Are you a trainee or early career professional in oncology looking to connect, learn and grow? In this episode, we highlight the Trainee and Early Career Day at Breast Cancer Trials Annual Scientific Meeting. A unique opportunity to network with peers, gain insights from leading researchers and kick start your professional development in the field of breast Cancer Research.

“My name is Michelle Li. I’m an early-career medical oncologist and I’m also a clinician researcher. I work at the Peter MacCallum Cancer Centre and I’m also currently undertaking my PhD which ties in very well to my Breast Cancer Trials (BCT) Clinical Fellowship, which is looking at mechanisms of resistance to T-DXd which is one of our breast cancer drugs.”

“My name is Adam Ofri. I’m a breast surgeon, located in Sydney, and I’m also affiliated with BCT.”

“The BCT Trainee and Early Career Day (T&ECD) training and early career day is actually a really important part of the conference. So not only for trainees from medical oncology, which is my specialty, but also from other disciplines including radiation oncology and surgery,” said Michelle.

“It’s really quiet a multidisciplinary environment in which we can get together, they can network, and we can also understand a little bit about other specialties, which really directly impacts upon and influences at work in looking after patients. We get to meet new people, we learn about other specialties, we also get to hear from leaders in the so there’s international speakers from the main conference and also local speakers as well.”

“The day was developed as a means to really engage the younger people, to get the registrars, the fellows and the early career specialists to come to BCT, to get more involved, to get more exposure and more understanding and to be more inclusive,” said Adam.

“The ASM is phenomenal with some really big-name speakers. It’s jam packed with really impressive lectures, but the T&ECD gives the time for those trainees to mingle and interact with these international speakers, have a smaller forum where they can chat and feel more comfortable.”

“And the other thing is breast cancer management is so diverse with so many different streams that when you’re a trainee and a fellow, you sort of only stay in your stream. And the trainee day really gives an opportunity for them to start interacting with people in the other streams. Because we all come together at the MDT and gives them an opportunity to actually ask questions as well and understand a little bit of the complexity of the multi-facets of breast cancer management.”

“And it’s just fun. It’s an opportunity to chat with people and not be too intimidated to speak to a professor who’s come in from overseas and pick their brains about something,” he said.

If someone’s never attended before, what can they expect from the day?

“For a trainee, when they turn up for the day, we have some lectures, we have opportunities to ask questions galore, it’s encouraged. And then we have typically a stage where we’ve got complex cases that are presented that are selected by fellows who have applied. After that we have the international guest speakers that are attending and they are actually part of the panel that can answer the questions,” said Adam.

“And we get a wide range of input from different subspecialties. And the trainees are just empowered really to fire off questions and to ask the things that they may feel exceptionally intimidated to ask at the ASM. And they can ask world leaders questions to really help their understanding.”

“It is a really interesting day. You’re not seeing the same studies that you’ve seen many, many times already. You’re hearing about interesting cases that you might discuss in your day-to-day clinical work. You’re hearing about interesting aspects of your clinical practise you haven’t heard about before,” said Michelle.

“From memory, we’ve talked about treatment in pregnancy, for example, fear of recurrence, dietary recommendations for our patients, it’s really just an opportunity to learn about things that you might not have had an opportunity to learn about before. And at the end of the day, you get to go and bring all the information back to your parent hospitals. There’s also a really good dinner the night before as well where you get to sit down and meet everyone,” she said.

So how does the day help people who are just starting out in breast cancer research or clinical practise?

“I find that particularly in a field like breast cancer, you always see the same faces over and over again. And it’s really important to get to know your colleagues so that you can have research collaborations in the future. You can work together in the management of your patients locally and also, you know, within the state. And I think that not only having those connections is really helpful, but I think it also helps you feel like you’re really part of the community and you have a real sense of belonging,” said Michelle.

“So, I attended my first trainee day in 2024 when it was up in Cairns. From there, I was invited to be a part of the organising committee. From there I also heard about the BCT Clinical Fellowships, which I’m now a recipient of. And that’s allowed me to go and do further research, particularly internationally with some of our partner hospitals.”

“So really, that first introduction to BCT has really already started me on a much better trajectory for my career than I would have expected. So I think it’s truly very integral to my journey so far,” she said.

What would you say to someone who’s unsure about coming or thinks it might not be relevant to them?

“If you’ve got any interest in breast cancer, come along. There’s really nothing to lose, there’s only something to gain. For registrars who are in medical oncology, this is your opportunity to understand what it is that surgeons do or pick the brains of a radiation oncologist. For surgeons, we can actually understand what it is that radiation oncology does and understand a bit more about the drugs of what is being described,” said Adam.

“We can also learn more about psychiatry, radiology, understand patient impact, and it just gives an opportunity to wet your palate, if you will, about breast cancer management. And it’s always had a really good outcome,” he said.

“It is absolutely relevant to your career. It is a really great experience if you’re already here for the conference or if you’re coming after the conference. I think if you’re interested in breast cancer and you’re interested in meeting other people in the field; this is an absolute no brainer. You should definitely come,” said Michelle.

And why is it so important that the next generation of researchers and clinicians get involved with Breast Cancer Trials?

“As I explained to all of my patients, all the gold standard treatments that they have today were once trials. So, BCT are really the way forward for making sure that we can offer the best treatments to our patients, and we can offer the best outcomes for our patients. And as they have in their main motto, we want to make sure that there are no more lives that are cut short,” said Michelle.

“I think breast cancer clinical trials are really where we should be investing our time and our energy, and being a part of the trainee day is just one step forward on that journey. We need to have fresh minds, new thoughts, that’s we need to get change. Breast cancer management has changed so much in the last decade alone, let alone the last 60-80 years,” said Adam.

“And it’s always been because of people thinking outside the box. And you can’t get that by the same group of people. If you don’t want stagnancy, you need to have fresh enthusiasm, new motivation, new ideas, and different ways of thinking.”

“And all of this is really what leads to the dynamic aspect of breast cancer management. It’s what is really promoted and encouraged breast cancer clinical trials research. And we can see some absolutely incredible trials that are coming out that just really take a different mindset, a different way of thinking.”

“It’s the only way that you get that, by bringing in new people, young people, and eventually everyone retires, so we need new people to come in to take the reins and improve upon what has already been done really well. I mean, the trainees, the fellows, the early career people are the future of BCT, and it’s all about making everyone feel as included and as comfortable as possible,” he said.

What happens when the people caring for everyone else are running on empty? In this episode, we explore burnout of the clinician, practical self-care strategies, and ways that we can better support healthcare workers before exhaustion takes its toll. 

“I’m Professor Leslie Fallowfield. I’m a psycho-oncologist and I’m also director of a health outcomes research group at Brighton and Sussex Medical School in the UK.” 

“There are surveys worldwide showing that many patients are increasingly dissatisfied with the care that they get from their doctors. In particular, many report that they feel doctors lack awareness of the emotional impact that cancer has on them and act sometimes with a degree of indifference to their problems when they’re communicating with them.” 

“Now, this isn’t because doctors are bad people. Most doctors go into the profession because they care so much about the patients that they’re looking after and want to help them. But it’s precisely those doctors who care most who are liable to experience what we call in the trade, burnout, or sometimes we talk about compassion fatigue.” 

“As I said, it often affects those who start off being the most caring doctors. So, if we’re going to help patients, you need to help the carers as well, and when I’m talking about doctors, I mean nurses as well. They have worldwide a problem with burnout and compassionate fatigue. This can sort of demonstrate itself in lots of different types of ways that people can cease to get enjoyment from their work.”

“They feel de-personalised. They don’t feel like they’re responding anymore to the sorts of things that normal human beings do. So why is this happening? Well, there’s a lot of things going on in the world. Perversely, the improvements we’ve made in cancer mean that more people are surviving, so there’s more people being treated through course in our clinics.” 

“But this is all contributing to putting pressures on doctors. Most people, when they’re sitting in a busy clinic, can see the speed at which people are having to be processed. And I use that word specifically because that’s what patients feel. They feel like they’re being processed, and that people aren’t considering that they’re ordinary human beings.” 

“So that’s one thing. I think it’s the rising numbers of patients being treated. But there are other things as well. I like to speak about the tyranny of emails. We think that all the modern technology has improved things and should help make things swifter and slicker and easier to deal with. But I mean, I don’t know what other people find, but I get about 50 emails a day and I haven’t got a busy clinic to run as well.” 

“So, there’s the tyranny of emails, the pace which people expect you to be able to respond to things. We’ve seen another interesting thing happening of late, which is that the electronic patient record should mean that it’s simpler for doctors to access all the reports and information that they need when they’re treating a patient. Unfortunately, that doesn’t always happen very smoothly.” 

“Not all our systems talk to each other, and that can lead to frustrations as well. So, there are multiple levels at which the system fails, a doctor and a nurse and a patient. But I think also we fail the most of all by not looking after their emotional needs too. You cannot expect a healthcare professional to get closer to the emotional needs of the patient, to act empathically when they’re describing sad, bad and difficult news with them if nobody gives a damn about them.” 

“And I think we need to implement many, many more systems changes, that infuse getting help for doctors. And not to be seen as someone who can’t really come, or who just has to get on with it – that’s the job. It isn’t the job. The job should be a satisfying, well paid, career that has benefits for all the doctors and nurses involved and their patients.” 

What are some of the key warning signs that a healthcare worker might be approaching burnout? 

“There are lots of warning signs that people are approaching full blown burnout. Disillusionment with their job, frustration, that it doesn’t bring them the same sorts of pleasures that they used to experience.” 

“There’s another thing I haven’t already mentioned, which is slightly different from burnout, but that I think I see in quite a few healthcare professionals whom I speak with. And that’s moral injury.” 

“And that’s when you know that because of the pressures within the system, you’ve just not delivered the sort of care for a patient that makes you feel good and they deserve. And then people start feeling extremely guilty and you can’t enjoy a job when you know that the system is set up such that you can’t perform in the way that professionally you feel is appropriate.” 

“We hear that error rates are firing.  The retention rates within the system are sort of under threat everywhere. The loss of doctors and nurses are leaving the job precisely because it’s not that they don’t care, it’s just that they can’t care and perform their job in the way that they want. There are lots of interventions that can help prevent burnout, but you sort of alluded to require some systems changes.” 

“There are also interventions in terms of therapies like cognitive behavior therapy, counselling, relaxation. That can help enormously if you’re the sort of person who does respond to those. But I’m more interested in going back a stage and helping doctors really think far about self-care. And what I mean about that is quite simple. Remember the things they advise their patients to do. Drink less, don’t smoke, eat proper food, exercise more, sleep better and make time for holidays. Have down time with the family doing other things.” 

“We advise other people to do all this, but really some of the most committed doctors I know don’t make the same sorts of changes in their own lifestyle. And then I think if we go back to the work setting, I think it might need some really clever negotiation with management about expectations that people have on the size of clinics and the workloads that they have.” 

“I think one ought to consider also the numbers of committees and extra things you’ll serve on. 

“And I’m a dreadful culprit for this. Learn how to say no more often and at the end of the day, I always advise people that being an oncologist or a surgeon or a nurse should be what you do. It shouldn’t be who you are.” 

And how can leaders and managers better recognise and respond to the needs of their teams? 

“I think all managers now have a big responsibility to consider the health of their workforce and the numbers of health professionals leaving the job is unsustainable. I mean, we’ll make it even worse for the doctors and nurses who do remain if we can’t do something about staff retention or sometimes just simply the numbers of people who just go off sick because they cannot actually cope anymore things which ultimately puts pressure on those who are left behind as it’s a vicious circle or a spiral because they too then become even more burnt out.” 

“So, from a manager’s perspective, I think there’s a clear need if they want to improve the survey reports about hospital patient satisfaction, if they want to reduce the numbers of complaints, the errors and litigation and hang on to a good, productive, happy work. For this they have to do something about looking at the organisation and implementing proper support for their doctors and nurses.” 

And are there particular programs or initiatives that you’ve seen that have made a real difference in supporting staff? 

“During COVID, when pressures on everyone, certainly in places like the UK, were vast and huge, it was quite clear that there needed to be some overt support for the healthcare professionals trying against all the odds to keep systems going.” 

“And we did see some sort of local initiatives that were effective at supporting people to do a most impossible job outside COVID. Some of those have continued, you know, sort of counselling, and mentoring, these sorts of things, but it becomes a problem if people don’t prioritise those, if they don’t see these sorts of supportive interventions for themselves as pivotal in maintaining their own professionals sort of work levels with patients there.” 

“There are some small local initiatives to help support healthcare professionals in a preventive situation as well as then people do have burnout, but they’re not sort of routinely available everywhere. Despite recommendations that many professional bodies have made that these sorts of things should be integral to continuing a professional development, we need to have more of them.” 

“It shouldn’t be just when people are absolutely on their knees, they’re begging for some help, that they get these resources. They should be there all the time. It’s almost like a professional and a managerial responsibility I think.” 

Do you think there’s still a stigma around healthcare workers prioritising self-care? And how can that culture shift? 

“Times change, attitudes change, but you will still find in healthcare the few dinosaurs who you hear saying things like ‘well if they can’t stand the heat they should get out of the kitchen’. Or ‘in my day it was much worse, and we just got on with it’. Just because somebody else managed to get through a rotten system, doesn’t mean that we should force it on others. Indeed, we have a responsibility to make their work life much better.  

And how can healthcare organisations create an environment that better supports employee wellbeing? 

“It’s a complicated issue to think about the sorts of institutional changes that are required so that the workforce is less liable to areas like burnout. It will differ of course, because different hospitals, different systems of healthcare have their own different types of pressures, but I think just making fees more efficient can help.” 

“We do a lot of rubbish things in our hospitals. There was a very interesting project conducted some time ago called the ‘Gross Initiative’. This was done in a corporate setting and gross stands for ‘getting rid of stupid stuff’, which whenever I mention it people think, oh that’s some sort of semi-psychological sort of paper.” 

“But that’s not the case. A big corporate organisation was worried about efficiency and so they asked everybody in the organisation, whatever level they were at, to complete a form saying stuff that they did that they couldn’t see the point of or that will get overturned by somebody else in another meeting.” 

“And essentially when all of these results came back, they found that lots of people were suggesting exactly the same things. No one could understand why they were still having to do this or that. And within all of our hospitals, we do have systems and forms that we have to keep filling in or interacting with the computer on, that nobody understands why we still have to do this and does it matter.” 

“So, I think first of all, getting rid of stupid stuff. It is a great idea for a manager to look at the repetitiveness of the sorts of things that get stored on the electronic record. I mean, repeatedly patients complain about being asked exactly the same questions by different healthcare providers that should be already there. Maybe checking is a good thing, but there’s too much repetition and these sorts of things are frustrating.” 

“The reason I’m going on about it is that the reason most people came into medical nursing is because they love people. They like interacting with people, they like trying to fix things for them. And if you spend most of your day interacting with a computer, other than the really nerdy ones that like that sort of stuff, what fun is there in that? And that can be a frustration as well.” 

“So, getting rid of unnecessary things is important. I think one of the things most of our organisations could do as well as implementing this, as I’ve referred to several times now, is being mandatory within any healthcare service that people have got debriefing facilities, mentoring facilities and housing facilities.” 

“We all have to do mandatory training on fire extinguishers and goodness knows whatever else, while I think you need to extinguish the fires going out with burnout.” 

What roles do peer support and team culture play in helping healthcare workers cope with stress? 

“One of the things that has happened over the last couple of decades is that the delivery of cancer care now is a serious team business, and most healthcare systems have multidisciplinary tools or other variants of it now.” 

“That’s great if you work within a supportive, well-functioning team. It’s not so great if the rest of your career is going to be spent in a dysfunctional workplace. So team training can be quite important because there are plenty of studies showing that if you are lucky enough to be a member of a well-functioning supportive team, then you’re less likely to experience full blown burnout because each other, everyone supports each other.” 

“There’s another piece of evidence that I think is quite important and it’s sort of links in with multidisciplinary team working, and that is evidence that people who’ve attended well on evidence-based communication skills training programs actually are less likely to experience burnout because they know how to be more efficient with their use of time.” 

“They know how to respond more appropriately in ways that are satisfying for themselves and patient. Of course, if you can’t communicate well with other members of your team, that’s not going to yield to a well-functioning one. So, the presence of a good, well run multidisciplinary team is a high protective feature and in preventing burnout.” 

So how can healthcare workers themselves advocate for better support without fear of judgement or repercussions before? 

“Before one really gets into full blown burnout, there are usually lots of other signs. People don’t find satisfaction in going to work, they’re depressed very often. That’s all associated with burnout, not sleeping well, not finding enjoyment in many things.” 

“And before they get really in a bad way, if there’s no obvious help available within their organisation there are some good online resources that people can access, relaxation techniques that they can learn.” 

“Most professional organisations are available to physicians. Surgeons and nurses also run self-help programs that are worth looking at. But one of the things we often find about people who are very burnt out is they’ve lost motivation to even do that. So, it’s sort of acting before you really get into those bad steaks.” 

“Working in Healthcare is such a privilege on one level, and good stress is good for you, but we want stress to burnish people, not burn them out. It’s very hard if you work with others who feel you’ve just got to be made of the right stuff and get on with it. And that does inhibit people from admitting that they’re struggling.” 

“I guess the only thing I sometimes suggest, apart from the fact that I think everyone now has a responsibility to look after people’s mental health, not just their physical health. One of the techniques I often suggest to people is that they employ the evidence base. You just look at things like litigation and error rates in people, this often shows that they are burnt out, and most hospitals want to avoid that.” 

More breast cancer patients are now receiving treatment before surgery, also known as neoadjuvant therapy. But what’s next for this approach?

In this episode, our guest Dr Javier Cortes, Head of the International Breast Cancer Centre (IBCC) in Barcelona, shares insights into the latest neoadjuvant treatments being tested and how they could shape the future of breast cancer care.

Can you explain what neoadjuvant therapy is and why it’s used in breast cancer treatment?

“Neoadjuvant therapy is giving usual systemic treatments before the final surgery to optimise long-term outcomes and also to optimise surgery. It has shown that we have a second option to treat our patients for those ones who do not achieve pathological complete remission.”

“This is one of the most important reasons to go from the adjuvant therapy in the HER2-positive setting and to relate that to other breast cancer subtypes. The adjuvant therapy has had a lot of advantages, one of them being that we cand decrease the tumour size.”

“So basically, the surgery will be much better, and I think that one of the most important aspects is to look at the pathological complete or not pathological complete information of the tumour and this will tell us the possibility to have different options after surgery.”

“Pathological complete response is a very important endpoint for patients. We know that those patients who achieve pathological complete remission will have much better outcomes. And this is a second important aspect of PCR, is that we know that for those patients who need not achieve pathological complete remission, if we go for further treatment after surgery, we will improve outcomes.”

And what new drugs or treatment combinations are currently being explored in the neoadjuvant setting?

“We have more and better agents in both in the anti HER2-setting but also in the triple-negative breast cancer setting, that we have included that will locate against HER2 or HER2+ breast cancer, and we have started to use both carboplatin and immunotherapy in the triple-negative breast cancer situation.”

“More and more we have learned how to de-escalate treatment basically in HER2+ disease, which means that we can cure the same number of patients without giving so much therapy. We have seen that many patients could be cured even without the need of chemotherapy or just decreasing the amount of chemotherapy and that’s one of the most beautiful aspects.”

“There are many strategies which have been explored in the new urban setting. We are exploring different immunotherapy combinations in the triple-negative breast cancer setting. We’re exploring many anterior conjugate-based therapies in the HER2+ positive and also triple-negative breast cancer settings. So many new strategies are being explored there.”

So how has neoadjuvant therapy evolved over the past decade, and what key advances have shaped its current use?

“In the HER2+ field we are looking at new anti-viral conduits which might show improvements to pathological complete remission, but also we have many clinical trials to de-escalate treatments.”

“For example, PHERGain 2 is exploring a chemotherapy-free treatment for HER2-positive early breast cancer, using a combination of trastuzumab and pertuzumab, and we expect to have their results on this trial very soon.”

“In the triple-negative breast cancer setting we are also exploring different anti-viral conjugates in combination with immunotherapy, and we might remove the use of chemotherapy. So amazing times ahead.”

What are some of the biggest benefits of giving therapy before surgery rather than after?

“Everything has pros and cons. Sometimes the patients know that they have a tumour. So, there is anxiety for the patients, who want to remove the tumour as soon as possible. We have to talk to them to say sometimes it’s much more important to wait and go for surgery afterwards.”

“The certain aspect is that sometimes toxicity might appear and if it’s not frequent, you might delay surgery a little bit depending on those aspects. And last but not least, I think it is very unlikely to happen, but of course, maybe a minor number of patients could experience progressing disease during neoadjuvant treatment, and they should go for surgery as soon as possible.”

“These are challenges, but in my opinion, these aspects should not tell us that we do not have to use neoadjuvant therapy. I think that that’s something that we can control, something that we can manage, and something that we can avoid if needed.”

“But please think about neoadjuvant therapy in a very positive way, because this is the best way to treat our patients.”

How do patient preferences and quality of life factor into decisions about neoadjuvant treatment?

“The possibility for patients to be free of disease after surgery is much higher. Usually, we’ll not have a decrease in the quality of life because usually when we are going to treat our patients, we’ll give similar drugs in the neoadjuvant versus in the adjuvant setting.”

“One more important aspect is that we’ll be able to de-escalate treatment many times if we give less drugs, that will improve the quality of life.

“When we are going to say to the patient that we are going to cure, sometimes using de-escalated treatment, sometimes even without the need of surgery in the very near future. So, curing the same or more with less treatment, I think this is challenging and I think it’s great to talk to the patient and say, listen, sometimes you will not need chemotherapy. We’re explaining the de-escalating strategies.”

“In general, we have some important benefits from stage 2 and stage 3, HER2+ and triple-negative breast cancer patients. But it’s true that the treatment options after surgery gave us a higher possibility to have pathological remission and even tailored, I think that the agreement for our patient will be to be treated with a newer strategy.”

“We are facing some of the stage 1 breast cancers with neoadjuvant therapy. I think that more and more we implement different strategies with neoadjuvant treatments in patients not only with stage 2, and stage 3 cancers, but only also with stage 1 and as I said before, in patients with low-risk tumours as well.”

What are some of the ongoing challenges with neoadjuvant therapy, such as side effects, resistance or overtreatment?

“Toxicity is something to be considered, of course, and also the possibility to look at resistances in the tumours. But I think that this is something that we can observe that is so unlikely to happen and we can always go to surgery if needed.”

“And for both early breast cancer and metastatic breast cancer, in my opinion it’s even more important because at the end of the day we have to increase the quality of life. And maintaining quality of life in the early breast cancer society is of course also very important. But we should not forget that the primary objective is to cure our patients.”

“Quality of life is key, and is very important, but curing the patients is the most important endpoint when we are facing these patients. And I think that we have plenty of clinical trials which are approaching this method. So, I think that these two aspects are very important, but optimising therapy if no PCR has been achieved after surgery, it’s a very important surrogate endpoint for clinical trials.”

“I think that the new advanced setting has been clearly improved. I think all research is exciting. You know, trying to improve something, whatever it is, is terrific and amazing.”

“But I think that the more we know about the biology, the more we know about the new agents and the more we know about what these agents might offer, we will move from the metastatic to the adjuvant to the neoadjuvant setting.”

“For example, in the oestrogen-positive, HER2- disease, we are facing now decent strategies to de-escalate treatments using the neoadjuvant approach. So I’m sure that in the future we will also use the neoadjuvant approach with different drugs also in less risky patient population.”

Looking ahead, what do you think that the next 5 to 10 years will look like for neoadjuvant therapy and breast cancer?

“I think that currently genomic testing is widely used in the adjuvant setting, but more and more we’re implementing all these tools also into the neoadjuvant approach.”

“Unfortunately, we will not have a clear path yet and I’m sure that in the very near future we’ll implement the best treatments with the best biological tools, and biological assessments to optimise patient care and in implementing this technology, this will help us to de-escalate and to use more treatments in the neoadjuvant setting.”

Sexual health after breast cancer is a topic too often left in the shadows, yet it profoundly effects quality of life both during and post diagnosis.

In this episode, Doctor Belinda Yeo and Doctor Virginia Baird open the conversation, sharing insights into how we can better support patients navigating intimacy, identity, and wellbeing after treatment.

“My name is Belinda, and I’m a medical oncologist and a clinician scientist in Melbourne. I work at the Austin and also at the Olivia Newton John Cancer Research Institute, and I treat breast cancer.”

“I’m Ginny (Virginia) Baird, and I’m a GP by background. I’m a trainee breast physician, and I work at the Royal Hobart Hospital, and I have a breast and menopause clinic.”

Sexual health is an important but often overlooked aspect of Breast Cancer Care. Can you explain why it matters so much for patients?

“We can see that it’s important because the data suggests that 90% of our patients have detrimental effects to their sexual health in the setting of their breast cancer, either because of their treatment, or because of the diagnosis,” Belinda said.

“And of course, sexual health is very complicated part of our lives. So, there are many other facets that affect sexual health. It’s like the elephant in the room.”

What kinds of sexual health issues do breast cancer patients commonly face during and after their treatment?

“I see patients in the surgical clinic, and I’ll take the opportunity to ask them about their sexual health. But it might seem totally unexpected to the patient because they think they’re just going to get the results of their recent MRI scan or their mammogram and ultrasound, and they get their clinical breast examination,” Virginia said

“So, I think Belinda really covered it well in the talk today about the sorts of issues in terms of sexual health that people will experience, but what they’re actually going to talk about is a different thing.”

“I think they’ve got physical side effects from treatment, and one obvious side effect is that if they’re on hormone treatment, they have very little oestrogen or we’re hiding the oestrogen from the body and oestrogen is a really important part of sexual health,” said Belinda.

“So things like pain on intercourse, having a low or no libido, and we’re often treating patients at the time when they’re going through or have gone through menopause, and so these are issues that may even well predate their breast cancer diagnosis.”

“And then there’s a psychological element of a cancer diagnosis. How you manage the uncertainty of that fear of recurrence that plays into our sexual health as well. So, it’s complicated.”

“And maybe because it’s so complicated, we just don’t do it very well. Doctors are very good at fixing, one thing, but when you have multiple things feeding into a problem, I think we need some help.”

“And I think often the sexual health is not just about the person in front of you, it’s their relationship with the other person or persons that they have sex with or are used to having sex with, isn’t it?”

“And how you feel in terms of your confidence in a relationship with someone affects your quality of life and you know, your sense of wellbeing,” Virginia said.

“And I think you don’t need to be in a sexual relationship to have, sexual health needs, of course. And sometimes we make assumptions there if our patients are not partnered or not sexually active. But I think that’s wrong, and these are difficult issues for anyone to talk about, but it doesn’t mean we shouldn’t try,” said Belinda.

Do you think there are barriers that exist that might prevent patients from discussing their health, sexual health concerns with their health care providers?

“Well, there’s two things, I think one is that people generally feel that’s private, and therefore not something that they find it easy or comfortable to talk about, particularly in the age group we’re talking about as well,” said Virginia

“Because if you found someone in their early 20s, they might be more willing to tell you what sort of sexual activity they get up to. But the majority of people who are diagnosed with breast cancer, that’s not the case, but then I think they also do detect that doctors are uncomfortable talking about it.”

“And so, it’s potentially going to be a clunky conversation, and they’re not sure what they’re going to get out of it. So, I think that’s a massive barrier. It’s just about that both sides being able to communicate.”

“And I think if they feel they have to bring it up, rather than someone asking them, they’re probably thinking, well, maybe this is just me and no one’s mentioned this to me. It’s not written down anywhere. And so, maybe this is a problem that I’ll just have to deal with myself,” Belinda said.

“And that’s what the data suggests is that most patients are managing these problems themselves. But there is help out there.”

So, if a patient came in and they were experiencing these difficulties, what would you recommend to them? How would they initiate that conversation with their healthcare provider?

“I wouldn’t recommend that they initiate it because I think that’s not going to happen. So, I think it’s about the healthcare providers, or whoever it is to be able to bring it up and feel confident about bringing up the issue,” Virginia said.

“It’s about checking in and saying this is something I ask everyone because the majority of people going through treatment are going to be experiencing some sort of sexual health concern. So, is that something that you’re happy to talk about with me? Let’s have a conversation and see if there’s anything we can do to make you feel better.

“You may not have the answer to their problem and that’s ok, these conversations are ongoing. These problems are going to be ongoing for years. And you have to read the room a bit, and on the first consultation, when someone’s meets me, I don’t think it’s appropriate for me to give them the sexual health questionnaire to fill out, because they’ve never met me,” said Belinda.

“But you know, I think you need to get to know your patient and there’s a team involved here. It’s not just one person’s role, but if everybody thinks someone else is going to do it, it’ll never get done.”

“And coming back to it, we have short consultations with our patients. One of the biggest frustrations with our patients is we have no time to go through everything. And it’s really easy just to focus on, their treatment, you know, how is the tablet going?”

“Because my focus is that they must be taking the tablet, and you think that if we go into other things, maybe that’ll lessen their adherence to the medication. But actually, if you broach side effects of treatments and try to address them as best you can, there’s actually data to suggest that adherence goes up.”

And are there different support networks in place for breast cancer patients who are going through these sorts of things?

“If you use the My Journey app, there’s information through there, and they offer all kinds of resources for people to talk to about. I think Sexual Health Australia is another group as well that are online, and they’ve got information. Cancer Council too, so there’s quite a few resources available,” said Virginia.

What changes would you both like to see in clinical practice and research to better to support the sexual health of breast cancer patients?

“This is outside of breast cancer as well, but in medical oncology training, nobody teaches you this kind of thing. And it shouldn’t be part of our training because as we saw today, like most patients who are diagnosed with cancer, it can have substantial effects on their sexual health,” Belinda said.

“And if the only way you kind of plod through this is to treat more and more patients and start to understand and read the literature, that’s probably the wrong way around. So, I think it should be in training and even if it’s in medical school, that’s a long way, before you end up becoming a specialist in in the area.”

“So, and I think the training should be with lots of different professionals. This is not just the oncologist or the surgeon or the breast care nurse, but I think it’s important to have the physios in there, have OTS in there and things like that.”

“I think when I did that National Certificate of Sexual Reproductive Health, that introduced me to resources about opening the conversation about sex with people, such as who is it you’re having sex with, how many people you have sex with, how do you have sex, just in terms of habits and things like that,” Virginia said.

“But that’s only because I did that specific training, but there are still some resources available on the Melbourne Sexual Health Centre website, for example. There’ll be information on there for practitioners. But I think Belinda also touched on this earlier that there are resources in terms of staffing and personnel who have got time to address these things.”

“And also choosing who in that team is going to be the one to initiate this discussion. But I don’t think it can be just down to one person because I think if more people are asking, then it shows how important sexuality is and sexual health is as part of someone’s overall wellbeing.”

“Because we talk a lot about mental health, anxiety, depression, stress, because a lot of people in the world are experiencing that, not just people with breast cancer, but your sexual wellbeing is another part of you that’s just as important as everything else.”

“That’s so true. I think that as an example, everyone is on the bandwagon of exercise now. You come in with a breast cancer diagnosis and we’re like ‘do you exercise, you need to exercise’. And this is probably the next revolution we need within cancer treatment,” said Belinda.

Choosing Your Path and Navigating Difficult Treatment Decisions

What happens when patients say no to recommended treatments? Refusal and the search for alternatives can be confronting for both patients and clinicians.

Associate Professor Lesley Stafford explores why some patients take this path, what it means for their outcomes, and how the medical community can better navigate these difficult conversations.

“I think to start us off we should just clarify the word ‘refuses’. So, I think there’s something a little bit paternalistic about that word refuses. You know, horses refuse to jump, dogs refuse to walk on the lead. People make choices. So, I think we need to be careful about refusal and think more about patient choices, and how people make decisions.”

“I just wanted to put that out there. So, when we think about how common this is, it’s kind of hard to really get good data because the people who decline treatment tend to be less engaged with our services. And often because of the way they interact with health services, once they’ve declined treatment, they often don’t come back.”

“But the general consensus is that it’s about 1 in 10 women with breast cancer will decline at least one form of conventional therapy, in other words, chemotherapy, radiation, hormonal therapy or surgery.”

“There’s a little bit more work on this and it’s from very large databases in the US. We know that it’s often the younger age, higher income, higher educational status, less comorbidity individuals. So those tend to be the sort of demographic clinical factors, the more sort of psychological factors tend to be things like wanting more control over what goes into your body, wanting more decisional control, or already having a practise where you use an alternative therapy or complementary therapy.”

“In the in the past, a number of these women have a mistrust of the pharmaceutical industry and a number of them have witnessed a great deal of suffering in people they’ve loved family members for instance, who’ve had conventional therapy. So, there’s often an underlying trauma there.”

“One of the really interesting bits about women and people who decline conventional therapy is the doctor-patient relationship. So, we have a bit of data now that shows that there’s a sense where the patients have talked to their doctor about an alternative therapy. The doctor’s been dismissive, and has scared them, or has pressurised them, and they’re afraid of all the side effects that will come with conventional therapy.”

“And they disengage and seek an alternate therapy that promises them a cure with no side effects.”

What are some of the challenges that clinicians might face when trying to support a patient who is refusing a certain treatment regime?

“It’s very challenging, and it’s a rare thing, but when it happens it’s really stressful for the clinician for a number of reasons. One is that we know that if a patient uses an alternate therapy instead of a conventional treatment, they have a 5-fold higher risk of death.”

“If they use a complementary treatment, which means they’re using a treatment in addition to a regular proven treatment, they have a 2-fold higher risk.”

“So the stakes are very high, and for your average physician or doctor, who values science, and values evidence, and is accustomed to bringing a sense of control to a messy and predictable environment and who’s ethos whose work is to make people better – when somebody says, I choose not to have this, that’s a real challenge because there’s that recognition that you can’t make this person better.”

“It really challenges your identity as a healer. We want to do the best we can to make our patients well and this kind of makes it impossible. So, it’s also very time consuming often because what happens is doctors get into almost like an adversarial engagement with this person who is making a choice that the doctor thinks is wrong.”

“And of course in medicine, we think in terms of dichotomies. We think in terms of high risk versus low risk, or young versus old people. Patients don’t think like that. Patients are making decisions based on their values, based on their experience. So, the doctor’s expertise is important, but it’s not the most important thing. Quality of life is often more important than length of life from a patient’s perspective. So that it’s quite challenging for the doctor, who is looking after the patient.”

And so how should these conversations take place where someone has decided they don’t want to go down a certain treatment route?

“I think as clinicians, we need to reframe those situations and really recognise that being adversarial or trying to scare your patient or being sarcastic or any of those things is creating this “me versus you” scenario when really, you’re on the same side. Both of you want the same thing, which is that you both want the person to be well.”

“And so, when you refrain it as saying we’re on the same side, how can we work together to look after you in a way that’s consistent with your values? Some doctors might say, well, that’s not possible. Some might say, if you don’t want to take this treatment that will save your life or you’ve got rocks in your head, right? But that doesn’t leave you with much wiggle room then to work with someone in a compassionate way or to leave the door open for them to come back if they change their mind.”

“Because we don’t want to create a situation where we shame the person who has chosen an alternative therapy over a conventional therapy and then their disease progresses, and they come back, or they don’t come back because they feel too ashamed to do that. So, I think our doctors need to be very explicit in their empathy and show that they really understand.”

“You do that by saying things like, I can see how important your health is to you. I can see that you’ve been doing a lot of reading online about different treatments and I can tell you’re really scared about side effects. I know this is a lot to take in. I understand these are big decisions, so you should be really explicit with empathy, it’s really important.”

“The other thing that’s really important is to explain what the problem is, not just to say no, that that can’t work, but instead something like “I wish it were as simple as a vegan diet, I wish it were, but it’s not. I’m really worried that a vegan diet alone is not going to cure your cancer, and let me show you a paper, or let me show you some evidence where it’s described what happens when people follow these different kinds of treatments.”

“So, to kind of explain what you’re thinking is another thing that’s really important when trying to keep the door open and be compassionate. And, one final strategy that can be really helpful is to extend your system, or to suggest a second opinion from someone else.”

“If a patient is getting too angry, too upset, or too tense, it can be helpful for you to say, why don’t you have a chat with my colleague? She might have a different approach; she might have something different. So, I think there are ways to manage it.”

When a patient does refuse a standard treatment, how should clinicians go about maybe identifying alternate therapies?

“It depends a little bit. We have proven therapies, and we have unproven therapies. So, in Australia, what our doctors are offering are the proven therapies when somebody wants to use an alternative therapy. And by alternative, I mean they’re not using a proven therapy at all.”

“It’s very difficult for our doctors to support that, when we know that there is no evidence for it in terms of its curative capacity. It might be very nice to have that treatment, massage or relaxation or deep breathing or to take certain supplements. It may help with side effects, but ultimately those are supportive things. They don’t work, and we can’t ask our doctors to support that – It goes against everything we believe in.”

“When you’re using a complementary therapy, in other words, you have accepted at least one conventional therapy, but you’re also using a naturopath or homoeopath or something like that, most medical oncologists will say, can we just have the pharmacist have a look at the ingredients of what you’re taking? Because sometimes even natural products interfere with chemotherapies and oestrogen blockers and so on.”

“And so, they might ask for that, but it’s otherwise it’s sort of outside of our remit. I do think our doctors can do a bit more to almost inoculate patients about the misinformation that’s around. But you know, there was a study done through the American Society of Clinical Oncology (ASCO) that showed that something like 40% of people believe in unproven therapies that can cure cancer.”

“And then another study looked at the amount of misinformation online on Facebook, Reddit and Twitter. And one in every three articles that they looked at contained some kind of misinformation or some of it was harmful actually. But what was really scary was that the more harmful it was, the more misinformed the article was, the more engagement it had, the so the more likes and the more commenting it received, and that’s it’s very hard for evidence-based medicine to meet that.”

“You know, we can’t have doctors really being first line responders online. How do you condense a systemic review into a reel? You can’t.”

What do you think needs to change in the system or in training or in a patient and clinician relationship to better support these like complex treatment decisions and to meet like a common ground?

“Really reframing that conversation in your own mind that it’s not a me versus you. It’s not just that you’re the doctor so you have to be right. We approach this differently. And yes, one treatment made has evidence has its basis and the other one doesn’t, which puts a doctor in a very difficult position.”

“But we have to accept that people who have the cognitive capacity to do that, make choices and we don’t have to like their choices, but we ultimately need to respect them. And that that’s difficult to do when you’re invested in the process and you are a doctor whose job is to make people better and in that particular instance, you can’t.”

“So, it’s that reframing, it’s thinking about the language you use. It’s the showing more empathy, and more compassion. The doctor-patient relationship is so important. And we see that from the data. We see situations where doctors are dismissive and don’t listen and are disinterested, and people are more likely to turn away from conventional medicine.”

“When we talk about side effects, which people are terrified of when it comes to chemotherapy, often we give them a lot of information about side effects, but we don’t tell them what we can do to manage those side effects.”

“So, they’re left with a very uneven picture that can be very terrifying. There’s a bit of work to be done in that space, but where I think it’s particularly difficult, is that it takes time. It takes time to have these lengthy conversations with people. There’s so many things you need to cover in a session and those appointments are not very long.”

“There’s huge demand on the system and it’s kind of where the distress really sets in for the doctor because there isn’t enough time to do all these things as well as they would like to do them.”

If you had a patient that was considering refusing a treatment, what would your advice be to them in ultimately making that decision and also communicating that with their doctor?

“We know that a lot of a lot of patients don’t tell their doctor about complementary medicine use. And one of the systematic reviews showed that this is because they perceive doctors to be disinterested or they’re perceived to be irrelevant to what’s going on. And then again, this comes back to that doctor-patient relationship, that therapeutic relationship.”

“I think we want women to be as informed as they can be about the choices that they make. That’s all we can ultimately ask of people, is that they make choices with their eyes wide open and that when something promises something too good to be true, it probably isn’t true.”

“So, when looking online at things and you come across something that promises a cure and it just looks really too good to be true – my flags would go up I think with a lot of the complementary treatments. I’m certainly not saying these treatments are useless. They have their use and that use is often in terms of supportive management, coping with side effects, you know, being fitter, being healthier, being less stressed. That’s very different though, from actually targeting cancer cells.”

“So, we can only ask people to be honest with their clinicians, to be educated about what they do and to make those choices in an informed way. There’s quite a bit of work to do in combating ideas around the evils of the pharmaceutical industry, and I suppose that’s a topic for another day. But those are my thoughts on that.”

Lotjpa Yapaneyepuk (Talk Together): Bridging Communities and Cancer Research

 Access to clinical trials isn’t equal. and for Aboriginal and Torres Strait Islander peoples in Regional Victoria, barriers in accessing treatment for breast cancer remain Dr Monica Green and Ms Leah Lindrea-Morrison share an initiative that’s breaking down those barriers by talking together, listening deeply, and creating culturally safe pathways to clinical trials/

“I’m Monica Green, I’m currently the Coordinating Principal Investigator with the Border Medical Oncology Research Unit on a project called, Lotjpa Yapaneyepuk, which means ‘talk together’ in Yorta Yorta language about cancer trials.”

“My name is Leah Lindrea-Morrison, and I’m a Yorta Yorta woman from Shepparton in Victoria. I’m the research assistant for the, Lotjpa Yapaneyepuk Talk Together About Cancer Trials project. So, my role is to lead the community engagement part of the project, including leading the Aboriginal and Advisory groups and also the yarning sessions. And I’m also advised on all aspects of the project.”

“The yarning sessions is a way to find out what community knows about cancer trials and working with them to co design a resource. The information stories shared at the yarning sessions will guide the content and format of the resources that will be developed.”

“I’ve had my own lived experience with breast cancer, and I’ve had a husband who passed with cancer. But also having a young family while my late husband was diagnosed and also having my own diagnosis, I’ve seen first-hand the impact that it has that can have on families”, Leah said.

“Cancer is the leading cause of mortality in Aboriginal and Torres Strait Islander people now, which has only happened in recent years. It’s a major issue, and survival rates are not improving. So, there’s an area of huge need there. And this is evident through the yarning sessions that Leah has been doing as part of the Lotjpa Yapaneyepuk project”, Monica said.

“People are so engaged in it because everyone’s affected by it. There are also low trial participation rates for Aboriginal and Torres Strait Islander people, which is difficult to quantify because it’s not thought that people identify all the time and so it’s difficult to get accurate figures.”

“So, it’s really good to focus on this area of need. And just seeing how engaged the community is, and that includes our community members, but also the staff members of the Aboriginal Community Controlled Health Organisation that we are working with, Rumbalara Aboriginal Cooperative, in Shepparton, and their staff are part of our steering committee and our Aboriginal Advisory Group, which just signifies what a priority it is for the community.”

“Just briefly, I think some of the barriers are the mistrust or fear of research. Obviously in the past, research was done about aboriginal people and so some of those fears are still there. And also, trial design, so the type of cancer being researched, and often there isn’t enough research into the cancers that are common in Aboriginal and Torres Strait Islander people. Strict inclusion criteria and location are other issues. Many clinical trials are coordinated in metropolitan areas, not so much regional,” said Leah.

“I do understand that they are trying to make that happen, but currently taking some Aboriginal people from their community and family has large impacts and can be a huge barrier for people. So, there’s no consideration of cultural aspects of life in the trial designs, implicit or explicit bias. Taking part in a trial may not even be discussed with the person. But also, the language and communication of trial information is something that needs to be addressed.”

“So generally, the information is in a medical (Western) way of talking. So, there’s few Aboriginal and Torres Strait Islander people that, are in the research teams and also that there’s insufficient support for patients there. As well as this the demands or cost or taking part in trials are too much.”

How do historical, cultural and systemic factors influence trust in medical research and clinical trials among indigenous communities?

“Leah’s talked about the history of medical research and there’s been damaging and disrespectful practices, which you might think are in the past, but actually, it still goes on and it’s really damaging to the trust of Aboriginal people, especially to not get any results from research that they’ve been involved in, and to not hear anything about it,” Monica said.

“Even if the medical team has taken their blood or interviewed them, nothing comes back and that makes you very disinclined to take part in the next research project that comes along. And I think with clinical trials in particular, people might feel like they’re a Guinea Pig, they don’t want to be randomised, there’s a lot of issues around that which need to be discussed in yarning sessions or when people are chatting to their oncologists.”

“From the cultural perspective I’m a non-Aboriginal person and have been working in Aboriginal and Torres Strait Islander health research for 10 years or so, and it’s become very apparent from the people I’m working with and the people that we’ve been researching with. That trust is a huge issue, and also that healthcare for many Aboriginal and Torres Strait Islander people is culturally bound and you can’t ask people to separate their medical condition with their cultural obligations. And health professionals need to be receptive to that and understand and respect it rather than try to change it.”

“From the systemic factors we are working in a largely western medical system, which is often very unfriendly and very culturally unsafe for people even when having the Aboriginal and Torres Strait Islander flags around, or having aboriginal liaison officer available to support people when they come for cancer diagnoses or treatment or participation in a trial. It’s a really important aspect of people engaging with their treatment.”

Can you share any strategies or initiatives that have been effective in improving access or building those stronger relationships with communities in regional Victoria?

“I think it has to be something that the community will benefit from, I think that’s really important. It’s he starting point because it’s no use saying let’s do this, and it’s not something that the community want or need. I think that’s the success of any project, having local knowledge and experience, and having people from that area being part of any research, and having those relationships with your community,” said Leah.

“I just mentioned then with the local mainstream cancer services, it’s important that our community has a voice and that they feel that they’re being heard, to make things more successful. Also, the community based participatory research and co-design, for example, in co-design one of the principles is inclusive partnerships. This means fostering and maintaining equitable and collaborative relationships between all participants. Establishing appropriate communication channels and conflict resolution processes formulated by and with community that retains trust and support authentic partnerships using imperative.”

“And that’s where Monica was talking about trust. If there’s no trust there, then good luck. And lastly, I would say advocacy to make sure Aboriginal and Torres Strait Islander people have access to pharmaceutical trials.”

What role does community engagement and co-design play in creating a more inclusive and culturally safe research opportunity for patients?

“You’ve got a much better chance of reaching your audience if they’ve been involved in creating the content and making it meaningful and relevant. And so that experience when you’re doing co-design of going out to community and hearing from the people who will be recipients of whatever you produce is so valuable,” said Monica.

“It’s not just for the act of receiving that information, but it also creates positive relationships, which is hopefully the aim. It creates awareness of the issue already and people start talking about it. As I said before, everyone’s affected by cancer in some way. Basically, whatever you’re developing will be much stronger and have a greater likelihood of doing what you want it to do.”

“And in, in our case for Lotjpa Yapaneyepuk, we want to create resources about clinical trials that reach Aboriginal and Torres Strait Islander people so that they’re aware of clinical trials and myths are dispelled, such as you’re not going to be a Guinea Pig sort of thing.”

“So that if, and when, people are diagnosed with cancer or they have a family member who’s diagnosed with cancer, they are already equipped with some knowledge about clinical trials. And we want to end up with some videos that people can just watch for two or three minutes to learn what a clinical trial is, in a way that’s understandable.”

How can clinicians and researchers better support Aboriginal and Torres Strait Islander patients to consider and navigate trial participation?

“First of all, recognising that the relationship between clinicians and Aboriginal and Torres Strait Islander people is a critical aspect of that engagement with treatment. And so, with cancer treatment, it’s often not possible to have developed a strong relationship before treatment or being offered a clinical trial. But the way in which the decision is held is likely to have a significant impact on how the trial information is received,” Leah said.

“For example, does the person feel respected? Are their questions being answered? Are their responses being respected? But also, I think that you get all this information just knowing that you might have somebody else that you can recontact.”

“And I think it’s that first initial contact if you feel comfortable, that relationship has already started to form. So other strategies include the Aboriginal workforce development, patient navigators or care coordinators as part of the team, telehealth trials, cultural safety and equitable care that help to build trust.”

“Using language that they will understand, no medical jargon. Becoming familiar with the key principles and guidelines for research and practice. So ethical guidelines through the NHMRC code of ethics. And obviously the people that are researchers will understand these acronyms. Another one is utilising a quality appraisal tool. And for health services it’s about following the National Standard, the user-guide of cultural respect from the Department of Health.”

What does a more equitable and accessible clinical trials landscape look like and what needs to happen for us to get there?

“The big picture aims to improve cancer outcomes, and one way of doing that is by increasing participation in cancer clinical trials. And to get there, it’s multifaceted and needs to be approached from every level of the health system. And that’s from pharmaceutical companies. Developing trial designs that are not so restrictive”, said Monica.

“Not having such strict inclusion and exclusion criteria. Looking at ways that the trial managers can support Aboriginal and Torres Strait Islander people to help with their participation. What time of day is best for you for appointment, and why? If you can’t come because you’ve got, you are looking after your grandchild or you’re looking after your parents or something, then can we pay for someone to do that?”

“We need to start looking at other solutions to recognise why people might say, I’m not going to participate because I’ve got other priorities. So, there’s that level at the health system and cancer health professionals, and that’s part of what Lotjpa Yapaneyepuk is doing, by trying to raise awareness of the strategies that might connect Aboriginal and Torres Strait Islander people to the clinical trials.”

“There are other people working in this area as well. Lots of people are approaching it, and our project obviously is focussed on a community level where we’re talking to community members and developing resources as advised by them and our trial experts. But while we are working at community level, we hope what we will develop will be used at a national level and will continue to reach Aboriginal and Torres Strait Islander people outside country.”

“And obviously it doesn’t stop there, there’s a whole range of different avenues to increase awareness and different sorts of resources that could be developed. But I think the key thing is that discussion needs to take place in a culturally safe way. You can develop all the resources you like, but if the offer to take part in a clinical trial isn’t made, or is made in such a way that you alienate the person who you are treating, then that’s not what we want, that’s not a good outcome”, Monica said.

4CASTING the Future: Innovations in Triple Negative Breast Cancer 

 Triple negative breast cancer remains one of the most challenging types to treat because it lacks the common treatment targets, grows and spreads aggressively, is highly diverse and currently has limited effective therapies – but new research is changing the story. 

Associate Professor Rachel Dear takes us inside the 4CAST trial showing how science moves from bench to bedside and what this could mean for the future of triple negative breast cancer treatment. 

“The forecast study is looking at a new treatment for metastatic triple negative breast cancer, in particular, androgen receptor positive metastatic triple negative breast cancer. The study drug is called INO-464, which is an androgen receptor antagonist.” 

“This treatment drug also blocks the production of androgens as well, and in preclinical models, so that means in the laboratory it slows down the growth of cancer and delays time until new metastases occur in preclinical models of metastatic triple negative breast cancer.” 

“And it does this in in combination with IV treatment, including different chemotherapy agents. And so now because of these promising laboratory results, we are testing this in people.” 

Triple negative breast cancer is often described as one of the more challenging subtypes to treat. What makes it so difficult and how does this research aim to change that?  

“Triple negative breast cancer is a difficult type of breast cancer to treat, and in fact, it has the worst prognosis out of all the different types of breast cancer with a median overall survival of only about 18 months.” 

“This is because historically there hasn’t been a target to focus on. It’s defined by its lack of target: estrogen, progesterone, and HER2 are all negative. Unlike hormone receptor positive breast cancer or HER2-positive breast cancer, where we actually have a defined target.” 

“So that’s why it’s difficult to treat, and that’s why this study is so exciting because we’ve identified the androgen receptor as a target for triple negative breast cancer.” 

The phrase ‘from bench to bedside’ suggests this research has come a long way. Can you walk us through how the preclinical findings led to this clinical trial?  

“So, the preclinical findings are the work of Christine Schafer’s lab at the Garvin Institute, where she has been working on repurposing drugs and looking at new indications. In particular, SNOL, an androgen receptor antagonist that has been looked at in prostate cancer.” 

“And then there were early trials internationally looking at its role in breast cancer. But then she started testing it more in the lab, in metastatic triple negative breast cancer cell lines, and found that when she combined it with chemotherapy, rather than giving it by itself, it had much better results because in earlier trials in humans, it had just been given by itself as a tablet.” 

“But when she combined it in these mouse models in the lab combined with chemotherapy, she found that it resensitized the cancer to chemotherapy which meant the cells died better and were controlled for longer.” 

“And so, she’s worked out the exact mechanisms of why this occurs. It changes cell state, it makes cells more sensitive again, when previously they were resistant to chemotherapy, so unless Christine’s lab had done this work, we wouldn’t have then progressed to testing it in a clinical trial in human beings.” 

“I first met Christine almost six years ago. She came to me with this exciting work, and she showed me the graph, and said ‘look what’s happening to these cell lines, what do you think about this? Do you think that this would work in human beings? We know that as a single agent, as a tablet, it’s really safe. Do you think we combine it with chemotherapy?’ So then that meeting between Christine and myself then led to the idea of actually testing whether the combination of the tablet and chemotherapy in human beings are safe, and also now looking to see if it’s an effective combination as well.” 

“It is a phase one a trial, and the purpose of a trial like that is initially to check that the combination of chemotherapy and SNOL is safe. And we have completed that part of the study, which is called dose exploration. So, we are trying to work out what is a safe dose of SNOL to combine with chemotherapy.” 

“We enrolled eight patients into that study, and six of them were eligible for the safety component of the study, and we found that the dose that we started with of SNOL was safe combined with chemotherapy. And we know that this is the same dose that as a single agent was also safe and effective. And it was good to know that unlike other phase one trials.” 

“We were already giving an effective tablet at it. You know, that was likely to be efficacious, and it was such a relief that it was also safe and well tolerated as well. So now that we found in those six patients, the combination of TER and chemotherapy was safe, now we’re into the part of the study called dose expansion, where we are combining the treatments.” 

“And the goal of this part of the study is to see if the combination is effective. The good news was that we already got some early signals of efficacy of chemotherapy combined with SNOL. And in fact, out of those six valuable patients, five of the patients had stable disease. And in a couple of patients, that was quite a prolonged, duration of response to the combination treatment.” 

“So, a hint that what Christine was seeing in the lab, we were also now seeing in our patients in the clinic. The main side effect issue has been not related to the SNOL, but related to chemotherapy. We’re using taxane chemotherapy, either docetaxel or paclitaxel, and a lot of patients have already received that type of chemotherapy.” 

“This means they’re vulnerable to a side effect called peripheral neuropathy, which can cause numbness and tingling of the fingers and toes. And so that’s quite a common reason people come off the study due to that side effect, not because their cancer started to grow.” 

And so how close do you think we are to seeing this move beyond the trial setting? 

“We currently have three people enrolled in dose expansion, and we need between 25 and 29 patients. So, we really need to increase our recruitment to the study. It’s going well, but we need to increase it. But an exciting development is that we just got ethics approval for a decentralized trial model, which means that the chemotherapy can be given as standard of care in a patient’s local hospital by the usual oncologist, and we can ship tablets from the King Hall Cancer Center to the patient.” 

“Using telehealth appointments, we can monitor what’s happening with that patient on trial. So, it takes away issues such as governance at another site. It takes away the time and travel, you know, from a patient who might live in a regional area in New South Wales.” 

“They don’t have to fly to the Kinghorn for this treatment. They can have it all with their usual oncologists. So, I think that by giving that opportunity to enroll in the study that way, that will increase recruitment. And using that telehealth trials appointment, we can already kickstart pre-screening for the study because we have to check their androgen-receptor positive.” 

“That can be done locally and often it is now being added to a triple negative breast cancer pathology report. But we can also get that tissue and test it at St. Vincent’s Hospital as well. And that can all be started early on.” 

What excites you the most about the potential of this research and what it could mean for the future of treating triple negative breast cancer? 

“I’m excited that this treatment offers a targeted treatment approach because I think many patients feel quite disheartened that the main treatment option that they’re offered is chemotherapy. They often think, surely there must be a new treatment that works better than just chemotherapy. So, I think that offering them a targeted therapy that’s well tolerated, that’s a tablet, is very exciting.” 

“And there are other targeted treatments now being studied for triple negative breast cancer. For example, antibody drug conjugates, immunotherapy. But I think that the Tylenol tablets even combined with these new treatments may make them work better. Not just making chemotherapy work better, but even some of these newer treatments.” 

“So perhaps that would just be for AR-positive metastatic triple negative breast cancer, you could still have your immunotherapy. But take an antibody drug conjugate, take your SNOL tablet and maybe it will sensitize the cancer cells to work to be even more responsive to some of the other new treatments coming along.” 

Breast cancer treatments save lives, but sometimes it can leave the heart at risk. Professor Thomas Marwick sheds light on cardiac care for breast cancer survivors, exploring how monitoring and management strategies can protect heart health long after treatment ends.

“I think it’s a very important consideration, and I think we’re recognising increasingly that this is the case. The data is that for women with cured breast cancer their chance of dying from an illness is much more likely with a cardiac illness than their original cancer. And there’s several reasons for this. It seems as though heart failure is the dominant issue here rather than, for example, coronary disease.”

“And there’s several drivers for it. There are probably similar things causing the cancer that cause the heart failure. The toxicity of some treatments is important and then there may be some direct effect of cancer on the cardiovascular system that increases the risk as well.”

What are some common cardiac risks or complications associated with breast cancer therapies?

“The way I look at this is really at the time of treatment and then afterwards. So, at the time of treatment anthracyclines are a group of cancer-treating chemotherapy that have been used for a long time and are decreasingly used in breast cancer, fortunately, but still required in some situations.”

“And then there’s a number of other molecules such as trastuzumab, that are used for this as well. Both of them can have adverse effects on cardiac function. So, we monitor the heart very carefully during cancer treatment and it may be necessary to initiate some sort of protection. And then after cancer treatment people have got some legacy of their cancer or their treatment that goes on for years.”

“And then on top of that, various things happen in people’s lives. They gain weight, they get diabetes, they get high blood pressure. All of those things are drivers of heart failure, and so we think that it’s important to have some sort of ongoing surveillance for cardiac problems in addition to the normal cardiac prevention strategies of controlling blood pressure and cholesterol and those kinds of things.”

Are patients typically monitored during and post-treatment?

“It depends on the nature of therapy. If either of those treatments that I mentioned anthracyclines or trastuzumab are being used, then usually an assessment of cardiac function, most commonly an echocardiogram, an ultrasound test to the heart, is done at baseline and then with some frequency during follow up.”

“Different oncologists and different cardiology groups use slightly different strategies for this, but essentially the cardiac function should be checked in that year of cancer treatment. We would say four times. Obviously, it depends on the circumstance and the level of risk, and then afterwards, I think there’s a need for the patient or the person who’s being cured from breast cancer to be followed up by their GP in the knowledge of what they’ve been treated with, because that will impact on the threshold of monitoring.”

“But certainly, awareness on the part of the patients is really important here, so that people who, for example, are developing exercise intolerance with the passage of years, that often the response is I’m just getting older, or I’ve put on a bit of weight, so I’m getting a bit short of breath.”

“You can’t afford to make that sort of decision in the context of having treated breast cancer. So, awareness on the part of the patient and the doctor. There is a lot of controversy at the moment about whether people should have ongoing monitoring with echocardiography. I think it really depends on the risk, and we have worked on a risk score to try and understand this a bit more, but it’s work that needs to be tailored to the patient.”

Are there challenges in balancing effective cancer treatment whilst needing to protect cardiac function for certain patients?

“I think that is often a concern, but there’s protection that we would use to begin with are a group of drugs called neurohormonal protection. That’s to say ACE inhibitors, angiotensin receptor blockers and beta blockers. And they don’t really have an effect on cancer. There are some treatments, there’s one particular one called Dexrazoxane that has been used in people having anthracyclines.”

“The concern with that has always been that it’s detrimental to the effect of the anthracycline. I think the evidence is not pointing that way from my reading of it. But that is a concern. But in general, I think it’s reasonable to understand that these are separate things and the presence of the cancer shouldn’t inhibit the desire to protect the heart.”

“And of course, the thing that you most want to avoid is concern about the heart interfering with the cancer treatment itself. And that’s something that you know should occur very rarely indeed.”

Are there emerging technologies or approaches that could improve early detection or prevent cardiac issues from occurring in the first place?

“Yeah, we are really interested in that. One whole area that’s important here is exercise. Interestingly, I think this is most important in relation to the effect of chemotherapy on the heart. Because chemotherapy obviously involves lots of things, including blood vessels and muscles.”

“And we think that some of the problem here relates to reduction of activity and, therefore the reduction of the small vessels that the heart ejects into, which puts an increased load on the heart. And there is evidence that by exercise training during cancer, you’re able to avoid that process. So that’s important in terms of detection.”

“There are some new technologies that are coming through. Obviously, there’s a challenge of doing a repeated echocardiogram, and it may be possible to get similar information or at least screening information from an ECG not the sort of things that we measure on an electrocardiogram, but things that the computer can detect. And we are working very actively in that space. So, it’s not really for prime time, but it may be part of the future of surveillance in this situation.”

And are there things that patients can do to reduce the likelihood of cardiac events occurring during their breast cancer treatment?

“I think during treatment, maintaining activity is important and some centres, particularly overseas, are offering essentially a rehabilitation or a prehab process, if you like to try and stop people losing that functional capacity. I think attendance to controlling risk factors is really important. We track various measures of cardiac function, and I’ll never forget a particular patient I saw, while I was still working in America, who seemed to be doing fine and then came in and these measures were really seriously awry.”

“And I spoke to her about what was going on, and in fact, her youngest child had just left the family home to go to university, which of course, is a big deal. They travel right across the country, and her blood pressure was up, and it’s just an illustration about how standard risk factors impact cardiac function and on top of the injury of chemotherapy, that can be very detrimental. So, attending to the humdrum routine, and controlling one’s blood pressure is really important.”

And so, what advice would you give clinicians and patients about integrating cardiac care into survivorship planning?

“Look, I think that this is a very important area in multiple cancers. Breast cancer particularly but also haematological malignancies because they often occur in older people. I think the person at the centre of this is the primary care physician or general practitioner. They need to have knowledge of the nature of chemotherapy and the dose of chemotherapy. And although that sounds trivial, I can tell you as a researcher in this space for a number of years, I find that really hard to obtain.”

“And yet that is very influential in deciding how intensely to follow the patient up. So that’s important. And then if there are any areas of concern or any areas where risk factors are not being controlled, then seeking help early in the piece is very worthwhile.”

“So, there are a group of cardiologists now, an increasing group who are being trained in cardio-oncology, and this interface between cardiology and cancer. And that’s important and those folk bring expertise to this area. That will hopefully stop, the cancer patient of today, turning into the heart failure or cardiac patient of tomorrow.”

And so, what are your hopes for the future in this space?

“My hopes are very much related to the surveillance of this as a cardiologist, whenever I see a patient coming into the hospital with heart failure. I always feel this is an avoidable problem. This is a detectable problem early and people can get into really deep water and it’s avoidable. So, to me, the issue is about surveillance.”

“It’s about identifying people who are at risk and then maintaining some means of knowing when things are going awry and our work is very much focused on producing a kind of strategy of understanding clinical risk and then layering on top of it the artificial intelligence and ECG components, and then the echogram to identify people where the cardiac function is going off.”

“And then moving with cardiac protective medications to stop the situation getting worse and yes, I think we’re on the path to that, but it’s a lot to change and changing clinical practice is not easy. So there’s still work to be done.”