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UNDERSTANDING THE PRODUCTIVITY BURDEN OF BREAST CANCER IN AUSTRALIA

Breast cancer in Australia impacts work, income, and wellbeing. Learn about productivity loss, employment disruption, and support for returning to work.

Breast cancer is not only a health crisis – it also disrupts work, income, and identity for thousands of Australians each year. Beyond the physical toll, the productivity burden of breast cancer in Australia includes lost wages, reduced hours, and the economic ripple that effects  the wider community. 

Recent research by Monash University shows the scale is staggering: working-age Australian women diagnosed with breast cancer collectively lose an average of 1.5 years of full-time work each, costing billions in wages and gross domestic product (GDP). But these numbers only tell part of the story – behind them are the challenges of career disruption, financial hardship, and emotional wellbeing. 

This article explores the statistics, human impact, barriers to returning to work, and the resources available to help people rebuild their professional and personal lives after treatment. 

Key Statistics on Productivity Loss in Australia 

  • In 2022, around 10,732 working-age Australians (mostly women) were diagnosed with breast cancer. 
  • Over the following decade, these individuals are expected to lose 16,403 productivity-adjusted life years (PALYs) – a measure of the economic impact of disease that factors in lost productivity due to time off work, reduced productivity while working and factors that result in premature cessation of work. 
  • That equates to AU$1.4 billion in lost wages and AU$3.26 billion in GDP losses for Australia. 
  • On average, each woman loses about 1.5 years of full-time work after diagnosis. 

The Monash study also found productivity loss exceeds direct healthcare costs, showing the economic impact of breast cancer extends far beyond hospital bills. 

ABC News reports that in the first five years after diagnosis, women may lose around half a year of productivity per year, though this improves with time. Since nearly 40% of cancer diagnoses in Australia occur in people aged 25–64, the ripple effect on the economy is enormous – estimated at AU$1.7 billion annually from employment disruption. 

How Breast Cancer Affects People’s Lives and Identity 

With the increasing cost of living, a reduction in income or pause in earnings places significant stress on patients, but there are also other factors to consider. For many, work is more than just a paycheck it’s tied to identity, routine, and purpose. Losing the ability to work, or needing to reduce hours, can affect confidence and increase anxiety about financial stability. This shows the productivity burden of breast cancer is not only economic but deeply personal. 

Some common impacts include: 

  • Career disruption: missed opportunities for promotions, forced early retirement, or difficulty re-entering the workforce. 
  • Psychological distress: the emotional weight of job loss or reduced work can contribute to stress, mood disturbance, and reduced quality of life after breast cancer. 
  • Long-term side effects: breast cancer and treatment may cause side effects to patients such as fatigue, brain fog, pain, or lymphoedema that can limit work capacity. 

Why Returning to Work After Breast Cancer Can Be Challenging 

Re-entering the workforce after treatment is rarely straightforward. Barriers include: 

  • Physical challenges: ongoing treatment side effects such as fatigue, pain, and brain fog. 
  • Medical demands: follow-up appointments, ongoing medication, and rehabilitation schedules. 
  • Workplace barriers: limited flexibility, lack of understanding from employers, or even discrimination. 
  • Emotional readiness: coping with the fear of recurrence and balancing health concerns with career goals. 

Cancer Australia highlights that these barriers explain why many patients face prolonged employment disruption and reduced work hours, even years after treatment. 

Why Supporting People to Return to Work After Breast Cancer Matters 

Helping people return to work is not only about restoring income. It provides: 

  • Economic benefits: reducing lost productivity, wages, contribution to superannuation and GDP impacts. 
  • Personal benefits: restoring identity, purpose, and quality of life after breast cancer. 
  • Social benefits: work provides connection, routine, and a sense of contribution. 

As the Monash University research emphasises, supporting women back into the workforce reduces the economic burden of cancer in Australia while improving wellbeing.

Breast Cancer Trials is a leader in quality of life research, with a number of past and current clinical trials that aim to improve the lives of breast cancer patients, during and after their treatment. For example:

  • The OPTIMA clinical trial: aims to find out if we can identify patients with ER-positive, HER2-negative early breast, who may not need to have chemotherapy and avoid the potential side effects of this treatment. 
  • The PROSPECTIVE clinical trial: aims to find out if surgery without radiotherapy will still be effective at stopping cancer from coming back. This also reduces the potential side effects and costs of treatment. 

Support Services and Resources for Returning to Work After Breast Cancer 

A number of organisations provide free resources to help answer your questions about financial and employment factors, financial burden, legal issues, workplace law and helping survivors reintegrate into the workforce: 

  • Employers: many workplaces offer flexible arrangements such as phased return, remote work, or reduced hours.  

Frequently Asked Questions

How long do women typically stop working after a breast cancer diagnosis in Australia?

Many take several months off during treatment. Some return part-time within 6–12 months, while others need longer or are unable to return to work. Monash research suggests each women loses around 1.5 years of work on average. 

Can I return to work part-time or with flexible arrangements in Australia?

Many employers support phased or flexible returns. Options include reduced hours, remote work, or flexible scheduling. The Cancer Council and BCNA recommend creating a return-to-work plan with your employer. 

What legal protections support employees returning to work after cancer in Australia?

Under the Fair Work Act and Disability Discrimination Act, employers must provide reasonable adjustments. You cannot be discriminated against for having breast cancer or ongoing treatment. 

What support services are available to help women get back to work after breast cancer treatment?

The Cancer Council provides workplace fact sheets and legal advice. BCNA offers guidance on employment and financial counselling. Government and superannuation programs may also help. 

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UNDERSTANDING EARLY-ONSET BREAST CANCER IN AUSTRALIA

Learn about early-onset breast cancer in Australia, how it affects younger women, common symptoms, survival rates, and clinical trials available.

Breast cancer is often thought of as a disease that affects older women, but more young women are being diagnosed with breast cancer. Early-onset breast cancer refers to breast cancer diagnosed between the ages of 20 and 49. While less common than in older women, it tends to be more aggressive and can pose unique challenges. 

In Australia, the incidence of breast cancer in young women is rising. This has serious implications for younger patients and their families, impacting fertility, careers, and emotional wellbeing. This article will explain what early-onset breast cancer is, its symptoms, that rates are increasing, challenges faced by younger women, and how clinical trials are helping to improve outcomes. 

What is Early-Onset Breast Cancer?

Early-onset breast cancer is defined as breast cancer in women aged 20-49. This younger age group is significant because the disease often behaves differently compared to cases diagnosed in older women. Tumours are more likely to be aggressive, such as oestrogen receptor-negative subtypes. These aggressive tumours tend to grow faster and spread to lymph nodes or distant regions of the body more readily. Younger women are also more likely to face delayed diagnoses, as symptoms may be dismissed or overlooked due to their age. 

How Common is Breast Cancer Under 40? 

Whilst breast cancer in women under 40 is less common, it is far from rare. In fact, around three Australian women under 40 are diagnosed every day. Awareness of early-onset breast cancer is essential for women, their families and health professionals. 

How Common is Breast Cancer Under 50? 

According to the Australian Institute of Health and Welfare, around 20% of all breast cancer occurs in women under the age of 50. Approximately 0.5% of all breast cancers in Australia are diagnosed in women under 30 years, 4% in women aged 30-39 years, and 16% diagnosed in women aged 40-49 years. This equates to approximately 4,000 diagnoses each year in women under the age of 50. This highlights the importance of recognising signs and symptoms to ensure timely access to appropriate care. 

Is Early-Onset Breast Cancer Increasing in Australia? 

Yes, research shows that the incidence of early-onset breast cancer in Australia has been steadily rising over recent decades. The number of new breast cancer cases in women aged 20–39 rose from 500 in 1982 to 926 in 2020, with projections of 1,022 cases in 2024. The age-specific rate from women aged 20-39 increased from 21 per 100,000 in 1982 to 28 per 100,000 in 2024.  

breast cancer incidence rates | 1

Survival Rates for Young Women with Breast Cancer 

While survival rates for young women with breast cancer have improved thanks to advances in treatment, outcomes still tend to be poorer than for older women, largely due to the aggressive nature of the disease. These statistics highlight the need for greater awareness of rising rates of early onset breast cancer in Australia and for more tailored support systems for younger patients. 

You can read more about this important area of research through Breast Cancer Trials’ initiatives focused on improving outcomes for young women. 

Symptoms of Early-Onset Breast Cancer 

Recognising the symptoms of breast cancer in young women is essential for early detection. Common early-onset breast cancer symptoms include a lump or thickening in the breast, changes to the nipple such as discharge or inversion, redness or dimpling of the skin, swelling around the breast or underarm, and persistent pain or tenderness. 

Unfortunately, these symptoms are sometimes overlooked because younger women are not seen as being “at risk” of breast cancer. This can lead to delayed diagnoses and more advanced disease at the time of treatment. Raising awareness of the signs of breast cancer in young women is therefore critical, and any unusual breast changes should be checked promptly by a general practitioner (GP).  

The genetics of breast cancer may also play a role in the development, treatment and nature of breast cancer, to read more see our article on Breast cancer and genetics. Women with a family history or who carry BRCA1 or BRCA2 gene mutations have a higher risk of developing breast cancer at a young age.  

To better understand the impact of breast cancer risks and lived experiences, you can read Rebecca Angus’s story. 

Challenges Faced by Younger Women with Early-Onset Breast Cancer

A diagnosis of breast cancer at a younger age can be particularly difficult, as it often coincides with life stages focused on career building, relationships, and family planning. Beyond the physical effects of treatment, younger women face unique emotional, social, and practical challenges that differ from those of older age and require tailored support. 

Fertility and Breast Cancer 

Treatments like chemotherapy can harm ovarian function, potentially causing premature menopause and infertility. Certain hormonal therapies may also temporarily suppress ovarian activity, affecting reproductive planning. These fertility-related side effects can be particularly distressing for young women who are already dealing with a recent cancer diagnosis. They may also require additional treatments and procedures to preserve fertility – such as egg or embryo freezing, on top of their breast cancer treatment. 

Breast Cancer Trials conducted the practice changing study called POEMS, which proved that the treatment goserelin can preserve a woman’s fertility during chemotherapy. Find out more about this important research here 

For more guidance, see our Q&A on breast cancer and fertility, which explores common questions and support available for younger women. 

Returning to Work and Career Disruption 

A diagnosis can interrupt work, study, or career progression at a critical stage of life. Many women face financial strain and uncertainty, regarding their career and returning to work after breast cancer can be difficult due to lingering side effects such as fatigue or cognitive changes. 

Emotional Distress and Counselling 

Younger women often experience high levels of anxiety, depression, and body image concerns. Access to specialised support, such as counselling and peer support programs, can make a significant difference. Breast Cancer Trials offers resources on supporting young women with breast cancer to help navigate these challenges. 

Clinical Trials Supporting Young Women with Early-Onset Breast Cancer

Clinical trials are a vital part of improving treatment and care for younger women with breast cancer. At Breast Cancer Trials, several studies focus on premenopausal women to improve outcomes and reduce treatment side effects. 

OLIO Trial 

The OLIO trial is investigating whether adding a targeted therapy with or without immunotherapy to standard pre-operative chemotherapy treatment can improve results for women with ER-positive, HER2-negative early breast cancer. The goal is to find more effective, tailored treatment options for younger women. 

Neo-N Cohort C Trial 

The Neo-N trial is studying how newer approaches can improve treatment for premenopausal women with triple negative early breast cancer. It aims to better control cancer using dual immunotherapy treatment before surgery 

OPTIMA-Young Trial 

The OPTIMA-Young trial is identifying whether patients with ER-positive, HER2-negative early breast cancer may be able to safely avoid chemotherapy, sparing them from unnecessary treatment and the possible side effects that come with it. This research is especially important for younger women balancing quality of life with long-term survival. 

These breast cancer clinical trials in Australia are designed not only to improve survival rates but also to enhance quality of life for younger patients. You can also read about positive news for young women with breast cancer and our work in developing a model of care for young women. 

Sources:

https://www.monash.edu/news/articles/breast-cancer-costs-australian-women-and-the-wider-community-billions-in-lost-work-hours-and-wages  

https://www.canceraustralia.gov.au/cancer-types/breast-cancer-young-women 

https://www.aihw.gov.au/reports/cancer/breast-cancer-in-australia-an-overview/summaryhttps://www.canceraustralia.gov.au/news/lets-talk-about-breast-cancer-young-women 

https://www.canceraustralia.gov.au/breast-cancer-risk-factors/risk-factors/personal-factors#age 

https://www.bcna.org.au/resources/about-breast-cancer/breast-statistics-cancer-in-australia/  

https://www.canceraustralia.gov.au/cancer-types/breast-cancer-young-women/breast-cancer-young-women-statistics  

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UNDERSTANDING FINANCIAL TOXICITY: THE FINANCIAL IMPACT OF BREAST CANCER

Explore the financial impact of breast cancer, from out-of-pocket costs to income loss. Learn about support services, coping strategies, and clinical trials.

Breast cancer doesn’t just affect physical or mental health – it often brings financial burden. This issue is commonly known as financial toxicity, which refers to the financial stress and hardship caused by the cost of cancer care. For many patients in Australia and New Zealand, financial toxicity in cancer can mean large out-of-pocket costs, reduced income, and the emotional distress of trying to afford treatment.

As a result of enhanced insight into the financial impact of breast cancer, patients and caregivers can prepare for challenges, seek support, and access services that ease the burden of financial toxicity in healthcare.

What is Financial Toxicity and Why It Matters for Breast Cancer Patients

The COSA Financial Toxicity Roadmap (2024) defines financial toxicity as the harmful impact of cancer-related costs on patients and their families. Studies show that financial toxicity can reduce quality of life, increase psychological distress, and interfere with treatment adherence for breast cancer patients.

In breast cancer care, financial toxicity includes:

  • Direct out-of-pocket medical costs for treatments, scans, and medications.
  • Indirect costs such as lost wages, parking, childcare, and travel.
  • Psychological distress and financial concerns caused by treatment costs.
  • Increased risks of delaying or skipping scheduled care due to unaffordable expenses.

Understanding what financial toxicity means for breast cancer patients is very important; younger people are particularly vulnerable, as a diagnosis can disrupt careers, family responsibilities, long-term financial security and income loss. Learn more about the challenges of early-onset breast cancer.

Out-of-Pocket Costs and Income Loss in Breast Cancer

Many Australians diagnosed with breast cancer face significant financial pressures. Research from Breast Cancer Network Australia shows that out-of-pocket costs can reach thousands, or even tens of thousands, of dollars, depending on insurance status, treatment type, and whether care is provided in the public or private system.

The Monash report published in Feb 2025 has revealed that estimated 10,732 Australian women of working-age were diagnosed with breast cancer in 2022. This has led to a projected loss of AU$1.4 billion in wage earnings over the 10-year period post diagnosis. This highlights the socioeconomic burden this disease places on both the Australian economy and women who are diagnosed with breast cancer.

Hidden costs also add to the breast cancer financial burden:

  • Travel and accommodation, especially for rural and remote patients.
  • Parking fees at hospitals and treatment centres.
  • Childcare or household help during treatment.
  • Loss of earnings or potential earnings during treatment and illness.

For many, the financial strain is worsened by lost wages or reduced work hours. Job loss and limited workplace flexibility lead to serious financial hardship after breast cancer, including long-term consequences for superannuation and retirement planning. Learn more about the employment and productivity impact of breast cancer.

Emotional and Psychological Impact of Financial Toxicity

The link between financial distress in cancer and mental health is clear. Patients experiencing financial toxicity and cancer concerns report higher levels of anxiety, depression, and psychological distress. When treatment costs become overwhelming, patients sometimes delay care or avoid recommended therapies which has the potential to worsen cancer outcomes.

In breast cancer, the combination of fatigue, uncertainty, and financial hardship often leads to emotional strain for both patients and carers. Financial pressure often adds to the emotional burden of a breast cancer diagnosis, contributing to stress, anxiety, and exhaustion. You can read more about the link between mental wellbeing and physical symptoms in our article on breast cancer fatigue vs normal fatigue.

Support, Intervention, and Resources to Manage Financial Toxicity

While the costs of breast cancer can feel overwhelming, it’s important to know that there are services and strategies available to help manage financial toxicity in breast cancer care. Support can come from health professionals, trusted organisations, government programs, and even clinical research.

One of the most effective approaches is financial navigation – dedicated support that helps patients understand the costs of care, plan ahead, and access available subsidies. The Cancer Council offers free financial counselling, and many hospitals have social workers who can guide patients through Centrelink entitlements, insurance queries, and budgeting support. The Peter MacCallum Cancer Centre provides resources on financial toxicity in cancer care, helping people understand costs and find support during their breast cancer journey.

At a policy level, the COSA Financial Toxicity Roadmap (2024) calls for changes to reduce the financial burden of breast cancer, including better workplace protections, improved Medicare coverage, and increased access to financial navigation services. These recommendations recognise that financial distress is not only related to treatment but a critical consideration in holistic breast cancer care.

Practical supports can also ease day-to-day pressures. Rural patients may be eligible for travel and accommodation subsidies, while workplace flexibility policies can help patients maintain income during treatment.

Clinical research also plays an important role. At Breast Cancer Trials, studies are underway to improve breast cancer survival while addressing quality-of-life issues such as fatigue, side effects, and the economic impact of treatment. You can learn more about our supportive care research.

Most importantly for patients and carers, managing the financial toxicity starts with open conversations. Talking with your healthcare team about treatment costs and available support can help families make informed decisions and access services that reduce financial stress.

Frequently Asked Questions

What is financial toxicity in breast cancer care?

Financial toxicity is the financial stress caused by breast cancer treatment and related expenses. It includes both direct out-of-pocket costs and indirect costs like lost wages. The COSA Financial Toxicity Roadmap (2024) highlights how this issue impacts patient wellbeing, treatment adherence, and psychological health.

How much does breast cancer cost out of pocket in Australia?

Out-of-pocket costs for breast cancer can range from a few thousand dollars to tens of thousands, depending on the type of care. Patients treated in the private health system often pay more because Medicare and private insurance don’t always cover the full fees charged by specialists or private hospitals. The extra amount left over is known as a “gap payment”.

In the public system, most treatment is covered by Medicare, which usually means lower direct costs, though there may be longer wait times or limited choice of specialists.

On top of medical bills, many patients face hidden costs such as travel, accommodation, parking, childcare and loss of income. These everyday expenses quickly add to the financial burden of breast cancer care.

What are common causes of financial hardship after breast cancer diagnosis?

Financial hardship in breast cancer often comes from a mix of medical and non-medical costs. Many patients reduce work hours or stop working altogether, which lowers household income. At the same time, not all treatments are fully covered by Medicare or private insurance, leaving patients to pay out-of-pocket. Everyday expenses such as travel, accommodation, and parking add to the pressure, while the emotional stress of balancing money with treatment decisions makes the situation even harder.

How can I manage the financial burden of breast cancer?

Managing financial toxicity in breast cancer care starts with seeking help early. Speaking to a financial counsellor through the Cancer Council or your hospital can provide guidance. It’s also important to talk openly with your healthcare team about treatment costs, explore Centrelink entitlements, and check if your workplace offers flexible arrangements. Simple steps like budgeting and connecting with support groups can also make a difference in easing financial stress.

What support services are available for financial toxicity in Australia?

There are several trusted services that can help manage the financial burden of breast cancer. The Cancer Council and Breast Cancer Network Australia (BCNA) offer dedicated programs, while hospital social workers provide financial navigation services. Patients in rural or regional areas may be eligible for government travel and accommodation subsidies.

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LISTEN TO YOUR HEART: CARDIAC CARE AFTER BREAST CANCER

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.

Listen to Your Heart: Cardiac Care After Breast Cancer

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.”

Listen to the podcast

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.

key take away icon

Key takeaways

  • Cardiac risks can outweigh cancer risks long-term
    For many women cured of breast cancer, the likelihood of dying from heart disease—particularly heart failure—is higher than from their original cancer, due to treatment toxicity, shared risk factors, and possible direct effects of cancer on the cardiovascular system.
  • Monitoring during and after treatment is essential but variable
    Treatments like anthracyclines and trastuzumab require cardiac monitoring (often echocardiograms) during therapy, but post-treatment surveillance is inconsistent. Patient awareness and GP involvement are critical for early recognition of symptoms and tailored follow-up.
  • Prevention and protection strategies exist
    Neurohormonal drugs (ACE inhibitors, beta blockers), exercise programs, and strict control of risk factors (blood pressure, diabetes, weight) can reduce long-term cardiac complications. Protecting the heart should not interfere with effective cancer treatment.
  • Future lies in better surveillance and emerging tools
    Advances in exercise-based prehabilitation, AI-enhanced ECG screening, and expanding cardio-oncology expertise could help detect issues earlier and prevent heart failure. The ultimate goal is integrating cardiac care into survivorship planning so that today’s cancer survivors don’t become tomorrow’s heart patients.

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.”

“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 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.”

Are there emerging technologies or approaches that could improve early detection or prevent cardiac issues from occuring 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.”

What can patients do to reduce the liklihood of cardiac events occuring 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.”

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.”

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.”

Podcast Transcript

  • Listen to Your Heart – Cardiac Care After Breast Cancer

    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.”

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FACING THE FEAR: LIFE AFTER BREAST CANCER

Associate Professor Ben Smith unpacks why a fear of cancer recurrence occurs, how it affects daily life, and strategies that can help patients move forward with confidence.

Facing the Fear: Life After Breast Cancer

For many breast cancer survivors, finishing treatment isn’t the end of the journey – it’s the beginning of new fears. Fear of recurrence is one of the most common and distressing challenges patients face. 

“I am a Cancer Institute, New South Wales, Career Development Fellow, and a Senior Implementation Scientist at the Daffodil Center, which is a joint venture between Sydney University and Cancer Council, New South Wales. The focus of my work is on translating evidence into practice, particularly in the context of survivorship care.”

Listen to the podcast

Associate Professor Ben Smith unpacks why these fears occur, how they affect daily life, and what strategies can help patients move forward with confidence.

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Key takeaways

  • Fear of recurrence is common and persistent – Around 60% of cancer survivors experience moderate to severe fear of recurrence, which can persist for many years after treatment if left unaddressed, regardless of clinical characteristics.

  • Impact on wellbeing is significant – These fears can trigger anxiety, depression, social withdrawal, and misinterpretation of physical symptoms (e.g., aches and pains) as signs of cancer returning, affecting both mental and physical health.

  • Risk factors are more psychological than clinical – Younger age, being female, ongoing treatment side effects, and pre-existing anxiety or mental health issues increase risk, but fear is not strongly linked to cancer type, treatment received, or time since treatment.

  • Interventions exist but need broader adoption – Effective support includes psychologist-led therapy, brief clinician-delivered programs (like CIPHER), and blended online interventions with clinician support. Key strategies include normalising and validating concerns, mindfulness, relaxation training, and peer support. Clinicians are encouraged to routinely screen and openly discuss fear of recurrence.

How would you define fear of recurrence?

“It’s definitely the elephant in the room. It’s something that is incredibly common, as you say. We know about six out of 10 people living with and beyond cancer experience, moderate to severe fear of recurrence that’s associated with poorer mental health and quality of life and very common and intrusive thoughts or worries about the cancer coming back.”

“They can really make it difficult for some people in cases of severe fear of recurrence to really engage in their everyday activities but also plan for the future. But certainly, a lot of people feel quite isolated by these fears, hence why I think it’s really important that we advocate for health professionals to ask about fear of recurrence and screen people for those concerns.”

What are some of the factors that contribute to a person’s risk of experiencing high levels of recurrence?

“That’s one of the things that makes it tricky to identify a fear of recurrence in clinical practice. Despite what you might expect it’s not closely related to a person’s clinical characteristics. Things like the type of cancer they’re diagnosed with, or the type of treatment they’ve received, or the time since they’ve finished treatment. Something that we’ve found across all different types of cancer but breast cancer especially, is that it is related to age, so younger people tend to experience more fear of recurrence.”

“It’s also more common in women. And we do see it more common in people who have a greater number of side effects from their diagnosis and treatment, and those who have pre-existing anxiety or mental health issues. But yeah, it’s not an easy thing to say, well, a person with X, Y, Z characteristics has a fear of recurrence. Hence again, why do I think we need to be screening for this concern on a routine basis.”

“In terms of the mental health impact, we know that it can have a big impact on a person’s level of general anxiety, and it also increases the likelihood of experiencing depression. In extreme cases it can cause a lot of social isolation or withdrawal, as people feel like they can’t talk to people about it or, or don’t feel like they can relate to people who might not have had cancer.”

How does this fear impact a patient’s wellbeing?

“So, there’s an interaction between a person’s physical experience or symptoms and their fear of recurrence. So physical symptoms are one of the most common triggers for fear of recurrence. People often interpret aches and pains that they have as a sign that their cancer might come back, and that’s, again, something where health professionals can advise on which symptoms might be more indicative of recurrence or less indicative, and also what patients should do in response to those symptoms.”

“It can cause them to withdraw from those social relationships that they would otherwise, you know, get support and value from.”

Is fear of recurrence something that tends to improve over time for people?

“Yeah, so that’s the unfortunate thing. Despite what you might expect, or the intuitive expectation that fear of recurrence might reduce over time, we see that that’s not the case. In many people who have higher levels of fear of recurrence, if it’s left unaddressed, that tends to persist sometimes for many years post-treatment.”

“So, it’s really important that we don’t assume that a person who might be five years post-treatment, doesn’t have these concerns because they’re very common, even in longer-term survivors.”

Are there support resources or interventions that have shown promise in helping patients manage this fear?

“There are quite a few different interventions available now for fear of recurrence. I guess where we have the most evidence is for individual interventions delivered by a psychologist in a one-on-one kind of context. And we know that this can help people with severe fear recurrence to reduce their concerns.”

“We’ve also now got a lot of brief clinician-delivered interventions like CIPHER that Jenny Lou developed, which are designed to be incorporated into routine care and in incorporate elements such as just normalising and validating these concerns, giving prognostic information, telling people what their risk of recurrence is and what signs to look out for.”

“And those have been shown to reduce fear of recurrence typically in people with mild to moderate kind of levels of fear of recurrence. We’re still lacking some options for the large group of about four out of 10 patients who have moderate fear of recurrence. There’s been quite a bit of work done looking at online interventions with varying degrees of success.”

“We have found that for some of those interventions, the levels of engagement, and subsequent benefit are not as good as we would’ve liked. But there’s been some work done recently looking at interventions that have just a little bit of clinician support embedded into them. And we’ve found that they have much greater engagement and efficacy as well. So, I think there’s a lot of potential there for those types of interventions.”

What would you say to someone who might be a couple years post-treatment who had just started noticing that these fears are becoming more prevalent?

“Don’t be afraid to tell people or express those concerns to other people. I think it’s something that we know is very common, not only in individuals affected, but also their caregivers or support people. And just by sharing those concerns, I think it can help lighten the load for both those parties to some degree.”

“Talk to your healthcare team about it because there are support options available that they can provide as well. There are also some great resources from places like the Cancer Council and the Australian Cancer Survivorship Center on fear of Recurrence, and they include tips around things like mindfulness, which can be helpful.”

“We know that a lot of the interventions are kind of focused on not trying to eliminate these thoughts. We know that they’re almost inevitable. We’re never going to be able to get rid of them, but we can help people to live better with those concerns and not let them dominate their lives.”

“So, getting some advice around things like relaxation training and meditation and mindfulness generally can be helpful. But if you do need further help, don’t be afraid to talk to your healthcare team about it because it’s a very common and understandable concern. And there is further support available.”

“The main message for clinicians would be to ask about it. This is a very normal and understandable concern for a lot of people. So, we need to normalise and validate these concerns and make people feel comfortable talking about them. And hopefully patients realise they’re not alone in these worries and that there is help available.”

“Even peer support can be a big help in addressing these concerns as well, just understanding that other people who are going through the same thing, and sharing those concerns with them.”

Podcast Transcript

  • Facing the Fear: Life After Breast Cancer

    For many breast cancer survivors, finishing treatment isn’t the end of the journey – it’s the beginning of new fears. Fear of recurrence is one of the most common and distressing challenges patients face. In this episode, Associate Professor Ben Smith unpacks why these fears occur, how they affect daily life, and what strategies can help patients move forward with confidence.

    “I am a Cancer Institute, New South Wales, Career Development Fellow, and a Senior Implementation Scientist at the Daffodil Center, which is a joint venture between Sydney University and Cancer Council, New South Wales. The focus of my work is on translating evidence into practice, particularly in the context of survivorship care.”

    Fear of recurrence is something that many people who have been diagnosed with breast cancer experience, but it’s not always openly talked about. So how would you define it and how common is it among patients?

    “It’s definitely the elephant in the room. It’s something that is incredibly common, as you say. We know about six out of 10 people living with and beyond cancer experience, moderate to severe fear of recurrence that’s associated with poorer mental health and quality of life and very common and intrusive thoughts or worries about the cancer coming back.”

    “They can really make it difficult for some people in cases of severe fear of recurrence to really engage in their everyday activities but also plan for the future. But certainly, a lot of people feel quite isolated by these fears, hence why I think it’s really important that we advocate for health professionals to ask about fear of recurrence and screen people for those concerns.”

    What are some of the factors that contribute to a person’s risk of experiencing high levels of recurrence?

    “That’s one of the things that makes it tricky to identify a fear of recurrence in clinical practice. Despite what you might expect it’s not closely related to a person’s clinical characteristics. Things like the type of cancer they’re diagnosed with, or the type of treatment they’ve received, or the time since they’ve finished treatment. Something that we’ve found across all different types of cancer but breast cancer especially, is that it is related to age, so younger people tend to experience more fear of recurrence.”

    “It’s also more common in women. And we do see it more common in people who have a greater number of side effects from their diagnosis and treatment, and those who have pre-existing anxiety or mental health issues. But yeah, it’s not an easy thing to say, well, a person with X, Y, Z characteristics has a fear of recurrence. Hence again, why do I think we need to be screening for this concern on a routine basis.”

    How does this fear impact on a patient’s wellbeing, both emotionally and physically?

    “So, there’s an interaction between a person’s physical experience or symptoms and their fear of recurrence. So physical symptoms are one of the most common triggers for fear of recurrence. People often interpret aches and pains that they have as a sign that their cancer might come back, and that’s, again, something where health professionals can advise on which symptoms might be more indicative of recurrence or less indicative, and also what patients should do in response to those symptoms.”

    “In terms of the mental health impact, we know that it can have a big impact on a person’s level of general anxiety, and it also increases the likelihood of experiencing depression. In extreme cases it can cause a lot of social isolation or withdrawal, as people feel like they can’t talk to people about it or, or don’t feel like they can relate to people who might not have had cancer.”

    “It can cause them to withdraw from those social relationships that they would otherwise, you know, get support and value from.”

    Have you found that fear of recurrence is something that tends to improve over time for people, or is it normally that they have it and then that’s kind of it?

    “Yeah, so that’s the unfortunate thing. Despite what you might expect, or the intuitive expectation that fear of recurrence might reduce over time, we see that that’s not the case. In many people who have higher levels of fear of recurrence, if it’s left unaddressed, that tends to persist sometimes for many years post-treatment.”

    “So, it’s really important that we don’t assume that a person who might be five years post-treatment, doesn’t have these concerns because they’re very common, even in longer-term survivors.”

    Are there support resources or interventions that have shown promise in helping patients manage this fear?

    “There are quite a few different interventions available now for fear of recurrence. I guess where we have the most evidence is for individual interventions delivered by a psychologist in a one-on-one kind of context. And we know that this can help people with severe fear recurrence to reduce their concerns.”

    “We’ve also now got a lot of brief clinician-delivered interventions like CIPHER that Jenny Lou developed, which are designed to be incorporated into routine care and in incorporate elements such as just normalising and validating these concerns, giving prognostic information, telling people what their risk of recurrence is and what signs to look out for.”

    “And those have been shown to reduce fear of recurrence typically in people with mild to moderate kind of levels of fear of recurrence. We’re still lacking some options for the large group of about four out of 10 patients who have moderate fear of recurrence. There’s been quite a bit of work done looking at online interventions with varying degrees of success.”

    “We have found that for some of those interventions, the levels of engagement, and subsequent benefit are not as good as we would’ve liked. But there’s been some work done recently looking at interventions that have just a little bit of clinician support embedded into them. And we’ve found that they have much greater engagement and efficacy as well. So, I think there’s a lot of potential there for those types of interventions.”

    What would you say to someone who might be a couple years post-treatment who had just started noticing that these fears are becoming more prevalent?

    “Don’t be afraid to tell people or express those concerns to other people. I think it’s something that we know is very common, not only in individuals affected, but also their caregivers or support people. And just by sharing those concerns, I think it can help lighten the load for both those parties to some degree.”

    “Talk to your healthcare team about it because there are support options available that they can provide as well. There are also some great resources from places like the Cancer Council and the Australian Cancer Survivorship Center on fear of Recurrence, and they include tips around things like mindfulness, which can be helpful.”

    “We know that a lot of the interventions are kind of focused on not trying to eliminate these thoughts. We know that they’re almost inevitable. We’re never going to be able to get rid of them, but we can help people to live better with those concerns and not let them dominate their lives.”

    “So, getting some advice around things like relaxation training and meditation and mindfulness generally can be helpful. But if you do need further help, don’t be afraid to talk to your healthcare team about it because it’s a very common and understandable concern. And there is further support available.”

    “The main message for clinicians would be to ask about it. This is a very normal and understandable concern for a lot of people. So, we need to normalise and validate these concerns and make people feel comfortable talking about them. And hopefully patients realise they’re not alone in these worries and that there is help available.”

    “Even peer support can be a big help in addressing these concerns as well, just understanding that other people who are going through the same thing, and sharing those concerns with them.”

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SCREENING SMARTER: PERSONALISED APPROACHES IN BREAST CANCER

Associate Professor Sanjay Warrier joins us to discuss the future of tailored breast screening, a personalised approach that could revolutionise how we detect breast cancer earlier and more effectively.

Is it time to rethink a ‘one size fits all’ approach to breast screening?

Associate Professor Sanjay Warrier joins us to discuss the future of tailored breast screening, a personalised approach that could revolutionise how we detect breast cancer earlier and more effectively.

“I’m a breast surgeon in Sydney. I’m the  previous past president of Breast Surgeons of Australia and New Zealand, and for the last 10 to 11 years, been running our breast training program in Australia.”

“When we look at our screening program now, it’s a program that’s been present since the 1980s, and it considers a couple of factors including being female and getting older.”

“And we know when we look at risk, it’s ultimately not just driven by those two factors. So really the idea with tailored screening is to move it to a more unique and individualised approach, depending on your risk of developing breast cancer. And when we look at our program now, it’s from 40 years of age, every two years, but 50 to 74 is your age big group.”

“And again, that’s every two years for everybody. So, depending if you are at moderate risk based on family history and other things, or if you’ve got dense breasts, you’re still falling into a similar screening algorithm as everybody else.”

Listen to the podcast

Associate Professor Sanjay Warrier joins us to discuss the future of tailored breast screening, a personalised approach that could revolutionise how we detect breast cancer earlier and more effectively.

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Key takeaways

  • Current “one-size-fits-all” screening is outdated – Australia’s breast screening program, largely unchanged since the 1980s, relies mainly on age and gender, overlooking many other risk factors that could better guide screening frequency and methods.
  • Personalised screening considers multiple risk factors – Genetics (e.g., BRCA1/2 and other moderate-risk genes), family history, prior breast conditions (like atypical ductal hyperplasia), breast density, lifestyle factors, and hormonal exposures all influence an individual’s risk profile and could justify tailored screening.
  • Tailored screening can improve detection and reduce harm – By aligning screening intensity with risk categories (low, moderate, high), patients could benefit from earlier cancer detection (e.g., using contrast imaging for dense breasts) while avoiding unnecessary procedures in lower-risk groups.
  • Global research and local initiatives are driving change – International studies like WISDOM in the US and Australia’s own ROSA roadmap are building the evidence base. The next step will require government engagement, equity across rural and urban areas, and clinical champions to push personalised screening into routine practice.

What are the main factors that might influence a more personalised screening strategy for someone?

“It comes down to the fact that we know there are high risk genes that really make a big difference. So, if you have a gene mutation such as BRCA one or two, and there are a number of moderate risk genes that also increase your risk of breast cancer, and that often comes out from prior history of breast cancer, or members having a history and then testing that those, that group tend to move into a really high risk and end up being on a different pathway to breast screen.”

“And then outside of that, we know that there are other things such as family history that may not put you at that really high risk but may put you at a moderate or a low risk based on family history, but above a normal risk with no family history.”

“So that’s one thing. But then we’ve got other factors as well. We’re looking at if you’ve had breast operations before, you may have had diseases that increase your risk slightly. And the benign disease that can increase your risk slightly is having an atypical ductal hyperplasia, which is a good example or a lobular carcinoma in situ.”

“They’re not technically cancer, but they do increase your risk. And then there are several other factors as well. We know lifestyle factors do play a role and the more we know that there’s an increase if you drink a lot, if you smoke a lot, if you’re obese, they all subtly increase your risk of breast cancer. And obviously over a lifetime there is an increased risk with hormonal exposures.”

What does the current evidence say about the benefits of tailored breast screening?

“I think it comes down to the fact that if we were going to break up your risk based on being at low risk, moderate, and high risk, and not talk about the high risk group, you are ultimately going to capture more interval cancers in the high risk group by doing two yearly imaging and in that group, and potentially increase your rate of picking up cancers if you are also using other modalities for assessing.”

“With a dense breast, for instance, and someone who’s got a moderate to high-risk family history, there would be a potential advantage to having contrast imaging in that group. And I’d use the analogy of where’s Wally? So, when we look at those photos from when we were young and you’re trying to find Wally in there, it’s hard.”

“And that’s like the density in the breast. So, the idea of having a plain canvas to find Wally, that makes it a lot easier for the interventional group to detect the cancer.”

“Ultimately the goal is to work out how to develop a platform to create the evidence and then implement varying aspects of that into practice. But there is a real drive, and I do feel there are groups that have the appetite to potentially reshape the way that we do screening.”

“There are a lot of researchers working in this space, and it’s not just in Australia. There’s been studies such as the WISDOM Study led by Laura Esserman in America, and we have a roadmap to personalised screening known as ROSA, which has involved the government here in Australia, and key stakeholders.”

Looking to the future, how close are we to seeing tailored breast screening become part of routine care?

I think you need engagement from your stakeholders. It must be a priority. And it needs those stakeholders to then champion for change essentially. So, you’ll have the evidence, but then there’s the feasibility and pragmatism of distributing this firstly at certain sites and then being able to roll it out across a country, considering that breast screen is also about equity.”

“That’s another thing – are we going to be able to offer it in rural areas the same that we are in the Sydney, in the city? So it does need champions such as Professor Bruce Mann who is a good example, but there are others as well who have, who are passionate about it.”

“Ultimately, I do think it is key to continue coming back to why it’s important, because at the end of the day, we know as a breast surgeon seeing a breast cancer, that if we are able to find a cancer before it’s in the lymph nodes and before you know it’s large, we could potentially de-escalate the type of treatments we offer those patients, and make it a seamless sort of outcome for that patient.”

“So, really on the front end, I think if we can increase our diagnosis and be personalised about it, that would be fantastic. I really do hope that there is engagement with other groups. I know there’s been a lot with the government through the ROSA project. I think ultimately, it’s then taking those key stakeholders and trying to drive a narrative that increases the development of personalised screening. And the low picking fruit has been reporting on screening.”

“The fact that they’re now reporting on density of the breast means that it is a starting point towards working out how to then manage that group, so that’s the hope, and hopefully we are not in the same position in 10 years’ time.”

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Associate Professor Sanjay Warrier

Associate Professor Warrier is a Consultant Breast Surgeon based in Sydney, Australia.

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Listen Now: Screening Smarter – Personalised Approaches in Breast Cancer

Associate Professor Sanjay Warrier joins us to discuss the future of tailored breast screening, a personalised approach that could revolutionise how we detect breast cancer earlier and more effectively.

Podcast Transcript

  • Screening Smarter: Personalised Approaches in Breast Care

    Is it time to rethink a ‘one size fits all’ approach to breast screening? Associate Professor Sanjay Warrier joins us to discuss the future of tailored breast screening, a personalised approach that could revolutionise how we detect breast cancer earlier and more effectively.

    “I’m a breast surgeon in Sydney. I’m the  previous past president of Breast Surgeons of Australia and New Zealand, and for the last 10 to 11 years, been running our breast training program in Australia.”

    “When we look at our screening program now, it’s a program that’s been present since the 1980s, and it considers a couple of factors including being female and getting older.”

    “And we know when we look at risk, it’s ultimately not just driven by those two factors. So really the idea with tailored screening is to move it to a more unique and individualised approach, depending on your risk of developing breast cancer. And when we look at our program now, it’s from 40 years of age, every two years, but 50 to 74 is your age big group.”

    “And again, that’s every two years for everybody. So, depending if you are at moderate risk based on family history and other things, or if you’ve got dense breasts, you’re still falling into a similar screening algorithm as everybody else.”

    What are the main factors that might influence a more personalised screening strategy for someone?

    “It comes down to the fact that we know there are high risk genes that really make a big difference. So, if you have a gene mutation such as BRCA one or two, and there are a number of moderate risk genes that also increase your risk of breast cancer, and that often comes out from prior history of breast cancer, or members having a history and then testing that those, that group tend to move into a really high risk and end up being on a different pathway to breast screen.”

    “And then outside of that, we know that there are other things such as family history that may not put you at that really high risk but may put you at a moderate or a low risk based on family history, but above a normal risk with no family history.”

    “So that’s one thing. But then we’ve got other factors as well. We’re looking at if you’ve had breast operations before, you may have had diseases that increase your risk slightly. And the benign disease that can increase your risk slightly is having an atypical ductal hyperplasia, which is a good example or a lobular carcinoma in situ.”

    “They’re not technically cancer, but they do increase your risk. And then there are several other factors as well. We know lifestyle factors do play a role and the more we know that there’s an increase if you drink a lot, if you smoke a lot, if you’re obese, they all subtly increase your risk of breast cancer. And obviously over a lifetime there is an increased risk with hormonal exposures.”

    What does the current evidence say about the benefits of tailored screening and is it possible for that to lead to early detection or fewer unnecessary procedures for patients?

    “I think it comes down to the fact that if we were going to break up your risk based on being at low risk, moderate, and high risk, and not talk about the high risk group, you are ultimately going to capture more interval cancers in the high risk group by doing two yearly imaging and in that group, and potentially increase your rate of picking up cancers if you are also using other modalities for assessing.”

    “With a dense breast, for instance, and someone who’s got a moderate to high-risk family history, there would be a potential advantage to having contrast imaging in that group. And I’d use the analogy of where’s Wally? So, when we look at those photos from when we were young and you’re trying to find Wally in there, it’s hard.”

    “And that’s like the density in the breast. So, the idea of having a plain canvas to find Wally, that makes it a lot easier for the interventional group to detect the cancer.”

    How are researchers and clinicians working to determine who might benefit from more or less intensive screening?

    “So, there are a lot of researchers working in this space, and it’s not just in Australia. There’s been studies such as the WISDOM Study led by Laura Esserman in America, and we have a roadmap to personalised screening known as ROSA, which has involved the government here in Australia, and key stakeholders.”

    “And ultimately the goal is to work out how to develop a platform to create the evidence and then implement varying aspects of that into practice. But there is a real drive, and I do feel there are groups that have the appetite to potentially reshape the way that we do screening.”

    Looking to the future, how close are we to seeing tailored breast screening become part of routine care, and what would need to happen to make that a reality?

    I think you need engagement from your stakeholders. It must be a priority. And it needs those stakeholders to then champion for change essentially. So, you’ll have the evidence, but then there’s the feasibility and pragmatism of distributing this firstly at certain sites and then being able to roll it out across a country, considering that breast screen is also about equity.”

    “That’s another thing – are we going to be able to offer it in rural areas the same that we are in the Sydney, in the city? So it does need champions such as Professor Bruce Mann who is a good example, but there are others as well who have, who are passionate about it.”

    “Ultimately, I do think it is key to continue coming back to why it’s important, because at the end of the day, we know as a breast surgeon seeing a breast cancer, that if we are able to find a cancer before it’s in the lymph nodes and before you know it’s large, we could potentially de-escalate the type of treatments we offer those patients, and make it a seamless sort of outcome for that patient.”

    “So, really on the front end, I think if we can increase our diagnosis and be personalised about it, that would be fantastic. I really do hope that there is engagement with other groups. I know there’s been a lot with the government through the ROSA project. I think ultimately, it’s then taking those key stakeholders and trying to drive a narrative that increases the development of personalised screening. And the low picking fruit has been reporting on screening.”

    “The fact that they’re now reporting on density of the breast means that it is a starting point towards working out how to then manage that group, so that’s the hope, and hopefully we are not in the same position in 10 years’ time.”

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ADVANCING CARE FOR YOUNG WOMEN WITH BREAST CANCER

Dr Belinda Kiely explains the ground-breaking OPTIMA-Young trial, part of the larger PATH-for-Young initiative, exploring how global collaboration could change the future of treatment for younger patients.

About the OPTIMA-Young Clinical Trial

Young women with breast cancer often face unique challenges beyond their diagnosis, including long-term survivorship issues, fertility and family planning concerns, and a higher likelihood of aggressive cancers, but are there treatment pathways keeping up?

Dr Belinda Kiely explains the groundbreaking OPTIMA Young trial, part of the larger Path-for-Young Initiative that’s exploring how global collaboration could change the future of treatment for younger patients.

The OPTIMA study, the main study has been running now for many years internationally, and it’s looking at whether a multi-gene assay called Prosigna can be used to help determine which women really need chemotherapy, and which women can be spared chemotherapy as treatment for their breast cancer.”

“And that study is open to people from the age of 40 and over. The study is trying to prove that the use of the Prosigna test is non-inferior to standard treatment where everybody gets chemotherapy and endocrine therapy, and that study is expected to produce results probably in the next year or two.”

“There will be some premenopausal women in that study, but it’s probably only going to be about a third of the population, so it will only be a subgroup. The study won’t really be able to answer with significant power the question of whether this test-based approach of doing the Prosigna is safe in premenopausal women.”

“What Path-for-Young is trying to do is answer that question, is it safe to use a test to select premenopausal women who can be spared chemotherapy? The premenopausal women who have been recruited to the OPTIMA study over the last several years will be included along with an extension of the OPTIMA study, looking specifically at premenopausal women aged 18 to 55.”

“And then in Europe there’s going to be a separate OPTIMA-Young Study with similar eligibility criteria and a similar design where again, premenopausal women will be randomised to having a Prosigna test guided approach to their treatment or standard treatment. Path-for-Young is really the umbrella sort of putting all this together.”

“And it will be an international recruitment from Europe, from the United Kingdom and Australia will be participating in getting a large number, over 4,000 pre-menopausal women to really answer that question, can we select the women who really need chemotherapy and those that can be spared chemotherapy?”

“I think no one wants to have chemotherapy because it has a lot of side effects. Now, many of those side effects are short term, but there’s also some that are long term. And I think particularly for premenopausal women, the chemotherapy can have massive effects on things like their body image, losing their hair, but also the risk of early menopause infertility.”

“Often women are diagnosed with breast cancer when they’re in at a young age where they haven’t maybe completed their families or started their families. They haven’t yet found their sort of life partner. And I think having chemotherapy can really have a big impact on those things, and their ability to work and maintain their job. Chemotherapy can really make that difficult. I think for all women it’s important to try and make sure the people that get the chemotherapy really need it.”

“But I think particularly for those young women, if we can spare them some of these long-term risks and also those risks for fertility and early menopause, there’s benefits to be had.”

Listen to the podcast

Dr Belinda Kiely explains the ground-breaking OPTIMA-Young trial, part of the larger PATH-for-Young initiative, exploring how global collaboration could change the future of treatment for younger patients.

key take away icon

Key takeaways

  • Young women face unique challenges with breast cancer treatment – Beyond survival, chemotherapy poses long-term risks such as early menopause, infertility, body image issues, and work disruption, making it especially important to avoid unnecessary treatment in this group.

  • OPTIMA-Young and Path-for-Young trials aim to personalise treatment – These large-scale, international studies are testing whether the Prosigna multi-gene assay can safely identify which premenopausal women truly need chemotherapy versus those who can be spared.

  • Global collaboration is essential – Because premenopausal breast cancer is less common, recruiting nearly 5,000 patients requires a joint international effort across Europe, the UK, and Australia to generate strong, reliable evidence.

  • Potential shift toward personalised, less toxic care – If successful, OPTIMA-Young could establish a new standard of care where treatment decisions are guided by tumour biology rather than blanket chemotherapy, improving quality of life for many young women.

How does OPTIMA-Young differ from existing treatment approaches?

“I think the standard approach for young women with hormone receptor positive high risk breast cancer is that they all get chemotherapy and they all get endocrine therapy. There have been studies done looking at tests like the Prosigna test, predominantly in postmenopausal women showing that those women can be spared chemotherapy using one of these tests to select low risk. But we don’t yet have evidence that this is safe to do in premenopausal women.”

“And some of these studies have said that in premenopausal women, the chemotherapy is more important. What we don’t know is whether the chemotherapy benefit is coming from something the chemotherapy is doing in those young women or whether it’s related to the fact that many young women go into an early menopause from the chemotherapy, and it’s actually that early menopause that’s making the chemotherapy have the benefit in that group.”

Path-for-Young is being run in Europe, and OPTIMA-Young is being run globally. Why is it important to have an international collaborative approach?

“To really answer this question, you’re going to need almost 5,000 patients, and no one country could do that. I guess in general, most breast cancer still happens in women who are postmenopausal. The premenopausal population with hormone positive breast cancer is a small group.”

“To get that 5,000 patients, To be able to really answer this question, it needs to be a joint effort. So, I think this Path-for-Young program is incredible how it is bringing together doctors and patients from across the globe. It is going to be Europe, it is going to be the UK, it is going to be Australia, and I think that’s going to be really important to help answer this question once and for all.”

“I think it’s going to really make how we treat young women a lot more personalised and hopefully spare a lot of women the side effects of chemotherapy when they’re not going to benefit from the chemotherapy.”

How will findings from OPTIMA-Young potentially change the way we treat young breast cancer patients in the future?

“So, if we can show that doing a Prosigna test can select the patients that need chemotherapy and those that don’t. This will become standard of care. So, a new patient that comes to see me with a hormone receptor positive breast cancer, rather than me saying you need to have chemotherapy, I can do a test on their tumor and say based on the results of this test, your cancer is high risk therefore, I think you really do need to have chemotherapy, or based on this test, we think you are not going to benefit from chemotherapy. You don’t need to have chemotherapy, and what we need to do for you is focus on the endocrine therapy.”

“What I would like to see is better, more focused and personalised treatment and better ways to manage the side effects. I think the next challenge, if we do find that OPTIMA-Young can spare more women from chemotherapy, and therefore the main treatment is endocrine therapy, I think the next challenge is going to be what can we do to manage the side effects of that endocrine therapy to make sure our young women with hormone receptor positive breast cancer can lead the best lives and the best, have the best quality of life possible.”

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Dr Belinda Kiely

Dr Belinda Kiely is a Medical Oncologist in Sydney specialising in the treatment of breast cancer.

More research into breast cancer in young women is needed.

Listen Now: Advancing Care for Young Women with Breast Cancer

Dr Belinda Kiely explains the ground-breaking OPTIMA-Young trial, part of the larger PATH-for-Young initiative, exploring how global collaboration could change the future of treatment for younger patients.

Podcast Transcript

  • Advancing Care for Young Women with Breast Cancer

    Young women with breast cancer often face unique challenges beyond their diagnosis, including long-term survivorship issues, fertility and family planning concerns, and a higher likelihood of aggressive cancers, but are there treatment pathways keeping up?

    Dr Belinda Kiely explains the groundbreaking OPTIMA Young trial, part of the larger Path-for-Young Initiative that’s exploring how global collaboration could change the future of treatment for younger patients.

    “The OPTIMA study, the main study has been running now for many years internationally, and it’s looking at whether a multi-gene assay called Prosigna can be used to help determine which women really need chemotherapy, and which women can be spared chemotherapy as treatment for their breast cancer.”

    “And that study is open to people from the age of 40 and over. The study is trying to prove that the use of the Prosigna test is non-inferior to standard treatment where everybody gets chemotherapy and endocrine therapy, and that study is expected to produce results probably in the next year or two.”

    “There will be some premenopausal women in that study, but it’s probably only going to be about a third of the population, so it will only be a subgroup. The study won’t really be able to answer with significant power the question of whether this test-based approach of doing the Prosigna is safe in premenopausal women.”

    “What Path-for-Young is trying to do is answer that question, is it safe to use a test to select premenopausal women who can be spared chemotherapy? The premenopausal women who have been recruited to the OPTIMA study over the last several years will be included along with an extension of the OPTIMA study, looking specifically at premenopausal women aged 18 to 55.”

    “And then in Europe there’s going to be a separate OPTIMA-Young Study with similar eligibility criteria and a similar design where again, premenopausal women will be randomised to having a Prosigna test guided approach to their treatment or standard treatment. Path-for-Young is really the umbrella sort of putting all this together.”

    “And it will be an international recruitment from Europe, from the United Kingdom and Australia will be participating in getting a large number, over 4,000 pre-menopausal women to really answer that question, can we select the women who really need chemotherapy and those that can be spared chemotherapy?”

    “I think no one wants to have chemotherapy because it has a lot of side effects. Now, many of those side effects are short term, but there’s also some that are long term. And I think particularly for premenopausal women, the chemotherapy can have massive effects on things like their body image, losing their hair, but also the risk of early menopause infertility.”

    “Often women are diagnosed with breast cancer when they’re in at a young age where they haven’t maybe completed their families or started their families. They haven’t yet found their sort of life partner. And I think having chemotherapy can really have a big impact on those things, and their ability to work and maintain their job. Chemotherapy can really make that difficult. I think for all women it’s important to try and make sure the people that get the chemotherapy really need it.”

    “But I think particularly for those young women, if we can spare them some of these long-term risks and also those risks for fertility and early menopause, there’s benefits to be had.”

    And how does OPTIMA Young differ from existing treatment approaches?

    “I think the standard approach for young women with hormone receptor positive high risk breast cancer is that they all get chemotherapy and they all get endocrine therapy. There have been studies done looking at tests like the Prosigna test, predominantly in postmenopausal women showing that those women can be spared chemotherapy using one of these tests to select low risk. But we don’t yet have evidence that this is safe to do in premenopausal women.”

    “And some of these studies have said that in premenopausal women, the chemotherapy is more important. What we don’t know is whether the chemotherapy benefit is coming from something the chemotherapy is doing in those young women or whether it’s related to the fact that many young women go into an early menopause from the chemotherapy, and it’s actually that early menopause that’s making the chemotherapy have the benefit in that group.”

    So, Path-for-Young is being run in Europe and Optima Young is being run globally. Why is it important to have an international collaborative approach?

    “To really answer this question, you’re going to need almost 5,000 patients, and no one country could do that. I guess in general, most breast cancer still happens in women who are postmenopausal. The premenopausal population with hormone positive breast cancer is a small group.”

    “To get that 5,000 patients, To be able to really answer this question, it needs to be a joint effort. So, I think this Path-for-Young program is incredible how it is bringing together doctors and patients from across the globe. It is going to be Europe, it is going to be the UK, it is going to be Australia, and I think that’s going to be really important to help answer this question once and for all.”

    How will findings from Optima-Young potentially change the way we treat young breast cancer patients in the future?

    “So, if we can show that doing a Prosigna test can select the patients that need chemotherapy and those that don’t. This will become standard of care. So, a new patient that comes to see me with a hormone receptor positive breast cancer, rather than me saying you need to have chemotherapy, I can do a test on their tumor and say based on the results of this test, your cancer is high risk therefore, I think you really do need to have chemotherapy, or based on this test, we think you are not going to benefit from chemotherapy. You don’t need to have chemotherapy, and what we need to do for you is focus on the endocrine therapy.”

    “I think it’s going to really make how we treat young women a lot more personalised and hopefully spare a lot of women the side effects of chemotherapy when they’re not going to benefit from the chemotherapy.”

    “What I would like to see is better, more focused and personalised treatment and better ways to manage the side effects. I think the next challenge, if we do find that OPTIMA-Young can spare more women from chemotherapy, and therefore the main treatment is endocrine therapy, I think the next challenge is going to be what can we do to manage the side effects of that endocrine therapy to make sure our young women with hormone receptor positive breast cancer can lead the best lives and the best, have the best quality of life possible.”

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BREAST CANCER FATIGUE VS NORMAL FATIGUE: WHAT YOU NEED TO KNOW

Learn how breast cancer fatigue differs from normal tiredness. Trusted information to help patients and caregivers understand and manage fatigue.

Fatigue is one of the most common and challenging symptoms experienced by people with breast cancer, yet it is often underestimated. Unlike normal tiredness, breast cancer-related fatigue can be overwhelming and persistent, affecting every part of a person’s daily life.

This article explores the differences between breast cancer-related fatigue vs normal fatigue, why these differences matter, and how patients and caregivers can better understand and manage this symptom.

What is Breast Cancer-Related Fatigue?

Breast cancer-related fatigue is a persistent, distressing sense of physical, emotional and/or mental exhaustion that is disproportionate to recent activity and is not relieved by rest or sleep.

This is one of the most common and challenging aspects of breast cancer and it often affects daily life more than people expect. Individuals experiencing this type of fatigue may notice a loss of energy that impacts their ability to concentrate, work, socialise, exercise, or even manage basic household tasks.

Unlike normal tiredness, which is usually resolved with rest, breast cancer fatigue can last for weeks or months with no real relief.

Causes of breast cancer-related fatigue include:

  • Biological factors: cancer burden, inflammation and changes in metabolism caused by the breast cancer itself.
  • Psychological factors: stress, anxiety, and depression can significantly contribute to exhaustion.
  • Treatment-related factors: chemotherapy and immunotherapy, radiation therapy, surgery, and hormone therapy are all known to cause fatigue.

Recognising and managing fatigue is an important part of improving quality of life for people with breast cancer.  Breast Cancer Trials is dedicated to research that not only finds better treatments and prevention strategies but also improves the quality of life of patients during and after treatment.

Breast Cancer-Related Fatigue vs Normal Fatigue

Understanding the distinction between normal fatigue vs breast cancer fatigue is necessary for both patients and caregivers.

a comparision table that is comparing breat cancer-related fatigue vs normal fatigue

Scenario: A person with normal tiredness may feel refreshed after a weekend off. Someone with breast cancer fatigue may wake up exhausted despite sleeping for 10 hours.

Patients often share similar experiences on forums such as reddit, which helps validate these feelings for others living through it. One patient described their experience:

  • “I am exhausted. This is my 3rd day off, and I still feel utterly shattered. I know not sleeping well doesn’t help, but my body feels devoid of energy.” – shared in an online support forum.

BCNA have an online network where patients share their experiences with breast cancer fatigue.

  • “I remember the fatigue from radiation was overwhelming at the end. I remember sitting at the traffic lights thinking l wonder if l just put my head down on the wheel would anyone notice. Worst ever tiredness. Sleep sleep and more sleep.” – Adean.

Hearing real-life experiences like this reassures people that they are not alone – and that what they are experiencing is a recognised symptom of breast cancer, not simply a sign of “not trying hard enough.” This distinction is important for self-compassion, for seeking appropriate medical advice, and for ensuring fatigue is addressed as part of holistic breast cancer care.

Does Breast Cancer Make You Tired?

Breast cancer can cause significant tiredness, even before treatment begins. This is often surprising for patients who expect fatigue to be linked only to treatments such as chemotherapy or radiation therapy, but the cancer itself can cause profound tiredness.

Why does breast cancer cause fatigue?

Fatigue in breast cancer is often multi-factorial, meaning there are several overlapping causes:

Biological factors

  • Cancer cells consume a significant amount of the body’s energy as they grow and divide.
  • The presence of cancer triggers the release of chemicals called cytokines, which are part of the immune system’s inflammatory response. These chemicals can disrupt how your body produces and uses energy, leading to fatigue.

Emotional and psychological stress

  • A breast cancer diagnosis can lead to heightened anxiety, stress and even depression, all of which can drain energy levels.
  • Sleep is often disrupted by worry, contributing further to tiredness.

Physical changes

  • Pain or discomfort caused by the tumour itself can make it harder to rest properly.
  • Appetite loss, nausea or changes in eating patterns can reduce calorie intake, leaving the body with less fuel for daily activities.

fatigue | 2

What Stage of Breast Cancer Causes Fatigue?

Breast cancer fatigue can occur at any stage of breast cancer, from early diagnosis to advanced disease. It is not limited to later stages or to periods during treatment.

For many with early breast ancer, fatigue may occur even before treatment begins. This can be caused by the physical effects of the breast cancer on the body, such as:

  • Inflammation and changes in metabolism
  • The emotional impact of receiving a diagnosis.
  • Diagnosis shock – the stress, anxiety and disrupted sleep that often follow the news can significantly drain energy and contribute to early fatigue.

With metastatic breast cancer, fatigue may become more severe due to a higher cancer burden, more intensive treatment, or complications from the disease like pain. However, it’s important to note that even when the cancer is small or localised, the body’s immune and stress responses can still trigger significant tiredness.

When considering which stage of breast cancer causes fatigue, it is less about pinpointing one phase of illness and more about understanding that fatigue is possible at any point. This knowledge helps patients and caregivers take symptoms seriously, seek support early, and manage fatigue as part of comprehensive breast cancer care.

Breast Cancer Fatigue Before Treatment Begins

Fatigue can occur at any stage of breast cancer – and for some people, it appears well before treatment begins. This early fatigue can be driven by a mix of physical changes caused by the cancer itself and the emotional impact of receiving a diagnosis.

Fatigue before breast cancer diagnosis – physiological changes

Before treatment starts, the body may respond to an emerging tumour with inflammatory changes that can disrupt metabolism, leading to loss of energy and significant tiredness. Immune system activation and hormonal disruption, such as changes in cortisol, can also cause breast cancer fatigue symptoms even before treatment begins.

In the CANcer TOxicity (CANTO) cohort study, 24.3% of women with stage I to III breast cancer reported severe fatigue at diagnosis – before any treatment had begun. This shows that early-stage breast cancer and fatigue are linked, and that early-stage breast cancer can cause fatigue.

Breast cancer fatigue before treatment – emotional impact

The period immediately after a breast cancer diagnosis can also be exhausting on an emotional level. Diagnosis shock – with its stress, anxiety, disrupted sleep, and emotional upheaval can cause a persistent “mental fog” that makes daily life feel overwhelming. For some, this emotional strain combines with existing physical tiredness, leading to breast cancer fatigue before treatment has begun.

Recognising fatigue before treatment validates patients’ experiences and ensures it is addressed early. By acknowledging that both physical and emotional factors can drive fatigue before a single treatment session has begun, patients can be offered supportive care strategies sooner, improving quality of life from the very start of their breast cancer journey.

Fatigue During and After Breast Cancer Treatment

Radiation Therapy and Fatigue

Fatigue from radiation therapy for breast cancer usually develops gradually rather than appearing suddenly. For most patients, it starts as mild fatigue in the early weeks, then peaks toward the end or even after the treatment course is completed. This is due to the body’s need to repair the healthy tissue that is also affected by radiation, alongside the effect of radiation on the cancer cells.

How long fatigue lasts after radiation for breast cancer varies from person to person. Many people notice improvement within two to four weeks after finishing treatment, but for others, fatigue can persist for several months as the body continues to recover.

Practical ways to manage radiation-related fatigue include:

  • Staying well-hydrated to support overall health and energy.
  • Engaging in gentle physical activity, such as walking or stretching, which research shows can help restore energy levels.
  • Prioritising rest and scheduling tasks for times of day when energy is highest.

Breast Cancer Trials EXPERT trial is exploring whether the Prosigna genomic test of breast cancer tissue can identify women who can safely avoid radiation therapy after breast cancer surgery, potentially avoiding the fatigue it can cause. The PROSPECTIVE trial is another radiotherapy omission trial, examining whether MRI can detect patients who can be successfully treated with surgery without radiotherapy, reducing side effects like fatigue and lowering the overall treatment burden.

Surgery, Chemotherapy, and Hormone Therapy Fatigue

Different breast cancer treatments can cause fatigue in different ways. The type, timing, and intensity of fatigue will depend on the treatment and the individual.

Surgery

Post-surgery fatigue is common due to the body’s healing process, the lingering effects of anaesthesia, and pain medications. Recovery may take several weeks, and for some people, emotional stress can make tiredness more noticeable.

Chemotherapy

Chemotherapy often leads to intense, prolonged fatigue because it impacts healthy cells as well as cancer cells. Immune suppression, anaemia, and the body’s efforts to clear treatment toxins all contribute to low energy.

The OPTIMA trial is testing whether the Prosigna genomic test of breast cancer tissue can help identify individuals who can safely avoid chemotherapy and its potential side effects, including severe fatigue, when the treatment is unlikely to provide additional benefit.

Hormone Therapy

Hormone therapy, typically taken for years after initial treatment, can lead to ongoing low-grade fatigue due to hormone changes, particularly reduced oestrogen. These changes can affect sleep quality, mood, and overall energy balance.

Is Fatigue a Sign of Breast Cancer Recurrence?

While fatigue is a common symptom of breast cancer, fatigue alone is rarely a sign of breast cancer recurrence. However, new or worsening fatigue should be discussed with your medical practitioner.

Other symptoms to watch for include:

  • New pain or lumps.
  • Unexplained weight loss.
  • Persistent nausea or other changes in health.

How to Manage Breast Cancer-Related Fatigue

Feeling a persistent lack of energy and motivation is one of the most frustrating aspects of breast cancer-related fatigue. For many people, it’s not just physical tiredness – it’s also the lack of motivation or energy to take part in the activities they once enjoyed. Even simple daily tasks can feel overwhelming, leaving you feeling constantly tired and unable to recharge.

Managing breast cancer-related fatigue symptoms requires a versatile approach:

  • Gentle exercise (like walking or yoga) can help maintain energy.
  • Prioritise quality sleep and rest.
  • Maintain a balanced diet – read dietitian Dr Cindy Tan’s advice.
  • Keep a fatigue diary to track patterns.
  • Access emotional support and counselling.

If fatigue is persistent, worsening, or affecting the ability to carry out daily activities, it’s time to seek professional support. This is especially important if fatigue is accompanied by other symptoms like breathlessness, dizziness, or unexplained pain.

Through Breast Cancer Trials’ research program we’re exploring ways to better understand and manage side effects like fatigue, and shape future treatments.

When to Seek Help for Breast Cancer Fatigue

Fatigue is more than just tiredness. Seek medical advice if fatigue:

  • Interferes with daily tasks like bathing, eating or walking.
  • Is worsening over time.
  • Impacts your safety (e.g. falling asleep at work or while driving).

Managing fatigue is part of holistic breast cancer care. Your doctor can help rule out other causes like anaemia or thyroid issues.

Frequently Asked Questions

Does breast cancer make you tired before treatment?

Yes, many patients report fatigue even before treatment begins. This early tiredness can be caused by the body’s immune response to the tumour, inflammation, and the stress of the diagnosis process. The emotional impact – including shock, anxiety, and disrupted sleep – can also contribute.

How long does fatigue last after radiation treatment for breast cancer?

Fatigue from radiation therapy often builds gradually during the treatment course and peaks toward the end. Most people experience tiredness for several weeks after treatment finishes, though in some cases it can persist for a few months. The length and severity of fatigue depend on factors such as treatment intensity, duration and overall health.

Can early stage breast cancer cause fatigue?

Yes, even early-stage breast cancer can cause fatigue. The cancer itself may release substances that affect metabolism and energy production, while emotional stress, anxiety, and sleep disruption around the time of diagnosis can add to the problem.

Is fatigue after surgery normal?

Yes – fatigue is very common after breast cancer surgery. It can be caused by the body’s healing process, the lingering effects of anaesthesia, pain medications, and emotional stress. For most patients, energy levels gradually improve over time, but some may continue to feel tired for weeks or even months post-surgery.

How can I tell if my fatigue is normal or breast cancer-related?

Breast cancer-related fatigue is typically persistent and not relieved by rest or sleep. It may feel overwhelming and affect concentration, emotions, and physical ability. If you are tired all day despite getting enough sleep, or if fatigue is interfering with your daily life, it could be cancer-related.

Sources:

https://forum.breastcancernow.org/t/normal-fatigue/132672?

https://onlinenetwork.bcna.org.au/discussions/side-effects/fatigue/178218

clinical-breast-cancer.com+4sciencedirect.com+4ascopost.com+4cheneyclinic.com

https://ascopost.com/news/february-2022/predictive-model-for-severe-fatigue-after-breast-cancer-diagnosis/

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WHAT IS BREAST LYMPHOEDEMA?

Learn about breast lymphoedema, a side effect of breast cancer treatment. Understand symptoms and management options from Breast Cancer Trials.

Breast lymphoedema is the build-up of lymphatic fluid in the breast and/or chest wall. This can lead to swelling, discomfort, and changes in skin texture. This can develop when the lymphatic system is damaged or disrupted, by breast cancer itself or following breast cancer treatments such as surgery, lymph node removal, or radiation therapy that may damage or disrupt the lymphatic system. This condition is distinct from the more widely known arm lymphoedema and may occur even when arm swelling is not present.

For many, breast lymphoedema develops gradually, sometimes appearing weeks, months or even years after treatment. Lymphoedema of the breast is usually caused by treatment rather than the cancer itself. While it may not be life-threatening, it can significantly affect quality of life if not managed. People who have experienced lymphoedema after breast cancer surgery should be aware of the signs and seek early advice from their healthcare team.

At Breast Cancer Trials, we are dedicated to improving treatment outcomes and managing side effects particularly through treatment optimisation.

What Does Breast Lymphoedema Look Like?

The appearance and feel of breast lymphoedema can vary. Common breast lymphoedema symptoms include:

  • Swelling or puffiness in the breast
  • Feelings of heaviness or fullness
  • Tightness in the skin or surrounding breast tissue
  • Redness or warmth
  • Tenderness when touched

Less common breast lymphoedema symptoms include:

  • Skin thickening
  • Dimpling
  • Or changes in texture over time

what breast lymphoedema looks like | 3

These symptoms can be subtle and may fluctuate, so familiarity with what is normal for you is important for early detection.

While this guide is designed to help you recognise the signs, it is important to remember that symptoms can be confused with other conditions, such as infection, inflammation, breast cancer recurrence, or the skin effects of radiation treatment. Knowing what breast lymphoedema looks like and the symptoms can help individuals and healthcare providers distinguish it from these other concerns and seek appropriate treatment sooner. Early detection can improve comfort and reduce the risk of lymphoedema progression, reaffirming the importance of seeking medical advice promptly.

How Common is Breast Lymphoedema?

Breast lymphoedema occurs less frequently than arm lymphoedema. It is more likely after treatments that affect lymphatic drainage, including axillary surgery, radiation therapy to the chest wall, and infections or injuries in the breast area after treatment.

Australian studies and clinical experience indicate the condition is often underdiagnosed, partly because symptoms may be mild or delayed. While Breast Cancer Trials does not conduct research specifically into breast lymphoedema incidence, many of our clinical trials focus on treatment optimisation to improve quality of life and reduce treatment side effects wherever possible.

What Percentage of Breast Cancer Patients Get Lymphoedema?

An Australian survey conducted via Breast Cancer Network Australia found that 35% of women reported having lymphoedema after breast cancer treatment, with an additional 9% unsure whether they had it. This highlights the likelihood of underdiagnosis and the need for improved awareness.

In addition, Cancer Council Australia notes that one study estimated lymphoedema occurs in about 20% of people treated for cancers such as breast, melanoma, gynaecological, or prostate cancers. While this percentage includes lymphoedema in areas other than the breast, it reinforces that lymphoedema is a common side effect of cancer treatment.

Breast lymphoedema is a side effect for people treated for breast cancer, regardless of whether they have a mastectomy or breast-conserving surgery (also known as a lumpectomy). Because the risk is present across treatment types, it’s important for anyone who has undergone surgery and/or radiation to be aware of early signs and to have regular follow-up, so that any lymphoedema can be managed promptly.

Causes of Breast Lymphoedema

Breast lymphoedema develops when lymphatic drainage is disrupted, leading to fluid build-up in breast tissue. This may occur after lymph node removal (sentinel node biopsy or axillary clearance) and radiation therapy, and can be worsened by trauma to lymphatic vessels, inflammation, scar tissue, or fibrosis.

Certain chemotherapy drugs, infections, or injury to the breast or chest area post-treatment can also contribute. A related condition, known as cording after breast cancer, can sometimes occur alongside or after breast lymphoedema.

Breast Lymphoedema After Radiation

Radiation can damage lymphatic vessels, narrowing or scarring them and reducing fluid drainage. People who receive radiation to the breast, chest wall, axilla, or collarbone area may develop breast lymphoedema months or even years after treatment.

The EXPERT clinical trial, led by Breast Cancer Trials, is investigating whether some people can safely avoid radiotherapy after breast cancer surgery. By identifying those who may not need radiation, the trial aims to help them avoid potential side effects, including breast lymphoedema.

How to Avoid Lymphoedema After Lymph Node Removal

Although there is no guaranteed way to avoid breast lymphoedema, adopting certain strategies can reduce your risk. Recommendations for the prevention of breast lymphoedema include:

  • Maintaining good skin health to prevent infection
  • Avoiding injuries or burns to the breast or chest area
  • Wearing supportive and well-fitting bras
  • Keeping physically active
  • Maintaining a healthy weight

For people looking at how to avoid lymphoedema after lymph node removal, gentle stretching and strengthening exercises approved by a physiotherapist can help keep lymph fluid moving. Early reporting of swelling or changes to your doctor remains the most important step.

Breast Lymphoedema Compression and Other Management Options

Breast lymphoedema compression therapy is one of the most effective ways to manage swelling and improve comfort. Compression garments for lymphoedema, such as specially designed bras or pads, apply gentle pressure to the affected area to help move lymph fluid away from the breast.

For people with both breast and arm swelling, compression arm sleeves for lymphoedema are available through hospitals, lymphoedema clinics, and medical suppliers. Management may also include:

  • Manual lymph drainage by a qualified therapist
  • Gentle exercise
  • Skin care routines to prevent infection
  • Temporary bandaging

Frequently Asked Questions

What’s the difference between primary and secondary lymphoedema?

Primary lymphoedema is caused by a genetic condition affecting the lymphatic system. Secondary lymphoedema develops after damage to the lymphatic system, such as from breast cancer treatments. Breast lymphoedema is considered to be a secondary lymphoedema.

Do compression sleeves help with breast lymphoedema?

Compression sleeves may help if swelling extends to the arm. For breast-only lymphoedema, a compression bra or pad is often more suitable to provide compression to the affected area and encourage drainage away from this area.

Is lymphoedema cancer?

No – lymphoedema is not cancer. It is a condition caused by a build-up of lymphatic fluid in tissues due to problems with the lymphatic system.

Can lymphoedema be cured?

While breast lymphoedema can’t always be permanently cured, symptoms can often be well managed. With breast lymphoedema treatment and self-care, swelling can reduce and comfort can improve.

Sources:

https://www.racgp.org.au/getattachment/5a01a899-35fd-47fe-a1c8-806be1967121/Breast-cancer-related-lymphoedema.aspx

https://www.cancer.org.au/assets/pdf/understanding-lymphoedema

Breast Cancer Trials and Ongoing Research

At Breast Cancer Trials, we are committed to clinical research that optimises treatments to improve quality of life and reduce side effects, so that no lives are cut short by breast cancer.

Several of our current studies are focused on treatment optimisation, including trials like EXPERT, which is investigating whether some patients can safely avoid radiotherapy; PROSPECTIVE, which aims to find out if surgery without radiotherapy will still be effective at stopping the cancer coming back and reduce the side effects and cost of usual treatment; and OPTIMA, which is exploring how to tailor chemotherapy use more precisely. These studies aim to improve outcomes while reducing the impact of treatment side effects.

If you’d like to learn more about our current research or how to get involved, you can explore details about these  trials and other opportunities to participate, or sign up for our researcher’s newsletter via the form below to stay up to date.

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Whistle Blows on Let’s Tackle Breast Cancer Campaign

Breast Cancer Trials was proud to be the official charity partner for Day 1 of the inaugural NRLW Magic Round in Newcastle, with the city turning pink in support of breast cancer research.

Whistle Blows on Let’s Tackle Breast Cancer Campaign

Breast Cancer Trials (BCT) was honoured to serve as the official charity partner for Day 1 of the inaugural NRLW Magic Round, hosted in Newcastle. The campaign represented an important opportunity to raise awareness of breast cancer, engage the community, and generate vital funds to support our research program.

Throughout Magic Round weekend, the City of Newcastle was illuminated in pink, symbolising solidarity with those affected by breast cancer. The support of local businesses and organisations ensured our message reached far and wide: buses and trams carried our branding across the city, billboards greeted visitors at the train station, tugboats displayed banners across the harbour, and McDonald Jones Stadium shone brightly in pink on game day.

From digital engagement and media coverage to the electric atmosphere on the ground, the campaign was a resounding success and left a strong mark on the community.

Game Day Energy

On game day, approximately 50 volunteers, staff members, and community supporters joined forces to represent Breast Cancer Trials. Together, they sold raffle tickets, hosted guests, and ensured a strong presence despite challenging weather conditions. The organisation extends its appreciation to Board Members, Ms Larissa Willoughby and Mr Andrew Spillane, who provided invaluable leadership and support on the day, alongside our dedicated staff and volunteers.

Incredible Results

The campaign achieved outstanding results, raising more than $11,000 through the 50/50 Charity Raffle and an additional $54,000 in matched donations, generously supported by our corporate partners: Lake Macquarie Private Hospital, GenesisCare, Hunter Imaging, Commercial Collective, and Molycop. These funds will directly support world-leading clinical trials research to improve treatments and outcomes for people affected by breast cancer.

Acknowledging Our Supporters

Breast Cancer Trials gratefully acknowledges the generous $50,000 grant provided by the NSW Government in support of breast cancer awareness and vital research. We particularly thank the NSW Minister for Women, the Hon. Jodie Harrison MP, for her leadership and commitment to advancing progress in this field.

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BREAST CANCER VACCINE: WHY MORE RESEARCH IS NEEDED BEFORE ROUTINE CLINICAL USE

A potential breast cancer vaccine has completed early clinical trials, showing promising results. Learn more about research into cancer vaccines.

A vaccine is a treatment that helps the body to develop immunity to a specific disease without causing the illness itself. Whilst vaccines traditionally target infectious disease, like chicken pox, a potential breast cancer vaccine has completed Phase 1 clinical trials, or the very first stage of testing in humans. This marks a significant development in cancer prevention research. This investigational vaccine is designed to train the body’s immune system to recognise and attack breast cancer cells before tumours can form – offering hope particularly for those at high risk of developing triple-negative breast cancer (TNBC), one of the most aggressive and difficult-to-treat subtypes.

The initial trial included women previously diagnosed with early-stage TNBC or with a strong family history of the disease. Early results suggest that the vaccine is safe and able to stimulate a strong response by the immune system. It is now progressing into Phase 2, or the next stage of research in humans, which will involve a larger and more diverse group of participants to further evaluate its efficacy in reducing breast cancer incidence.

Breast Cancer Trials’ View on the Research

Breast Cancer Trials, the largest independent clinical trials research group in Australia and New Zealand, is closely monitoring this emerging area of cancer vaccine news with keen interest.

While this vaccine appears promising in pre-clinical and very early trials in humans, previous anti-cancer vaccines in breast cancer have been ineffective. To date, the most successful vaccine to reduce cancer occurrence is the HPV, or human papillomavirus vaccine, which has dramatically reduced the number of cases of cervical as well as head and neck cancers. We look forward to the findings of further quality research into a breast cancer vaccine, which is peer reviewed and independently analysed.

Other Vaccine Research for Breast Cancer

Beyond triple-negative breast cancer, researchers are exploring vaccines for other breast cancer subtypes. For instance, the Moffitt Cancer Center has developed a dendritic cell vaccine targeting HER2-positive, oestrogen receptor-negative breast cancer. In a pilot study, this vaccine, combined with standard chemotherapy, demonstrated both safety and positive response rates, with complete tumour disappearance observed in a notable percentage of .

Additionally, mRNA vaccine platforms, accelerated by COVID-19 vaccine development, are being investigated for their potential in breast cancer treatment, offering a novel approach to stimulate the immune system against cancer cells.

While these developments are promising, it’s important to note that breast cancer vaccines are still in the early stages of clinical trials. Further research is needed to confirm their efficacy and safety across larger, more diverse groups of patients. If subsequent trials are successful, these vaccines could become a pivotal component in breast cancer prevention and treatment strategies, with the hope of transforming the landscape of cancer care in the coming years.

Research into Cancer Vaccines

The development of the human papillomavirus (HPV) vaccine was a landmark achievement in cancer prevention, with Australian researchers playing a pivotal role. Professor Ian Frazer and the late Dr Jian Zhou at the University of Queensland led the groundbreaking research in the 1990s that underpinned the creation of the first HPV vaccine. They developed a method to produce virus-like particles that mimic the HPV virus, triggering a strong immune response without using actual viral DNA. This work formed the basis for the Gardasil and Cervarix vaccines, which protect against the high-risk HPV strains responsible for the majority of cervical cancer cases, as well as several other cancers including throat, anal, and penile cancers.

Australia was also among the first countries to roll out a national HPV vaccination program in 2007, offering the vaccine free to school-aged girls and later extending it to boys. The impact has been profound: rates of HPV infection, cervical abnormalities, and genital warts have dropped significantly, and estimates predict that Australia could become the first country to effectively eliminate cervical cancer by as early as 2035. Australian researchers continue to lead in monitoring vaccine effectiveness, refining public health strategies, and expanding global access to HPV vaccination, particularly in low- and middle-income countries.

The hepatitis B vaccine is another cancer preventing vaccine. It plays a key role in preventing liver cancer caused by chronic hepatitis B infection, which is especially important in communities where the virus is more common. In Australia, the vaccine became part of the National Immunisation Program in 2000, with earlier targeted efforts for high-risk groups such as healthcare workers, Aboriginal and Torres Strait Islander communities, and migrants from countries with high hepatitis B rates. While the vaccine itself was developed internationally in the 1980s, Australian researchers and public health experts have played a significant role in improving vaccine delivery, surveillance, and community engagement.

These examples show how cancer vaccines can become a powerful tool in cancer prevention – adding to the importance of continued research into a vaccine for breast cancer.

Frequently Asked Questions

Is there a vaccine for breast cancer?

No. A breast cancer vaccine has shown encouraging results in early-stage clinical testing, particularly for triple-negative breast cancer. However, further trials are underway.

When will a breast cancer vaccine be available?

There is a breast cancer vaccine currently in early-stage clinical trials. If ongoing research confirms its safety and effectiveness, it could become available in future years. However, widespread availability will depend on further testing and regulatory approvals.

What is a cancer vaccine?

A cancer vaccine helps the immune system recognise and destroy cancer cells, either to prevent cancer from forming or to help treat it in its early stages.

Sources:

SITC 2024 Poster No 7999: Phase 1 Trial of alpha-lactalbumin vaccine in high risk operable triple negative breast cancer (TNBC) and patients at high genetic risk for TNBC.

About Breast Cancer Trials

Breast Cancer Trials is a world-leading research organisation dedicated to advancing breast cancer treatments through groundbreaking clinical trials, ensuring the most accurate and up-to-date information on skin changes and other breast cancer symptoms.

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PALB 2 GENE

Learn about the PALB2 gene, how PALB2 mutations affect breast cancer risk, the importance of PALB2 gene testing, and ongoing research.

The PALB2 (Partner and Localiser of BRCA2) gene plays an important role in maintaining the integrity of our DNA by assisting in its repair. PALB2 is considered a ‘cancer protection’ gene that helps protect against breast, ovarian, prostate and pancreatic cancers. Mutations in this gene can compromise this function, leading to an increased risk of developing breast, ovarian, prostate and pancreatic cancers.

While less common than BRCA1 and BRCA2 mutations, PALB2 mutations are considered moderate-risk factors for breast cancer. Having a good understanding of PALB2 gene is important for individuals with a strong family history of breast cancer. If the gene is detected it can inform cancer preventive measures and early cancer detection strategies.

What is the PALB2 Gene and PALB2 Mutation?

Genomic stability refers to the ability of our cells to maintain the integrity of their DNA, ensuring that cells divide safely and function properly without accumulating mutations that can lead to cancer. The PALB2 gene helps the body make a protein that works with another gene called BRCA2 to repair damaged DNA. Together, the PALB2 and BRCA genes maintain genomic stability by ensuring that DNA is properly repaired when damaged. This is crucial for keeping our cells healthy and preventing the development of cancer.

However, if there’s a mutation in the PALB2 gene, the repair process may not work properly, disrupting the normal mechanisms for DNA repair and increasing the risk of developing cancer, particularly breast cancer. This is because the loss of effective DNA repair compromises genomic stability, allowing potentially harmful mutations to accumulate in the body.

While the BRCA1 and BRCA2 genetic mutations are more widely known, PALB2 mutations can also significantly increase the risk of breast cancer, especially in those with a strong family history. These mutations are relatively uncommon, affecting up to 1.5% of individuals with a family history of breast cancer, but their impact on breast cancer risk can be substantial.

PALB2 mutations are different from BRCA1 and BRCA2 mutations in how they affect DNA repair. Normally, BRCA1 and BRCA2 work together to repair broken DNA. PALB2, on the other hand, interacts with both BRCA1 and BRCA2 to facilitate DNA repair more effectively. When there’s a mutation in PALB2, this process doesn’t work as well, which can increase the risk of developing cancer, including breast cancer.

Although PALB2 mutations don’t carry as high a risk of developing breast cancer as BRCA1 and BRCA2 mutations, they still pose a serious concern that warrants discussion with your doctor regarding appropriate cancer screening and preventative measures.

PALB2 and Breast Cancer Risk

Whilst PALB2 genetic mutations are rare, those who do have this mutation are three times more likely to develop breast cancer versus the those without the PALB2 gene mutation. PALB2 mutations also increase the average risk for ovarian, pancreatic and prostate cancer development.

Studies indicate that women with a PALB2 mutation have a substantially increased risk of developing breast cancer and a 5% risk of developing ovarian cancer over their lifetime and a 2-3% risk of developing pancreatic cancer.

PALB2 Gene Testing

Genetic testing for PALB2 mutations is recommended for individuals with a strong family history of breast cancer.

Consulting with a genetic counsellor is another factor to consider before undergoing testing, to understand the implications of the results. Testing typically involves a blood or saliva sample, and results can be positive, negative, or inconclusive where more evidence may develop in the future.

  • A positive result indicates an increased risk of breast cancer.
  • A negative result suggests no identified mutation and therefore no increased risk of breast cancer relating to this test.
  • Inconclusive results may require further investigation or monitoring as sometimes faulty variations in genes are detected, but the significance of this variation has not been shown to increase the risk of breast cancer to date.

For more information on genetic testing and its benefits, visit Breast Cancer Trials’ Genetic Research page.

Living with a PALB2 Gene Mutation

A positive PALB2 mutation result means an individual has an increased risk of developing breast cancer compared to someone without this mutation. However, this does not mean that everyone with a PALB2 mutation will develop cancer.

Risk management strategies include:

  • Increased Surveillance: Regular mammogram screenings or an MRI scan can help detect breast cancer early. In people with a faulty PALB2 gene, sometimes screening for pancreatic cancer with an MRI or ultrasound is performed. There is no reliable method of screening for ovarian cancer.
  • Preventive Surgeries: Some individuals may opt for mastectomy to reduce risk of breast cancer or surgery to remove the ovaries and fallopian tubes to reduce the chance of getting ovarian cancer.
  • Chemoprevention: Medications like tamoxifen may lower breast cancer risk for patients carrying faulty PALB2, BRCA1 or BRCA2 genes.

These options should be discussed with a medical professional to tailor a prevention plan that aligns with personal health and family history.

Latest Research and Clinical Trials

Breast Cancer Trials is actively involved in research to improve treatment outcomes for individuals. Participation in clinical trials can provide access to new therapies and contribute to advancing medical knowledge.

Understanding Your PALB2 Gene Status and Next Steps

Being aware of a PALB2 gene mutation is an important step in managing breast cancer risk. Individuals with a family history of breast cancer should consider genetic counselling to understand their risk and discuss appropriate preventive measures. For more information on genetic testing visit our research blog on genetic testing for breast cancer.

Breast Cancer Trials has a range of resources to explain the importance of supporting clinical trials, information on open clinical trials as well as the latest research in breast cancer prevention strategies.

Frequently Asked Questions (FAQ)

What does it mean when your PALB2 is positive?

A positive PALB2 result indicates a mutation in the gene, increasing the risk of developing breast cancer and possibly other cancers. It is essential to discuss the implications with a medical professional to determine appropriate monitoring and preventive strategies.

What is the lifetime risk of breast cancer with PALB2?

The lifetime risk of breast cancer for women with a PALB2 mutation varies. Studies suggest that women with a PALB2 mutation have a significantly increased risk of developing breast cancer, with some estimates indicating a lifetime risk of 53%. This risk is higher in younger women and those with a family history of breast cancer.

Sources:

  • https://pmc.ncbi.nlm.nih.gov/articles/PMC3672826/
  • https://www.eviq.org.au/cancer-genetics/adult/risk-management/1609-palb2-risk-management#lifetime-risk-of-cancer-tumour
  • https://www.canceraustralia.gov.au/breast-cancer-risk-factors/risk-factors/rare-moderate-risk-genes
  • https://www.inheritedcancers.org.au/i-want-to-test/genetic-mutations

About Breast Cancer Trials

Breast Cancer Trials is a world-leading research organisation dedicated to advancing breast cancer treatments through groundbreaking clinical trials, ensuring the most accurate and up-to-date information on skin changes and other breast cancer symptoms.

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