We recommend that listeners exercise self-care when listening to this podcast, as some may find the content upsetting.
Let’s be Upfront about the extra challenges and different needs of LGBTIQ+ people when diagnosed with breast cancer. LGBTIQ+ communities have unique requirements and additional concerns and anxiety when dealing with a breast cancer diagnosis, including whether to disclose their sexuality to their medical team, whether they will be able to find the support they need, and anxiety surrounding discrimination and their treatment being negatively impacted.
Joining us for this episode of Upfront is Jane Ussher and Natalie Halse. Jane is a Professor of Women’s Health Psychology in the Translations Health Research Institute at Western Sydney University and is the lead researcher in the recent ‘Out with Cancer’ Study. Natalie is a registered nurse and a BCNA consumer representative with lived breast cancer experience of a LGBTIQ+ person.
We hear about some of the key findings of the ‘Out with Cancer’ study and its key learnings, discuss disclosure including how to do it safely, the positive benefits, and why some people are reluctant and discover what to do if you experience a negative reaction from a health care professional and the support available.
This podcast was recorded in January 2022.
Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons, and this episode is proudly brought to you by Cancer Australia.
Want to get in touch? Visit our website at bcna.org.au or call our Helpline on 1800 500 258.
Kellie Curtain [00:00:04] Let's be up front about the extra challenges and different needs of LGBTIQ+ people when diagnosed with breast cancer. In this episode, we're talking to Jane Ussher, professor of women's health psychology in the Translational Health Research Institute at Western Sydney University. And we're also talking to Natalie Halse, a registered nurse and BCNA consumer representative with lived experience of breast cancer as an LGBTIQ+ person. Jane is the lead researcher of the recent ‘Out with Cancer’ study, the study of more than 650 people with cancer and their carers from LGBTIQ+ communities across all cancer types. One of the key findings is the anxiety surrounding coming out or disclosing your sexuality or gender identity to a health professional. Today, we're going to discuss disclosure, how to do it safely, the positive benefits and why some people are reluctant to disclose. We'll also talk about what to do if you experience a negative reaction from a healthcare professional, which is what many people fear. A reminder that this episode is an unscripted conversation with our guests. The topics discussed are not intended to replace medical advice, nor necessarily represent the full spectrum of experience or clinical option. Please exercise self-care when listening, as the content may be triggering or upsetting for some. Welcome Jane and Natalie to Upfront.
Jane Ussher, Natalie Halse [00:01:38] Thank you. Thank you.
Kellie Curtain [00:01:40] Jane. This is a groundbreaking study and the largest of its kind in LGBTIQ+, and it's taken seven years. So, in your study, how do LGBTIQ+ patients concerns differ to others with cancer?
Jane Ussher [00:02:03] Well, that's a really good question, because I think that's one of the things that we often get asked, and it's often it's something that clinicians often say is, well, I treat all patients the same. I treat all patients with respect and care, and I don't see why I should need to think about LGBTQI people as any different. But what we know from our research and what we what other people have reported is that there are higher rates of distress in LGBTQI people with cancer. Now, the average distress levels in our study were similar to the general cancer population, but we had 40 percent of our participants reported high distress. And that compares to about seven to 10 percent in the general cancer population. So, this population are four times more likely to report distress.
Kellie Curtain [00:02:57] And what does the distress come from?
Jane Ussher [00:03:00] Well, this is what we have been looking at in our research, and this is really we're I'm picking the different factors that cause distress for people and also the particular people who might be more likely to be distressed. And what we know is that LGBTQI people are more likely to often have experience discrimination in their lives in general and report quite high levels of discrimination in cancer care. So, 90 percent of the people in our study said they'd experienced discrimination at some point in their lives, and around 70 percent said they’d experienced discrimination in cancer care. Now that's a really big cause of distress for people and even those people who haven't experienced distress are fearful of it. So they go into cancer care, being afraid of are they going to be treated, are they going be excluded because they're gay or lesbian or transgender or intersex, or are they going to experience hostility from their doctor. They experience anxiety about coming out. And also in many LGBTQI populations, people don't have the same support that people do in the general cancer population, and that's particularly the case for young people. They might have been rejected by their families, they might not be as comfortable about being out in their lives. So, there's a whole range of different factors that actually mean that it's a population that's much more at risk of distress.
Kellie Curtain [00:04:29] Natalie, you're at the frontline of seeing people diagnosed with breast cancer and in particular, LGBTIQ+. What do you hear from people in regards to whether they feel an extra burden on top of being diagnosed with breast cancer that because of their sexuality?
Natalie Halse [00:04:53] I think in my experience of talking to people in this situation, their concern is always about will my care be different or compromised, even by an unconscious bias that a doctor or breast care nurse might have or oncologists that will in some way make the treatment generally more difficult for them. And I think at the time of diagnosis and heading into treatment, it's an added burden that people don't need.
Kellie Curtain [00:05:26] So when you have that burden, it obviously increases your levels of stress and does that affect the outcome of their health and care?
Natalie Halse [00:05:40] I think it's the time when you actually have to make a decision about whether you come out to your treating team or not. If you're in a relationship, it's a time when you're likely to go with your partner, like you don't normally go for other minor health conditions that it will be the time that you will take your partner with you in most cases. And that is the outing point pretty much straight away when you introduce the person who is with you as your partner. I guess the other issue is for people not in relationships as to whether they disclose at that point of going into having a discussion about their treatment and how they actually if they want to disclose, do. I think one of the really interesting things that Jane's study is if we look at emotional well-being having improved outcomes in cancer care, which I think we can say that that is true, that there is a lower level of distress for people who are actually out with their treating team. That would that was firmed up in your research, Jane, wasn't it?
Kellie Curtain [00:06:50] So let's talk about disclosure. Jane, can you explain what coming out or disclosure is for LGBTIQ+ people?
Jane Ussher [00:07:01] Well, disclosure or coming out is really telling people who you are. So, it might be telling someone that you identify as a lesbian or you identify as gay that you identify as trans or queer. So, it's actually being authentic in an interaction with other people. So, so as a person like I'm in a same gender relationship,I identify as a lesbian myself. So, it's about if I'm in interactions with people, it's something I do in my everyday life. Everybody who knows me knows that I have a wife, but it's about actually telling people that so that you can be authentic in that relationship with them. So, it's about letting them know that they're able to support in terms of cancer care so that they know who you are so that they can support you and your partner if you have a partner in ways that are relevant to you in your life. So it might there might be specific aspects of your cancer treatment or your experience of having cancer that are different from somebody who's in a heterosexual relationship or different from someone who's not transgender or non-binary. So, disclosure is about letting, letting someone know basically who you are.
Kellie Curtain [00:08:12] Is it about how much you disclose too, dependent on what type of breast cancer treatment you need? Do you necessarily need to disclose everything or do you disclose it to certain health care professionals? What's the best approach?
Jane Ussher [00:08:30] Well, I'd be interested to see what Natalie thinks about this, but I think it's about disclosure is something that's the choice of the person themselves, like who they disclosed to when they disclose and what they disclose. So, it's about some people find it relatively easy to do, and that tends to be people who are a little bit older because they’ve been doing it all their lives or for many years. And also, you get more confident in yourself as you're older about all sorts of things in life. It's not just about disclosure. And you have practices and ways of doing it. So, you know what works for you and you find your ways of doing it. So, I normally personally disclose by introducing my partner, Janette, as my wife or my partner. And that's the way a lot of people in our study disclosed that they brought their partner along to the first appointment with the doctor, and they'd say, this is my wife or this is my partner. And that's a way of disclosing that’s kind of easy to do. But people might not want to disclose, some people who were transgender or non-binary didn't necessarily want to disclose that if they didn't think it was relevant because we know that trans people actually do experience more discrimination in life and they report more discrimination in cancer care. And if you don't think it's relevant, you don't necessarily want to disclose it. And you know, if you're going for a blood test from a nurse who's never going to see you again, well, you're not necessarily going to want to disclose that you're in a same gender relationship or you're a trans person. It's not relevant. It's putting too much effort to do that. And that's what a lot of people said to us that they selectively disclose. But your primary clinicians, knowing that you're an LGBTIQ person is probably important. I mean, I don't know, Natalie, what your thoughts are on this.
Natalie Halse [00:10:20] I think from personally by disclosing I was able to feel relaxed and trust at an elevated level of trust with my treatment team. And I see what you're saying about how you disclose to is important. I mean, there are some key people that are going to be in your life for some time to come. And I think feeling comfortable to talk about issues that you may have along the treatment path are very important and for other people that you're going to see once or twice, I simply didn't bother because it wasn't relevant, and it can actually look strange if you, you know, if it's out of context. So, it's an odd thing to do.
Kellie Curtain [00:11:03] Are there benefits to coming out or declaring your identity to your health professional?
Jane Ussher [00:11:15] I think that there are in terms of, you know, it can be initially a time of great turmoil because it's an awful, awful lot of things that are going on. You don't tend to feel unwell when you're diagnosed with breast cancer. And so there's a lot to come to terms with and a lot of different treatment options that you have to consider. And I think that the benefits of it that it gives you a feeling of security, emotional security, and I think that in terms of everything that you can do for yourself as a person who has breast cancer in terms of looking after your own emotional well-being, which is very important and also helping to ground yourself in terms of the decisions that you're going to be making, it is important to have that level of emotional well-being, which we've seen from Jane’s study does come from disclosure.
Kellie Curtain [00:12:12] Jane, would you like to talk to those findings of the actual real benefits, tangible benefits of improved mental health by having disclosed?
Jane Ussher [00:12:22] Well, there's been a lot of research on disclosure generally in LGBTI health. And what, there's a really quite established finding that people who are comfortable disclosing and who do disclose to health care professionals have better both physical well-being and mental health well-being. So, I think I think we can say that in terms of your health, it's actually good if you can disclose as long as you have a positive reaction or an accepting reaction that we can talk a little bit about what to do if you don't in a minute. But basically, you know, I think really looking into what Natalie says it's about people said to us, they felt seen and heard as who they are if they were able to disclose. It meant that their partner could be included in their care so they could bring their same gender partner along to their care and happy to be included whereas if you don't disclose, then often you're going on your own because you're actually, in a sense, passing as a heterosexual person or passing as a cisgender person if you're trans and if you disclose, it means that you can get information that's quite specific to your health care needs. So, you know, just one example we know that breast cancer, particularly breast cancer treatment, can have an impact on a person's sexual well-being and their sexual functioning. So many women experience vaginal dryness with vaginal tightness after breast cancer treatments. Now, if you're in a same sex relationship that might impact differently on your sexual relation with your partner than if you were in a heterosexual relationship where having penetrative sex is really important. So, it might be relevant to you to actually let your clinician know that you don't really, you're not really needing to use vaginal dilators for example, to keep your vaginal functioning after breast cancer treatment. Or you might experience you might, you might feel that the way you're going to interact with your partner sexually might actually be something that your doctor needs to know in terms of the advice they're going to give. So, I think that those sorts of ways, it's actually really important for disclosure and actually feeling safety and not anxious about things are important. You're not anxious about what's going to happen if the clinician finds out which they might do.
Kellie Curtain [00:14:42] I think another really interesting part of your study is that in some of the changes that occur with breast cancer treatment, whether it be hair loss or the need for a mastectomy, some of those changes can actually what might be in a heterosexual person really confronting and debilitating can actually be reaffirming for others.
Jane Ussher [00:15:08] Yeah, it was interesting. Actually, some people and some of the people that we talked to found that hair loss wasn't a negative. But actually, we had a number of people who had had long hair prior to breast cancer treatment, and they had cut their hair short as part of the treatment and actually felt quite liberated by that. And it made them think about their identity and how they saw themselves and actually felt quite positive about it. And we also had a number of people who talked about after having a mastectomy, deciding not to reconstruct or to reconstruct much smaller breasts, and that being much more in line with their identity as a non-binary person or as a lesbian identified person. It wasn't always a positive because sometimes the clinicians were wanting the person to reconstruct. Or what was a larger breast or a breast size that that they have had have previously. So that was sometimes a little bit of a difficult negotiation. But I think it's I think what's really important to say here is that we can't generalise all LGBTIQ people and say, this is what your experience is going to be. It's going to be different for different people, in the same way it is for heterosexual cisgender women with breast cancer, there's going to be lots of variation. But I suppose what's important to say is that there are things about being LGBTIQ that can make the experience of cancer different and things that we need to be aware of.
Kellie Curtain [00:16:41] Natalie, what do you hear from those in regards to fear and how do they navigate their experience?
Natalie Halse [00:16:52] In relation to whether they disclose or not, do you mean?
Kellie Curtain [00:16:56] To disclosure to their body changes just to their feelings in general?
Natalie Halse [00:17:02] Because the treatment, the treatment options are quite from, you know, lumpectomy and radiation in some women through to full mastectomy, chemotherapy and radiation, which obviously you've got the greater body changes that are the range of the spectrum. I think, again, I think what Jane's talking about, you can't group everyone together, I think the difficulty can be in terms of sometimes treating practitioners, discussion can be a little challenging at times. For example, when I had a mastectomy, a breast care nurse said to me that I may not want to have a reconstruction because I didn't have a husband. So that presumption that a breast isn’t important to a lesbian woman, I found quite, I was quite shocked, I think, at the time. She also talked about the theatre time it would take to do it. So, if I didn't want to have it, somebody else could have something else done. So, I think it can, and you know, Australia is very diverse in terms of its geography and attitudes. I’m in far north Queensland, which is very different to Sydney or Melbourne. So, I think in particular for rural and remote women, there can be greater challenges because of more conservative beliefs and attitudes that we have in that part of the country.
Jane Ussher [00:18:48] That's something that really came out to me in our study, actually, Natalie. So that, you know that a number of people said living in rural communities where they weren’t out to the community and that they feared negative responses in health care that actually made it much more difficult. But on the other side of that, there were other people that said, actually, I live in a small community and I'm really supported in my community and everyone knows me. Yeah, and it's really fabulous. So it's yeah, but I think that's really important to think of the context that people are in and also the choice of doctor because one of the things we say to people is, if you if you get a negative response from a clinician, well ask for someone else to be referred to someone else, but if you live in a small rural community, then you've only got one doctor, you can go to or one oncologist, then it's much more difficult to shop around for services that are, LGBTIQ friendly.
Natalie Halse [00:19:42] Yeah, absolutely.
Kellie Curtain [00:19:44] Natalie, you've mentioned that you are in didn't have as much choice because of your location. How do you navigate that if perhaps you haven't had an ideal response from your closest health professional?
Natalie Halse [00:20:02] Yeah, my GP knows that I'm gay, and I think at that point when I talk to him about who I was, you know, in terms of the only option that I really had at that point in time, I did talk to him about how he felt it would be received if I needed to prepare myself. He felt it would be fine and in fact, it was. I think, what I would suggest for women who don't have that type of relationship is to actually have a point of reference where you can go to. And I think that's where BCNA can be really helpful because they have so many consumer groups and they have access to a broad spectrum of women with different backgrounds, different sexualities that they can always tap in and I think that is a really helpful for lots of different queries that women can have, is to actually go to a safe place.
Kellie Curtain [00:21:03] You've both mentioned it being somewhat a little easier and a little more fluid if you are in a relationship to take your partner to your medical appointment. And that's a very easy way if you like, to make it clear that you're in a same sex relationship. What happens to those who are not in a relationship? So, it's less obvious. Obviously, it's still possibly very important to disclose. What's a way to do that? Is it ahead of time? Is it by writing on a form, ringing ahead? How can we make that a little bit less confronting?
Jane Ussher [00:21:47] I suppose all of those things, all of the above. I think the ideal would be that it's on the intake form. So you don't. And that's what if we want services to be inclusive, we want it to be on the intake form. But we know that it's not on a lot of intake forms and that's something that we're really pushing for in terms of the outcomes of our study. And there are other people pushing for it as well. You know, cancer registries don't even collect data on LGBTIQ status at the moment. So, we don't know how many people there are with cancer from these communities. But you could get your doctor in the referral letter to, if you if you have a good GP and Natalie's given an example of a great, supportive GP, that could be something that the doctor your GP would say on your referral form to your oncology clinicians. The easiest way is to introduce your partner. That's what I do in my everyday life. It's just kind of easy. I'll just do it, and it's part of my life. But you can ask questions like, you might want to ask how my treatments impact on my sexual well-being. I'm not in a relationship at the moment, but I'm normally in relationships with women. That would be a kind of way of doing it so that you flood it without having to say I am gay or I am a lesbian, which is often is a kind of jarring thing to say in life. Most people don't know, don’t go around saying that to people, I’m sure Natalie doesn't go around saying it to people. You know, we've labelled ourselves in this podcast, which I think is important because it's so people know that we're both speaking from within the communities as well as working and doing research with communities. But it's not something that people normally do in their everyday lives in the same way, you know, heterosexual don't around labelling themselves. So, it's about finding ways that that are that are comfortable and make sense to you.
Kellie Curtain [00:23:38] Yes. And as you mentioned, sometimes it's actually it may not seem relevant at the initial appointment, but as your treatment and those side effects happen and you're making choices, they might be relevant, your sexual identity could be relevant to whether it's the reconstruction to have it to not and or other impacts. Natalie, do you hear from women? Do you find that they are less likely to want to disclose if they are single?
Natalie Halse [00:24:15] I was speaking to a woman recently and she didn't disclose. And she said it got to a point where it was really awkward for her because when she was having various procedures or examinations done that the clinicians would say, you know, how’s your husband feel about that? or and it was because she hadn't disclosed it got to that most critical point where she felt like trapped because if I now say I'm a lesbian, it sort of looked a bit strange to her that she hadn't said it initially, but she said every time there was a comment and it just seemed, you know, to build up that it got to a point where it was making her cringe because she didn't know how to deal with it because she'd let it go too late. So she really did regret and said at some point she actually said, Look, it hasn't seemed to be relevant, but I keep having comments made, so can I just clarify that, you know, I'm gay. So, I think that was it was an interesting thing because she actually didn't feel that it was relevant, but then found for her, it was.
Kellie Curtain [00:25:34] And particularly when there is ongoing treatment and care, like you said, Jane, that by not disclosing rightly or wrongly, people end up possibly assuming that you are heterosexual and therefore may be guiding you down or making assumptions based on the fact that you haven't said otherwise.
Jane Ussher [00:25:56] Yeah. And I think that's, you know, that's a great example, Natalie’s given, and that was a very common account in the research, that if you don't disclose, then most health care professionals unfortunately assume everybody's heterosexual and cisgender. And so, you know, make comments like, you know, your husband if its a woman in front of them, or they'll make comments assuming that you're having heterosexual relationships. If you if you're not in a permanent relationship and that actually is very jarring, it actually makes people feel uncomfortable. It makes them feel not seen. It's irritating. And to some people, it's really distressing to have those sort of assumptions made. And I think that's why it's actually for people who do disclose most people do it upfront at the beginning, rather than waiting to think, Oh, I'm only going to do it when it's relevant in terms of my sex life, relative my partner, it's almost easier to do it at the beginning. But with probably with ongoing clinicians, as we said earlier, you don't necessarily want to do it with everyone. You see a lot of people, a lot of clinicians, when you have breast cancer and some when you are seeing for a one- off blood test or a one-off scan, you're not necessarily going to because it's not relevant to this, Like Natalie said it would seem a little bit odd. But if you're going to be seeing someone on a regular basis. What we found in our research and what other people have found outside of the context of cancer and LGBTIQ health is that disclosure and disclosure early on is a positive thing in terms of how you are treated.
Kellie Curtain [00:27:33] Does it reduce the emotional burden too, like you're carrying some sort of secret around?
Jane Ussher [00:27:40] I think it can do as long as you have a positive reaction, and that's the key thing.It’s how does the clinician respond? And you can't control that.
Kellie Curtain [00:27:51] Feeling safe is really key to proper care and outcomes. So, what does someone do when they do receive a negative reaction from a health professional? What is you, your study found?
Jane Ussher [00:28:07] Well, what what the study has found is that people feel very distressed and often in the moment feel very upset. In terms of what you can do, you can ask to speak to someone else in the team. You can ask to be referred to another doctor. You can make a formal complaint. I think that if you feel confident and comfortable enough, you can say to the person in the moment, I find that offensive or that makes me feel upset, just in the sense of general assertiveness thing that can be quite hard to do. And that is often what we found in our research is that's much harder for younger people. And because they're not necessarily experienced with that. One of the things that's good to do is if you can bring, for lots of reasons in terms of interactions with health care professionals bring a support person with you because it's much easier to actually face a potentially negative response if you've got someone sitting there with you that you can, you know, your support person can then help if there is a distressing moment. We did find we did have, quite unfortunately, quite a lot of accounts of negative interactions with health care professionals in our study. In the majority of cases, I'd say it's because the health care professionals are not experienced in working with LGBTIQ people. They, in a sense without being too rude, are a bit clueless, they don't know what language to use. They're making heteronormative assumptions, assuming everyone straight, everyone cisgender and so they're kind of on a track, which means that that can be offensive to people and maybe feel a bit taken aback if someone discloses so they don't respond positively. And I think in the majority of cases, we found that once people had disclosed, the health care professionals were in places and we're okay about it, and sometimes they do ask questions that say, well, what does that mean? But we had other cases where people told us that the doctor would say, or the nurse might say, I don't see that's relevant. I can't see why it makes any difference, which can feel quite offensive to somebody. And in a minority of cases, but very distressing cases, we had really quite overt prejudice and hostility with people being told, I think, you know, your what you're doing is a sin, I don't want to treat anyone like you, I don't want anyone like you in my system. And that's very distressing to hear that people were told that by clinicians. And we also had many patients, or a number of patients said to us, I thought if I disclosed my doctor might not want me to live, I might not get care that's as good as another person. They might want me to die. And that's because of discrimination and experiences that people have had in life. And we certainly see a lot of that discussion out there in terms of very prejudicial views in the media around LGBTIQ people. So it's not that this is a fantasy, it's in people's imaginations. There is a lot of prejudice out there, so that can make it very fearful and very difficult. And then some people choose not to disclose because of that.
Kellie Curtain [00:31:29] Which all points to the positives and the real benefits of disclosing because it can benefit informed choices. But when you hear some of the reactions that people have reported, you can certainly understand why people are very fearful about doing that. You spoke to health professionals, too as part of your study. What has been their reaction? Is it is it ignorance? Is it fear from them that they actually don't know how to, like you said, use proper language or even that there are differences between treating a heterosexual person and a lesbian or any other sexual identity?
Jane Ussher [00:32:17] What we found with that, we surveyed over 400 health professionals and interviewed again, a lot of health professionals and what we found was that some people are very aware of LGBTIQ issues and are very inclusive and will have rainbow flags in their services. They'll have, they'll say, on their websites that they are LGBTIQ friendly. They’ll ask about partners rather than, say, husband or wife. But I'd say the majority actually don't see patients as any different to their sexuality, as they don't understand the differences. So that's something that we're needing to do in terms of educating health care professionals, and they also lack knowledge and skills because they're not trained in their basic training about LGBTIQ issues, the majority. So they said, we want more knowledge, we want more skills, we want more training in this area. We realised we actually want to be inclusive, but we actually don't. We haven't been trained in this. We don't know what language to use. And there's a small minority of those that we surveyed who actually were very openly prejudicial and hostile. But a large number of the people we did talk to, the health care professionals, had witnessed hostility and prejudice in their colleagues. So it is out there and I think we can have a positive story about being LGBTIQ, and one of the positives is actually having a woman partner. You're going to get much more support than having a male partner. Sorry to say that to people who've got male partners out there, for many reasons. That's maybe a whole other story. So that's a positive. And if you're confident in your sexuality and your gender identity, you’ll travel this journey with breast cancer as an LGBTIQ person with as much confidence and as much support as a heterosexual person, perhaps more support. But there are also negatives out there, and there may be prejudice. There may be difficulties, there may be discrimination. And I think it's really important to people who experience that, that to say you're not alone and there are avenues of support you can go to for this. And I think BCNA is a great place where you've got lots of resources through the My Journey website that can help people through what might be their difficulties, their experiences and said, You're not alone, there are people that you can talk to and actually to feel assured and positive in yourself that you deserve equal treatment within the health care system and you should not be discriminated and you can get another clinician and you can make it compliant, if you are
Kellie Curtain [00:35:04] Natalie, how do you make people feel safe as they start to go down that journey when they're disclosing or thinking about disclosing? Do you encourage them to do some research so that they don't get surprised by a negative response, whether it's looking for rainbow flags or actually doing some research on potential health providers that are inclusive?
Natalie Halse [00:35:38] I think in the larger cities, there would be through networks and BCNA would be aware of which surgeons oncologists are gay friendly. For others, I think a lot of it is about how, I talk to women about how they would have they would disclose. And what Jane is saying, I think its correct in my experience that all the women, we do have more confidence in ourselves. And it's it wasn't for me a question of how I would disclose. It was just that I was going to disclose. Whereas for a lot of younger women, I think there can be that lack of confidence in how to handle it. And I think that they need to develop a bit of a tool box just generally to get through that treatment because you're going to come in contact with a whole variety of different people while you're having treatment. And it's about how do you put protective measures around yourself if you're lacking that confidence and then what do you do if and when you experience it.
Kellie Curtain [00:36:58] What's in that toolbox, Nat?
Natalie Halse [00:36:29] I think BCNA is a really excellent reference point for people. And there are gay breast cancer support groups. So those sorts of groups and again, through places like BCNA. So I think it's having, you know, that single point of reference when you've got so much other things that you have to keep in your mind about your treatment and what you're going to. You know, it's it is a long time, usually, the treatment and then the follow up after treatment has finished goes on for a number of years. So it is, I think, just having a single reference point that you go to. And that's where basically, BCNA has lots of resources that you can use in that toolbox.
Kellie Curtain [00:37:51] And we also at BCNA have an online network and a specifically designated LGBTIQ+ community that is specifically for people that want to share experiences and maybe learn from each other. And, like you said, get some tools to help you navigate not just the treatment and care, but possibly also ways to respond to those that aren't inclusive.
Natalie Halse [00:38:25] I personally did not experience major difficulties. At at a time when you are very vulnerable, to make sure that you just have a few things that you can put away should you have a bad experience, so it doesn't become devastating because, you know when you are a patient in the system there is real, there's a real power in inequity between treating clinicians and a patient. And you're really stripped away when you're undergoing breast cancer treatment. You know if you've had a mastectomy, or you don't have any hair, you look at yourself when you get out of the shower. It can be quite confronting, so you are very vulnerable during that time, and I think it's just important to make sure that you wrap around yourself a bit of a security blanket to help you get through that tough time and not be alone while you're doing that.
Kellie Curtain [00:39:51] Jane, you mentioned the legalities. People have the right, everyone has the right to the same care, regardless of their identity. What should people do if they don't feel like they are being treated fairly?
Jane Ussher [00:40:16] Well, you can make a formal complaint to the hospital or the service that's treating you. And if you do feel that you've been discriminated against and I think that if people do experience the extreme hostility that we've seen in a small number of participants, I have to say in our study, then I think that's people's rights and you do have the right to ask to see a different clinician. And I think that you can also potentially bring, as I said, a support person with you who can who help you to deal with those sorts of issues. But I think, you know, I think what I would like to end on a more positive note on, I think, picking up on Natalie's experience that very high percentage of people in our study, and I think particularly women with breast cancer who identify as gay or lesbian, had positive experiences and said actually being gay or lesbian didn't impact to my breast cancer journey. It didn't affect how I see myself as a person, and I was able to be out with my treating team and actually got a positive response. And one of the things that I would really emphasise is that interaction with a clinician is an interaction. We bring something into interactions with clinicians and they respond to that. So going in positively as much as you can, going in confidently, this is who I am, this is my partner, I expect you to treat me with respect. I acknowledge my rights. Actually, you're more likely to get a positive response. And I think the clinicians do respond to that. It is an interaction between the two. And so I think that's why it is often easier for older, lesbian and gay women because they’ve been doing it all their lives and we've been doing all our lives and we expect to be, I expect to be treated equally for my relationship as my heterosexual friends. And I wouldn't countenance anyone treating me in a different way. And I do get treated equally, but for younger women, who may not be out in their lives. Their partners might not know, their parents might not know about their sexuality. It might be new to them. That's much more difficult. So I think that we need to, or maybe a woman who's come out much later she might have been married and in a heterosexual relationship and she's come out later so she's less confident.
Kellie Curtain [00:42:37] So it is about taking responsibility as well.
Jane Ussher [00:42:40] I'd hesitate about taking responsibility because it sort of puts it kind of puts a bit of an onus on that person with cancer. But it's about saying as much as it isn't necessarily a story of discrimination and difficulty and being treated badly. Those are some experiences, and it's really important to acknowledge that. But for a quite a substantial proportion of people in our research and particularly the women with breast cancer, it was, they said I was tricked. I didn't feel that my sexuality was an issue, but it was acknowledged by my physician and my partner was included, and I think it's important to say that is possible and that's a benefit really of coming out. You can actually make your cancer journey a little bit easier than if you feel like you're not authentic and your partner is not involved and you haven't got that support alongside you. And we know support is a really important part of cancer care. So really, it's in our research. Having good support was the biggest predictor of coping, of low distress. So, people who had more support had less distress.
Kellie Curtain [00:43:49] OK. And I guess if you can get greater support if people know how they can support you. And part of that is disclosure.
Jane Ussher [00:44:00] Yes. And also being able to have join LGBTQI specific support groups or lesbian breast cancer support groups. We know, and I've done a lot of research on that on support groups in general, and we know that support groups are a really big factor in helping people through a cancer journey. And so being in a support group of people who are like you who understand what you're going through is actually important.
Kellie Curtain [00:44:27] Natalie, have you found with those that you've dealt with when they have disclosed they do feel that they are able to be better supported?
Natalie Halse [00:44:38] Absolutely, because I think it's about being your authentic self. And I think you do when you disclose. You have that feeling of being more relaxed and because you do develop a relationship with the treating team you are probably going to see for at least the next five years if your life. And so I think from that that perspective, developing that relationship is very important. And if you're hiding something, you know, you don't really get to create their relationship.
Kellie Curtain [00:45:16] Thank you both Jane and Natalie. And for those listening, BCNA along with Natalie and Jane have developed some helpful fact sheets based on the Out with Cancer study. And you can find them on bcna.org.au. There you'll also find other organisations who can offer additional help and BCNA’s My Journey has a range of specific resources related to the LGBTIQ+ community and breast cancer. Sign up and visit MyJourney.org.au. And as we mentioned, if you'd like to connect with others going through breast cancer, we've created a platform specifically for LGBTIQ+ members to have these important conversations. You'll find it at BCNAs online network. This podcast was brought to you with thanks to Cancer Australia. Thanks for joining us. I'm Kellie Curtain. It's good to be upfront with you.
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