This second special episode of Upfront is in response to the constantly-changing coronavirus situation and the challenges many of our members are facing.

We’re joined by CEO Kirsten Pilatti and BCNA’s Director of Policy and Advocacy Vicki Durston, to discuss the rapidly-evolving coronavirus situation and the current state of play, provide tips for minimising risk for people with breast cancer as well as provide reassurance for people in our Network who have concerns about their treatment in light of coronavirus.

We take a deep dive in to how coronavirus is affecting people with breast cancer and offer ways that BCNA’s resources can help at this time. This podcast covers:

• Collaboration across the cancer community in response to the pandemic
• The opportunity that telehealth provides for those being treated for breast cancer
• Emotional wellbeing
• Financial support available

And much more.

RESOURCES: 

BCNA’s My Journey online tool

BCNA's Online Network

Upfront About Breast Cancer is a production of Breast Cancer Network Australia. Our theme music is by the late Tara Simmons. This episode is proudly empowered by Red Energy, who have partnered with BCNA to provide empowering information and support to help get our community through COVID-19.

Want to get in touch? Visit our website at bcna.org.au, email us at helpline@bcna.org.au, or call our Helpline on 1800 500 258.

 

Transcript:

Kellie Curtain [00:00:04] Let's be upfront about the coronavirus and people undergoing breast cancer treatment. This is another special episode of Upfront and is in response to unprecedented inquiries to the BCNA Helpline about COVID-19. Federal and state government measures to reduce infection in our communities is rapidly changing and BCNA is supporting members by helping them understand what it means for them in terms of risk, as well as keeping them informed about what's happening around treatment and surgery. Joining us today is BCNA CEO Kirsten Pilatti and Director of Policy and Advocacy Vicki Durston. And we're going to look at making sense of the latest information on the coronavirus in Australia, how to reduce the risk of infection, and also how to keep anxiety levels in check. Welcome to you both. K.P, there's still there's so much information and it's just overwhelming, isn't it?

 Kirsten Pilatti [00:01:03] It is it's a really challenging time for us in this country. You overlay that with someone who's living with breast cancer, being treated for breast cancer, and it is overwhelming. We know that. I think the most important message that we can give today is that this is only temporary. This is just a very challenging time in Australia. But we will get out of this. And sometimes I think when you think too far ahead, it's really, really overwhelming. I think that's the kind of sense that we're getting from our Helpline and the online community. But I want to reassure people that actually for the first time, there are many groups coming together to work together to ensure that the patient really is at the centre of the decisions that are being made. We are having daily teleconferences with other cancer organisations like Cancer Council Australia, like Cancer Australia. And I can assure you that everyone is working to make sure that we can maintain our services in this country to make sure that we have the very best outcome for cancer patients. And we're not going to be out to answer all your questions. I think that that can be really difficult to add. And you kind of see online people going, well, I wanted more detail, but the reality is everyone's individual experience is so different. So we need you to reach out to BCNA if you need help. In particular, our role is to help you navigate a very, very complex situation, but also it's important to have the strongest communication lines you can have right now with your treating teams. Give them time to be able to answer your questions and know absolutely everyone is doing their very best right now. And I think we've got to give everyone the benefit of the doubt, because for the first time, I can really see a much more coordinated effort for all cancer patients across this country. There always is a silver lining in these kind of challenging times. And I think for me, that is and we're going to come out the other end of the it's much stronger as a cancer community because we're going to really test what is the best treatment and care for all Australians. And I think we'll we'll come out of this better. But we just need time to get everything right for the patients right now.

 Kellie Curtain [00:03:34] Okay. So we're not looking too far ahead is your advice. Vicki, can you explain what the current state of play is and how perhaps it's changed from when we recorded our last podcast on coronavirus?

 Vicki Durston [00:03:51] Yes, certainly there are more concerns around people feeling fearful of forgoing their treatment or treatment options that might not be available for them. So we want to allay those fears, just to reiterate what Kirsten had said, that our health professionals are working extremely hard to develop processes and systems whereby they can work with patients. So, for example, where patients don't need to come into hospital, they can offer telehealth or options for FaceTime or Skype or ways in which they can prevent patients from having to come into hospital. So again, it's all about reducing risk so that there's some of the things that we're seeing a changing.

 Ad [00:04:43] BCNA's My Journey online tool 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 [00:04:58] Perhaps a lot of the anxiety that our members might be feeling is that it's all about COVID-19 patients, and what's going to happen to me? Has my treatment now, you know, fallen to the bottom of the heap. Am I now not the priority? .

 Vicki Durston [00:05:17] So Kel, we want to reassure people that that the key priority is our cancer patients' treatment. So although we can recognise that people are fearful of forgoing treatment, we know that treatment can be tailored or paused without causing harm. Our experts, our medical experts are doing their very best to ensure that that doesn't happen. So some of the examples that we can draw on are our teams are utilising telehealth where they can actually prevent patients coming into hospital and having that face to face consultation, that they can actually speak and consult with their treating doctor over the phone or via FaceTime or whatever that might look like, or WhatsApp; there's other options that they could utilise. We're also seeing that patients that are isolated or at home can actually source their prescriptions where they're being delivered or friends and family are able to drop them at the doorstep for them. So we're starting to see things that can be done outside the hospital to prevent people coming in where they could be at risk. However, we want to reassure people that those that are having active treatment will be able to seek active treatment. So chemotherapy, radiotherapy for cancer. The one thing that the health services are doing is things like preventing extra visitors coming into the hospital. So again, it's all about reducing risk and reducing harm to those in active treatment.

 Kirsten Pilatti [00:06:55] And I think it's really important for us to kind of say that this is what health professionals are usually dealing with. The "what is risk?" for a treatment against some other risk for a treatment. And so what this is really doing, is for a patient, they're truly understanding what a doctor and their clinical team are weighing up every day. So is it more important for you to come into the hospital to have your treatment delivered? Or is it better that we try and put you on to a different form of treatment that you can take orally? They're weighing this up and they're weighing it up together, in a coordinated approach. We've never seen it more important for multidisciplinary teams to work than what they are now. And if you are not being seen by a multi-disciplinary team, then you need to talk to your clinicians about that. This is where we're making really wise decisions as a collective because more clinicians around the table talking about your treatment options will definitely give you - research has been done a million times - it will definitely give you a better outcome. So if you're not in a multi-disciplinary team, we need to move you towards that. That's one very practical element and control that a patient can take right now. I think that you might not be having the treatment in the same place you were when where you thought when you're first diagnosed, you might not end up having your treatment there, but you're going to have treatment and people are going to look after you. And I think that's the most important message. And everyone's experience is going to be so different around this. There are many silver linings. I mean, we are finally going to be able to actually see hyper-fractionation of radiotherapy happen in this country. We've been wanting to advocate for this for such a long time. Coronavirus has actually given now the rad-oncs, the radiation oncologists, the chance to go 'yep, let's give a woman more dosage, but in a shorter period of time for the same outcome'. And we know that that improves quality of life. So I think there are going to be some really good outcomes that come out of this. But it's about being informed as the patient, asking all the questions, documenting your questions, maybe sending them through prior to your appointment so that you can really get some of those answers and knowing where to go to get the right information. So if you feel like you don't know how to navigate the system, call our Helpline; our nurses will help you to navigate through when and what questions to ask and who to ask. Because there are going to be answers. But one of the real big challenges is that the media is such a powerful tool to get information out, but it can also be very overwhelming and there is a lot of misinformation out there. So what we've got to do is kind of find that source of truth and I think that Vicki and had helped one team are a brilliant source of truth, as arer Cancer Australia and the Cancer Councils. So I think if we can just find that truth and know that hospitals are working to make sure that we can deliver treatment to those people who need it, then I think people will feel reassured by that.

 Kellie Curtain [00:10:09] I think it's also possibly an observation that people are not usually very good with change, but this is can be quite a positive change in telehealth. Even after corona, that reducing your risk at all as a cancer patient is a good thing. And Vic, our Helpline is now operating on extended hours?

 Vicki Durston [00:10:35] That's right, so the Helpline is now open seven days a week, where we have cancer nurses that will be offering support and they are certainly equipped to be able to deal with those that are facing distress and also fear. They're certainly able to support in navigating the system, like Kirsten mentioned before, and certainly be able to answer questions if you're uncertain. They are encouraging those that are calling in to actually be involved in that shared decision making; it's so important to evaluate risk. For example, if you're currently having chemotherapy, if you currently immunosuppressed, we don't want you to be if you're concerned about your symptoms, lining up at a fever clinic, at a public hospital. We want you to be able to utilise the information that we've got on our My Journey online tool, and also having those conversations with our nurses: how to navigate the system, should you be concerned about your symptoms or should you be concerned about new symptoms, so we encourage you to continue to talk to your team, establish your plans of care. So in the event that you are concerned about new symptoms, that you know where to go, who to call and what to do. And that's one of the most important messages that our Helpline nurses are providing at the moment.

 Kellie Curtain [00:12:05] As we are increasing our stay at home message right across the board and isolation from each other, that can affect people's emotional well-being. How are we to cope?

 Kirsten Pilatti [00:12:21] I think if you can go on to the My Journey online tool and read Carrie Lethborg's powerful tips and information about this, it would be really helpful for people. But you've just got to become as practical as you can. There's there's a lot of articles at the moment that are kind of circulating, and Vic, one we read today about the fact this is a grief. This is a world grieving and calling it out is completely okay, and we should. We have, layered on top of that, grief and uncertainty of life through a cancer diagnosis. So it it's completely fine and completely normal that our network would be more anxious and more unclear than ever before. What we need to do is say to them, kind of acknowledge it, know that this is only temporary, and then look for really practical tips that you can do. You know, if you've got grandkids that you can't see, it's heartbreaking for grandparents who have gone from seeing their grandkids every week to not being able to, then FaceTiming becomes really important, writing letters becomes really important, getting the grandkids to draw you pictures and drop them into the letterbox, really important. Just practical things that you can kind of feel a sense of gratefulness. And if you can do one thing that makes you a bit happier every day, it's true for all of us, if we can just find one thing then we will feel like we can get out the other end. And we promise you this is only temporary.

Vicki Durston [00:14:06] Talking about grief, we're certainly seeing lots of partners and carers calling the Helpline to talk about how concerned they are and also distressed, and it's not only because of risk of exposure, but the grief that they're feeling, that they can't go to that very first chemo appointment, that they can't be there to hold and hug their loved one when times are tough. So there's a grief of loss of that social interaction and that social connection of being distanced. So I think there's a lot to be said around that. It's so important from for friends and family to play such an important role during this time and utilising different techniques to stay connected, because I think it can become very isolating.

Kellie Curtain [00:14:57] We still have to heed the advice, though, don't we? So whilst we can acknowledge that it would be really scary to have to front up for chemo without your support person, this is the reality, is it not?

Vicki Durston [00:15:10] Yeah, and certainly we've seen with many patients and even those with metastatic breast cancer, they have learnt to be resilient at times and learnt to adjust to being isolated at times for their risk of getting an infection or their immune system is compromised. So, we want to acknowledge that a number of our patients that have been on long term treatments have been able to utilise some of these skills in the past. We want to learn from them because they can add so much value to to those that have not experienced this before.  

Kirsten Pilatti [00:15:51] Yeah, and I think it's important for us to know that cancer is not the whole of you. It's only a part of you. So, maybe find something that would will bring you joy. Like, I was talking to a woman last week who decided that she was going to learn to sing. So she put her headphones on during treatment and did YouTube surfing to learn how to do all of her singing lessons. And, you know, those kind of things bring people joy. So you got to find what the thing is that's going to bring you joy right now, if it's having more structure to your day, do that. If it's making sure that you spend more time with the clinician, let them know that that you need more time right now. But I think it's true to say that the telehealth announcements that the governments have continued to expand is something that our network should take advantage of. I think allied health and particularly access to counsellors and psychologists over the phone, it's really important that people access those kind of resources that we now have, which we've been fighting for over a very long time, that now someone can pick up the phone and call a counsellor or a psychologist and talk about how they're feeling. We should be accessing those as much as possible.

Vicki Durston [00:17:10] Absolutely. And I think going back to your team to find out how you can source those resources for you and also not only telehealth services, but also our online network. So if you feel isolated, you want to connect with someone, there's peer support in that element as well. But certainly having the acknowledgement of telehealth can offer support in this environment that we're faced with at the moment.

Kirsten Pilatti [00:17:38] And you'll be amazed how many allied health services you can access through telehealth. It's just because it's a different way. We have to think about the way we access services now.  

Kellie Curtain [00:17:48] And of course, the online network, as you mentioned, Vicki, has long been a source of comfort and great ideas for someone going through what you're going through. And it's operating 24 hours a day because there's always someone awake who wants to chat or have a laugh or shed a tear or can actually really say, I get it. I I know how you feel.  

Vicki Durston [00:18:12] Absolutely. And we do have our staff that moderate the online network, so we can certainly at times throughout the day answer questions, and there's certainly a summary of the week's discussion that is put on the online network as well, so it really is an opportunity for people to talk and to connect in a meaningful way.  

Kirsten Pilatti [00:18:35] You know Kel that my favourite topic is finances. And for anyone who hasn't listened to the podcast around the financial cost of cancer, you can go back to those podcasts and listen to me rave on about them. But at this particular time, when people are losing their jobs, when finances are becoming more and more anxious when people are becoming more and more anxious about finances, it is a really good job to give a friend who wants to help; to be able to go through and trawl through all the government media releases at the moment and look at what potential financial support you can access. And, you know, you don't have to do that alone, they're the kinds of things that people who want to help can do to help you. We can't stress enough: look into your insurances around your superannuation and really make sure that you are maximising all of your opportunities for financial support, because now more than ever, there's probably some good government programs that you can access. So if you have lost your job because of coronavirus, then there are ways that you'll be able to access government support. And so I think it's really important for people to know that finances do matter; they are extraordinary in the way that they impact relationships, in the way that they impact the way families are operating, so reaching out for help around the finances is really important.

Ad [00:20:21]  BCNA's Helpline is a free, confidential phone service for people diagnosed with breast cancer, their family and friends. Staffed by experienced cancer nurses, the team can help you with your questions, concerns and refer you to appropriate support. Call 1800 500 258. .

Kellie Curtain [00:22:42] Okay. So I guess the takeaway is whilst all the talk is about COVID-19 and how we're going to deal with the expected number of infections, it doesn't mean by any stretch that those with cancer and breast cancer have slipped down the priority list. It's just a case of working together so that everyone gets what they need.  

Kirsten Pilatti [00:23:07] That's right. And it is really important that people know there are lots of people working behind the scenes to make sure that your care continues and make sure that you are set up for the very best outcome possible, whether you have early breast cancer or DCIS or metastatic disease. Everyone is on the same page. We want to help you feel less alone. But I also want to say BCNA's role is to make sure that we are here for our network, for the people who have been diagnosed and affected by breast cancer. And if you are not experiencing care that you think is right, then we need to know about it, because once we know about it, we can then identify some of the issues that might be in the healthcare system. That has been the foundation of BCNA since we began in 1998 and it will continue to be. We are here for you, the people who've been affected by breast cancer, not for the government, not for the healthcare system, but for you. So if you don't feel like you're getting the best care, then we need you to call our Helpline on 1800 500 258 and talk to us about it so that we can look for some solutions, but also to let people know when the system isn't working because we can usually find a solution that many others can't.

Kellie Curtain [00:24:30] Thank you both. K.P. and Vicki and the entire BCNA team that are going above and beyond at this time for our members. Remember, BCNA's online tool is constantly being updated with the latest information about the effects of the coronavirus. It's easily downloaded on any computer or mobile device, you'll find it on my journey dot org dot AU. Our Helpline, as we mentioned, is also operating on extended hours to assist you, 1800 500 258. This special episode does not replace medical advice. So for any individual concerns that you have, please contact your health professional. I'm Kellie Curtain. Thank you for being upfront with us.