Let’s be Upfront about where we’re at with COVID-19 (coronavirus). With restrictions beginning to ease in some parts of the country, we’re taking a good look at the current situation and what it means for people at different stages of their breast cancer journey.

In this episode, we’re joined by BCNA board member, surgical oncologist and specialist breast surgeon Professor Bruce Mann, as well as BCNA CEO Kirsten Pilatti.

This episode covers:

• The anxiety many women are experiencing about heading back out in to the world as COVID-19 restrictions start to ease 
• The importance of still accessing treatment, seeing a specialist, getting a mammogram, consulting your GP or generally accessing care if you have any concerns
• The benefits, challenges and risks of telehealth, including when to access services via telehealth and when a face to face appointment is more suitable
• Reintroduction of elective surgery and what it means for women waiting for breast reconstructions
• The optimal care pathway and its importance in guiding breast cancer care before, during and after COVID-19

RESOURCES:

• My Journey online tool coronavirus hub
• BCNA Online Network

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 empowered by Red Energy. 

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 life on the other side of coronavirus and what it means for people with breast cancer. This is another special episode of Upfront and we're going to address some of the concerns many might have as federal and state governments begin to ease restrictions that were put in place to reduce the spread of COVID-19. And whilst it's good news that our lives are on the way to hopefully returning to some sense of normality, there is still a lot of uncertainty and perhaps even increased anxiety for those having treatment or women planning to have breast reconstruction. Joining us is BCNA CEO Kirsten Pilatti and BCNA board member, surgical oncologist and specialist breast surgeon, Professor Bruce Mann. It's quite a mouthful! What a man, what a man.

Bruce Mann [00:00:51] What can I say, well, what can one say?

Kellie Curtain [00:00:55] Well, firstly, you can start with perhaps talking about what are some of the concerns that women having treatment or considering surgery are feeling as we start to come out of lockdown?

Bruce Mann [00:01:10] You know, these these are really good questions. I might start with the biggest concern that I have, which is that there's a level of of a certain amount of fear  about the health system out there. This has been seen in various areas. Emergency departments are reporting fewer presentations. Cardiologists are reporting fewer people presenting with heart disease, acute heart disease. And certainly at our site, we have noticed fewer people presenting with breast symptoms that may be breast cancer. And we've had a reduction in the number of cases of breast cancer that we've been operating on and treating. I think it's understandable. Early on, the message went out that we we had to stay home. That was a good message. The message was that we were concerned that the health system would be overwhelmed. Fortunately, that hasn't happened. And I think that there are probably people out there who have a suspicion that they should see their GP or they've been told that they should have a mammogram or they've been told they should go along to see a specialist and they haven't done it. The biggest message I have is if someone is in that situation, it is safe to do it. And please do it because our system is coping very well. We have the capacity to continue to deliver top quality care, but we need those people to come along to be diagnosed and start treatment to do that. So it's slightly different from what you said, but it is the thing that's on top of my mind right now.

Kirsten Pilatti [00:03:01] And I think that the role that everyone listening can play, because quite often we're talking directly to people who've been diagnosed, is that they can play a really important part for us to get out that public message of that, if you do see or feel a change in your breast, then encourage your family and friends to get to your GP. And we know that women put their health last. And this will be a very good example of women worrying about everyone else except themselves. And right now, the only reason to leave home is to go and have any symptoms or worries checked by your GP.

Kellie Curtain [00:03:40] So this is also for women, both that might for a first time detect something unusual, but also fear of recurrence?

Bruce Mann [00:03:49] Absolutely. Many you know, the reason that people, women who have had cancer continue to go to the doctor to get a check-up is because things can occur. Fortunately, they don't happen very often. But if someone has been through cancer and has a symptom that needs to be investigated, has a lump or a new pain, she must seek care. Now that care, the way it's delivered, might be a little different. It might be a phone call. But in the end, hospitals are open, clinics are open. We are seeing patients and we can we can deliver the care that's needed. Yes. Emphasising the point.

Kirsten Pilatti [00:04:27] And I think for people who are on treatment, any changes in temperature or anything, you must activate your care plan. And if you don't have a very clear plan with your health team, then you need to call them and put one in place.

Kellie Curtain [00:04:45] So telehealth is one of the things that has been expediated with COVID-19. Could we see that  as a silver lining of this? And do you think it will continue?

Bruce Mann [00:04:58] I think it is, yes. There is no doubt there is a silver lining there. There's no doubt that much of the medical care that's delivered to breast cancer patients and others can be effectively delivered without an in-person consultation. We have to be very careful about it. Not everything can be delivered by telehealth. And somehow we need to be sure that, you know, the care that's needed is delivered. I think that the woman who is is very happy that there are no problems at all. She's on her medicine without side effects. She has felt no lumps. She has no new symptoms. She has a mammogram. It's normal. That can be delivered over telehealth. The woman who is struggling either with symptoms, with the psychological impact of the treatment of a fear or concern that something might not be right, she must still see the doctor. So there is a definite silver lining. One of the jobs that we have and I'm sure BCNA is going to be able to help with this, is to work out for whom telehealth is better and who should still have the have the traditional approach.

Kirsten Pilatti [00:06:22] And we are saying when we work with other cancer groups and in fact, other chronic illnesses, there are some definite challenges in telehealth. And yes, we have advocated for telehealth for a long time and we are seeing some real benefits in people being able to get quick information over the phone and access to their health professional. But we also know that there are many challenges for the older patients and also where cultural and linguistically diverse communities. So where we're having some translational problems. And I think that what this time has provided us with is a very good snapshot of what are the benefits of telehealth and what are some of the challenges and risks that we need to mitigate if this is going to continue going forward. I think everyone BCNA has just written some consumer tips that's on My Journey online tool to help you prepare for telehealth meanings. But we have also written to all cancer centres to say we do not want information being delivered to a woman over the phone like a breast cancer diagnosis. That would simply take us back to the 90s where it was acceptable behaviour. It is not okay to tell someone that their cancer has progressed over a telephone or that they have breast cancer. And so we want to work with the healthcare systems to say these are the parameters that you need to deliver telehealth in. And yes, it absolutely can be a fantastic source, but it still has a lot of work that we need to to be working with the system on. And the other real silver lining we've seen in telehealth is around the GPs. And I think COVID-19 has allowed us to say the very important role that a GP plays in a woman's diagnosis, or a man's diagnosis if you have been diagnosed and do not have a trusted GP. It's the most important step you can do very early on is to find a GP that can work with you and actually help you navigate the system as well.

Kellie Curtain [00:08:34] With restrictions starting to be eased a bit and in varying degrees around the country, is it right that there might be an increased anxiety because more people are going to be out and about? And some women may be a little bit anxious about leaving home, whereas before they've been receiving everything by either telehealth or have been truly isolated because they want to protect themselves.

Kirsten Pilatti [00:09:02] I think people will need to consider their own individual situation before changing or unlocking themselves, if you like, because everyone's situation is going to be different. And there is no doubt we have not eliminated COVID-19. So people are still going to need to minimise their risk, social distancing. As you know, we we are allowed to have more freedom of movement, but also about being really clear with family and friends about helping you stay protected during this time, you are still going to be at an increased risk. Those people in treatment still need to take really good care of themselves, and that includes the people around them as well.

Bruce Mann [00:09:48] Well, one of the things that people will notice when they do venture out is that that it is not business as usual. Waiting rooms in GP surgeries, in radiology departments, in hospitals are very empty. There's a lot of temperature checking going on. So great care is being taken to make sure that people who are sick don't inadvertently go. Staff are being encouraged not to attend work if they are at all unwell. So it's not possible to completely eliminate any risks. But these places are far safer than they used to be.

Ad [00:10:31] 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 help you navigate through your breast cancer journey. Call 1800 500 258 surgery.

Kellie Curtain [00:10:53] Elective surgery...Different categories are now being reintroduced. Where does that leave women wanting delayed reconstruction or immediate reconstruction as part of a mastectomy?

Bruce Mann [00:11:09] So overall, during this time we've been fortunate that we have not ever stopped the category one, the most urgent surgery, the surgery for cancers. In other places, it's quite different. Colleagues from the US and the UK have been delaying surgery by whatever means possible. We haven't had to do that. The big changes have occurred or the restrictions have been around reconstruction, as you point out. And initially there was some confusion around it. In some places, all reconstruction was ceased. At our site it wasn't. We were still doing an occasional immediate reconstruction for a woman with cancer; that's now generally available. So where previously immediate reconstruction was appropriate and available, I think it's being done. I obviously can't check everywhere. The area that will be probably last to come back is the delayed reconstruction. So that's the woman who's had a mastectomy as part of her treatment. Treatment's complete. She's well and she's decided that that she would like to have a reconstruction and is on the waiting list for that. In the category of category one, two and three with one being the most urgent, those procedures are category three and I think they will remain category three. So they're not being done. And until there are substantial changes, I don't expect they will be. From a what's most important for our health system to deliver, I agree with that from the the BCNA point of view, we and others have put a huge amount of work into making that available. And inevitably, the waiting lists, the queues getting longer. That's something that we will have to address later on.

Kirsten Pilatti [00:13:11] Yeah. And it's something that we will continue to monitor. And I would really encourage anyone listening to let us know where they may be having problems. I mean, we were experiencing a few years ago up in Far North Queensland waiting lists that were well over five years, which is completely unacceptable. It's unacceptable within the guidelines of of Category 3, which is that you will have your surgery within 365 days. But it is completely unacceptable to us. And one of the challenges is going to be this new normal that we are going to experience. We need to really, as BCNA look at where reconstruction fits in with the support that women need, post a breast cancer diagnosis.

Kellie Curtain [00:14:00] So for those women, particularly in north Queensland, where the delay was extensive anyway, we have no idea how far that's going to be further pushed out as a result?

Kirsten Pilatti [00:14:11] No, but we are putting things in place to be able to measure, some of that, so that we can feed back in to the health care system in real time. What are these delays? And you know, I think no one would question that people with a cancer need to be prioritised over reconstruction. But we absolutely know for some women to be able to move back to life, post the diagnosis and reconstruction is very important. And we have never agreed that it should be considered elective. But we need to be pragmatic about what it is that can and can't be done in the health care system, given COVID- 19.

Kellie Curtain [00:14:54] What about allied health? Are you encouraging people to still use that now?

Kirsten Pilatti [00:15:00] Absolutely. And I think one of the advantages of telehealth now is that some of the psychological support means that you can actually gain access to people who are specialising in cancer, who might not live around the corner. So people need to really think about the benefits of being able to access someone who is skilled in the area of cancer around psychological impacts. But I also know that physios and Lymphodoema specialists are starting to reopen. So it's important for you to be dealing with any of your side effects promptly. And we need the system to be able to do that for them.

Bruce Mann [00:15:39] Fully support that the the physio and the Lymphodoema. If women do have shoulder problems or arm problems after their surgery, the idea of just letting them wait for three months is is is not right. You know, they're things that need to be managed promptly. And then we will get better outcomes.

Kirsten Pilatti [00:16:00] The other really good benefit that of Australia managing COVID-19 is we didn't see the redeployment of breast care nurses into other parts of the health care system. So it's important for people to reach out and make sure that they've made contact with their breast cancers. If they don't know who their breast care nurses, then you can call our Helpline on 1800 500 258 and we can connect you with your local breast care nurse, because they're a very important part in making sure that they can help you in all parts other than just the surgery and chemo.

Ad [00:16:36] 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 [00:16:57] Just finally, what is the optimal care pathway and has it changed now?

Kirsten Pilatti [00:17:05] So I'll probably get Bruce to talk a little more in the technical aspects. But the optimal care pathway is really the work that has been done to bring all the evidence of breast cancer. But in fact, it happens across a lot of cancers to say if a person is diagnosed with breast cancer, what should they experience? And it's something that the health professionals have all agreed to. And it helps people to know what is the best treatment that they should be getting based on the best evidence. And it's one of those documents that very few people kind of know about, but is actually the foundation of all of our advocacy work. So when we did the State of the Nation a few years ago, we used the optimal care pathway as a as a ability for us to measure whether people in Australia who are being diagnosed are receiving the very best care. And so the pathway based on and Bruce you may know more in detail, but based on what we've seen in the Australian healthcare system, there are very few locations that should not be delivering the optimal care pathway right now in Australia.

Bruce Mann [00:18:15] Yeah, I think it's it's fantastic initiative. It's not law like it's not that, you know, if a hospital doesn't do this, will get fined or whatever. But it is a consensus document that goes through the journey of breast and other cancers and says at various stages, this is what should happen. And it's very good because if if it's demonstrated that somewhere that that's not happening, then the optimal care pathway's there. And the question is, well, why not? You know, this is what should happen. Reconstruction. We were talking about before is quite prominent in that. And a lot of the things that Kirsten was talking about before about how how care should be, how diagnoses should be delivered. The allied health, all of all of those things are within there. It's an agreement. It's almost a consensus document of what we as a community expect of our health system and that our health system should be able to deliver.

Kirsten Pilatti [00:19:16] And from BCNA's perspective, what we have then done is taken those guidelines, if you like, and put them into My Journey online tool that's relatable to a consumer. So you won't necessarily say the optimal care pathway documented in the My Journey online tool, but the information we are giving you, the questions you should be asked asking, for example, am I being seen by a multi-disciplinary team? You know, are there out-of-pocket costs? All of those are in the optimal care pathway. So we've really translated that pathway into the My Journey online tool in a way that's going to be helpful for you to help you navigate and make sure that you are getting the optimal care pathway every time.

Kellie Curtain [00:20:01] So even though we're in still in unchartered waters, people can still feel confident that they can get the best care and what they need?

Bruce Mann [00:20:11]  I think that's that sums the message up: that our health system is it's different, it will remain different, but it is open for business and we can deliver optimal care.

Kirsten Pilatti [00:20:23] And if you feel like you're not experiencing that, then that's when our role steps in. We want people to reach out to us so that we can see where some of the challenges are in the system and go in and help to find a solution that's based on the patient's needs rather than the needs of the healthcare system.

Kellie Curtain [00:20:44] Thank you, Kirsten and Bruce. We remain in unprecedented times, and of course, BCNA is committed to providing the most up to date and relevant information for our members. Don't forget to download BCNA's online tool, a wonderful resource that has all the latest advice on COVID-19, but also delivers information specific to your diagnosis. You'll find it on My Journey dot org dot AU. Our Helpline is also operating on extended hours to assist you. For any individual concerns please contact your health professional. This special COVID episode was empowered by Red Energy. I'm Kellie Curtain, thank you for being upfront with us.