Navigating a breast cancer diagnosis as an Aboriginal or Torres Strait Islander

Kellie Curtain [00:00:03] Let's be Upfront about breast cancer and navigating a diagnosis as an Aboriginal or Torres Strait Islander. We know that cancer is now the biggest killer of Indigenous people and that Indigenous women are less likely to survive a breast cancer diagnosis than non-Indigenous women. Joining me on the land of the Kulin Nations, to unpack the additional challenges that First People encounter when navigating the healthcare system due to a breast cancer diagnosis, is Professor Jacinta Elston. Jacinta is an Aboriginal woman and has worked in the health system for more than two decades. She was diagnosed with breast cancer in 2003. She is also the chair of BCNA's First People's Advisory Group and deputy chair of BCNA's Board. A reminder that this episode of Upfront About Breast Cancer is an unscripted conversation with Jacinta. The topics discussed are not intended to replace medical advice, nor necessarily represent the full spectrum of experience or clinical opinion. Please exercise self-care when listening to the podcast as the content may be triggering or upsetting for some. Welcome, Jacinta.

Jacinta Elston [00:01:23] Thank you, Kellie.

Kellie Curtain [00:01:26] So, Jacinta. What are some of the barriers that Indigenous women face once they're diagnosed with breast cancer?

Jacinta Elston [00:01:37] Well, I think the key barrier, Kellie, that all Aboriginal Torres Strait Islander people face in general around the health care systems is about feeling safe in the system. And I think that would be true as well for Aboriginal Torres Strait Islander people who are diagnosed with breast cancer. So, what's important in that context is that to feel safe in the system, we need to be able to see Indigenous staff in the system. We need to know that there is a sense that the system has an understanding of the barriers that we might face in accessing it, and that regardless of where we come from, of course, because we're very diverse groups of people, we're not just one homogenous group of Aboriginal or Torres Strait Islander people. We come from different backgrounds, different areas of the country, some very remote, some very regional, urban majority, urban, in fact. But nonetheless, we all come to our interactions with a very different set of experiences and understandings of the knowledge of the health care system and the way that we're engaging with it.

Kellie Curtain [00:02:49] Okay, so. The challenges or barriers to receiving the best care for Indigenous women would be distance, language, cultural differences and interruptions to treatment for various reasons. What are some of the ways that we can either calm that or help Indigenous women to feel supported to overcome these barriers, for instance, with distance? Is it because Indigenous women have so far to travel that sometimes they don't do it or they don't do it with a support person? What are the practical ways that we can support women when distance is an issue?

Jacinta Elston [00:03:47] Kellie, look, I think the other the other area that I would add or the other issue that I would add to that list that you've just given as barriers would be finances as well. So, I think, you know, the critical piece about engagement with the health care assessment system of being able to engage it is having the right support around you. So, whether we're talking about somebody coming from a regional or a very remote sort of community into a cancer care service or whether we're talking about somebody who's in an urban setting, who's accessing the service, finances does still become actually really quite important. Finances will impact on whether the person has to come by themselves or whether they can come with somebody else in the family to support them. And that, you know having that capacity within the system to be able to support that is really important. And I know we've got, you know, those sort of services that sort of patient assistance sort of program in most of the health care systems across Australia that will allow a family member, for example, to travel with a patient. But sometimes there are significant barriers around the way that that actually plays out. And we do need some flexibility in that for Aboriginal or Torres Strait Islander patients. I think, again, coming back to that notion of the safe sort of environment, having an Aboriginal and Torres Strait Islander person in the system on both ends is really important. So, both from whether you're in western Sydney and you're predominantly accessing an Aboriginal medical service through to the cancer care service that you're going to be accessing in Sydney, having an Aboriginal health worker on both ends to help navigate becomes really important. Too, if you are in the Torres Strait and you have to go to Cairns and Townsville for cancer care, again, having an Indigenous person who's in the system on both ends to help navigate that is really important. And I think that is the most important thing is having safe space for Indigenous mob to come in and out of our services.

Kellie Curtain [00:05:57] Right. So that is the first point of call, is to find someone that you trust; a designated person within the health system. What if you don't have that? How do we help women and men who are diagnosed to ensure that they've, in an ideal world, they have it. How do you get one if you don't have one?

Jacinta Elston [00:06:20] So, again, let's say that you are not somebody who's coming out of a service or coming out of a general practice type service, an Aboriginal medical service, for example, where you're getting good primary health care service that's sort of set up for Indigenous mob. So you might be coming through a general practice and you're not necessarily identified as an Indigenous person in that system, but you've got a referral to turn up to a cancer service. I guess what becomes really important is at that point of care, when you turn up to the cancer service, that they're able to somehow identify you as an Aboriginal and Torres Strait Islander person. So we've got a lot of work and this still is a lot of work going on, on Indigenous identification in patient health care systems. And that requires our people behind the desk to be able to be really comfortable asking the question of all patients, are you an Aboriginal or Torres Strait Islander person? And you could imagine that if you've got a very small percentage of Indigenous people have access in service to have to access to the greater majority, many of whom will not look Aboriginal or won't appear Aboriginal, becomes a daunting task for the person behind the desk. So they don't tend to ask it. And that is one of the ways that we miss people. So, for example, here in Melbourne, when I go into Peter MacCallum, they've got Aboriginal and Torres Strait Islander flag image behind the reception desk, they've got the Aboriginal Torres Strait Islander flags. There is a possum skin cloak in the reception area. All of those things are sort of signs of the health care system, that Peter Mac is putting in place to try to say we are friendly towards Aboriginal or Torres Strait Islander people. Please let us know if you're here. And I guess that's the most important thing, that if the environment and the health care service providers are gearing their mind to the fact that although there a small population of the people that they can provide care to in any given year, making sure that the system at least reaches out to make Indigenous people feel like it's OK to identify in the system is really important.

Ad [00:08:31] Want to connect with other people who understand what you're going through at any time of the day or night? BCNA's Online Network is available for people at different stages of their breast cancer journey, as well as family and friends. For more information, visit BCNA dot org dot AU forward slash online network.

Kellie Curtain [00:08:54] So would the message then be, even though sometimes Indigenous people feel hesitant to declare that they are Aboriginal or Torres Strait Islanders, that it's actually really important they do so that they can get that connection with the right people to ensure that they go down the right pathway to observe their cultural sensitivities.

Jacinta Elston [00:09:21] Absolutely and I think one of the things that people can do is if they are at a health care service and it doesn't even matter what sort of, specifically we're talking about cancer, but these are system wide issues. So if you're fronting up to a cancer care service and you're at the reception desk when they're asking you to fill out the paperwork, you know, you get the opportunity to say if you're an Aboriginal and Torres Strait Islander person, if they don't ask you the question, you can say I'm also Aboriginal. If you've got that down, if you don't have that down could you list it and is there an Aboriginal health worker or an Indigenous liaison officer who I can be connected to while I'm a patient of the service. I think that is probably one of the most important questions that an Indigenous person could ask right at the beginning of their treatment or their interaction journey with the health care system. I think it's really important that Indigenous people out there know that we've come a long way. When I was diagnosed with breast cancer, although it was many years ago now, nearly 18 years ago, and I had a serious case of breast cancer, a very significant tumour and I got cancer care in a regional setting, and I got a good regional care cancer services at the time that I did. What was really different, I think, is what's really different now, sorry to back then is that all of our cancer care services around the country have been thinking more and more about what it is to provide good quality care to Indigenous people. We've had a huge amount of work that's come out of Cancer Australia that has looked at what does optimal care look like for Aboriginal and Torres Strait Islander cancer patient. And that's been really important that that work gets pushed out to the cancer care services. So I think it's important that Indigenous mob out there know that these services nowadays are very much thinking about how to provide good quality care to Indigenous people if they know that there's an Indigenous person in the service, asking for - just saying that you're an Indigenous person in the first instance, I think means that they then know a subsequent set of things that they can put in place that will be helpful to help the journey for you through the system.

Kellie Curtain [00:11:45] Such as what?

Jacinta Elston [00:11:47] Well, for example, family conferencing, for example, might be something that might be dialled up for an Indigenous patient, more so than it might be for a non-Indigenous patient. So we know that Aboriginal and Torres Strait Islander mob often need to have more family involved in the discussions and the conversations around what's happening to them, particularly at different parts of the journey. And so that might be something that becomes really important, that you might have somebody being seen in a cancer care service, but be able let's say, for example, if we go back to that example of the Torres Strait, that somebody might be in Townsville, but that the clinician might also link back to the Thursday Island Primary Health Care Centre for a family conference conversation at the same time, so family can join from the Torres, Thursday Island Primary Health Care Centre into some type of Zoom type arrangement, telehealth arrangement, whilst their loved one is sitting in Cairns or Townsville with the clinician, the oncologist talking about the cancer journey and so both groups can be supported. That type of cancer care might not necessarily happen or even be offered to a non-Indigenous patient.

Kellie Curtain [00:13:06] Language is also a barrier, not only just different languages within communities, but I'm talking medical speak quite often that can be overwhelming for anyone with breast cancer, regardless of language, medical speak can be really daunting. What are some of the tips that you could give to Indigenous people when that's their situation, that they're being inundated or overwhelmed with medical speak?

Jacinta Elston [00:13:44] Well, again, I think that's where having access to that Indigenous liaison officer, the Indigenous health worker, becomes really critical for them. Look, you know, if they're not by themselves, it helps a lot. If there are other family members also hearing the story of what's going on, that will help because they'll be different levels of sort of capability amongst different family members. And so between them, they can put the picture together, particularly if you don't have that Indigenous liaison officer. I've seen the best case scenario is where an Indigenous liaison officer is in the room or Indigenous health workers, in the room with the patient, the family member and the clinician. And then after that appointment, they'll go back out and they'll sit and they'll re-work through it with the Indigenous liaison officer to say, OK, what didn't you understand? What didn't you hear? So often in a busy cancer care service you might not be able to get the clinician to spend a lot of time on that, although I have seen them spend more time to be able to then have a second person do it. And in the absence of an Indigenous health worker, it might be a clinical staff and a nurse who nurse practitioner who might sit with the family and really try to make sure that they've understood the story of where the person's up to and what's going to happen from this point on.

Kellie Curtain [00:15:06] And of course, BCNA has got our nurses, our trained nurses that can be called to explain any  medical jargon to help people's understanding and demystify a bit.

Jacinta Elston [00:15:23] So that's often calling the Helpline, talking to other Aboriginal people who've had cancer and breast cancer is really important.

Kellie Curtain [00:15:35] Yeah, and we know that's really important too; not just its Indigenous and non-Indigenous people, that one person's experience will benefit someone else's journey as they move forward. And we also, BCNA has a dedicated discussion group, online group specifically for Aboriginal and Torres Strait Islanders with breast cancer to connect and share those stories and seek support. What role do you think that survivors do have? I mean, you had, as you've just mentioned, how important it was for you. But for someone listening to this, they really have the opportunity to not only take something for themselves from it, but to help others.

Jacinta Elston [00:16:23] Well, absolutely. I mean, when I was diagnosed, I was 33. My second child was 10 months old. We didn't have online networks and we didn't have Facebook groups and things like that. And so, you know, I think for anybody who's going through this sort of journey now, reaching out to Breast Cancer Network Australia, to the Indigenous Online Network group, it would be a really important opportunity to just connect. It's a space where you can just yarn about the stuff that worries you, that you won't tell your family as well. I mean, we talked before about the sort of the women's and the men's business stuff. And part of that women's business stuff is that ever that additional layer of care and nurturing that Aboriginal and Torres Strait Islander women provide to all women, but in Indigenous context, the role of the Indigenous matriarch or that of any family and the role that they play in supporting not just their own immediate sort of family in a non-Indigenous context, that sort of nuclear family, but the extended family's beyond it because that's really quite important for our mom, is that sort of broad kinship relationship and so you can have responsibilities both to generations below you, your nieces and nephews and others, to the generation beside you, your sisterhood, your cousins, sisters, your sisters, but also to the generation above you, your aunties, your mother, your grandmothers. And so when you're sitting in that place as an Indigenous person who's been diagnosed with breast cancer, you know, you're going through that experience yourself. You're supporting your own nuclear family, but you're also connecting out and supporting that broader family who are all very much reaching out to you. And they want to help and they want to know how you're going, but you feel a responsibility to make them feel like you're okay. And actually, the Online Network becomes really important because it's a place where you can say, actually, I'm not okay. And there are cases where you'll be able to do that with your own family mob, I'm not saying that they won't support you that way, but often you'll be the person who's trying to uphold everybody else and let them know you're okay. The Online Network is a place where you can just be not okay and ask the questions and ask the tough questions, too, or just watch the conversations that other people are having and contribute what you want to contribute, but also be able to draw from each other. I think that's one of the biggest things that's become really important from the BCNA work over the last couple of years is the development of the Indigenous network of women, predominantly women who are breast cancer survivors, talking about where they are, where they're up to in their journey, but drawing strength from each other and sharing with each other in a different way to the way that we might not have from the others who are close to who we love and who love us.

Ad [00:19:21] BCNA's My Journey is a new resource that gives instant access to trusted and up to date information which is relevant to your breast cancer journey. For more information, visit my journey dot org dot au.

Kellie Curtain [00:19:35] Let's talk about the realities of interruptions to treatment. For whatever reason, it's not unique to Indigenous women, but sometimes because of distance, because of other events in your life, there is the necessity or the very strong desire to put something before your treatment. And with Indigenous women, that is sometimes necessary. Can you speak to some of that and ways for women and men to do it properly rather than just stop treatment?

Jacinta Elston [00:20:16] Yeah, look Kellie I think that's really important. The there is always very significant family and community responsibilities that Indigenous people are often holding, that will mean that going through a treatment system or a journey of treatment in a very direct way for some won't be easy. And we certainly know that for people from rural remote areas, that is much harder to do to not have interruptions to your cancer care because of things that go on and some of the really important pieces that will happen that might impact on the sorry business inside of our community and your own cultural and family responsibilities during sorry business, somebody else, other community pressures or business that's going on my impact on your ability to be able to continue your own care. And so those things will happen. And whilst the optimal care for you as your clinicians and your care team will tell you is that you should continue straight on through the treatment journey that they've planned. At any point, if there becomes a chance that you think you're going to have to stop treatment or that you're going to have to interrupt your treatment because of your own family or community responsibilities, the most important thing that you can do is talk to your health care service providers. And again, that's where the role of the Indigenous health worker or the Indigenous liaison officer become really important. And, you know, I'm thinking of a place like the Ellen Walker cancer care service in Darwin, where they'll be dealing with a lot of mob from remote communities, particularly, who will have very strong community ceremonial responsibilities, who it would be very easy, I'm sure, for them to see people who have requirements or responsibilities that require them to interrupt their care and potentially put at risk the ongoing kind of commitment to their care. And so, you know, my encouragement to anybody who's in a situation where something's likely to interrupt their care is to just keep talking to your care providers so that they can work around it with you as best they can. You know, if at the end of the day the decision is made that you want to go home, working out with them what that looks like and making sure that you and your family understand the implications of that is really important. But in many cases, it might be the case that a clinician or team can help work around it. You know, people being away from country for long periods of time, which is what cancer care often is, will have a huge impact on somebody's mental health during a cancer journey. And, you know, not being able to go home, not being able to go back on country, being in an alien environment, all of those things will impact on somebody's mental health. And so that's probably the most important thing, I think, is that they just keep talking to those people who they feel safest to talk to about what's going on. And, you know, if there is a way to find a solution to disruption, to care and interruption to care, to then go home, come back. And that's the best examples I've seen of it where people will, OK I can't do, I need to be home and I need to be home for two or three weeks. What can I do? But I will come back or that family know, yes, they're coming home, but they need to come back. Some time some of those pressures will come from people at home because they understand the role and responsibility from a cultural point of view that somebody has at a time of sorry business or a time of ceremony. But if that mob at home can be brought into the picture and be included as a part of it, maybe there's a way that they can navigate through going home, doing what they have to do, and then coming back again kind of needs communication on all sides. And that's where both the cancer care service and the home health care service really need to be involved from a point of view of having great cancer communication that is culturally safe.

Kellie Curtain [00:24:43] Yes. And I think the overwhelming message there is don't just stop on your own decision. Speak to someone about it so that it like you said, it can be managed, it can be incorporated and planned for instead of just dropping out of the system and then worrying and having those worries later as to why people are worried about why you haven't turned up.

Jacinta Elston [00:25:08] ... Sorry or that the service is chasing you and you're disappointing them, that's the other thing. But it's really about you being supported for the decisions that you need to make with as much understanding and awareness as possible.

Kellie Curtain [00:25:23] Which, again, the Online Network would be amazing for that. You can learn from others, how they managed it when it comes to those sort of significant cultural events, how it can be managed.

Jacinta Elston [00:25:38] Yeah, absolutely. And the people who are on the Online Network, apart from being breast cancer survivors themselves or people who are going through breast cancer journeys, are also people who are you know, they might be health providers some of them, they might know the health care system. They might know about different things that you could access from community services, or from other places or from the Cancer Council, like the information that they can share about, you know, where you might be able to find financial help, where you might be able to find a place to stay, things like that. You know, I think you'll get you'll see that there's a lot of information that mob are sharing on the Online Network. I think the biggest thing that I could see through the Online Network is just that sense of hope that is built up, you know, for each other and supported and that acknowledgement of just a shared consciousness about what this experience is. That's the probably one of the most important pieces of that. The other thing is there's the other tools, like the My Journey online tool, and being able to have in your line of sight what the journey should look like is really important.

Kellie Curtain [00:26:54] What are some of the other cultural overlays that we see?

Jacinta Elston [00:27:01] Look, I think there are different overlays at different stages of cancer, experience and interaction. And we've seen really amazing work happen over the last decade or so around considering what does good quality palliative care service look like for Indigenous patients. And, you know, it is different. It is different. And, you know, having having seen and experienced this myself with family and loved ones, you know, again, my experience comes from north Queensland, from Townsville, and I think about the Townsville palliative care centre and the times that we've had mob in there and the staff have just been able to be very accommodating of the of the cultural needs of the families in the community. So that might be, you know, trying to put an Aboriginal patient in a particular part of the centre where family can come and go with a lot of ease, where there's going to be less disruption to other people, you know, opening up the rules so that you can have more people coming, that, you know, you can do different types of things. The most important thing in that sort of end of life care is actually for us, we've got this holistic view of life and life continues on. And this is about how we send somebody onto that next pace of that journey, the next phase of the journey. And there's a whole lot of protocol depending on where you are in the country. There are different protocols for that. And so, again, for the person who comes from, you know, remote Western Australia and north west, north west Australia, that's really critical maybe for them to go home. And so what is going home mean for them leaving a large cancer care service? How do you transition them? How do you support them? How does a local health service support them? All of those things become very different, maybe to what we might see in a Sydney or Melbourne or Brisbane in a large palliative care service. So I think that's where we see the different layers. Cancer Australia again, did some great work on this optimal care pathway for Aboriginal and Torres Strait Islander people. And one of the things is, you know, the key piece about that report and that piece of work that they did was that that work is really about the health clinicians, the health services, knowing that at every stage of a cancer journey, there are various layers of additional care and cultural context that need to be considered. To accompany that, Cancer Australia also put out a flyer; it's on their website. So if anybody is listening, who wants to they should look at the Cancer Australia website, look for what to expect Aboriginal patients, and you'll find this great flyer which talks about if you're an Indigenous person, what should you expect from the cancer care services? And it lines up to what cancer care services are saying Aboriginal and Torres Strait Islander people need. And so I just really encourage people to look at both of those, whether it's possible. The flyer is very much a kind of grounded layman's document, and it's meant for community mob to be able to walk over, walk through and understand and have conversations with their family.

Kellie Curtain [00:30:49] Yeah, I mean, the health system has clearly come a long way to nurturing and supporting Indigenous people, but so often we don't know what's out there, which makes it even more important for people to connect with their advisor or their health professional to find out exactly what is available to them, because it's it's getting better. It's come a long way. You, as the chair of BCNA's First Peoples Advisory Group, have been part of many changes. What are the priorities for the group now?

Jacinta Elston [00:31:31] Look, so I mean, I think one of the things that we really try to focus on in the coming year will be recovering lost ground - COVID-19 has had significant impacts for, you know, our whole kind of life, for every aspect of life in Australia, particularly here in Victoria, where we've been in lockdown for much longer. One of the big impacts that has happened has been that many people might not have sought the care that they needed to seek as early as they needed to seek it during this lockdown process or during this COVID-19 year. And so, you know, advocating and supporting people to get back into health care service systems, to go back, look for the help that you need, re-engage the health care system. Those kind of things will be really important. We want to do more work as a group on what does cultural care look like. You know, we've done these other projects through BCNA, so there's been a weaving project in Queensland where breast cancer survivors sitting around together weaving for culture is health culture is healing, the cloak that's at the Peter Mac service here in Melbourne came from one of those projects. So we're very keen to look at how can we expand that type of work. So, you know, women and men affected by breast cancer who are Indigenous, coming together, sharing their stories, creating their own sort of face to face networks where possible. But I think strengthening that Online Network will become one of the things that we really need to focus on. The other thing is just how do we get more of our own Indigenous survivors together? How do we help spread the word that they're not alone? And how do we make sure that we're connecting them more and more to the other resources of BCNA and also working with the team at BCNA to be clearer about where the other services that we've got might need some refocusing for an Indigenous audience.

Kellie Curtain [00:33:53] Absolutely. And above all that, no one has to do it alone and there are many services and many more services that will be available to support anyone who's been diagnosed with breast cancer. Jacinta, thank you for joining us on Upfront.

Jacinta Elston [00:34:12] Thank you very much, Kellie. And to all the sisters and brothers out there who might be listening, I wish them well.

Kellie Curtain [00:34:20] Thank you, Jacinta. This podcast was brought to you with thanks to Dry July. Don't forget BCNA's My Journey online tool has a range of resources available for First Nations people living with breast cancer. With thanks to our First Peoples Advisory Group, we are constantly updating specific and relevant information and support services for those who identify as Aboriginal or Torres Strait Islander. BCNA's Online Network, as we mentioned, also has a dedicated discussion for Aboriginal and Torres Strait Islanders with breast cancer. To sign up for the My Journey online tool, visit BCNA dot org dot AU, or call our Helpline on 1800 500 258 and the team will assist you. I'm Kellie Curtain, thanks for being Upfront with us.