Rebecca Angus is a senior podiatrist with a personal history of breast cancer, being diagnosed with the disease in 2018 at just 33 years old. She is also a member of the Breast Cancer Trials Consumer Advisory Panel, who provide a patient’s perspective in all aspects of clinical trials research.

We spoke to her about the importance of patients having a voice when it comes to their treatment.

“So, in an era where information and collaboration with consumers on providing treatment optimisation and designing the best clinical trials with consumer engagement, we discussed what the consumer’s perspective is on endpoints.”

“I think what we found was that there is a real lack of evidence and understanding around clinical endpoints. So, in the future I feel that we need to empower patients with education and more understanding around what clinical endpoints mean and what they mean for their treatment.”

“That’s only going to happen through forming the right language around clinical endpoints and with treatment practitioners actually engaging with their patients and explaining it a little bit better so that they understand what’s going on, what the outcomes are, and what the aim is for their current treatment.”

How can understanding the ‘end point’ empower patients in their treatment decisions and discussions with their healthcare providers?

“I guess it just depends on how much patients are reading the research and how much they really understand. So obviously, we all want overall survival. But we also want good quality of life with our treatments as well. And there is a balance between both of those things. So, I feel like understanding what a treatment is going to do for you, is important for the patients to understand all the side effects.”

“So, think it’s important that patients understand all aspects of how it’s going to impact them. We all know that cancer treatment does have many impacts, and impacts different aspects of a patient, but it is also reassuring, for patients to know that through being part of a clinical trial, the researchers are going to look at all aspects of the patient and not just focusing on what a particular drug is going to do to you.”

What are your hopes for the future?

“I really hope for more consumer engagement on clinical endpoints and working out what’s important to patients. Whether or not it is more quality of life aspects of a clinical trial, and having them put into earlier phases in clinical trials so that we are capturing some of the patient voice earlier on.”

Dr Nicholas Zdenkowski is a medical oncologist and medical advisor with Breast Cancer Trials. He is the Chair of the Breast Cancer Trials Scientific Advisory Committee and works on a broad range of breast cancer research, including shared decision making, clinical trials and patient reported outcomes, particularly around neoadjuvant systemic therapy.

We spoke with Dr Zdenkowski about the importance of collaborating with patients and why their involvement is crucial for the success of a clinical trial.

“Collaboration with patients on clinical trials is crucial to the success of those trials, and there are two main aspects to that. One is in the design of the clinical trials, and that’s where consumers come in and a consumer is somebody who has a lived experience of a medical condition. They are able to give an understanding and commentary about how that medical condition, in this case breast cancer, affects people with that condition, and how that research might be able to be optimised to give the best outcomes for those patients who are diagnosed with breast cancer.”

“There’s a lot of complexity in designing clinical trials, and so consumers also have a lot of training to allow them to understand the research processes that takes place to be able to give the best advice and to help strike that balance between a good clinical trial that is going to ask a question but that might not be feasible or practicable and the trial that might be very practical, but doesn’t necessarily answer the question.”

“We need to be able to produce interventions or new treatments that are going to improve outcomes, and that people are going to be more informed, and willing to receive a new drug that has lots of side effects is something that people aren’t going to want to receive.”

“So, we need to work with consumers right from the start of those clinical trials through to the reporting of the clinical trials. The second aspect is in partnering with the potential trial participants.  So, trial participants are key to understanding the effect of an intervention, and that’s what we’re doing in trials, is working out if some new way of treating breast cancer can improve those outcomes.”

“And that might be reducing the likelihood of breast cancer returning. It might be the same degree of prognosis, but with reduced side effects, or it might be related to having less treatment with the same outcomes. And that’s something that Breast Cancer Trials has been quite interested in. So, working with those trial participants is very important and allowing trial participants to contribute fully and to understand what they’re participating in is the second key aspect of a successful trial.”

Learn more about participating in a clinical trial.

How can potential participants make informed decisions about participating in a clinical trial?

“There is a process of consent for a clinical trial. Consent is often considered in the form of a document. The document is called a patient information and consent form and that is signed by the patient when they are examined and becoming a trial participant.”

“The real consent is in understanding what the trial involves, and so signing the piece of paper is just the documentation of it, and it’s often a very difficult document to understand. It might be 20 pages long. And so having those discussions is crucial. That’s with the clinician, with the doctor who is offering that clinical trial, with the clinical trial coordinator, who is often a nurse who can sit down and take some time to explain some of the nitty gritty around the trial and what it involves.”

“Taking some time to go and talk to loved ones, talking to other doctors, a GP for example, and then coming back and asking questions, and really understanding what they’re going to get into. If they have reservations, often that can be addressed about what the trial involves, but ultimately, it’s a choice.”

“It’s not an obligation to participate in a clinical trial. For some people, it just doesn’t fit, and if they’ve thought about it, and decide against it, then that’s no problem. That’s not an issue at all because my real expectation and hope is that for people who participate in clinical trials, they do their best to continue with that clinical trial to enable the trial to collect the information that is going to lead to outcomes from the trial that we can interpret and then introduce into routine clinical care.”

Learn more about what is meant by Informed Consent and other key terms used in breast cancer research.

How important is clear communication between a medical professional and a patient during the clinical trial process? What should patients expect?

“The patients should expect that the doctor talks about what standard care is in the first instance because that’s what we have available and then after that they would talk about the potential clinical trial that’s available and I would expect that it is a very clear process and that they take the time right at the outset for the potential trial participant, who’s currently their patient, to really understand what’s going to happen as part of that trial.”

“It’s a problem if later on down the track there are surprises. If there’s a surprise as a result of the trial that could have been anticipated, then the patient might be wrong footed, and they might then feel as though participating in the trial is not for them.  And if they then pull out of the trial, which is well within their right, that has the potential to reduce the impact of that trial.”

“Or if too many people drop out of the trial, then the results just may not be interpretable, and the trial is done in vain. And that’s a shame because of the amount of effort that goes into running clinical trials. So having that time up front is just so crucial.”

Learn more about the importance of language between patients and their health team.

What support systems are in place to assist patients when participating in a clinical trial?

“An important component of clinical trials is the involvement with the clinical trial coordinator. So, a clinical trial coordinator is there to help smooth that process. It can feel a little bit overwhelming to many people because cancer is really confronting and it’s an emotional process going through a cancer diagnosis and treatment.”

“And then to layer the complexity of a clinical trial on top of that can just feel too hard. But having a clinical trial coordinator helps and goes a long way to smoothing that out and making it a whole lot easier, and in fact, they coordinate a lot of the treatment for those participants to make it easy so that they can come in, have the trial treatment, and be a source of questions and answers.”

“There’s a lot of information out there about clinical trials as well. Breast Cancer Trials has information about clinical trials. Breast Cancer Network Australia has information as well. And what I’m seeing overall is that society understands that clinical trials are a key aspect of routine patient care.”

“And so, there’s increasing acceptance of clinical trials and a lot of oncologists see clinical trials as being crucial. So that people come in asking about them and understanding what the trials are about. And that makes people more confident that the clinical trials are a treatment that they can rely on.”

Learn more about clinical trials.

What are your hopes for the future of breast cancer research?

“That’s a hard question to answer. There’s lots of things that that we can do, and over the years we’ve seen reduced breast cancer mortality, more people surviving breast cancer, and over the coming decades, I think that it’s going to take a long time before we can prevent breast cancer, but I’d like to see a lot more breast cancers prevented and there are ways to do that.”

“I would also like to see patients have sufficient confidence that they can live their lives after a diagnosis of breast cancer, without having to worry about the potential for that cancer coming back, that we can tell them for sure that this cancer is really not going to come back. One, because the treatments have been so effective. And two, because we’ve got a test or another way of knowing that for that individual, the cancer is almost certainly cured.”

Dr Deme Karikios is a medical oncologist working at the Nepean Hospital in Sydney. He has a clinical and research interest in thoracic and gastrointestinal malignancies. We spoke to him about the importance of quality-of-life outcomes and looking beyond survival rates when discussing treatment success.

“So, I think outcomes that matter are those that really meaningfully improve the patients’ lives, whether they have metastatic breast cancer or any other type of cancer or illness for that matter. For us as a movement, we think those main things are survival time, so how long you live and also the quality of that time.”

“I think they’re the two main things that matter to really anyone living with any illness, and the most important things we can measure in any trials we do looking at new treatments.”

How does focusing on these outcomes enhance patient centred care in oncology?

“So, if we imagine doing studies and trials of new treatments, where we measure things that don’t actually improve people’s quality of life or survival, then we’re sort of wasting their time. There’s a number of concerns with that.”

“Coming to the doctor and having tests and having all this treatment, which may cause many side effects, which doesn’t actually improve things for years is terrible. So, we want to really avoid that. So really doing research that tries to identify outcomes that matter and measure them better is only going to ultimately help individuals with cancer to feel better and live longer.”

What are some key indicators of quality of life that are considered most important in evaluating treatment outcomes for breast cancer survivors?

“Yeah, it’s tricky because I think I guess it depends on the tool you use. I’m not personally familiar with all the best possible tools to use in someone with metastatic breast cancer or any breast cancer survivor for that matter.”

“I think using a quality-of-life tool that really captures what’s important to patients is what we should be aiming for obviously. We want to make sure that tool is validated, so it can measure what it says it’s measuring. I guess ultimately if we get that right and get the measures right, I’m not sure exactly what should go into those tools, but if we get that right, then we’re going to be more certain that the treatments we’re offering patients do really improve their quality of life and ultimately make them happier and feel better.”

Why is it important to look beyond survival rates when discussing treatment and success in breast cancer?

“I still think survival is one of the most important things. If I was having treatment for cancer, I’d want to know how long I’m going to live or what’s my chance of cure with this treatment versus that one. But of course, we want the journey on the way to be of the best quality as possible.”

“So, I think a lot of trials that we do, whether it’s within trials groups like Breast Cancer Trials, or any trials groups, don’t focus on quality of life enough and that’s because it’s challenging to measure and often expensive and takes longer. I think we need to put a lot of effort into that so we can make sure however long someone might live with cancer, that their quality of life is as good as it can be or we’re measuring it as good as we can be.”

“So, I think for focusing on the things that matter to patients, then it’s much easier to explain what benefits a certain treatment has. If you can imagine when you’re talking about things like whether a tumour shrinks on a scan or whether the pathology is good or bad, they’re things that are a bit abstract. What I like about trials that measure survival and quality of life, are that you can explain to someone more clearly what benefits they will have.”

“You can say, ‘you’re going to likely live six months longer or 12 months longer with this treatment’. Or ‘you might have a 10 percent chance of cure if you have this treatment’. I’m talking about those other concepts. Sometimes it’s a bit difficult to explain to a person, what does that really mean to me? What does that mean long term?”

“That information is useful but isn’t helpful to them when making treatment decisions. I think when we’re talking to patients, we want to be as clear as possible about what benefits they actually should expect. And so, I think that’s why we need to focus on those outcomes that matter to them because then you can explain to them, ‘this is what this treatment will do for you’.”

For women who might currently be navigating breast cancer, what advice would you give them in terms of prioritising outcomes that matter to them personally?

“I think it’s about talking to your treating doctor, whether it’s your surgeon, radiation oncologist, medical oncologist, whoever it is about what matters to you. Of course, we think survival and quality of life matter most, but there may be specific things that matter to the individual and raising them any time along the journey is important because I think then the treatment that is offered to you can be tailored based on those wants and needs.”

“For example, patients might say, ‘I want to come in less often because I have to care for my child’. And I think that’s useful, because then we can sometimes offer them a treatment which is less frequent or perhaps give them less treatment because those things are more important.”

What are your hopes for the future of breast cancer research?

“I’m not a breast cancer doctor, but I am obviously involved in cancer care research, and I think obviously if we could get a cure for breast cancer, that’d be fantastic. I think that happens with early disease, which is great. But what I would love is for patients to have the best possible treatment that helps them live the longest but feel the best.”

“You know, in an ideal world there is a treatment, even if you have an incurable cancer, a treatment that you can stay on forever without any quality of life issues and you can live a length of life that you would normally live.”

Professor Sunil Lakhani is the Chair of the Breast Cancer Trials Board of Directors. He is a clinical diagnostic pathologist and also heads up a research team at the University of Queensland, comprising scientists and clinicians ensuring a translational focus to the program. We spoke with him about ductal carcinoma in situ and how it relates to breast cancer.

“So, DCIS stands for ‘ductal carcinoma in situ’ and the reason why it is called ‘in situ’ is because we are talking about a disease process, a cancer that is still confined within the ductal and lobular structure of the breast. So, in other words, it’s inside the tube-like structure in which the cells are normally present, which are benign and then eventually turn into cancer, but they’re still confined to the ductal lobular tree.”

“In order for the disease to be invasive, and therefore, how it differentiates from invasive cancer is that the cells have to break out of the tube-like structure and invade the surrounding stroma that contains those ducts. And so, in that sense, it is a cancer, but it is not a cancer that is broken out of its structure in which it is arising.”

“And therefore, doesn’t really have a propensity to spread to different parts of the body. So, it’s a good prognostic cancer. Because it is not invasive and therefore doesn’t have access to blood vessels and so on, in order to spread to the other parts of the body.”

“So, in the old days, you know, 50-100 years ago, DCIS would have been diagnosed because patients presented with a mass in the breast or pain or some other symptom. But these days almost all DCIS is diagnosed because of the mammographic screening program. Some types of DCIS have a propensity to get calcification within it because of the cells dying.”

“And when the cells die, that necrotic tissue often gets calcium deposited into it. And so, on the mammographic screening, the radiologist might pick up types of calcifications, which make them suspicious that it is present inside the ducts, and therefore that patient may have DCIS. So, most DCIS these days is actually picked up because of mammographic screening programs.”

What are some key pathological characteristics of DCIS and how might these impact its management and treatment?

“So, as I said the DCIS is basically a carcinoma in situ, meaning that the cancer cells are present inside the duct. And so, at biopsy, when somebody is suspicious that a patient has DCIS, that biopsy shows us that there are these atypical cells inside the duct.”

“And then we use features relating to how bad it looks to decide whether it is benign or malignant. And once we have decided that it is DCIS, we classify it according to the growth pattern in which we see those cells. But more importantly we grade them or type them by the nuclear characteristics, into low grade, intermediate grade, or high grade.”

“Now, these are not absolute categories. They are a continuum. But we try and separate these types of DCIS into those that we think might be less aggressive versus more aggressive through grading them into low, intermediate, and high. And all DCIS is managed mostly by surgical treatment, so you excise it.”

“And if you have a conservation operation, in other words, not a mastectomy, the patient will often have radiotherapy to try and reduce the risk of recurrence. The high-grade ones are more likely to recur than the low-grade ones. But overall, the treatment strategies are similar in that surgery is the mainstay, followed by radiation.”

“Pretty much all DCIS will have surgical treatment. The radiation is given if the operation is limited. In other words, it’s not a mastectomy. So, if it’s a conservation operation, for example a wide local excision, then radiation is usually given in order to reduce the risk of recurrence coming back into the breast.”

“The recurrence is also dictated by how wide the margins are during the surgical excision. But generally, the patient will receive radiotherapy to reduce recurrence.”

For women who have been diagnosed with DCIS, what important information should they know about the management of their condition?

“So, when they have a diagnosis of DCIS, they will go and see the surgeon, and then following the surgical treatment, they’ll also see a radiation oncologist. And so, they’ll get information relating to what type of DCIS it was and what kind of surgical procedures have taken place and, therefore the likelihood of recurrence depending on what grade it is.”

“But actually, most patients with DCIS will do well, and certainly there’s a very low risk of dying from the disease. Unless it recurs in the future, you know, with some other disease.”

How can knowledge about DCIS empower women in their healthcare decisions and discussions with their medical team?

“Well, I mean once you have a diagnosis of DCIS, obviously you’ve therefore had the disease and knowing that you’ve had the disease is important so that you can have regular screening where you will hopefully identify if any recurrence takes place. But the important thing is not to be over-anxious about it because it hasn’t broken out and become invasive and therefore it’s manageable and it’s highly unlikely that a very big harm will come to women with a diagnosis of DCIS.”

“So, they shouldn’t be scared of it and there’s certainly possibilities in terms of the screening program that will help to make sure that if there is a recurrence, it will be picked up sooner rather than later.”

Dr Sarah Zardawi is an early career medical oncologist who has trained in palliative medicine. She has a private practice in Maitland, New South Wales, and is working as a clinical fellow at Breast Cancer Trials in Newcastle.

“Cancer medicine and clinical trials are increasingly targeted as we try and deliver personalised medicine for patients. As a result, we’re testing more and more specific things in more and more specific situations, which is great for patients in terms of patients getting the right treatment at the right time with as few side effects as possible.”

“But it means that it’s increasingly difficult for clinical trials to find those patients and run the trials in those patients. So, our project is about trying to expand recruitment and reach more patients to try and catch those patients that are eligible for these increasingly specific clinical trials, and also just reach more patients in general that might not live in a metropolitan area.”

How has telehealth transformed the way that breast cancer clinical trials are conducted and what are the advantages and potential limitations?

“So telehealth is an increasing priority in healthcare and particularly after COVID-19, patients are increasingly wanting and expecting telehealth because of the benefits in terms of convenience.”

“So clinical trials are very complicated, and it is difficult to run a trial entirely via telehealth, but that is an increasing research priority. Our project is just a small part of the clinical trial process, wherein we’re trying to help find the patients that are eligible for some particular breast cancer clinical trials using telehealth.”

“So we’re taking the travel and the logistics out of the first part of the clinical trial process, where patients are able to be assessed remotely via telehealth, to see if the trial would be a good fit for them. If they’re a good fit for the trial we connect them with a main trial site, which does involve them travelling, but we’ve at least streamlined the start of that process for them.”

“So, it’s a new process for us and we’ve had to develop some new systems to be able to receive referrals, review patients, test patients, and communicate the results back to patients and to their regular oncologist. So, it’s definitely been a logistical process that we’ve worked through.”

“We’re hoping that we’ll be able to use this for more and more breast cancer trials in the future. Because as I said before, our trials are increasingly trying to target very specific patient groups.”

What impact does telehealth have on making breast cancer clinical trials more accessible to women in remote areas?

“So, most breast cancer trials are run in major cities around Australia, which obviously means that there can be travel involved for patients that live away from those major cities. So, we’re hoping that with telehealth we can remove that travel component for patients. And as a result, those patients will have access to breast cancer trials and the treatments that are being investigated.”

“We also hope that it will improve the quality of our breast cancer trials data, because it will mean that it’ll be representative data. So, we will be testing treatments in real world patients as well as taking trials to patients that live more rurally. We’re hoping that by making it easier for patients that live a bit more regionally or rurally to participate in breast cancer trials, the data that we’re collecting about how breast cancer treatments work will be more representative, and more able to be applied to a real-world population.”

“So, one of the major challenges we’ve experienced so far is actually getting the word out there about the fact that we are offering telehealth for that introductory part of some of our clinical trials.  We’ve got a great communication set up with existing Breast Cancer Trials sites and there are staff there that we work closely with.”

What role do educational initiatives play in increasing awareness about the benefits of clinical trials among patients?

“So clinical trials offer a range of benefits for patients in addition to testing a potential new intervention in patients. We know that the extra supervision and monitoring increases outcomes. So, it improves the outcomes for patients, even if they’re allocated to the usual standard treatment in a clinical trial.”

With clinical trials it’s really about reaching patients, and the more awareness that there is about the benefits of trials and the way that trials are run carefully, safely, and appropriately, wherein patients aren’t guinea pigs at all, but they are well cared for with the care that they need, receiving quality treatments, which are at least the best current standard of care. The more patients know about that, and hopefully the more willing they will be to participate in clinical trials and help us to improve our breast cancer treatments for the patients of today and tomorrow.”

“So, I think patients being aware of the benefits of clinical trials and also aware of any particular clinical trials that are relevant to their specific situation will just help with our research process, help us recruit those patients, reach those patients, and collect good data.”

Associate Professor Amy McCart Reed holds a PhD in molecular biology from the University of Queensland and has undertaken a series of studies investigating the genomic landscape of certain breast cancer types.

She is passionate about breast cancer research, biobanking, and precision oncology. In addition to her breast cancer research portfolio, she is on the Scientific Advisory Board for Breast Cancer Trials. We spoke with her about lobular prognostic biomarkers and their role in breast cancer diagnoses.

“So, lobular breast cancer is the second most common breast cancer, and it accounts for about 15 percent of all breast cancer diagnoses. But we don’t know as much about lobular breast cancer. For a long time, it’s been sort of sidelined from research.”

“The lobular participants in clinical trials data were not analysed, and so we’re not very clear on how to manage these cases. And currently they’re managed the same as any other breast cancer patients, based on their expression of estrogen receptors or progesterone receptors. And so, there are some aspects of their management that still remain unclear.”

“So, we have been working to try and develop a prognostic test or predictive biomarker test to help us look at the different lobular cases and work out which patients will do well, and which patients are less likely to do well and may need a more aggressive intervention plan.”

How do lobular prognostic biomarkers influence decisions regarding treatment options for breast cancer patients?

“At the moment, the biomarkers that we’re developing are antibody-based biomarkers and we have a provisional patent application submitted and we’re looking to develop a mechanism where we can do two biomarkers staining at the same time that we would do an estrogen receptor stain.”

“And we want to work out from the point of diagnostics whether the lobular samples that we’re looking at have a low risk of progressing and having a poorer outcome or have a high risk. So, at the moment there aren’t any available but we’re working on them.”

How do lobular prognostic biomarkers contribute to personalised medicine approaches in breast cancer treatment?

“These kind of biomarkers for specific breast cancer subtypes are critical in personalizing care. We need to be able to look at an individual patient and work out which patient is likely to respond to which therapy. At the moment, we treat lobular breast cancers the same as an invasive carcinoma of no special type.”

“So, there’s limited precision medicine taking place for this cohort, and we really need to improve on that.”

How are lobular prognostic biomarkers changing the way that breast cancer is managed or treated?

“I see that these kinds of biomarkers are really complementary to traditional approaches and will be a companion diagnostic, which can help to inform new strategies for these patients alongside our existing strategies, which for a number of patients do work very well.”

“At the moment we are validating these biomarkers in independent cohorts from collaborators around the world and should this pan out we really hope to be able to move towards some sort of a clinical trial or an implementation study and then move these biomarkers into the clinic so that we can help get some more equitable precision medicine across breast cancer care in Australia and around the world.”

What are your hopes for the future of breast cancer research?

“We need to be very careful about who we give certain drugs to. And we have the tools to do this, but we don’t really have the mechanism to make it an equitable rollout for everyone. So, I think there’s great scope for improving the drugs that we have and how we prescribe them, but also for developing new drugs and treating each breast cancer patient individually.”

Dr Syapiq Long is an early career medical oncologist. He graduated from the Royal College of Surgeons in Ireland and moved to Australia in 2015 to complete his training in medical oncology.

He is currently working as a joint fellow at the Calvary MARTA and Breast Cancer Trials in Newcastle. And we spoke with him about survivorship and some of the challenges that patients face after completing their treatment.

“So today my talk will be about survivorship. And just briefly I think it’s becoming more relevant in this day and age, particularly with the increasing number of breast cancer survivors. We’re seeing the oncologists, and all of the doctors are doing so well at picking up breast cancer early and our improved treatments to the fact that we’re having increasing number of breast cancer survivors.”

“But also, I think there are some overlooked issues that cancer survivors can have that maybe we need to bring some awareness about, and that’s why I’m doing the talk today about it.”

What are some common challenges that breast cancer survivors face after completing their treatment and how do these vary from individual to individual?

“I suppose certainly there’ll be a huge variation as to the individual experience particularly around the challenges that the survivors have. But overall, the challenges are broken up into physical, social, and psychological challenges. And I do feel genuinely that some of this is an area of unmet need.”

“Most survivorship care involves us as oncologists treating the physical aspects of long-term effects of treatment, but rarely I think are the psychological and social aspects dealt with, in a comprehensive manner. And that’s down to various issues, particularly healthcare systems and the limited capacity and resources to deal with them.”

“But some of the physical challenges, for example, things like the menopausal symptoms that come with the treatments, chemotherapy and hormonal therapies, things like heart flutters, weight gain, night sweats, fatigue or tiredness from the treatments that they have.”

“Also, some of the sexual issues that come with the treatments, sometimes the loss of the ability to have a child and become pregnant, or some of the physical issues. That’s just skimming the surface, obviously. But some of the psychological issues as you can appreciate are the anxiety that comes with treatment, and the mood related problems that come with feeling low and depressed from having such a diagnosis, as well as the fear that cancer can come back at any time.”

As you can appreciate also, this will impact the individual socially, the relationships that you might have and your ability to continue to work. And so, I think we probably don’t deal with enough with these psychosocial issues as well as we should do. And I think that it’s good to bring awareness to them.”

How can a treatment team best support breast cancer patients who participate in clinical trials, especially in addressing the challenges that they face post treatment?

“Trial coordinators are probably the primary people that will make contact with participants who have completed their treatment, and these are the cancer survivors. And, you know, they will usually be the first ears that will hear all the problems that patients have been facing. And I think they are a good point of contact to, as their name suggests, they coordinate the care for patients.”

“So, finding out about their problems, identifying it, and then bringing it to the attention of the relevant teams, be it the oncologist, the general practitioner, or other health disciplines that might be able to assist, including physio, exercise physiologist, social worker, etc.”

“But obviously that’s all down to the resources that are available at the center that’s involved. But it’s a call of action for trial coordinators to be aware about all these issues so they can take initiative.”

What are some strategies or resources that trial coordinators can implement to best assist breast cancer survivors when coping with issues like fatigue, anxiety, fear of recurrence?

“I think initially patients will come out and I’ll tell you about all these problems. I suppose most of the time things like fatigue, anxiety, fear, recurrence, you know, a lot of it can be dealt with, through self-management strategies and things that we do all the time, such as listening to them, referring them to some mindfulness resources that are available on the internet. And I think for more complex cases, thinking about where we can make referrals to the relevant, allied health services, particularly psychologists when we talk about anxiety and fear of recurrence.”

“So, they have other strategies to rely on in terms of helping with their treatment. And I think from a fatigue perspective, certainly exercise and encouraging healthy living and promoting a healthy lifestyle after cancer treatment can help.”

“There have been suggestions that depending on what level of intensity of exercise when we talk about low to moderate exercise, there was a set number that was given, but it worked out at roughly about 30 to 40 minutes of low to moderate intensity exercise. So that’s exercise which doesn’t put you out of breath, but you are doing something like walking at a reasonable pace. Whereas at a high intensity of exercise, where, for example, you have more difficulty in completing sentences, a shorter period with 20 to 30 minutes is sufficient.”

“We’re still finding out a lot more about how we dose or prescribe exercise. And I think, you know, certainly an exercise physiologist and having access to that type of service would be very beneficial for patients.”

And could you highlight some clinical trials that are specifically focused on addressing the needs of breast cancer survivors after completing treatment?

“I’ll highlight some breast cancer trials that have looked at some survivorship issues, not specifically exercise, but for example the POEMS trial, which looked at the use of an injection given subcutaneously every month, when patients are on chemotherapy treatment to essentially prevent or to shut down their ovaries, and somewhat protect them, to allow a quicker recovery after they’ve completed their treatment.”

“And it’s shown that women who had these injections during the time of the chemotherapy, it did allow for them to still parent a child and have a pregnancy. And in some ways it did preserve their fertility as well.”

“So, you know, I think that there are trials like that that have been done in the past. I don’t know of all the specific trials that are happening in the current space, but certainly I think these are some of the initiatives that need to be taken, particularly more trials that look at addressing some of the survivorship issues, some that are even more challenging, such as cognitive dysfunction that can happen after chemotherapy and also neurotoxicity like peripheral neuropathy, which is quite common amongst breast cancer patients after their chemotherapy.”

Looking ahead, what advancements or new research areas do you forsee in supporting breast cancer survivors through clinical trials and survivorship programs?

“I mean we’re in the digital age and I think there’s a lot of potential to look at some digital tools that can particularly look at symptoms that patients are self-reporting and encouraging patients to self-report their symptoms as a result of long-term effects of treatment and potentially look at providing some self-management interventions where appropriate, and subsequently make referrals if their symptoms are severe.”

“I think that’s potentially one of the avenues that is possible, particularly when we talk about where we can advance in terms of survivorship research. I think there’s also some scope to look at how we collect data around the health quality and how we can best apply that to look at better interventions that we can propose for survivors to address some of the survivorship issues.”

“I think that might be a better place to start before we look at newer interventions. It’s trying to see how we can collect better data around some of these issues.”

What are your hopes for the future of breast cancer research?

“I think the model of Breast Cancer Trials, you know, try and save lives. I can see that we need to improve our treatments that we have, but not necessary to give more treatments to patients because they come at a cost. As we can see from the survivorship perspective patients are surviving, but unfortunately cost to their quality of life.”

Ms Shavaun Wells is a proud Tungurrung woman. The concept of improving Indigenous health, wellbeing, and quality of life resonates with Shavaun and has influenced the roles, research, and studies that she has undertaken.

Shavaun is a Senior Fieldwork Officer on the Kulay Kalingka study, a National Cohort Study aiming to understand Aboriginal and Torres Strait Islander people’s beliefs and attitudes about cancer, engagement with cancer screening programs, and experiences with cancer diagnosis, care and treatment to improve experiences and outcomes. And we spoke with her about the importance of this research.

“I’ve been working as an aboriginal health worker for the last nine years, and I fell into to research. All the women who have passed in my family have passed from breast cancer, so it was more of a passion piece of work to do than an actual job. And I’m currently leading the Kulay Kalingka study.”

“We launched the Kulay Kalingka study last July in Condobolin and we wanted to launch it in a community instead of a university. We launched the video when we were there, so we filmed a video on the day of the launch, which was great to see.”

“Kulay Kalingka translates to “net bag in the water” in Ngiyampaa (Wongaibon) language. Woven net bags have been used by rainforest Bama (peoples) to process highly toxic foods, whereby foods are placed in net bags and run through a slow-moving stream to leach out their toxins and make them safe over time.”

“So the artist who designed our amazing graphics, his name is Bernie Singleton. His wife had stage four ovarian cancer when he was designing this. He’s an Aboriginal man, and he had this idea of designing a net bag to put her in the net bag and let the toxins drain from her body like Aboriginal people would do with fish back in the day to drain out any toxins.”

“We heard his story, and we just went, that’s what we’re doing. So, we did some work with Condobolin, but we had this one lady there and she had five kids. She had to travel five hours to Sydney to undertake a breast screen. She was diagnosed with cancer, so she had to find a babysitter for her five kids.”

“She had to hire a car to get to Sydney to get a treatment. She hit a kangaroo on the way back, she didn’t have the proper insurance, and then was sort of $20,000 in debt from trying to receive her diagnosis, and then she stopped undertaking any treatment after that. And we’ve had so many men say to us ‘I drove to the hospital, but I didn’t know where to park, so I just left’.”

“So, we collect data through surveys. We were really worried about causing Aboriginal people distress when they were talking about their cancer journey, but it was the opposite effect. People were saying, I’ve never had a platform to tell you, or to tell anyone what is going on with my cancer and what I didn’t like, what I did like and what the barriers were for me.”

“So, people have sort of found it a really nice way to get their journey outwards. And we just collect surveys, but we’ve had probably 15 people come to us and say I want to tell you about my journey not just tick boxes.”

“So, we’re just speaking to a 19-year-old Aboriginal man on the Gold Coast who had this cancer that he described as being the size of a Red Bull tin. He was 19 when he had his first diagnosis, and it was Christmas Eve, so everything was closed for a while.”

“We’re just speaking to all these people, because people can tick boxes and we can sort of decipher their story, but to hear their story and to see their photos is just so powerful. So it’s actually sounds like an awful study trying to find out cancer experiences, but people with cancer seem to be empowered by sharing their experience.”

What are some important cultural considerations when providing breast cancer care to Aboriginal and Torres Strait Islander women?

“We’ve found that Aboriginal and Torres Strait Islander women diagnosed with breast cancer were more likely than other Aboriginal and Torres Strait Islander women diagnosed with other cancers to hear the news from an Aboriginal and Torres Strait Islander health worker.”

“Among all women with cancer, only one in three participants felt that the information they received about their cancer at the time of their diagnosis was designed for Aboriginal and Torres Strait Islander people. We also found that it was important where one in three women with breast cancer had family attend their appointments.”

“Aboriginal and Torres Strait Islander women with cancer commonly identified the following factors as important to them during their cancer treatment:

• They really wanted to ensure that family were able to attend their appointments.
• Being culturally safe during their treatment
• Having access to someone who understands their culture
• Having a doctor that they feel comfortable with
• Having an Aboriginal and Torres Strait Islander person to talk to who can support them.”

“The participants of the study were asked whether certain factors delayed any access to their treatment. The most reported factors that hinder timely treatment were location of the treatment centre, cost of the treatment, navigating the healthcare system, racism in the healthcare system was quite prominent and lack of childcare services.”

How can healthcare workers better engage with Aboriginal and Torres Strait Islander communities to improve treatment outcomes?

“When we’ve been speaking with the Aboriginal and Torres Strait Islander women a lot of women have identified that screening services aren’t always close to them.”

“We’ve spoken to quite a lot of women over the age of 40 who are eligible for breast screening but aren’t reminded again to sort of undertake that screening within two years. The system only sends out automatic reminders when they turn 50.”

“We’ve also found that a lot of Aboriginal and Torres Strait Islander people are scared of a diagnosis. So, producing materials that are designed for Aboriginal and Torres Strait Islander people would be a good start.”

What support networks or resources are available to Aboriginal and Torres Strait Islander women diagnosed with breast cancer?

“The Kulay Kalingka study is a national cohort study, so we’ve been able to sort of find some areas that may have cancer navigators or an appropriate McGrath Cancer Nurse, who can point them in the right direction. We found that one in four Aboriginal and Torres Strait Islander women who are on their cancer journey are also caring for someone else on their cancer journey and putting their own needs secondary.”

“So, the idea of a holistic support service that isn’t just directed at the cancer patient, but the family that surrounds that woman or that man with breast cancer would break down some barriers. In some locations, and some quite remote locations, we’ve found Aboriginal and Torres Strait Islander I guess health workers who might’ve been on their own cancer journey, or their family has been on their own journey and therefore they offer to train doctors.”

“It mostly applies in Aboriginal medical services where Aboriginal health workers and GPs or doctors might be working together, and it might be an indirect learning.”

What are your hopes for the future of breast cancer research?

“I guess that the breast cancer journey and awareness become more of a proactive step and not a reactive step, and that Aboriginal and Torres Strait Islander women know that it is okay to undertake cancer screening programs and that they are proactive in doing that. I also hope that there can be some services that are close to home, and that there aren’t financial costs.”

“A lot of people say that cancer treatment is free, but we’ve come across a lot of women who need to organise babysitters, their own accommodation, their petrol, and they’ve got to pay for parking at the hospital, just as some examples.”

“So there seems to be a lot of other barriers that aren’t really considered when you say that cancer treatment is free.”

Dr Anna Singleton is a Senior Research Fellow at the Daffodil Centre, a joint venture between the University of Sydney and Cancer Council NSW. Her research focuses on co-designing and implementing accessible and scalable digital health services to improve health outcomes for people living with and beyond cancer.

We spoke with her about the EMPOWER-SMS clinical trial and what it aims to achieve for breast cancer patients.

“Our EMPOWER-SMS clinical trial really aimed to improve women’s health and wellness after they’re finished their sort of initial treatment, surgery, chemotherapy, and radiation therapy.”

“What consumer representatives have told me is that they finish those treatments, they ring the bell, they’re so excited, and then they go home, and months go by, and they’re still not feeling quite like themselves, they sort of miss the support that they were getting from the community.”

“They Googled cancer online and what to do after cancer and all these different things came up, which was super overwhelming for them.”

“So, we thought, why don’t we create a program to help support you during that time and sort of point you in the right directions. So, EMPOWER-SMS is a co-designed health and wellness text message program. So, people get four text messages per week for six months about a range of different topics.”

“So, it could be related to the food that you should be eating, or how much exercise you should be getting, or how to manage some of those really tough side effects, like hot flushes and joint pain. There’s also links to helpful websites or free programs that you may or may not know about in the community. And the aim is really to link up the information that your doctors have already given you with freely available services that are offered in your community, and just really provide that individual support directly to your phone that you’re already using every day.”

What were the main findings of the trial?

“What we found was that receiving these messages helped people miss fewer doses of their endocrine therapy because they were able to better manage some of those really tough side effects and they knew who to talk to when they needed help.”

“There were quite a few messages about if you’re feeling this certain way or if you’re noticing these side effects, go speak to your doctor about it and ask them if it’s normal. See if there’s any options for you. Because they’ve given you this medication because it’s supposed to be helping you more than it’s hurting you. And if it’s hurting you a lot, then we need to look at some other options.”

“So, it was really that type of messaging. We also found that it slightly helped people improve their physical activity by about five minutes each day, which is really exciting. It doesn’t sound like much, but new research shows that even doing five extra minutes of physical activity every day can lower your risk of heart disease and lower your risk of cancer coming back.”

“It was cool that a little text message could sort of do all that. But I think more importantly than all of that, we got a lot of feedback from people about the messages, and 100 percent of them said it was easy to understand, and 91 percent said they were useful, and it helped them with managing their health and that was really, exciting.”

“Some of our participants said it felt like they had a secret friend who was supporting them, and nobody else had to know about it. One person even said, ‘it was nice that I could change my behavior, and nobody knew it was because of what was happening in a text message. It just looked like I was doing it on my own’.”

Was there someone on the other end or were these automated messages that got sent to them?

“In that trial, they were discouraged from texting back. Some people would, which was also totally fine. Since the trial, we’ve sent it out to over 850 people during the COVID-19 pandemic. And they were allowed to text back. And, they would just say things like ‘oh, thank you so much for the advice’.”

“If they did ask any medical questions, which was maybe 10 messages out of the hundreds and hundreds of messages we received, we would just instruct them to speak to their doctor about that particular issue.”

How do regular text messages contribute to improving medication adherence among breast cancer patients?

“So, I think it depends. These messages were really designed for people with a lived experience of breast cancer, with their doctors. So, I think it added this sort of extra layer of helpfulness and they were really based in science and the program wasn’t solely. medication. It was about your health and wellbeing as a whole.”

“So, I’ve seen quite a few papers that only do a message a day about adhering to your medication, and they often fail. And I do wonder if it’s because there’s too much focus on the one thing and the one message coming at the same time every day.”

“So, if you are looking for sort of daily reminders, I think that’s the place that you’d want to go, especially apps that have a bit of information or some videos. I did a study about the Medsafe app, which is good for people who take a lot of different medications because you can program them in.”

“It sort of looks like a pill box on the screen and you can tick off when you’ve taken it. So, then you have a list that sort of tracks if you took it today. I think there’s lots of ways that you can use tools that you have every day like your phone, or even a calendar and a check mark, that works too. It’s whatever works for you.”

What are the potential challenges of reaching patients through text messages?

“So, there’s huge problems at the moment with spam text messages. People are very nervous to open text messages, and to click any links in text messages. So, I’m actually running a new trial where GP practices will be sending a text message inviting people to this program across Australia.”

“I’m making sure that that message really feels like it’s coming from that GP and it’s coming from the exact same number where they always get their appointment reminder message from is really important so that they can trust that it’s not some sort of spam thing trying to steal their money, which can be really difficult.”

“And not only for the patients as they may call the practice, and it may clog up the phone lines. So then other patients who need help can’t get it because the receptionists are busy dealing with this big problem. So, it has been very challenging recently trying to sort of navigate the space.”

What do you foresee as the next steps or future research directions and improving medication adherence for breast cancer patients?

“Yeah, so I’m launching a trial in general practice and so that one is focused on physical activity, but medication adherence is a secondary outcome that we’re looking at and seeing if it is helpful or not to have these messages about how to manage side effects or how to create little habits to remember to take your medication, especially when you’re starting out with the new medication.”

“You’ve just come out of the hospital. It’s a new habit you have to form. How can I make it easier based on science? I’ll be your nerd helping you in the background sending you messages about it. We’re also trying to understand how we can integrate this into services that already exist. So, Breast Cancer Network Australia has an incredible phone line where you can call and get advice and support and they can point you in the right direction, whatever you need.”

For women who are currently undergoing or about to start endocrine therapy, what advice would you give them?

“I can tell you what all the consumer representatives have told me. I had some amazing consumer representatives from Breast Cancer Network Australia, and the Westmead Breast Cancer Institute. And they were so funny telling me about their experiences and they were giving me tips about, you know, if you’re having a hot flush at night, lay a towel on your bed. And then if you have a hot flush, and you’re feeling sweaty, pull it off the bed, put another one on. So, it’s just about normalizing that these things are happening and there are ways to manage them.”

“One tip they said was, if you really like swimming, that’s a good idea because if you’re exercising and you have a hot flush, you’re already wet, so you’ll cool down right away. It was just beautiful to see how they could spin sort of an annoying situation into a lighthearted thing. And we are wanting to make sure to normalise that other people are going through this as well, and to reach out if they need support.”

“We also want people to know that they should tell their doctors if they need help, as they’ll have more tips for you. Some of the side effects can get better over time if you continue taking your medication, and making sure not to stop taking it without speaking to your doctor because that can be a big problem as well.”

“So just a few of those tips. I’m not an expert in endocrine therapy but I just can share the information that sort of the doctors and the consumer reps have told me about it.”

What are your hopes for the future of breast cancer research?

“In general, a cure for all the different types and the strains of breast cancer so that we don’t have to deal with this anymore. I mean, a vaccine would be amazing, the same way that they have done for cervical cancer. I just think they’ve revolutionized the way we think about it as a prevention versus a cure.”

“I think having support for people who sort of finish that initial active treatment phase and who are moving into sort of trying to navigate their life again, but also having to go through those yearly scans that are scary. I also want to see more support for people living with metastatic disease. I think people are living years and years and having happy big, long lives with metastatic breast cancer and there’s just not enough information and support for them.”

“I have an amazing colleague at the Daffodil Center named Dr Andrea Smith who is a person with lived experience with metastatic breast cancer who’s just done incredible work in the space, and for the for the first time her and her team have been able to have an accurate number for how many people with metastatic disease are living in Australia, which is just incredible because now they can accurately say this is the amount of people who need help and support.”

“So, across the board, I think there’s exciting things happening. I’m happy to be part of it and to uplift consumer voices, to understand what they need and how I can help facilitate it.”

Dr Stephen Luen is a Medical Oncologist and Translational Researcher at the Peter MacCallum Cancer Centre in Melbourne. His current research interests include the study of genomic and immune biomarkers in breast cancer, with a particular focus on investigating biological characteristics and developing clinical trials for high-risk subgroups of patients.

We spoke to Dr Luen about the role of genomic testing in breast cancer treatment.

“At the heart of it, there’s two main components of genomic testing as we call it, and it’s becoming much more common as our standard approach to breast cancer. So, one is what we call germline testing, which is essentially testing and looking at the DNA in normal cells in an individual.”

“Usually that’s from a blood sample or from a mouth swab or something. And many people will understand that sometimes we’re looking for mutations in certain genes that might be inherited, that increase your lifetime risk of breast cancer. But increasingly we’ve recognized we can also use that to predict benefit from certain drugs.”

“So, the classic example is with a BRCA1 or BRCA2 gene mutation, where we can use PARP inhibitors. But moving beyond that, we’ve also looked at doing genomic testing on the tumour itself. And by doing that we start to understand what changes in the DNA are driving the cancer to grow and propagating that cancer’s growth.”

“Sometimes we’re able to identify those alterations and target them with specific drugs. Now, in the old days, these drugs were only partly effective, and they were pretty toxic. So, they caused lots of side effects, but the newer generation of drugs are certainly becoming cleaner, they have less side effects and they’re more potent so they’re potentially more effective.”

“And so, in my talk, I would like to sort of present some data and discuss some of the themes that are coming about with the development of these drugs.”

How does genomic testing contribute to personalised treatment approaches for breast cancer patients?

“The whole premise of the genomic testing is to understand what is driving this individual cancer, because every cancer is unique. And in that way, you can really personalise the treatment for each patient. So, if there’s a change in one of the BRCA genes, you can then use a PARP inhibitor. If there’s a change in PIK3CA, you can use a PI3 kinase inhibitor, and it sort of pushes away from that concept of everyone having the same treatment.”

“They all come in trials where they use things like chemotherapy and endocrine therapy. So, it’s the idea of personalising treatments so that you can better target the individual cancer.”

What are some potential benefits of undergoing genomic testing for breast cancer patients?

“From my perspective as a clinician the most common reason we’re doing genomic testing is to identify, ideally, a change that results in a new drug target, and that means we can potentially use a drug that has improved efficacy and really good effectiveness in an individual’s tumour to be able to control the cancer better or even increase the chance of cure.”

“And I think this allows patients to have more choices in terms of therapy. Of course, there’s nuances in how you use those drugs. Are they used in combination with other drugs? Are they used at certain times? Are there particular what we call lines of therapy? Are they used in early breast cancer or advanced breast cancer? But it gives us more choices and helps us understand how to best manage a cancer, optimise patient outcomes, as well as improve quality of life.”

“We’ve fortunately just had approval of Olaparib in the neoadjuvant setting. This was from a clinical trial called OlympiA. There will be some discussion about that trial at the symposium. But there are a multitude of other clinical trials that are coming about, and in my presentation today, I’m just going to highlight a few clinical trials in those fields.”

“There are a number of clinical trials using these drugs called Selective Estrogen Receptor Degraders (SERD), which target the oestrogen receptor, and they actually degrade the oestrogen receptor. And these are proven to be more effective in patients with these mutations in a gene called ESR1.”

“And this is an acquired resistance mechanism, so it gives us an opportunity to treat a cancer that is developing resistance to our standard hormonal therapies. Another example is the INAVO120 clinical trial, where they’ve really introduced a PI3 kinase inhibitor early on in the piece, and that’s shown effectiveness in phase III data in combination with the current standard treatment.”

“However, we always need to balance this with the side effect profile that adds when you add it in combination. And finally, I did also want to talk a bit about new strategies. I’ve mentioned a drug called Saruparib, which is a new next generation PARP inhibitor, which will be tested in a new clinical trial that’s upcoming called EVOPAR-BREST01.”

“So, just a few clinical trials on the horizon and there are many more with new drugs coming through.”

What advice would you give breast cancer patients who might be considering genomic testing?

“So I think the first thing you should do is have a discussion with your medical oncologist. Genomic testing is something that is relatively new, but I’d expect most oncologists to have some literacy around this and be able to discuss it with you. There are a few ways to get genomic testing. Of course, some of them are reimbursed. And most of that is germline testing.”

“At the moment, there is also a national program where we’re able to perform a comprehensive genomic test on a tumour, and I’d encourage people and clinicians to consider using those tests to be able to springboard our patients on to give them opportunities in clinical trials and access to novel drugs, which hopefully will improve their outcomes.”

“So, in the context of genomic testing and targeted therapies, I think this is definitely one way forward, and the way I think it’s going to happen is through one of the themes that I’m going to talk about, which is bringing in these drugs early and in combination, bearing in mind that there may be some increased toxicities or side effects that are associated with that approach.”

“But what’s happening in drug design now with targeted therapies, is that there’s a real focus on two things. One, to make the drugs more potent and hopefully therefore more effective, but also to make them more selective, which means they hit a target very selectively and they result in much fewer side effects.”

“The ideal situation here is to be able to target resistance mechanisms all in that first line of therapy, to really give you the best duration of response as well as quality of life in that first line setting, which I think will be the way forward with targeted therapies in breast cancer.”

About Professor Marina Reeves

Marina Reeves is a Professor in the School of Public Health and Deputy Associate Dean of Research in the Faculty of Medicine at the University of Queensland. She is also an advanced accredited practicing dietician coordinating a research program that is focused on breast cancer epidemiology and the role of supportive care interventions in improving outcomes and quality of life for women diagnosed with breast cancer.

We spoke with Professor Reeves about the importance of optimizing care for metastatic breast cancer patients through diet and exercise.

Research focus: how exercise and diet can improve quality of life for breast cancer patients

“So metastatic breast cancer is when the cancer spreads outside of the local breast area, usually to distant parts of the body. For women with breast cancer, it’s often to the bones, or it could be the lungs, brain, liver, or other sites.”

“And so those women live with an incurable, but treatable, disease. And treatments have evolved over the last few years. So, it’s great that we’ve got some newer treatments. And those women are living for longer than they did in the past, which is wonderful. But they’re living for longer still with battling side effects and impacts on their quality of life.”

“And so, our research is really focused on how exercise and diet can help to improve their quality of life. Potentially they’re survival, but really focused on improving that quality of life.”

Exercise benefits women with metastatic breast cancer both physically and emotionally

“We’ve got really good evidence on how exercise benefits women with early-stage breast cancer. Both evidence that shows that it’s likely associated with survival, but also helps to manage a range of side effects, so fatigue, but also helps to improve their mental wellbeing, as exercise does for everyone in the population.”

“In the metastatic setting, this evidence is just starting to slowly grow and so we’ve got some really good evidence now, through a new trial that’s just come out, on the benefits of exercise specifically for women around fatigue, quality of life, reducing pain, and improving sexual function.”

“So, lots of benefits that we can start to see in this population of women with metastatic breast cancer, which is great.”

What types of exercises are recommended for women with metastatic breast cancer?

“So, it’s really important that you start slowly, but often. So even if you’re not doing any exercise at the start, any exercise is going to be beneficial, but ultimately what we want women to be able to get to, similar to the general population, is increasing what we’d call vigorous physical activity or that aerobic cardiovascular physical activity, which could just be walking, but also trying to get them to increase their resistance exercise, so strength based exercise, because it’s really important.”

“And our particular interest is on maintaining that muscle mass and preventing what we know with age, but also with cancer and with treatments will decline.”

Diet and breast cancer

What role does diet play in managing metastatic breast cancer?

“So, women are bombarded with information, if a woman was diagnosed with either early-stage breast cancer or metastatic breast cancer and went to ‘doctor Google’, they will find a wealth of information, but not necessarily evidence based information. And so, we know this population is particularly prone to misinformation around diet.”

1. Maintain adequate protein intake

“And so, we know that dietary intake in addition to resistance exercise is really important in maintaining that muscle mass. And so, our primary recommendation to women is around maintaining adequate protein intake. We also know that some women, depending on the treatments that they’ve had, can get taste alterations. So, the taste of meat, or certain foods may not be the same as they were.”

“So, we really work on how to make sure that you’re still getting adequate protein intake within the foods that you’re eating.”

2. Prioritise muscle mass

Support and resources for women with metastatic breast cancer

“This is an area that we’re particularly passionate about advocating for, because currently women with metastatic diagnosis, not just around diet and exercise, but generally tend to get a lot less support than what a woman with an early-stage diagnosis receives. And so, there’s a strong movement and need for there to be equitable access to that support.”

1. Need to improve access to resources and information through hospitals

“Currently, Breast Cancer Network Australia has resources and information available. Some hospitals may provide some tailored support for metastatic breast cancer, but very few of them offer exercise programs for that group of women. They’ll offer exercise programs for early stage, but very few will offer exercise programs specifically for metastatic women.”

2. Advocate for greater support for women with metastatic breast cancer

“And so, we’re trying to advocate and create the evidence to change that practice. We do know that women have access, if they go and see their GP, to get onto a chronic disease management plan. And that gives them Medicare reimbursed sessions to see an exercise physiologist or a dietician, but it’s limited in terms of the number of sessions that they can receive with that.”

“So, our goal is to try and change the way and the supports that are available to these women in the future.”

“So, my hopes for women with breast cancer, and my reason for focusing on this research is my mum who had metastatic breast cancer, and I saw the terrible time that she went through and the impacts of the treatment and the cancer on her quality of life.”

Professor Marina Reeves’ hope for the future

“And so, my goal is that no women have to suffer like my mum. Ideally, no women ever die from breast cancer again. And that would be the ideal, that no one ever gets breast cancer. But my goal is that we can create the supportive care intervention so that women can live and thrive with a metastatic breast cancer diagnosis.”

Breast cancer diet FAQs

What foods to eat?

Explore various foods that may help in reducing the risk of breast cancer or aid in managing it, including leafy green vegetables, cruciferous vegetables, allium vegetables, citrus fruits, berries, fatty fish, fermented foods, beans, herbs, spices, whole grains, and walnuts.

What foods to avoid

Explore the foods and beverages that individuals with breast cancer may consider limiting or avoiding, such as those containing soy, to potentially reduce risk or manage the condition.

Do you have a breast cancer diet guide for clinicians?

While we don’t have a specific diet guide, there are some key dietary considerations for breast cancer patients based on current research. Here are some general recommendations that clinicians and patients may find useful:

• Focus on wholefoods: emphasise fruits, vegetables, wholegrains and legumes whiles aiming for a variety of colours and types to ensure a range of nutrients.
• Healthy fats: encourage sources of healthy fats like olive oil, avocado, nuts, and fatty fish (like salmon), while limiting saturated and trans fats.
• Lean proteins: suggest lean protein sources such as poulty, fish, beans, and plant-based proteins.
• Limit processed foots: encourage reducing the intake of processed and sugary foods, as well as red and processed meats.
• Keep up hydration: remind patients to stay well-hydreated, primarily with water.
• Maintain a healthy weight: discuss the importance of maintaining a healthy weight, as obesity can be a risk factor for recurrence.
• Limit alcohol consumption: suggest limiting alcohol intake, as it has been linked to an increased risk of breast cancer.

Is there any evidence that keto diet helps metastatic breast cancer?

The ketogenic (keto) diet, which is high in fats and low in carbohydrates, has gained attention in cancer research, including metastatic breast cancer.

While there is some preliminary interest in the keto diet’s potential benefits for breast cancer patients, more comprehensive research is necessary to determine its effectiveness and safety. It’s essential to approach dietary changes cautiously and with professional guidance.

Both the plant-based diet and the Mediterranean diet have been associated with potential benefits for cancer prevention and overall health:

• A Plant-Based Diet: A plant-based diet focuses on consuming a variety of fruits, vegetables, whole grains, legumes, nuts, and seeds, providing a wealth of vitamins, minerals, and antioxidants. Research suggests that this diet may lower the risk of certain cancers, including breast cancer, by reducing inflammation, improving hormone levels, and promoting a healthy weight. High fiber intake from plant-based foods is linked to improved gut health and may further help lower cancer risk. Overall, a plant-based diet is often associated with lower body weight and reduced obesity risk, both of which are important factors in cancer prevention.
• The Mediterranean Diet: The Mediterranean diet emphasises the consumption of fruits, vegetables, whole grains, fish, olive oil, and moderate wine intake, promoting heart health and well-being. Its anti-inflammatory properties may help reduce cancer risk by modulating inflammation and oxidative stress. Clinical studies indicate that adherence to a Mediterranean diet may be associated with lower breast cancer risk and improved survival rates among diagnosed individuals. This diet provides a balanced intake of healthy fats, lean proteins, and complex carbohydrates, supporting overall health.

Both diets are rich in nutrients and have been linked to various health benefits, including potential protective effects against breast cancer. They emphasise whole foods and healthy fats, which can be important for overall health and well-being.

Encouraging patients to adopt a balanced, nutrient-dense diet can be beneficial. As always, it’s essential for individuals to consult with their healthcare team before making significant dietary changes.

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About Exercise Physiologist Dr Eva Zopf

Dr Eva Zopf is an exercise physiologist whose research interest focuses on the role of exercise as medicine for the management of cancer. Aside from developing, conducting and evaluating exercise intervention studies in cancer patients, Eva is also dedicated to improving the supportive care services available for cancer survivors.

We spoke with her about the PREFERABLE-EFFECT study and the role of structured exercise in metastatic breast cancer and quality of life outcomes.

What are the effects of exercise on fatigue and quality of life?

Background to the PREFERABLE-EFFECT Study

“So, we actually decided to run this trial because there’s been quite a lot of evidence around the beneficial effects of exercise in cancer patients. But most of the studies that have been conducted to date have looked at patients that have localised disease or have been treated with curative intent, and so there’s actually not a lot of evidence in patients who have metastatic disease.”

“So, the aim of this project was to look at the effects of exercise on fatigue and quality of life in patients with metastatic breast cancer. And the reason being that those patients often have ongoing treatment. They have a higher symptom burden generally than patients that have localized disease.”

“So, for those that finish their treatment in a localised setting their symptoms might subside after a few years. We do know that those that have ongoing treatment, the symptom burden will increase, or is more likely to increase over time, so we wanted to figure out if exercise is also beneficial and safe for those patients.”

“What we did first of all, was divide the group, or the study participants up into two groups. So, we had one group that received breast cancer exercise advice and a physical activity tracker. The other group received that as well, but they also received a structured exercise program. So that consisted of two supervised exercise sessions for the first six months, and it was reduced to one supervised exercise session for the last three months.”

Exercising safely in structured exercise sessions resulted in:

1. Reduced fatigue

“The sessions included aerobic training, like riding on a bike or walking on a treadmill, and resistance training to improve muscle mass and also some balance training. And what we found is that the group that participated in the intervention study, so had that structured exercise program, they had higher quality of life outcomes than the participants in the control group, and they also had lower levels of fatigue.”

2. Lower pain levels and decreased shortness of breath

“So those were our two primary endpoints that we wanted to look at. We looked at a number of other outcomes, for example some of the symptoms that are quite common in patients with metastatic breast cancer like pain and dyspnoea. We also saw that the patients in the intervention group actually had lower pain levels throughout the entire intervention period of nine months and also lower levels of dyspnoea. Dyspnoea is shortness of breath, which is also quite commonly reported.”

3. Better sexual functioning

“In addition, we looked at some of the breast cancer specific symptoms or side effects like reduced sexual functioning and we saw that the intervention group also had better sexual functioning than the control group and the same applied to some of the endocrine sexual symptoms that some of the patients experienced from endocrine treatment.”

Breast cancer exercise recommendations

1. Aerobic training and vigorous activity

“So, we did a combined program so our exercise program consisted of aerobic training, which is more cardiorespiratory training, that improves blood circulation through your heart function. For example, that can be running, cycling, swimming, and so forth. We didn’t offer swimming, but just as an example of aerobic training.”

2. Resistance training and muscle-strengthening activity

“Resistance training, which is a type of weight training, which generally improves your muscle mass and balance training, which can also obviously improve balance, but we know with some patients who receive chemotherapy and when neuropathies are an issue, that can help in those terms as well.”

3. General exercise advice for breast cancer patients

“We compared that to our control group that just received exercise advice. So, the general advice for cancer patients is to be physically active for about 150 minutes per week. So, participants received an activity tracker. And given we saw better improvements or better quality of life and lower fatigue in the intervention group, we do feel like that just providing exercise advice might be enough.”

“But that really structured and supervised exercise program, where in our case it was two supervised sessions per week is really required to maximize the benefits that you can get from exercising.”

Recommendation: Supervised resistance and aerobic exercise for patients with metastatic breast cancer.

Additional benefit: decreased health care costs

“We did also did a cost effectiveness analysis to see whether it was cost effective. And so, we looked in both groups how often patients saw their GP or used other services such as how often they went to the hospital or required any other care. And we did see that those that took part in the structured exercise intervention also had lower health care costs. And so, we do think there’s a benefit of getting more support or exercise integrated as a routine component of cancer care.”

“I think there is still a little bit of a way to go to provide those services to all. But we definitely think, if possible, try to find an exercise physiologist who has experience working with cancer patients to just get support in what exercise you can be doing and to get an exercise program prescribed to you to then hopefully follow through and experience some of the benefits that the patients on our trial did.”

What are your hopes for the future of breast cancer research?

1. Improved exercise support for cancer patients

“So, for me, the reason I get out of bed every morning is to really improve the exercise support that cancer patients in general receive, whether that’s breast cancer or another cancer.”

2. Integrate exercise as a standard component of cancer care

“I think in Australia, the opportunities to see an exercise physiologist or get those rebated services are quite low. So that would be a first step to hopefully maybe increase those sessions or those consultations that you can get. But in general, I think we definitely need to find a way to integrate exercise as a standard component of cancer care.”

“And if we look at other countries, for example Germany, where I’m from, we have an oncological rehab program, similar to cardiac rehab here and that’s subsidized by the health insurance companies and that means exercise becomes more accessible.”

3. Remote access to exercise programs for breast cancer patients

“We’ve just started a new international trial, where we’re looking at Zoom-based exercise sessions, so providing a telehealth or live remote training for 12-weeks, so that we can offer the exercise program to patients that live more remotely and can’t access an exercise physiologist, and we want to see whether that’s just as effective as in person supervision.”

“And again, that the aim of that is to make exercise more accessible. At some stage, my hope is that every patient that’s diagnosed with cancer has access to exercise support.”

The Benefit of Complementary Therapies

If you liked this podcast, find out more about how a balanced diet can also be a complementary therapy to enhance wellness for those affected by metastatic breast cancer in our podcast: Optimising care for metastatic breast cancer patients through exercise and diet.

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