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Can a Breast Cyst Turn Out to Be Cancer?

Learn about breast cyst misdiagnosis and the odds of breast cancer.

For many women, the worry that a breast cyst may turn out to be cancer can be overwhelming. However, it’s important to understand that breast cysts are generally non-cancerous and rarely develop into cancer.

While it’s highly unlikely for a breast cyst to become cancerous, breast cancer can sometimes be misdiagnosed as a breast cyst, especially when the lump appears complex or has unusual characteristics when it is scanned using ultrasound or with other types of imaging. This is why it’s crucial to get any unusual lumps checked by a healthcare professional and to follow up with further tests if necessary.

What is a breast cyst?

A breast cyst is a fluid-filled sac that forms in the breast tissue. These cysts are common and usually non-cancerous. Women aged 35-50 are most likely to experience breast cysts, although they can occur at any age.

Breast cysts may feel like smooth, round lumps, and they can be tender, particularly around your menstrual cycle. They’re generally benign, meaning non-cancerous, but it’s still important to get them checked.

A breast cyst may also be completely asymptomatic, and therefore unable to be felt. They are diagnosed with ultrasound or other types of medical imaging.

For those at higher risk of breast cancer without any symptoms (like a lump), tools like iPrevent can be helpful in assessing your personal risk and deciding when to seek screening.

Heidi’s Story

Heidi’s experience began during a routine check-up after a friend was diagnosed with breast cancer in her early 40s. With free mammograms available every two years for women aged 40 and over, it is recommended that women between the ages of 50-74 be proactive and schedule a free mammogram. Women under 40 can also book a mammogram, but it will be a paid service based on a consultation with their doctor.

Her story reinforces the need for vigilance and proactive health checks, particularly when something doesn’t feel right.

Can a cyst in your breast turn into breast cancer?

One of the biggest concerns women have is: Can a cyst in your breast turn into breast cancer? The simple answer is no. Breast cysts are benign and do not turn into breast cancer.

That’s why it’s important to be diligent about checking any breast changes. If you have a lump that you believe is a cyst, especially one that feels different or has grown, it’s essential to have it checked out.  Tools like iPrevent can be helpful in assessing your personal risk and deciding when to seek screening.

While breast cysts are no more likely to turn into breast cancer than any other part of the breast, if you’re at higher risk of developing breast cancer, it’s always a good idea to get an assessment from your doctor.

Can a cyst turn out to be cancer?

A simple cyst will not turn into cancer. If there are unusual features such as those seen in a complex cyst, further tests may be required, and the opinion of a medical professional is highly recommended.

While most breast cysts are benign and not cancerous, it’s understandable to wonder if a cyst can turn out to be cancer. Diagnostic tools like mammograms, ultrasounds and in some cases, biopsies, help doctors determine whether a cyst is benign or cancerous.

It’s important to remember that breast cysts themselves do not turn into cancer, but in certain cases, further testing may be required to rule out breast cancer. If a cyst changes in size, shape, or texture, it should always be re-evaluated by a medical professional.

Can breast cancer be misdiagnosed as a cyst?

Breast cancer can sometimes be misdiagnosed as a cyst, especially when a lump has characteristics that mimic a breast cyst. Complex cysts, which have both fluid and solid components, may look similar to cancerous lumps on imaging tests.

What are the odds of a comples breast cyst being cancerous?

Certain types of breast cancer, such as invasive lobular carcinoma, can sometimes be mistaken for a breast cyst, particularly when the cyst is complex.

Imaging techniques such as mammograms, ultrasounds, and MRIs play an important role in helping to avoid misdiagnosis. While complex breast cysts can raise concerns, it’s important to remember that most of them are benign.

Though complex breast cysts are often non-cancerous, the role of medical research is essential in improving diagnostic accuracy. Breast cancer can sometimes be misdiagnosed as a cyst, especially if the cyst changes in size, shape, or feel, but this is very rare.

Ongoing medical research and advances in imaging technology continue to improve our understanding of such cases. It’s important to follow up with your healthcare provider for appropriate tests and evaluations.

References:

  1. Health.com: Can breast cancer be misdiagnosed as a cyst? (https://www.health.com/condition/breast-cancer/doctors-misdiagnosed-the-lump-in-my-breast-and-it-turned-out-to-be-stage-3-breast-cancer)

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Triple-Positive Breast Cancer

Learn about triple-positive breast cancer, its prognosis, recurrence, treatment options, genetic and hereditary factors, and research updates.

What is triple-positive breast cancer?

Triple-positive breast cancer is a subtype of breast cancer that accounts for about 10% of all breast cancer diagnoses. It is characterised by the presence of three key protein receptors on or within the cancer cells:

  1. Oestrogen receptor (ER)
  2. Progesterone receptor (PR)
  3. Human epidermal growth factor receptor (HER2)

These receptors play a significant role in the growth and behaviour of this subtype of breast cancer. When these proteins are present, the tumour cells may be more sensitive to certain types of treatment.

Characteristics of triple-positive breast cancer receptors

  • Oestrogen receptor (ER) positive: The oestrogen receptor is a protein found on certain breast cancer cells. When oestrogen, a hormone, attaches to this receptor, it signals the cancer cell to grow.
  • Progesterone receptor (PR) positive: The progesterone receptor is another protein found on certain breast cancer cells. The progesterone receptor works with the oestrogen receptor to fuel cancer cell growth.
  • HER2-positive: HER2-positive means the cancer cells have an abnormally high number of HER2 genes, resulting in an overproduction of the HER2 protein on the surface of the cell. This also fuels cancer cell growth.

How it differs from other types of breast cancer

Triple-positive breast cancer is a subtype that has all three key receptors: oestrogen receptors (ER), progesterone receptors (PR), and the HER2 receptors. These proteins can be targeted with treatments to help stop the growth and division of these breast cancer cells. On the other hand, triple-negative breast cancer lacks all three proteins, making it harder to treat.

Additionally, HER2-negative breast cancers do not overexpress the HER2 gene or receptor.

Triple-positive breast cancer treatment

Treatment for triple-positive breast cancer is often a multi-pronged approach, incorporating several types of therapy. These treatments are designed to target the specific receptors and characteristics of the breast cancer, offering the best chance for a favourable outcome.

Standard treatment options

Because triple-positive breast cancer has all three proteins, it can be treated effectively with a range of therapies, including:

  • Hormone therapy: Medications such as tamoxifen or aromatase inhibitors are used to block the action of oestrogen or lower its levels in the body.
  • HER2-targeted therapy: Drugs like trastuzumab (Herceptin) and pertuzumab (Perjeta) specifically target the HER2 receptor, stopping the breast cancer cells from growing.
  • Chemotherapy: Chemotherapy may be used for tumours to reduce the risk of the cancer returning and spreading, or when targeted treatments may not be sufficient.
  • Surgery and radiation therapy: For localised breast cancer, surgery to remove the tumour or affected tissue is a common treatment, often followed by radiation to eliminate and potential breast cancer cells that may remain.

Breast Cancer Trials has made significant contributions to improved treatments for breast cancer, including:

Personalised treatment plans

Every individual’s treatment plan is tailored to their specific diagnosis, which can vary based on the breast cancer’s molecular makeup, breast cancer stage, and overall health of the individual. Personalising treatment ensures the most effective therapies are chosen to manage the disease.

New treatments for triple-positive breast cancer

Research into new treatment options for triple-positive breast cancer is ongoing, with developments in targeted therapies and immunotherapy. These innovations are aimed at making treatments even more effective while reducing side effects.

A study has identified four distinct subtypes of triple-positive breast cancer, each with unique characteristics and potential treatment options. For some patients, combining multiple HER2-targeting drugs works best, while others may benefit from treatments that block both estrogen and HER2, along with additional targeted therapies.

One subtype could respond well to immune-boosting treatments, while another might require drugs that target specific cell pathways within cancer cells.

By continuing to improve the way in which we classify breast cancers on an individual basis, there is increased hope for more tailored, effective treatments to be delivered, improving outcomes for patients with this type of breast cancer.

Learn more about our recent research results:

  • The PATINA clinical trial – This trial explored the benefit of Palbociclib in combination with HER2 targeting agents Trastuzumab and Pertuzumab as well as endocrine therapy in triple-positive breast cancer.
  • The DIAmOND clinical trial – This trial tests if adding two immunotherapy drugs to Herceptin improves outcomes for people with HER2-positive metastatic breast cancer.

Triple-positive breast cancer prognosis

The prognosis for triple-positive breast cancer can be influenced by a range of factors, including age, tumour stage, and how well the breast cancer responds to treatment. Generally, triple-positive breast cancers tend to have a more favourable prognosis compared to other breast cancer types, due to their sensitivity to targeted treatments.

Factors influencing survival outcomes

  • Age: Younger women may face different challenges than older women due to factors like hormone sensitivity and how the body responds to treatments including side effects.
  • Stage of cancer: Increasing cancer stages indicate more advanced disease. Cancer staging is based on both the nature of the primary tumour and the locations of spread, including to nearby lymph glands. While higher stage cancers are more challenging to treat, advances in therapies have greatly improved outcomes.
  • Response to treatment: Triple-positive breast cancer can respond well to targeted treatments like hormone therapy and HER2-targeted therapy. They may also respond well to non-targeted treatment such as chemotherapy. For example, hormone therapy blocks oestrogen or progesterone, HER2-targeted therapy focuses on the HER2 protein, and chemotherapy works by killing rapidly dividing cells. When the cancer responds effectively to these therapies, the prognosis is usually more favourable.

Advancements in survival rates

Ongoing research is helping improve survival outcomes, with some patients being cured of their cancer thanks to advancements in targeted treatments and personalised care.

According to the Australian Institute of Health and Welfare, the five-year survival rate for stage 1 (early) breast cancer is on average 100%, while stage 2 is 95%. For locally advanced breast cancer (known as stage 3 triple-positive breast cancer), the five-year survival rate is 81% and the five-year survival rate for stage 4 or metastatic breast cancer is 32%.

Patients with triple-positive breast cancer who respond well to treatment, have excellent five-year survival rates.

Triple-positive breast cancer recurrence rate and long-term outlook

The recurrence rate of triple-positive breast cancer depends on factors such as treatment response and breast cancer stage.

Long-term follow-up and monitoring are crucial for detecting early signs of recurrence, ensuring timely intervention.

Triple-positive breast cancer survival rate

With targeted therapies, the prognosis for triple-positive breast cancer is generally favourable, though it depends on many factors. An excellent four-year survival rate is achievable for patients with triple-positive breast cancer who respond well to treatment.

According to a study by Naida Howlader, the highest survival rate was observed in women with the HR+/HER2− subtype, with a 92.5% survival rate at four years. This was followed by HR+/HER2+ at 90.3%, and HR−/HER2+ at 82.7%.

Recurrence rate and long-term outlook

Effective treatment reduces the rate of recurrence for triple-positive breast cancer. For many, the first five years post-treatment are critical for long-term survival and those in remission during this time often have a positive outlook.

Factors influencing recurrence

  • Response to targeted therapy: Patients who receive effective targeted therapies are less likely to experience recurrence.
  • Ongoing monitoring: Long-term follow-up is essential to detect any early signs of recurrence, ensuring timely intervention.

Emerging and new treatments

In the field of breast cancer research, continuous advancements in targeted therapies and immunotherapy have shown great promise for treating many cancers. Notably, combination treatments and new HER2-directed therapies as being developed.

There are also HER2-directed antibody-drug conjugates that aim to deliver a chemotherapy or radioisotope payload towards a HER2 expressing cell, offering more personalised and effective options for patients.

Staying informed

For the latest information on new treatments for triple-positive breast cancer, you can refer to reputable sources such as Cancer Australia. This platform provides updates on research, clinical trials, and new therapies.

Latest advancements

Emerging therapies focus on improving the precision of treatments and medicine, while ensuring the treatment plan is tailored to personalised needs. These advancements include:

Breast Cancer Trials’ Role in advancing research

Breast Cancer Trials plays an important role in leading research and testing innovative trials for breast cancer. Their commitment to advancing clinical trials ensures that patients have access to the latest therapies, providing them with hope and improved outcomes.

Genetic and hereditary factors

Genetic factors can influence a person’s risk of developing triple-positive breast cancer. Testing for mutations like BRCA1 and BRCA2 gene mutations can help assess the risk and provide information on personalised prevention strategies.

The role of genetic testing

Genetic testing can guide treatment decisions and risk assessment, especially for patients with a family history of breast cancer. Genetic counselling can help individuals understand their test results and the implications for their health and family.

Support Breast Cancer Trials

Breast Cancer Trials is a leader in advancing breast cancer research by funding crucial clinical trials aimed at testing new treatments and improving patient outcomes. Through this research, Breast Cancer Trials is helping to shape future treatments for triple-positive breast cancer and other subtypes, providing valuable insights that drive progress in the field.

Breast Cancer Trials also offers opportunities for patients to support or participate in this research. Whether you choose to donate or take part in a trial, your involvement helps move research forward so no more lives are cut short by breast cancer.

References:

  1. Nature: Molecular classification of hormone receptor-positive /HER2-positive breast cancer reveals potential neoadjuvant therapeutic strategies (https://www.nature.com/articles/s41392-025-02181-3)
  2. MD Anderson Center: What is triple-positive breast cancer? 6 insights (https://www.mdanderson.org/cancerwise/what-is-triple-positive-breast-cancer–6-insights.h00-159622590.html)
  3. American Assosicaton for Cancer Research: Differences in Breast Cancer Survival by Molecular Subtypes in the United States (https://aacrjournals.org/cebp/article/27/6/619/71580/Differences-in-Breast-Cancer-Survival-by-Molecular)
  4. Cancer Australia: Diagnosis of early breast cancer (https://www.canceraustralia.gov.au/cancer-types/breast-cancer/how-breast-cancer-diagnosed/diagnosis-early-breast-cancer)

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REVOLUTIONISING RADIOTHERAPY: THE ORNATE STUDY AND THE FUTURE OF BREAST CANCER TREATMENT

Dr Gabrielle Metz is a 2025 clinical fellow with Breast Cancer Trials, and her project is looking to refine radiotherapy for breast cancer patients receiving chemotherapy before surgery.

Dr Gabrielle Metz is a radiation oncologist and 2025 clinical fellow with Breast Cancer Trials. Her project, optimising radiotherapy in the neoadjuvant therapy era, also known as ORNATE, aims to refine radiotherapy for breast cancer patients receiving chemotherapy before surgery.

By creating a multicentre database, researchers can explore whether radiation doses can be safely reduced, and assess less invasive lymph node treatments, all while considering patient experiences and outcomes. We spoke with her about the importance of this research and what it means for patients.

“There’s been a current trend to increase the utility of neoadjuvant therapy for breast cancer patients. And most of these patients do end up having adjuvant radiotherapy after their surgery. But all of our data to support radiotherapy for breast cancer patients is pre the neoadjuvant era.”

“We don’t actually have good, robust, long-term data that supports or can guide radiotherapy in this particular patient cohort. There has been some recent data that looks at de-escalating treatment or radiotherapy in patients who have an excellent response to neoadjuvant therapy, but the follow-ups are not long enough.”

“I wanted to create a registry that captures local women, and local trends in practice where we can possibly have one area where all of their data is collected, and analyse their outcomes, particularly in relation to what radiotherapy they received. We then want to look at reducing the amount of radiation that they’re getting.”

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Dr Gabrielle Metz is a 2025 clinical fellow with Breast Cancer Trials, and her project is looking to refine radiotherapy for breast cancer patients receiving chemotherapy before surgery.

Why is it so important to reassess radiation dosing in patients who are responding well to chemotherapy before surgery?

“In terms of radiotherapy, it’s done really well these days with a deep inspiration, breath hold technique using what we call a Volumetric Modulated Arc Therapy (VMAT) technique, where we can really sculpt our radiotherapy away from underlying structures like the lungs and heart, and target mainly towards the area that we need, so the breast and or the lymph nodes.”

“But treating those areas or those lymph node regions does pose a slight increased risk of toxicity to the lungs and the heart. And if we can de-escalate that and reduce the risk, but still get excellent oncological outcomes for our patients, then that’s our overall aim.”

“In the world of oncology, we are always looking to de-escalate treatments safely for our patients. Patients are living longer, our outcomes are better, and we want to reduce the amount of long-term toxicity that they may receive from any treatment that they get.”

How will the multicentre database be structured and what kind of data will it be collecting?

“The database will be structured on REDCap, and we will be collecting data regarding patient demographics, which will be de-identified, but also based on the patient’s treatment in terms of the type of surgery, the type of neoadjuvant therapy, what they received, and what their pathological response was, as well as in particular the radiation details.”

“So how much radiation they received, and what areas have been targeted by the radiation therapist as well as long-term outcomes in terms of cancer recurrence and survival and toxicity.”

What factors are you going to be analysing to determine whether radiation can be reduced for a patient?

“At the moment, the long-term data, doesn’t support de-escalating or reducing radiotherapy. However, in a certain select group, if it’s agreed upon by the MDT, meaning the patient’s surgeon, medical oncologist, radiation oncologist, and other treating physicians, and the patient has been well-informed, we might be able to look at reducing or omitting radiotherapy to certain areas like the axilla in patients who, who that might be suitable for, who have had a very good response.”

How might the findings of this study change current radiotherapy practices for patients?

“I think to change any type of treatment for oncology patients or for any type of patients, we do need to have long-term, robust, randomised evidence, which the registry won’t provide, but it will provide, local data in regard to these women and their delivered treatment and subsequent oncological outcomes that we might be able to extrapolate to a wider audience over time.”

“Having a well-established robust registry for Australian women with breast cancer has endless possibilities in terms of pulling data over time to analyse their outcomes. And that can guide further management in an array of ways, provided it’s done well.”

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

“My hopes for the future are to continue providing research and striving to allow our patients to be undergoing treatment with as little toxicity as possible, and as little impact to their quality of life as possible, while still maintaining excellent oncological outcomes and survival outcomes for our patients.”

“We have been treating women with breast cancer with radiotherapy for decades. And our outcomes have always been excellent. There are very minimal side effects and toxicity to women, undergoing breast radiotherapy, particularly these days. The dose to the hearts and the lungs are almost negligible.”

“And it’s a very safe and well tolerated treatment. In saying that, similar to the way that we’re trying to reduce surgery, we’ve gone from mastectomy, removing the whole breast tissue, to a wide local excision, removing only part of the breast tissue. We are looking if we, if we can do that similarly with radiotherapy.”

“So, radiotherapy will remain a really important part of breast cancer treatment because it’s well tolerated and because our outcomes are excellent. But whether we can do that with reducing the areas that we need to treat, then that would only ever be a good thing for patients.”

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ADCs IN METASTATIC BREAST CANCER: BREAKTHROUGHS, CHALLENGES, AND THE FUTURE OF TARGETED THERAPY

Dr Michelle Li is a 2025 clinical fellow with Breast Cancer Trials, and her project is looking at identifying mechanisms and biomarkers of resistance to ADCs in the treatment of metastatic breast cancer.

Antibody drug conjugates or ADCs are a breakthrough in targeted chemotherapy for metastatic breast cancer. While ADCs like Trastuzumab Deruxtecan, also known as T-DXd, offer new hope for patients, challenges like resistance and various side effects remain and can therefore limit their clinical use.

Dr Michelle Li is a 2025 clinical fellow with Breast Cancer Trials, and her project is looking at identifying mechanisms and biomarkers of resistance to ADCs in the treatment of metastatic breast cancer.

“ADCs have rapidly emerged as a highly effective strategy to treat different subtypes of metastatic breast cancer, particularly in comparison to traditional chemotherapy. So, ADCs consist of three components. First, there’s a monoclonal antibody that targets a tumour associated androgen, like a honing missile going towards a particular base.”

“Then secondly, there’s a cytotoxic payload or what we traditionally think of as chemotherapy. And finally, there’s the linker, which connects the two. I describe it to my patients as ‘Trojan Horse’ chemotherapy.”

“So, the ADCs go right up to the cancer cells, they sneak through the front door, and then they release the chemotherapy once they’re inside to provide maximum targeted damage.”

“Because of its targeted mechanism of action, we can see from the building evidence that ADCs are performing much better than traditional chemotherapy in many settings. And so, we’re trying to bring it earlier into the treatment sequence for our patients with metastatic breast cancer. One ADC that most people might be familiar with or have heard about is Trastuzumab Deruxtecan or T-DXd.”

“And this is an ADC targeted at the HER2-receptor, and it’s been approved for use in Australia for treatment of not only HER2-positive, but also HER2-low metastatic breast cancer. Based on the pivotal results of the DESTINY-Breast04 and DESTINY-Breast03 clinical trials.”

“In quite exciting news, in September of last year, the results of the DESTINY-Breast06 study came out, which showed that for patients with chemotherapy-naive hormone-receptor-positive of HER2-low, or HER2-ultra low metastatic breast cancer, who had progressed on first line endocrine therapy, T-DXd did better than physician’s choice of chemotherapy, particularly in terms of progression-free survival, and the overall survival data is equally awaited.”

“The presence of HER2 on cells acts like a door for our ‘Trojan Horse’ to enter the cancer cell. Traditionally, we’ve thought of cancers as HER2-positive or HER2-negative. However, being HER2-negative doesn’t mean that there’s no HER2-staining of the cell at all. It just means that there’s less of it.”

“So as long as there is staining, so what we refer to as HER2-low or HER2-ultra low, then HER2-negative patients can still benefit from HER2-targeted treatments, as well as of course the HER2-positive patients.”

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Dr Michelle Li is a 2025 clinical fellow with Breast Cancer Trials, and her project is looking at identifying mechanisms and biomarkers of resistance to ADCs in the treatment of metastatic breast cancer.

What are the key mechanisms of resistance to ADCs and how do they impact patient outcomes?

“So, we are very lucky to have access to more than just one ADC for metastatic breast cancer on the Pharmaceutical Benefits Scheme or PBS here in Australia, T-DXd as mentioned earlier, and something else called sacituzumab govitecan or ‘SG’ for patients with triple-negative breast cancer who are also HER2-low.”

“A question we often face in the clinical setting is, which ADC to give first and which ADC to give second. We know that there are emerging mechanisms of resistance. Real world evidence has shown reduced progression-free survival, so reduced efficacy of both ADCs when given sequentially after one another, which is of course disappointing when patients can’t benefit from the full effect of the second ADC, and research is being done into the key mechanisms of resistance.”

“We don’t know what exactly these are yet, but this is a question we were looking to throughout this research project.”

“Work is still ongoing in this field. One theory is that there may be some alterations in the antigen or the ‘door’ to cancer cells after exposure to the first ADC, which makes it more difficult for the second ADC to work the same way.”

What are the most significant real-world toxicities associated with ADCs and how do they differ from clinical trials data?

“On paper, the results from the clinical trials comparing ADCs traditional chemotherapy are practice changing. And certainly, in my own practice I have seen excellent results. However, real world toxicities can be significant, and these can often limit our ability to keep giving it to our patients.”

“So sometimes this means we must stop giving it early due to toxicities and switch to the next treatment. Meaning these patients miss out from getting maximal benefit from these drugs.”

“Ones that I see most commonly in my practice, would be nausea, vomiting, and cachexia or weight loss. It’s interesting because some patients will do just fine and some will do quite terribly with these side effects and require the use of lots of different types of anti-nausea medications.”

“And sometimes that’s not even enough. And so, one thing that we are doing in this clinical fellowship is looking for potential biomarkers such as something called Growth Differentiation Factor-15 or ‘GDF-15’, which might predict those patients that will have these symptoms and see whether we could intervene a bit earlier.”

“One of the other significant real-world toxicities of T-DXd is ILD, so interstitial lung disease, also known as pneumonitis. And this is inflammation of the lungs. This can result in a cough, shortness of breath, and in rare or more serious scenarios, it can cause respiratory distress or death. We saw a small but significant number of patients who experienced this in the early DESTINY-Breast studies. However, as time has gone by, we’ve become more familiar with the drug and we’re getting a lot better at monitoring for this and also managing this.”

“So, outcomes are improving, but of course, this is still something to look out for. So, in the next decade, I’m actually very excited to see where ADCs will go. I think we will see ADCs being brought into the first line setting, particularly for HER2-positive, metastatic breast cancer. And right now, a lot of focus is in the metastatic setting, but I think we’ll see it also being brought into the adjuvant setting.”

“After patients have had curative surgery for their early breast cancer, and in combination with other treatment management strategies such as endocrine therapy for hormone-receptor-positive breast cancer patients; I also think we will see other exciting combinations come through.”

“For example, there are currently trials underway combining ADCs with immunotherapy, particularly in the triple-negative metastatic breast cancer setting, and possibly a combination with other targeted agents as well, such as PARP inhibitors.”

“There are many emerging ADCs in development with other novel targets. So, I’ve talked about HER2 with T-DXd, but there are also other targets that are coming through such as HER3, or Nectin-4B. And some of this is based on inspiration that we’re getting from our other oncology colleagues from other tumor streams.”

“It’s going be invaluable to work with some of the most innovative minds in the field. The next steps in my research project are, of course, number one, getting over there. But number two, setting up some international research protocols. And number three, collecting and examining data from some large pre-existing breast cancer registries at Dana-Farber.”

What are the next steps in your research and how might international collaboration contribute to advancing this field?

“Oncology is a global specialty, and international collaboration is vital to making advances in treating breast cancer. Dana-Farber is one of the world’s leading cancer research institutes and is forging the way with research into not only targeted treatments such as ADCs, but also has led practice-changing research into supportive management and improving quality of life.”

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

“I hope that many of the drugs that we give will be as effective as possible in not only holding the disease where it is, but even improving the disease burden. I think that cure is something obviously that we’re trying to aim for at all times, and you know, that’s the ultimate goal that breast cancer is going to be curable for patients.”

“I think that managing quality of life is going to be important and managing any of the symptoms that come from our treatment, because if the treatment is effective, that’s great, but you’re going to have to be able to have a decent quality of life while you’re undergoing treatment for this, so that you can spend meaningful time with your loved ones.”

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BEYOND THE CLINIC: HOW ePRO IS REVOLUTIONISING METASTATIC BREAST CANCER CARE

Dr Victoria Rayson is a 2025 clinical fellow with Breast Cancer Trials, and we spoke with her about the feasibility benefits and real-world impact of ePRO in the Australian healthcare setting.

Electronic Patient Reported Outcome or ePRO remote monitoring is a game changer for people living with metastatic breast cancer. Many patients on treatments like CDK4/6 inhibitors and anti-HER two therapies remain stable for long periods. Yet, they still have to attend frequent checkups. But what if we could safely monitor their health from home?

ePRO remote monitoring is a validated and practical solution that reduces unnecessary hospital visits, improves patient outcomes, and eases pressure on the healthcare system. Dr Victoria Rayson is a 2025 clinical fellow with Breast Cancer Trials, and we spoke with her about the feasibility benefits and real-world impact of ePRO in the Australian healthcare setting.

“So, I have been very fortunate to be awarded a clinical fellowship with Breast Cancer Trials (BCT). And the project that I’ll be looking at is implementing electronic patient reported outcomes. So electronic digital monitoring in a breast cancer population in a big tertiary hospital. And looking to see whether it improves patient outcomes and also whether there’s any economic benefits from implementing such a service.”

“We are looking to implement a remote digital monitoring for patients with metastatic breast cancer in particular. The number of patients who are living with metastatic breast cancer is growing. We have more patients on treatment for longer periods of time and we want to support them to be able to live well, while on treatment.”

“And part of living well on treatment is trying to reduce the healthcare contact points, so they can continue doing what they want to do. Looking after children, working, traveling. And I do feel that digital remote monitoring, and using patient reported outcomes is a way to do that.”

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We spoke with Dr Victoria Rayson about the feasibility benefits and real-world impact of ePRO in the Australian healthcare setting.

How do you think ePRO remote monitoring could improve patient care compare to traditional in-person reviews?

“Yeah, so look, I mean, breast cancer is a varied disease, so patients are on all sorts of different treatments. For metastatic breast cancer we have some patients who are on oral therapies that are generally very well tolerated but they do sort of still have symptoms and other important issues that do pop up.”

“We also have patients who are on chemotherapies and also some targeted therapies like anti-HER2 therapies. So, patients can be on treatments for a very long period of time and remain quite stable. So, this project in particular is looking at whether we can improve the care of these patients who are on stable treatments.”

“So firstly, by earlier detection of symptoms and addressing these symptoms in a proactive manner rather than a reactive manner. Secondly, in terms of whether we can reduce the healthcare contact points, so perhaps having less frequent clinical reviews. We know that patients who have cancer, there’s an enormous time toxicity in cancer treatment and its sort of focusing on trying to reduce that.”

“We’ve got more patients living on treatment at the moment, and unfortunately, the number of patients who are on treatment is outpacing our workforce growth. We need to work smarter rather than harder on caring for our patients in order to live and continue delivering high-quality care to them.”

“We are very hopeful that we’ll be able to manage patients in the community rather than bringing them into hospital for assessments, you know, for admissions or emergency presentations. So, continuing to allow patients to be at home and doing what they want to do for more time.”

“In terms of barriers to this project, we love seeing our patients who are doing well. And so, one barrier to reducing those contact points is clinician satisfaction. And also, there is a potential impact on the relationship that we do develop with our patients if we’re seeing them less.”

“So, we really need to be careful about developing a system that appreciates that and maintains that human connection and contact, throughout their care.”

“Clinicians addressing the problems that patients raise as being important to them, that’s really key in all of this that we are addressing. So that includes what is important to patients and helping to facilitate communication between patients and clinicians.”

How do you think remote monitoring could impact a patient’s quality of life and their sense of engagement in their own care?

“Patients love to track. Everyone seems to love to track their symptoms, what they’re eating, and what they’re exercising on a daily basis these days. And I’ve certainly seen that in patients in the clinic. I think that designing a system whereby patients and clinicians are tracking similar things, and we are actually looking at the same values, and the same metrics to improve or to enhance sort of patient-centred care, is a great outcome.”

How do you foresee the cost effectiveness of ePRO being evaluated?

“Well, I mean, the cost effectiveness is a challenging thing to measure actually. It’s quite complex. On a basic level, we are looking at whether we can reduce those health service contact points, so nurse service utilisation, clinic visits, hospital presentations and admissions. But, in the future we will look to do a more thorough economic analysis in terms of quality-of-life adjusted years etc.”

“But you know that’s further down the road. You know, the first part of this project is certainly more about implementation of the electronic patient reported outcomes in the clinic.”

In what ways could ePRO remote monitoring reduce the burden on healthcare resrouces and improve system efficiency?

“I think the exciting thing about implementing patient reported outcomes in the clinic is making sure that we’re addressing the things that are important to patients. So, you know, often a patient might feel like, their doctor was running an hour late. They don’t want to bring up that thing that’s going to take 45-minutes to discuss.”

“Or perhaps they’re embarrassed to talk about some of the issues that do affect our patients with breast cancer. So, sexual dysfunction, emotional or psychological needs. And I think that patient reported outcomes really provides clinicians a way of ensuring that we’re addressing those needs that are really important to patients.”

“And hopefully we may actually see that we can do that in a more efficient manner as well. It’s a strategic importance to many organisations involved in cancer care, both in Australia and internationally as well. Patient reported outcomes have been incorporated into many guidelines internationally.”

“And certainly, our local organised cancer organisations are very keen to incorporate patient reported outcomes into routine clinical care. That implementation into routine practice has been varied across Australia and there’s a lot of work to be done on, on making sure that we are doing that.”

“We’ve got good data now across a number of tumour streams for monitoring symptoms and also monitoring health related quality of life.”

“I think this is an exciting project to be involved in. I really do think that it has the potential to create a huge difference on a personal level for patients, whether it be spending less time in hospital, in clinic, on the phone to doctors and more time enjoying their lives, or whether it’s about earlier monitoring of symptoms with improved management of them. I think on a patient level, this project has a huge potential to create positive effects for patients.”

What are the current challenges faced in monitoring patients with metastatic breast cancer on systemic therapies?

“There’s a huge time toxicity involved in cancer care and in particular for women who have metastatic breast cancer who are on treatment for very long periods of time. And are often coming in and out of hospital for appointments has a huge impact on their life, and their ability to get on with doing what they want to do, especially for patients who live further away.”

“So, whether that be, outer metropolitan cities. Or even regionally as well using electronic or digital remote monitoring is really important. It’s an important strategy to try and improve the care of these patients and reduce the amount of time they spend attending their cancer clinics and care.”

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Alcohol and Breast Cancer – Understanding the Risks

Breast cancer and alcohol have long been linked and understanding how alcohol affects breast cancer risk is essential for individuals seeking to make informed lifestyle choices.

Cancer Australia states that alcohol increases the risk of breast cancer in all women and women who drink one standard glass of alcohol per day, have a 7% higher risk of breast cancer, compared to women who never drink alcohol.

The World Health Organization (WHO) advises that there is no safe level of alcohol consumption and the risk of breast cancer increases with each unit of alcohol consumed per day.

Breast Cancer Trials (BCT) conducted a Q&A event on the role and impact of diet and exercise in breast cancer, which included a discussion on the risk factors caused by alcohol.

Does alcohol cause breast cancer?

Alcohol consumption contributes to the development of breast cancer. Cancer Australia estimates that nearly 6% of breast cancer cases each year in Australia are due to alcohol consumption.

Cancer Research UK highlights three main reasons why there is a link between alcohol and breast cancer:

  • When we drink alcohol, it’s broken down into a toxic chemical called acetaldehyde. Acetaldehyde can damage the DNA inside our cells and then prevent this damage from being repaired. This is important because it allows cancer to develop.
  • Alcohol can increase the levels of certain hormones in the body, including oestrogen. We know that high levels of oestrogen can fuel the development of breast cancer, which is an important factor to keep in mind.
  • Alcohol also makes it easier for cells in the mouth and throat to absorb other cancer-causing chemicals. This is probably more important for other cancer types linked to alcohol rather than breast cancer.

There have been many studies that have confirmed the link between alcohol and breast cancer, which are contained in a Cancer Australia report titled ‘Risk factors for breast cancer: A review of the evidence 2018.’ It includes evidence from:

  • The International Agency for Research on Cancer (2012), who concluded that there is ‘sufficient evidence’ that ‘alcohol consumption causes cancer of the breast.’
  • Alcohol and breast cancer risk new findings include a 2018 research project by the World Cancer Research Fund International and the American Institute for Cancer Research shed important light on this connection. The study, which analysed evidence from 62 separate studies, highlights the growing body of research linking alcohol consumption to an increased risk of breast cancer.

Breast Cancer Trials encourages individuals to assess their breast cancer risk using tools like iPrevent.

How much does alcohol increase breast cancer risk?

The connection between alcohol and breast cancer risk is dose-dependent, meaning the more alcohol consumed, the higher the risk of developing breast cancer. Studies indicate that for every additional 10 grams of alcohol (roughly one standard drink) consumed per day, the risk of breast cancer increases by 7% (National Cancer Institute).

Even light drinking, up to one standard drink a day, has been linked to an increased risk of developing breast cancer. It is suggested that there is no safe threshold for alcohol consumption regarding breast cancer risk. It’s essential for individuals to understand that alcohol and breast cancer are strongly connected, and reducing alcohol consumption can help lower this risk.

Research by Turning Point Australia suggests that 1 in 15 breast cancer cases and 1 in 5 breast cancer deaths in Australia are linked to alcohol consumption. For more information on ways to reduce breast cancer risk, including through lifestyle changes, visit our article on  breast cancer prevention.

Which type of breast cancer is linked to alcohol?

Cancer Australia states that alcohol may increase breast cancer risk in a number of ways, including helping cancer-causing molecules to enter cells or damaging cell DNA.

The connection between alcohol and breast cancer is strongest with hormone receptor-positive cancers, such as oestrogen receptor-positive (ER+) cancers. These cancers are influenced by oestrogen, and alcohol can raise oestrogen levels in the body, which may assist these cancers to grow. However, alcohol has also been linked to oestrogen receptor-negative (ER−) breast cancers. This means that even if a cancer isn’t fuelled by oestrogen, alcohol can still increase the breast cancer risk (PubMed Central).

Alcohol and breast cancer risk after menopause

Alcohol consumption can increase the risk of breast cancer for all women.

Alcohol intake is linked to an increased risk of hormone receptor-positive breast cancers, which are more common after menopause. What makes this even more complex is the interaction between oestrogen based hormone replacement therapy (HRT) and alcohol. Some women use HRT to manage menopausal symptoms. Since alcohol can also raise oestrogen, the combination can further increase the risk of developing oestrogen-sensitive breast cancers.

It’s important to understand how these factors can work together when considering your health choices.

For more information on hormone replacement therapy and its potential impact on breast cancer, you can check out the resources provided by Breast Cancer Trials here.

Alcohol and breast cancer recurrence

For women who have had breast cancer, alcohol consumption can affect the risk of cancer returning. Drinking alcohol raises oestrogen levels, which can fuel the growth of oestrogen-sensitive breast cancers. This can increase the chances of recurrence, particularly for women in remission or those with hormone-receptor positive cancers.

It’s important for those in remission to understand how alcohol and breast cancer recurrence are connected. By limiting alcohol intake, individuals can reduce the risk of cancer returning and help maintain the effectiveness of treatments like oestrogen blocking medications.

What patients need to know about drinking alcohol with cancer

If you’re undergoing breast cancer treatment, it’s important to understand how alcohol might affect your treatment and overall health. Alcohol can interact with many cancer medications, in some cases decreasing their effectiveness or increasing side effects such as fatigue, nausea, and liver toxicity. In addition, drinking alcohol while undergoing treatment can weaken your immune system, leaving you more vulnerable to infections – something that’s especially concerning when your body is already under stress from cancer treatment.

If you’re receiving treatment for breast cancer, it’s essential to have a conversation with your oncologist about alcohol consumption. They can help you understand the potential interactions and guide you on how to manage alcohol intake safely during treatment.

The role of Breast Cancer Trials in advancing research

Breast Cancer Trials is at the forefront of advancing treatments for breast cancer, through clinical trials research.  For more than 45 years, we have conducted a national and international clinical trials research program into the treatment, prevention and cure of breast cancer.

All treatments currently used in the clinic in Australia and New Zealand, have undergone a clinical trial to ensure efficiency and safety of patients. Some examples of cancer care milestones that have been achieved through clinical trials research are:

  • Chemotherapy and hormone treatment which are effective for preventing breast cancer recurrence and can save lives.
  • Mammograms which save lives through early detection of disease.
  • Surgical procedures such as lumpectomies which enable surgeons to safely remove the cancer whilst preserving the breast.
  • Drug treatments such as Tamoxifen which can prevent breast cancer in women with an increased risk of developing the disease.
  • Personalised and targeted treatments which enables a specific cancer type to be targeted with a treatment that can improve patient outcomes substantially.

FAQs

Is there cancer risk from alcohol consumption?

Yes, there is a strong link between alcohol and breast cancer and each additional drink increases your likelihood of developing breast cancer. Even light drinking can increase risk.

Research from the Cancer Council Australia indicates that alcohol is a known carcinogen and contributes to the development of various cancers, including breast cancer.

Does quitting drinking reduce breast cancer risk?

Yes, quitting drinking can reduce the risk of breast cancer. Alcohol consumption is causally linked to several cancers, including breast cancer.

No amount of alcohol is entirely risk-free when it comes to cancer, and reducing alcohol intake can help lower this risk. “Even drinking small amounts of alcohol increases the risk of cancer, and the more you drink, the greater the risk” (Cancer Council).

It’s advisable for individuals undergoing treatments to consult with their healthcare providers regarding alcohol consumption. Healthcare providers can offer personalised guidance based on the latest research and the individual’s specific health context.

Sources:

  1. Alcohol and Drug Foundation: Alcohol and breast cancer (https://adf.org.au/insights/alcohol-breast-cancer/)
  2. Cancer Research UK: Alcohol and breast cancer – how big is the risk? (https://news.cancerresearchuk.org/2017/05/25/alcohol-and-breast-cancer-how-big-is-the-risk/)
  3. Cancer Australia report titled “Risk factors for breast cancer: A review of the evidence 2018” (https://www.canceraustralia.gov.au/publications-and-resources/cancer-australia-publications/risk-factors-breast-cancer-review-evidence-2018)
  4. Cancer Council Australia: Alcohol use, awareness and support for policy measures (https://www.cancercouncil.com.au/wp-content/uploads/2023/06/Community-Survey-on-Cancer-Prevention-Alcohol-Short-Report-2022.pdf)
  5. Cancer Council: Alcohol and Cancer (https://www.cancercouncil.com.au/cancer-prevention/alcohol/alcohol-and-cancer)
  6. PubMed Central: Alcohol consumption and breast cancer risk by estrogen receptor status: in a pooled analysis of 20 studies (https://pmc.ncbi.nlm.nih.gov/articles/PMC5005939/)
  7. Turning Point Australia: Do the women you care about know that alcohol can cause breast cancer? (https://www.turningpoint.org.au/about-us/news/reduce-breast-cancer-cases)
  8. National Cancer Institute: Alcohol and Cancer Risk (https://www.cancer.gov/about-cancer/causes-prevention/risk/alcohol/alcohol-fact-sheet)

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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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BREAST CANCER SKIN CHANGES

Skin changes are a breast cancer symptom that can be an early warning sign. Learn what to look for, what causes skin changes, and when to seek help from an expert.

Skin Changes: A Breast Cancer Symptom

Breast cancer can cause visible skin changes due to the underlying tumour affecting the skin, blood vessels and the lymphatic system. It’s important to recognise unusual skin changes and discuss any concerns you may have with your GP.

Common types of breast cancer skin changes

Skin changes that may indicate breast cancer can include: 

  • redness, 
  • dimpling, 
  • thickening of the skin on the breast or underarm, 
  • ulceration, 
  • scaliness, 
  • persistent itching, 
  • nipple retraction, darkening or discoloration, and the 
  • development ofinflammation, open sores or non-healing wounds.

Changes to skin texture in breast cancer

Some of the following skin changes on breast cancer can occur:

  • Skin ulceration and open sores: Advanced breast cancer can invade the skin, causing ulcers or open wounds that may not heal. This is commonly known as a ‘Fungating Breast Tumour. This type of tumour emerges when the cancerous mass breaks through the skin, resulting in the formation of a wound and can lead to bleeding, oozing, or infection.
  • Nipple and areola changes: Cancer can cause the nipple to flatten, retract, or become inverted. Skin around the nipple may become scaly, flaky, or develop a rash, which could indicate Paget’s disease of the breast, a rare type of breast cancer.
  • Skin discoloration: The breast skin may turn red, purplish, or darker due to cancer-related inflammation or blood vessel damage.
  • Firm, raised lumps under the skin: Cancer can form hard, immobile lumps under the skin, sometimes causing an uneven or bumpy surface. Some describe this bumpy surface like orange peel skin on the breast.
  • Itching or burning: Some breast cancers, especially inflammatory breast cancer, can cause persistent itching or irritation similar to an infection, but does not improve with antibiotics.

Examples of breast cancer skin changes

It’s important to see your doctor if you notice any of the below skin changes or breast cancer symptoms:

  • discharge from the nipple, 
  • growth of the veins,
  • pulling on puckering of the skin under the tumor,
  • redness, hot skin, swelling,
  • a recess,
  • resizing of the breast or obvious asymmetry,
  • thinning of the breast skin,
  • retraction of the skin on the chest,
  • destruction of the skin.

breast cancer skin changes pictures. it's important to see your doctor if you notice any changes to the skin on or around your breast.

Additional breast cancer symptoms accompanying skin changes

In addition to skin changes, breast cancer symptoms can include:

  • breast pain, 
  • nipple discharge, 
  • a deep or hard lump, 
  • changes in breast size or shape, 
  • a feeling of heaviness or tightness, 
  • fatigue, 
  • unexplained weight loss, and 
  • bone pain.

Holistic symptom awareness for breast cancer involves understanding the physical, emotional and lifestyle-related changes that might indicate underlying issues. This includes:

  • Body Awareness: Understanding what is ‘normal’ for you in terms of breast shape, size, and how it might fluctuate over time. Also noticing any tenderness, changes in colour or irregular lumps.
  • Mind-Body Connection: Noticing persistent fatigue, stress, or emotional shifts that may signal underlying health concerns.
  • Pain and Sensation Tracking: Paying attention to subtle, persistent discomfort, deep aches, or unexplained heaviness in the breast or body.
  • Energy and Well-Being Monitoring: Recognising unexplained weight loss, decreased energy levels, or prolonged feelings of imbalance.
  • Lymphatic and Circulatory Awareness: Being mindful of swelling in the armpits, neck, or breasts, which could indicate lymph node involvement.
  • Intuitive Health Checks: Trusting gut instincts when something feels “off” and seeking medical attention even in the absence of obvious symptoms.

Monitoring and understanding breast cancer skin changes

Skin changes, such as redness, dimpling, thickening, or ulceration, can be early warning signs of breast cancer. These symptoms may indicate underlying tumour growth or lymphatic blockage, requiring prompt medical attention.

Breast cancer symptoms may also include lumps, nipple discharge, persistent pain, unexplained weight loss, and fatigue. Being aware of subtle changes in the body and discussing these with your GP is essential for early detection.Regular clinical check-ups and mammograms increase the chances of detecting breast cancer early, when it’s most treatable.

Understand your personal breast cancer risk

Using risk assessment tools, like our free iPrevent online tool, can help you understand your personal risk and take preventive action.

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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STRENGTH IN SCIENCE – ELISSA’S PARTICIPATION IN THE OPTIMA CLINICAL TRIAL

We spoke with mum of two, Elissa Simms about her breast cancer diagnosis, navigating breast cancer and her participation on the OPTIMA clinical trial.

Elissa Simms is a mum of two daughters, 20-year-old Brynn and 17-year-old Ella, who enjoys spending time with her family and walking her dogs Kalua and Lottie. In March 2024, Elissa noticed a strange sensation in her breast. At the time, she was seeing her GP frequently, as she was dealing with a frozen shoulder and thought the two might be connected.

Unfortunately, after being sent for an ultrasound, she was diagnosed with breast cancer.  We spoke with Elissa about her diagnosis, navigating breast cancer, and her participation on the OPTIMA clinical trial.

“So, I was actually not working at the time because I had my frozen shoulder, which was affecting my left shoulder, so I was on a return-to-work plan, and I just had this very unusual feeling in my chest and I was on fortnightly visits with my GP.”

“I mentioned it to him, and he sent me for an ultrasound straight away. I did ask if it could be related to my shoulder, which was told was a very firm ‘no’. I went for an ultrasound within the week and I was back in the doctor’s office the day after I had my ultrasound to be told that it was breast cancer.”

“So yeah, I suppose it was a bit surreal at first. That was early March 2024. And I didn’t really tell my family at that stage. I’ve got two older brothers, and I told my eldest brother because I got him to come to the initial appointment with the surgeon with me. And I told my middle brother as well, but I didn’t tell my children or my mum at the time.”

“Mum had been through a journey from 2018 to 2021 with dad, with a cancer diagnosis. So, I didn’t want her to be worried by it. So, it was a shock in one way, but I also thought very positively of it. I had a friend that I used to work with, and she’d had breast cancer. So, I’d sort of been along the journey with her, and she was telling me what had gone on etc.”

“I didn’t know to the full extent, and she didn’t tell me the full extent about her treatment. She could give me enough information where I could remain positive. And seeing her well after all her treatment, helped me to remain positive.”

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We spoke with mum of two, Elissa Simms about her breast cancer diagnosis, navigating breast cancer and her participation on the OPTIMA clinical trial.

How did you tell your family and friends about your breast cancer diagnosis?

“I told my children first and I tried to make it as positive as possible. I did say to them I’ll have to have surgery, but they also know my friend Sheree, and I said to them, there’s so many good things coming with breast cancer research nowadays, like improved survival rate etc.”

“So, I sort of said to them, Sheree’s gone really well in her treatment and she’s doing well at the moment. And also, my oldest daughter, Bryn, her best friend’s mum also had breast cancer. And so, they were able to relate to those people and see that they no longer have breast cancer, or have been treated for breast cancer and are living happy, normal lives now.”

“I did tell them that I hadn’t told Nan yet and they knew my Mum sort of frets a bit. So, they came down with me to tell Mum. So, I sort of went into her house and said, I’ve got something to tell you.  And I just said to her I’ve had a few appointments lately and I’ve actually been diagnosed with breast cancer, and I need to have an operation.”

“I told her when that would be a week or two after I got my diagnosis. And surprisingly she was totally different to what I thought she’d be. She was very positive, which I didn’t expect at all. And so, she came to my appointments and supported me in that way.”

“The toughest thing, I think, is not knowing what treatment would be like. My dad had chemotherapy, but he’d been able to work all the way through it. And he was always really stoic. So, I sort of had that impression that that’s how my journey would be.”

What was your biggest fear when you were diagnosed with breast cancer?

“Probably being unwell and needing help with my daughters. So, even though the eldest one is 20, the youngest one has a few issues. So, I was just a bit worried about them coping with it in the long term and seeing me go through the treatment. And, yeah, if I wasn’t well, which I wasn’t to start with, then how that would impact them.”

Where are you currently up to with your treatment?

“So, in terms of my treatment, I had my surgery in mid-March 2024. The margins for the lump in my breast weren’t clear, so I had to go and have more surgery. And I had lymph nodes taken out from under my arm as well. Then when I was talking to the surgeon about the second surgery, she mentioned the OPTIMA trial and said that I’d be a good candidate for that. She then referred me on to Dr Nick Zdenkowski to speak to him about that trial.”

Why did you decide to participate in the OPTIMA clinical trial?

“I wasn’t keen to have chemotherapy because it had affected my dad’s heart and that’s what he eventually passed away from, from heart failure. So, that was my main concern about chemotherapy, was having heart issues like he did.”

“His heart was perfectly fine before he had chemotherapy, in saying that he was in his 70s as well, but he was a very fit man and still working full time. So that was my greatest fear. So, when I sat down and spoke with Dr Zdenkowski, he told me what the trial was and how it worked.”

“So, you could be in either stage one or stage two. It was all randomised. He told me that not all women needed to have chemotherapy. There is a belief that not all women may need chemotherapy. And that this trial is looking at whether some women could have a better outcome if they didn’t have to have the chemotherapy and the side effects of it.”

“What I was thinking about when making my decision about the OPTIMA trial was, if I didn’t have the chemotherapy, what that would mean. Even though I was worried about having the chemotherapy.  The notion that it was a trial, which I’m very open to, also made me wonder how effective the treatment was.”

“And I was also curious how they randomised the people going into the trial. I spoke to my mum a fair bit about it, and my eldest daughter a fair bit about it, about what my thoughts were, the fear of if I didn’t have chemotherapy, what would happen? Or how good it would be not to have to have chemotherapy after what happened with my dad. But I decided to go ahead and left it to see where I’d be randomised at.”

“If the trial is going to be successful, and if it’s going to be a new way forward for women, or even my children when they get to an older age, of having that choice to not have to go through chemotherapy, and have all the adverse effects from that, I think it’s a great benefit.”

Why do you think clinical trials research is so important?

“For me, it was about thinking of the future generations and what they could benefit from it. With my dad going through chemotherapy, his main thing was the heart issue after he’d had the drugs. So, he still went to work, he still worked full time. He still was quite active, and it never affected him with the side effects of nausea or bone pain.”

“He did get neuropathy, which did affect his feet. And he ended up with lymphoedema from the chemotherapy. I hid all the side effects, and I was very unwell on the chemotherapy to start with, and I ended up having my journey shortened with what they call the dense dose.”

“I lost 10 kilos in six weeks, so a decision was made, and I was very nauseated, couldn’t get out of bed. I was lethargic, unable to sort of get out of bed and have a shower most days.”

“It was a horrible thing, and I was just lucky enough that my medical oncologist listened to me and saw how much it had affected me, and we went down a different pathway and sort of changed my plan with the chemotherapy.”

If there was the opportunity to remove our reduce the need for chemotherapy in the future, how important do you think that is for patients?

“I think it’s very important. If you to try and maintain a good body weight whilst you’re undergoing chemotherapy and to eat normally and have high protein meals. Having the choice to do the OPTIMA trial and being able to maintain their health in that way, I think there’d be a better outcome for people, or women in particular, to not have to have the chemotherapy and not have to have that worry of what the adverse effects are.”

“I think that women probably should think about clinical trials because there has been so many great things that have come out of previous trials and if they don’t sort of put themselves out there to try something, then we’re not going to know how good it could be or how it sort of increases the quality of life.”

“I think a lot of people might be scared to go with clinical trials because they don’t understand the process, or they don’t understand that it’s all already been rigorously looked into and has to be approved before the trial even gets off the table. And I think that scares a lot of people and they just think they want to go with the old way of how things are done.”

What are your hopes for the future?

“Just getting on with life, getting back to work, getting out there a bit more, being able to enjoy spending times with friends and family, not being so tired, and I’ve actually got a cruise booked with my friend that had breast cancer previously, so I’m looking forward to going on that adventure with her and celebrating that we’ve both got through this disease.”

“So, I’ve had chemotherapy, I’ve had radiation therapy, and I’m now on another clinical trial called CAMBRIA-2, which is an endocrine therapy. So, I’m now participating in that, which is another one that Dr Zdenkowski is doing. And I was randomised to take the drug on that one, which instead of just inhibiting the oestrogen, getting into your cells and causing more breast cancer, it degrades the oestrogen. So, I’m looking forward to a better outcome with that.”

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THE IMPORTANCE OF SUPPORTING CLINICAL TRIALS RESEARCH

We spoke with mum and primary school teacher, Tamara Dawes, about her diagnosis, navigating breast cancer, and the importance of supporting clinical trials research.

Tamara Dawes is a mum and primary school teacher living in New South Wales who enjoys living in the country, going to the beach and spending time with her family and their dog. Around Easter time in 2021, Tamara had been dealing with some eczema and because of this had been performing frequent self-examinations when she noticed a lump in her breast.

She booked in with her GP who sent her for a mammogram, biopsy and ultrasound and two days later was diagnosed with breast cancer. We spoke with Tamara about her shock diagnosis, navigating breast cancer with a young family and the importance of supporting breast cancer clinical trials research.

“Looking back, I could probably only say that life before breast cancer was good. I had a nice place to work at a school that I used to teach at, lovely family, my friends, I liked living in the country. So, looking back now, I’d say it was good and there’s not many things that I could say were too bad.”

“Around Easter time in 2021, I did have a little bit of eczema and because of that, I had been keeping up with my self-checks and so I found the lump myself and being Easter I had to wait until the holiday was over to get in to see my GP. But once I went to see her, she did a really good job of sending me off the next day to get the mammogram, biopsy, ultrasound, and that moved fast, and I was diagnosed within two days of seeing the GP.”

“And that’s when things started to slow down a little bit. I had to wait for surgery, I met lots of doctors. The time after my diagnosis I had surgery first and then I had chemotherapy and then I had radiation. So, yeah, I had all of those in a straightforward way. Now I’m taking hormone medication for a few years.”

“I thought it was five years and then I found out this year that I hadn’t listened properly and it’s 10 years. So, I’ll just keep taking that as long as they say to. And that’s the maintenance that I’m doing now.”

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We spoke with mum and primary school teacher, Tamara Dawes, about her diagnosis, navigating breast cancer, and the importance of supporting clinical trials research.

Did you know much about breast cancer when you were diagnosed?

“I didn’t know a lot. I guess everyone is aware and you hear people have it. You don’t realise how much information there is to take in and I’m the kind of person who does like to research things a lot. I’ve really tried not to just Google things. I used a tool called ‘My Journey’, but I try to just get the reputable information and learn everything I could.”

“Every time I had new appointments and spoke to the breast care nurse a few times, she was really helpful at filling in the blanks because often you feel like when you’re seeing a specialist they don’t have time for every single little thing and to fill you in on all the context, so it was great having someone who could give me all the information.”

“And then throughout my treatment I did try to learn as much as I could about what the treatments were and what kind of cancer I had. And I would read my pathology reports and things like that. And I know that’s not for everyone and there’s been times where I didn’t want lots of information, but I’d say overall I’ve tried to educate myself because I realised what I thought I knew about it was superficial and there’s just so much more to learn.”

How did you navigate telling your family?

“I remember telling my family. I can’t remember when I told my husband. I think it was just on the phone as soon as I left the doctors. I sat down and told the girls and tried to reassure them, even though I didn’t know what was going to happen. I just wanted to let them know that I felt like I was in good hands. And then telling my mum was sort of a bigger deal because I thought she would be more likely to think about the negative outcome.”

“So, my sister went with me to talk to mum together and that was fine. So, I guess everybody was supportive and I didn’t have to worry about people getting upset or giving me advice or letting out emotions like that. Generally, people were supportive, so it was fine.”

“I would say probably the most intimidating part of the treatment was beginning. The whole process and the first thing I had to start off with was the surgery, which was quite a big surgery because it was a bilateral mastectomy with the immediate reconstruction.”

When you started your treatment, what was that like?

“So, they were doing a lot of things, and it took a long time, and I had a very adverse reaction to all of the anesthetic and painkillers and all of that. So that was a bit dramatic at the start because it really hit me like a ton of bricks. And then with subsequent treatments, I think the first round of chemotherapy was the most difficult because they just give you a standard dose and see how it affects you.”

“And it was hard. But then the second time around they adjusted it and its sort of better, but I would say chemotherapy is probably the worst thing I’ve ever had to do in my life. And yeah, I’m glad I made it to the end. And I completely sympathize with people who choose not to because it’s so hard, it really is that hard.”

Why did you decide to participate in a clinical trial?

“I went to see my oncologist for my yearly checkup, and he said I would qualify or be suitable for this trial that he was aware of, and I felt like I could trust him. He’s been a really good doctor so I said I’m happy to find out about it and participate in it and hopefully all the data they get from me can help strengthen their trial and the medication that they’re trying to get approved or find out more about.”

“So, it was straightforward. I said, okay, and now I’m just doing it. There’s been so many advancements already, and you can tell from the stories of people who had different medications, or older versions of that, that it’s already improved. But I do think that, myself and a lot of other women are still really struggling with the side effects of treatment.”

“And though the medications may be better, they’re still a long way from being perfect. So, I think more research is just going to improve everyone’s quality of life. I’ve had a lot of side effects from all my treatment and the medication as well.”

And so, I assume that’s one of the goals they’re looking to achieve through trials is finding medication that’s less harsh. And I think there’s plenty of room for improvement, though lots has already been done for it.”

“Even though I’m taking the medication I was on before, I’m not taking the new medication, I still think all of that data is necessary and important. So, it doesn’t matter what part of the trial you’re in, it can really help someone.”

What would you say to someone who was thinking of participating in a clinical trial?

“For me, it’s been quite a positive process. As I said before, I like to have lots of information and find out about a lot of things. And it’s been great to have more consistent access to my doctor and the nurses in the trial. It’s really sort of confronting when they say we’ll see you in 12 months and it feels like it’s too long until you can see them again.”

“So being in a trial makes me feel like I’m being monitored a little bit more closely and if I have a question or a worry then it can be answered a lot quicker than that 12-month period. So, I think that’s just one sort of advantage that I’ve seen, but overall, I think it’s important.”

What are your hopes for the future?

“In terms of the research and treatment, I believe, and I hope that things will continue to improve and patients in the future will have a lot of those side effects and issues mitigated in ways that, you know, we haven’t seen yet.”

“For myself, I look forward to every year, just getting one year further down the track. And I love to celebrate with my family and my friends and just, I guess, take things one step at a time. It’s funny because you want to have a long future, but at the same time you just look at it in smaller increments.”

“Because if you’re only going to be here for a shorter time, and that could be from anything happening, you might as well make the most of it, enjoy it, travel and eat all the food and enjoy being around your family and friends.”

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NAVIGATING BREAST CANCER AND PARTICIPATING IN THE CAMBRIA-2 CLINICAL TRIAL

We spoke with mum of three, Wendy Rolls, about her diagnosis, navigating breast cancer, and her participation in the CAMBRIA-2 clinical trial.

Wendy Rolls is a wife and mum of three daughters from New South Wales who enjoys golf, quilting, scrapbooking and spending time with her family. In October 2023, Wendy found a small lump in her breast, and after undergoing a number of tests, including an ultrasound, needle biopsy, and core biopsy, she was diagnosed with breast cancer.

We spoke with Wendy about her diagnosis, navigating breast cancer, and her participation in the CAMBRIA-2 clinical trial.

“I had my regularly scheduled mammogram in June 2023, and it came back clear, which was good. And then we were on holidays in New Zealand in October of that year and I found a lump in my breast, just a small one.”

“I thought at the time ‘that doesn’t seem like it should be there’. When I got back from holidays, I went to the doctors and he suggested that I had an ultrasound and got it checked out, but the ultrasound came back as inconclusive. They didn’t sort of think it presented typically as a cancer.”

“So, they said that they would monitor it for three months, and then after that I wasn’t too perturbed about it. I thought that it might just be a papilloma or something like that. So, in the February of 2024 I had another ultrasound and it had grown a bit by that time, but they still didn’t think it looked like a cancer.”

“I had a needle biopsy, which came back clear. But at this time the doctor was suspicious that there might be something else going on there and decided that it has to come out whether it’s cancerous or not. So, then I got referred to the Breast Cancer Centre over at Gateshead and had a core biopsy. And that came back showing that it was cancerous, I think as Grade 2 and about 20 millimeters in length.”

“This was now around Easter time, so not knowing the results from the biopsy at this time was a bit daunting, but my husband kept me busy by going on walks. We went out for dinner and things like that. So, then the Tuesday after Easter was when I found out that it was cancer, and that it needed to come out and so I didn’t have to wait long. It was on the Friday of that week that the surgery was booked.”

“Then when the pathology came back from that, they said that there was still some cancer left in the margins, so the following Friday I had to go back for surgery so they could take a bit more than what they’d first taken. And then from the pathology of that, they found out that it was a Grade 3 cancer, and that it also hadn’t gone into any of the lymph nodes, but it had gone out of the cells.”

“Then they referred me to an Oncologist so that I could see what the next step would be. And he said that because it’s Grade 3, that they normally would do chemotherapy on that. My Oncologist was good in that he explained to me that with having surgery, the percentage of me being alive in 7 years was higher than without surgery.”

“It was something like 60% with chemotherapy, and then an additional 2.5% with radiation, and hormone treatment would be another 5%. But he was saying that they often treat this type of cancer with chemotherapy, but my scores were quite low. So, he wasn’t convinced that I needed to have chemotherapy.”

“So, he offered me a test where you could send your tumour to America and have a genomic test done on it. And that tells you the probability of it recurring, which helps determine if chemotherapy is appropriate. So, mine came back with a low score, which meant that I had a low percentage of cancer recurrence, and also a low percentage of the chemotherapy having a benefit for me.”

Listen to the Podcast

We spoke with mum of three, Wendy Rolls, about her diagnosis, navigating breast cancer, and her participation in the CAMBRIA-2 clinical trial.

“I didn’t really want to have the chemotherapy if I didn’t have to have it, because I’ve had friends who’ve had breast cancer before, and chemotherapy is quite a harrowing experience for some people. But if I had to have it, I would have had it. In the end, the next step was just to have radiation.”

“So, while all of this was happening, I also had my daughter’s wedding, which was on the 5th of October. At the time I was thinking if I have to have chemotherapy, will the time to recover and heal from that as well as the surgery be too close to the wedding?”

“So, it wasn’t a very good feeling thinking that would be what would be happening all at once. But in the end, it worked out the best way. I did also have two holidays booked, so I had to cancel one of the holidays because it was right when I had my surgery. But I was able to go overseas with my sister in May because I was still healing, so my treating team said it was still within the time frame that they like to have before they treat you.”

“They were very good, the team, because while I was away, they found out the results from the genomic tests in America. And so, my oncologist knew that it was low, and that he wouldn’t be recommending chemotherapy. So, he then contacted the radiographer, and they’d set my appointment up in time for me coming back into Australia.”

How did you hear about the clinical trial and why did you choose to participate in this research?

“My Oncologist had spoken to me about it once I had returned from overseas. He had said that I was a good candidate for the trial with early detection, and he gave me the information on the study, and he said that I should read about it and see if I was interested in joining it. I also had met the coordinating nurse, and she gave me more information and was talking about the way they keep an eye on you and have regular checkups.”

“So, I read it all and I thought that it was a good thing to do because it would be helping me, as well as helping other women who have breast cancer or might not even know they’ve got breast cancer yet., It’s great that researchers are investigating new drugs and seeing if they produce good results, with not so many side effects.”

“I suppose with the trial it’s a good thing that they’re monitoring you to see which side effects are affecting people. So, you are randomised to the trial, which means you’ll either be on the trial drug and the current standard of treatment. I’m not on the trial drug, I’m on anastrozole, but they still monitor you the same as if you’re on the trial drug.”

Why do you think this research is so important for breast cancer patients?

“Well, I think they need to always be looking for other medications because it’s not like one drug will definitely work for all breast cancers. I’ve spoken to other women who’ve used even the one I’m on and they felt differently taking it, and in the end, they couldn’t use it. They needed to go on a different treatment drug.”

“So even the drugs that are available now, they’re just not for everyone. In some cases, you can discuss alternative options with your Oncologist, and you might be able to find one with fewer side effects.”

“This trial is looking at the current standard treatment drug that they have been used on metastasised cancers, and assessing the benefit it has with early detection cancers, to see if it would keep the cancer from recurring. So, I think that’s a bonus.”

“And with being on the trial, they monitor you more, you have more tests done, and they make sure that everything’s going along the way that they want it to.”

What are your hopes for the future?

“Well, I hope to be healthy and be around in my 80s or maybe 90s. Seeing your grandkids grow up and still traveling. It was a bit of a like a shock. I like to travel, and I also like doing all of my craft and being with the family, so you all of a sudden start thinking, well, that could be taken away me so what can I do about it?”

“So, I think acting quickly and not putting your head in the sand is what I would say to people. And to know your body, and always be checking and if something feels a bit different, no one will say anything if you go and get checked. That’s what they want you to do.”

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Breast Cancer Ultrasound: Understanding It’s Role in Detection

Learn about the role of breast ultrasound in breast cancer diagnosis, its benefits, and how it can help contribute to early detection and treatment of breast cancer.

What is a Breast Cancer Ultrasound?

A breast ultrasound is a non-invasive imaging procedure that uses high-frequency sound waves to create detailed images of the breast tissue. In contrast, a mammogram uses X-rays and is associated with a very small amount of radiation, and an MRI (magnetic resonance imaging) uses powerful magnets and radio waves but no radiation. Each breast imaging modality creates a different picture of the breast and has unique strengths and limitations.

A breast ultrasound plays an important role in breast cancer detection, particularly for those with dense breast tissue or other risk factors, by providing additional information beyond what mammograms can offer.

Breast ultrasound can be used as a standalone test to investigate a breast symptom, like a lump or change to the nipple, or as a follow up test to investigate a suspicious area on a mammogram. It can also be used to guide a biopsy of an area of concern.

Breast cancer screening involves a mammogram of the breast which has the best evidence for early detection of breast cancer for women over the age of 50. This may lead to an ultrasound or in certain circumstances other breast imaging like an MRI. Screening is vital for early detection, especially for those with a family history of breast cancer or other risk factors. Early detection greatly improves the chances of successful treatment.

One of the main advantages of ultrasound is that it is painless, widely available, and does not use ionising radiation. By providing real-time images of breast tissue, it is useful for distinguishing between suspicious solid masses which may be cancerous and fluid-filled cysts which are often harmless.

Can an Ultrasound Detect Breast Cancer?

A breast ultrasound is an important tool for detecting breast cancer. It can provide information about a mass, and the presence of suspicious features may indicate the need for a biopsy.  It is very effective at distinguishing between suspicious solid masses which may be cancerous, and fluid-filled cysts which are often harmless. However, it is not always able to detect microcalcifications (certain patterns of tiny white small specks) visible on mammograms which can be very early signs of cancer.

An ultrasound is often used in combination with a mammography because the two imaging techniques complement each other and increase the accuracy of breast cancer diagnosis. It is especially valuable in women with dense breast tissue or when investigating lumps.

Ultrasounds cannot definitively diagnose breast cancer but can provide essential clues about a mass’ characteristics, such as whether it is solid or cystic. A biopsy is always required to confirm the final diagnosis of breast cancer.

Ultrasounds can also be used to detect whether there are abnormal lymph nodes under the arm in patients with a confirmed breast cancer diagnosis. Whilst this is also not definitive, it is important in determining the breast cancer stage and treatment strategies.

How Does an Ultrasound Detect Breast Cancer?

An ultrasound is helpful in assessing abnormalities in breast tissue. It provides insights into the size, shape, and texture of potential abnormalities, helping doctors determine the need for further testing. Sometimes it can help rule out cancer by offering an alternative diagnosis, avoiding the need for a biopsy.

What Does Breast Cancer Look Like on an Ultrasound?

Using sound waves, an ultrasound can provide information about the features of a breast mass that may not be apparent on a mammogram, especially in denser breast tissue. Breast cancer on ultrasound may appear as an irregularly shaped mass with uneven borders. It can also be echogenic, meaning it reflects more of the sound waves than normal tissue, invade surrounding tissues and have increased blood supply. These characteristics often stand out compared to benign conditions.

Types of Breast Ultrasound and Their Role in Breast Cancer Diagnosis

Different types of ultrasounds are used in breast cancer diagnosis, each serving a specific purpose.

  • Diagnostic ultrasound: Used to investigate a breast problem like a lump or nipple changes, or suspicious findings from a mammogram.
  • Ultrasound-guided biopsy: Used to direct a needle into a suspicious area of the breast to collect a small sample for laboratory testing. This is useful if the suspicious area cannot be felt or seen on a mammogram.
  • 3D ultrasound: Provides three-dimensional images of the breast to improve the detection of small tumours.

How Ultrasound Supports Early Detection of Breast Cancer

When a breast ultrasound is coupled with screening mammography it assists in the early detection of breast cancer. The presence of suspicious features on ultrasound make the diagnosis of breast cancer possible which means that a biopsy may be required. Ultrasound is particularly useful to provide additional information about a mass over what is found on a mammogram, especially for women with dense breast tissue where mammograms might not show all abnormalities.

Ultrasound guided biopsies also play an important role in the early detection of breast cancer as a biopsy is required to diagnose breast cancer. This is particularly useful when the breast mass requiring biopsy cannot be felt or seen on a mammogram.

Breast MRI vs. Ultrasound: What’s the Difference?

Both breast MRI (magnetic resonance imaging) and ultrasound are important imaging tests used in the detection of breast cancer, but they serve different purposes and have unique advantages.

Breast MRI:

Breast MRI is highly accurate and can detect even very small breast cancers, making it especially useful for women with dense breast tissue or those at elevated breast cancer risk. It uses powerful magnets and radio waves to create detailed images of the breast tissue and is particularly effective at identifying abnormalities that may not be visible on mammograms or ultrasounds. However, breast MRI is more expensive, less widely available, and may not be necessary for everyone.

Breast ultrasound:

Ultrasound, on the other hand, is more accessible and cost-effective, and is excellent at distinguishing between solid masses which may be cancerous and fluid-filled cysts which are usually harmless. While an ultrasound may not detect as many small breast cancers as MRI, it is a valuable tool for evaluating breast lumps and guiding biopsies.

The decision between breast MRI and ultrasound often depends on factors such as breast density, personal and family history, and overall risk of breast cancer. In some cases, these imaging tests are used together to provide the most comprehensive assessment of breast health and make a treatment plan.

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Frequently Asked Questions (FAQ)

What makes a breast lump suspicious on ultrasound?

On an ultrasound, certain characteristics of a breast mass can raise suspicion for breast cancer. Radiologists evaluate these features to decide if further testing, such as a biopsy, is necessary. These can include:

  • Shape: Suspicious masses are often an irregular shape, whereas benign lumps are usually round or oval.
  • Margins: Cancerous masses may have jagged or ill-defined edges, while benign lumps tend to have smooth and well-defined borders.
  • Echogenicity: Cancerous masses may appear hypoechoic (darker) compared to surrounding tissue and may display shadowing on the ultrasound.
  • Growth Patterns: Cancerous masses may invade surrounding tissues, altering their appearance on ultrasound. Benign lumps typically remain confined.
  • Vascularity: Doppler ultrasound may show increased blood flow in or around a suspicious mass, indicating possible malignancy.

This process helps assess whether a breast cancer lump on ultrasound may need further testing or biopsy.

What does breast cancer look like on an ultrasound?

Breast cancer on an ultrasound may appear as an irregular, hypoechoic mass with spiculated or ill-defined margins. These features differ from benign lumps, which tend to be smooth and well-defined. Malignant tumours may also invade nearby tissue and show increased vascularity.

While ultrasound is not used for routine screening, it is often helpful in investigating breast lumps and reaching a diagnosis in women with dense breast tissue.

What can a breast ultrasound detect?

A breast ultrasound can detect:

  • Solid masses (which may be cancerous)
  • Fluid-filled cysts (usually benign)
  • Changes in lymph nodes
  • The exact location of an abnormality for biopsy

It’s especially helpful when a lump cannot be clearly identified through a mammogram.

Early stage breast cancer ultrasound: What role does it play?

While an ultrasound is not used for screening or detecting early-stage breast cancer on its own, it plays a critical role in investigating suspicious findings. When paired with mammography, ultrasound can offer additional detail about a mass and guide biopsy, particularly in dense breast tissue.

Sources:

  • https://www.breastscreen.nsw.gov.au/breast-cancer-and-screening/signs-and-symptoms-of-breast-cancer/
  • https://www.cancer.nsw.gov.au/prevention-and-screening/screening-and-early-detection/breast-cancer-screening/why-breast-screening-is-important

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BRIDGING SCIENCE AND EXPERIENCE: THE IMPACT OF THE CONSUMER ADVISORY PANEL

We spoke with CAP Chair, Leslie Gilham, as well as members, Merryn Carter, Naveena Nekkalapudi, and Laura McCambridge, as they discuss the CAP of Breast Cancer Trials, their role, and what you can expect from being involved.

The Breast Cancer Trials Board of Directors established the Consumer Advisory Panel, also known as CAP in 1998, because it recognised the value and importance of consumer input to the planning and conduct of clinical trials research. CAP members bring their own unique experience of breast cancer and a true commitment to the clinical trials research process.

We spoke with our CAP Chair, Leslie Gilham, as well as three of our members, Merryn Carter, Naveena Nekkalapudi, and Laura McCambridge, as they discuss the Consumer Advisory Panel of Breast Cancer Trials, their role, and what you can expect from being involved.

“I’m Leslie Gilham, Chair of the Breast Cancer Trials Consumer Advisory Panel. The Consumer Advisory Panel is a group of women with a lived experience of breast cancer, with most of us being participants on clinical trials. And our role as the Consumer Advisory Panel is to represent patients and trial participants in advocating for them in clinical trial design and processes.”

Listen to the Podcast

We spoke with our CAP Chair, Leslie Gilham, as well as three of our members, Merryn Carter, Naveena Nekkalapudi, and Laura McCambridge, as they discuss the Consumer Advisory Panel of Breast Cancer Trials, their role, and what you can expect from being involved. 

Why were you interested in getting involved in research or advocacy as a consumer?

“As someone with a lived experience, I participated in a clinical trial myself, and I guess that stoked my interest in research. And so, I wanted to become part of the Consumer Advisory Panel to give patients a voice and ensure better outcomes for future generations.”

“I’m Merryn Carter, a member of the Breast Cancer Trials Consumer Advisory Panel, and my breast cancer was diagnosed in 2010 as what’s known as HER2-positive early breast cancer. And luckily it was treatable by a drug called Trastuzumab, which is proving to be incredibly effective for a lot of women.”

“So here I am speaking to you in 2024, 14 years later. Where without that drug, that would have been very unlikely. And I guess that’s one of the main reasons I decided it would be great to give back by helping Breast Cancer Trials from the consumer perspective and encouraging people to do drug trials.”

“HER2-positive is only one of  type of breast cancer, so we need lots more research. There are still too many women dying from breast cancer, so that’s why I was really motivated to join this group because I’m the beneficiary of previous research and the invention of that drug.”

What does someone need to do to be involved in the Breast Cancer Trials Consumer Advisory Panel?

“To become a member of CAP you don’t necessarily have to have been participating in a clinical trial. It’s more that you’ve had a lived experience of breast cancer, and you are an advocate for patients,” said Leslie.

“It’s about representing the broader community and all of those diagnosed with breast cancer and not necessarily your personal situation. But it’s a really important role that allows us to work with researchers to design and run clinical trials that are going to improve outcomes for patients. So, if they’re interested in joining the Consumer Advisory Panel, they could either talk to their surgeon or oncologist.”

“They can go on the Breast Cancer Trials website and there’s a page on there that has the details about the Consumer Advisory Panel, but also how you go about joining the panel or applying to join the panel. And it’s an expression of interest process. So, if you do go on that platform, it will tell you about the next steps on how to become involved.”

“My name’s Laura McCambridge. I was diagnosed with breast cancer when I was 31, three years ago. I had a lumpectomy, I underwent chemotherapy, and I also had a preventative mastectomy in the end. And now I’m about a quarter of the way through my 10-year hormone therapy treatment.”

“So, I was a patient on a clinical trial as a part of my breast cancer treatment. I was on the Breast MRI Evaluation Trial that was run by Breast Cancer Trials, the organisation. And as a part of that I found out that there was an organisation that was running breast cancer trials in Australia and New Zealand. And I wanted to be a part of that.”

“So, I received an email from Breast Cancer Trials asking if people would like to be involved in a fundraising, content creation part and I put my hand up for that and I did some video and photos with the Communications Department, which was amazing. And as a part of that, I also then got the opportunity to be on the panel at one of the Breast Cancer Trials Q&A and attend one of their Annual Scientific Meetings.”

“At that meeting, I met Leslie, who is the lead of the Consumer Advisory Panel. And once I’d met her and I found out a little bit more about what CAP does, I wanted to be a part of it. I put my hand up at that point.”

Why is it so important to have consumer involvement at all stages of the clinical trials process?

“Because if the trials don’t recruit sufficient participants, then they can’t prove whether the drug is effective or not. So, in order to be attractive enough for someone to take the risk with an unproven drug, you have to think from the participant’s perspective and that’s our role as consumers, is to think of things like how often might you have to visit the clinic? What are the likely side effects of the drugs that you’re putting in your body? How often will I be monitored?” Merryn said.

“So, it’s important to have the patient perspective in there when the trial’s being designed, so that we can reassure potential participants that they’ll be really well looked after while they’re on the trial, and they won’t be asked to do things that are too onerous.”

“Hi, my name is Naveena Nekkalapudi, and I was diagnosed with triple negative breast cancer on Christmas Eve 2014. I then underwent six months of treatment, which included a lumpectomy and axillary clearance, which is basically surgery with the removal of the lymph nodes in the armpit and six months of chemotherapy, which included Doxorubicin and Taxol followed by six weeks of radiation therapy.”

“It is important for Breast Cancer Trials to have consumer voices as a part of organisation. As we provide insight into the patient’s lived experience, we also can provide a fresh set of eyes when we come to designing the trial, but then also implementing the trial.”

“For example, we can explain to researchers that a certain exclusion is unfair or not necessary, or had they thought about including that cohort of people because they would benefit from the trial, or we can simplify the language of the trial documents so that it’s easier for patients to digest, especially when they’ve had a cancer diagnosis and therefore are struggling physically, but more importantly, mentally and emotionally.”

“It’s so important to have patients involved in the protocol development of a trial right from the very beginning, because patients are the only ones who are able to say, I would love to join this trial, or there’s no way that I would take part in that. To give feedback on the areas that would be interesting to a patient, and other areas that would just be an absolute no go,” said Laura.

“So, doctors and researchers know so much about cancer and about treatment, but they can’t put a hat on and just become a patient. They need the patient’s voice in the protocol development right through to the time that you’re presenting the study to patients.”

What do you enjoy most about being on Breast Cancer Trials Consumer Advisory Panel?

“I love being on the Consumer Advisory Panel because I get to work with likeminded consumers, but also likeminded researchers. To provide cutting edge treatments or trials that are necessary for people to live longer or have better outcomes or have better quality of life. And it makes me happy to see the impact I’ve made on a patient’s life and a person who’s followed me on the breast cancer journey, if I can call it that,” Naveena said.

“It makes me feel happy that I’ve made it through, and even if it’s a 1% difference, it’s improved their life by that much.”

“Yeah, so I’ve always been involved in research as a part of my working life. I have a research master’s, so I’ve always kind of been in the field. I was working as a study coordinator at a few different hospitals, but in neurology, specifically stroke and dementia trials,” Laura said.

“And then after I had my breast cancer diagnosis, I thought maybe I can combine this lived experience with my professional experience in research. And CAP was kind of the perfect way to join those together.”

When someone is diagnosed with cancer and they often receive a lot of information about their diagnosis, has this been reviewed by someone on a Consumer Advisory Panel?

“When a patient is presented information about a Breast Cancer Trials clinical trial, every document would have been reviewed by a Consumer Advisory Panel member or members, and they would have been simplified and made digestible as much as is possible. We also recommend that researchers consider alternative ways of sharing the information,” Naveena said.

“So not just written, but perhaps in a video or in a diagram so that people find it easier to digest when they have different ways of absorbing information.”

“The word consumer as it relates to Breast Cancer Trials and the Consumer Advisory Panel itself refers to patient advocates. So those with lived experience who are representing trial participants.”

What types of roles can consumers have in research?

“Within clinical trials research and in particular Breast Cancer Trials, some of the roles that our Consumer Advisory Panel members are involved in, we review protocols, and informed consent documents to ensure that patients are the focus of that clinical trial.”

“We are also involved in grant applications for clinical trials, steering committees for the running of trials, fundraising for the group and marketing as well.”

“So once a year we attend the Breast Cancer Trials Annual Scientific Meeting where we sit through three intense days of the most erudite scientific medical research that kind of makes your brain hurt as someone who’s not from a scientific background,” Merryn said.

“But it’s really stimulating and, you know, we’re a group of people who talk through what it means for us as consumers all the time. So, we’re very supportive and the researchers are incredibly open to us and, you know, there’s no such thing as a dumb question.”

“We feel very supported. We can ask outside of the sessions if we want to, so that’s an amazing experience. But then in between times, I guess it’s almost like our real role, is when they’ve got documents about trials that are coming up, like the very beginning where a concept paper is developed with the idea for a trial.”

“And we look at things like how we think it might run. The drug we’re thinking of investigating, or it doesn’t have to be a drug, it could be surgery or radiology or whatever other kind of intervention, but from the very beginning they’ll do a concept.”

“We will then say what we think about that concept from the consumer perspective. And then the big, long documents, the protocols for the trial are developed, that’s when they design the trial, and you get all the details of how the trial would run.”

“They can be long, really intense scientific documents. So, it takes quite a bit of time. It’s incredibly rewarding to be part of the process, but it does take time and effort to understand as much as you can from a lay perspective. You’re not expected to be a medical scientist.”

“So, reading through these documents from a perspective of constantly thinking what would this mean to the participant? What would this mean to the patient? And then we give our feedback to the researcher and hopefully we can sometimes, and we do, see that they tweak the trial so that it’s kinder to the participants.”

Can all ages be involved in the Consumer Advisory Panel?

“Yes, absolutely. As a young woman, I felt welcomed into the group. We are lucky that we have a varying age difference between, between all of us because we’re all coming from different stages of life and we all have kind of different passion projects and different interests, which is good,” Laura said.

“So as a young woman, I am interested in the fertility aspects of research trials that we run.  So, I definitely felt not only welcomed, but like drawn in, and encouraged to join.”

What would you say to someone who is thinking about participating in the Breast Cancer Trials Consumer Advisory Panel?

“I’d say they’re joining a great bunch of women who really enjoy working together. That if you enjoy using your brain and learning new things, and if you’re curious about the science behind drugs and treatments used for breast cancer, then it’s a really rewarding thing to do,” Merryn said.

“If you’re interested in joining CAP, I would say absolutely go for it and get some more information to see if it’s the right fit for you. We have an online expression of interest form that you can fill in, which we can then review. And then the process from there is that we have a Team’s interview or a video conference interview to get to know you a little bit more and so that you can ask questions about what we do at CAP,” Laura said.

“You don’t need a referral from a medical professional. You can just reach out on your own, but if your oncologist is involved with Breast Cancer Trials, that’s also a really great way to find out more information about the organisation and about CAP as a group.”

“It’s a lovely group of people who take part. I love being able to use my brain and deeply think about things that might be important for a patient taking part in a trial. I love being able to use my knowledge about what makes language accessible, so that when we’re writing the consent forms or when we’re doing the videos for the e-consent modules, I can really use my skills to make the language accessible so that people can understand it.”

“The Consumer Advisory Panel welcomes applications from anyone who’s had a lived experience of breast cancer in Australia and New Zealand. And the more the merrier, and the more diverse the better. Because while we’re all likeminded in our aim to do good for people, we also bring our different perspectives. Which is what I like, because I get to learn from my other fellow consumers,” Naveena said.

“It would be great to get even more diversity in there so that we all get to learn about how other people’s lived experience can have an impact on their lives.”

If you experienced someone saying that trial participants are ‘guinea pigs’ what would you say in response?

“So, I think that from the media and from news cycles, when you hear the term clinical trial, you think that you’re going on a new intervention versus nothing, versus a placebo. But for the huge majority of the time, what you’re doing is that taking the gold standard treatment that already exists and then putting another option, which could be even better than the gold standard,” Laura said.

“So, you’re not getting the drug or nothing. You’re getting what already exists, or something that could be even better. So, there is an element of that being experimental, but you’re not a guinea pig, it’s so well thought out, it’s so research based from the very beginning, and it’s also being tracked over time so carefully.”

“So, they don’t just create the trial, recruit patients and then leave it be. Like, there’s all these interim analyses of safety to make sure that the new intervention is safe and it’s not at a detriment to the patient.”

“So, you’re not being a guinea pig. I hate that term. I feel like you’re lucky to be on a clinical trial because you’re getting an opportunity that other people don’t get, rather than just throwing your body on the line and not getting any benefit,” she said.

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