood. A raised level suggests there may be a problem with the prostate - this may be an enlarged prostate rather than cancer. However, the PSA test can sometimes give inaccurate results for people taking oestrogen.
Digital rectal examination (DRE) – A doctor or nurse inserts a finger into the rectum (back passage) to feel the size and for bumps, soft or hard spots, or other abnormalities. ADDITIONAL INFO: In genital surgery, the vagina is located between the rectum and the prostate. Some genital surgeries mean it is easier to check the prostate with a vaginal examination instead.
While some prostate cancers are aggressive, in most cases, it is slow-growing. This means the prostate is often monitored over a period of time. Are PSA levels rising? Is the digital test showing any changes? What is the family history? Some fall into the ‘Watchful waiting’ category. The prostate is cancerous but the person won’t have any treatment unless they start showing symptoms.
19. What are the signs and symptoms of prostate cancer? Difficulty passing urine / Passing urine more frequently than usual, especially at night / The feeling of not completely emptying your bladder / Needing to rush to the toilet to pass urine Less common: Blood in the urine or come/ Pain when passing urine or coming 18 | Trans Cancer Awareness Event 2017
CERVIVAL CANCER 20. More than half of new cases of each year are diagnosed in people with a cervix aged under 45. Yes or no. It is a cancer that affects younger people. However, survival rates are highest in people diagnosed under 40.
21. You are at a higher risk of developing cervical cancer if you were sexually active at an early age or have had several sexual partners. Yes or no. Nearly all cases are linked to a common sexually transmitted infection called the human papillomavirus or HPV. You are more likely to get HPV infection if you are, or have been, sexually active. However it is very common - 4 out of 5 people are infected with HPV at some point in their lives, including people who have only had one sexual partner. No one should ever feel they are to blame for developing cervical cancer. Condoms can reduce the chance of getting or spreading HPV infection. Additional info: All people aged 12 to 13 and registered as female with their GP are offered HPV vaccination – but anyone with a cervix is entitled to it. This protects against the two types of HPV responsible for more than 70% of cervical cancers in the UK. However, it is still important to have screening.
22. The types of HPV that cause cervical cancer have no symptoms. Yes or no. The virus does not usually cause any problem and clears up on its own. But some cause changes in the cervix that may lead to cervical cancer. You won’t know you had it though, which is why it’s so important to have the screening. An abnormal test result does not mean you have cancer but the abnormal cells may need to be treated. Screening prevents many cases of cancer. It is the best way to detect early changes to the cervix.
23. What is the age range for cervical screening in the UK? a. 20 - 59 b. 25 - 64 c. 30 - 69 Every 3 years age 25-49 and every 5 years age 50-64. 65+ - only those have not been screened since aged 50 or had recent abnormal results.
24. If you are a trans man or non-binary person who was assigned female at birth and your record with your GP shows you as female. Will you be invited for screening? Yes or no. You are advised to go for screening if you have not had a hysterectomy and still have a cervix. It is your choice, however. Contact screening services if you want to opt out. 19 | Trans Cancer Awareness Event 2017
25. If you are a trans man or non-binary person who was assigned female at birth and your record with your GP shows you as male. Will you be invited to screening? Yes or no. Again, you are advised to go for screening if you still have a cervix. Talk to your GP practice to arrange to have the screening at the practice and see how to make it most comfortable for you, eg. by bringing a friend or having the examination done by a clinician of a particular gender. If you have taken testosterone for a long time, the test may be painful or uncomfortable. Different size instruments and some extra lubrication can help with this.
26. If you are a trans woman or non-binary person who was assigned male at birth and your record with your GP shows you as male. Will you be invited to screening? Yes or no. You don’t need to have screening if you don’t have a cervix. But you will get an invite if your record shows you as female. Contact screening services to opt out. Trans women and non-binary people who have had lower surgery abroad may have had a cervix surgically created and may be at risk of cervical cancer. Current data about whether people with a surgically created cervix are at risk of cervical cancer is inconclusive. Currently it is recommend to get your cervix screened if you have one, to be on the safe side.
27. What are the signs and symptoms of cervical cancer? Bleeding between periods / Bleeding during or after sex / Bleeding after the menopause / Any unpleasant vaginal discharge / Discomfort or pain during sex These are not always obvious which is why it’s important to attend screening. As a final point, and this applies to all screening, if you have changed your registered name and gender, but are still getting letters in the old name, you need ask screening services to update your records.
As always, it’s important that you feel you are treated with dignity and respect. These health checks and knowledge helps us all to keep safe and live healthy lives. We hope you’ve learned something and that we’ve started making this easier to talk about, as it’s important that trans people feel empowered to be able to access screening programmes and be proactive about their cancer risks too. THANK YOU. ANY QUESTIONS? Information for this quiz has been taken from Screening for Life – Public Health Wales, Cancer Research UK’s statistics, and other reliable sources. March 2017 20 | Trans Cancer Awareness Event 2017
Appendix 2
Drawing it out 1 Mario theme
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2 Which way to the clinic?
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3 Snakes & ladders
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4 The tree
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