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LIFE AS A BREAST CANCER SURVIVOR DURING COVID-19

Although life may feel like it is beginning to return to normal for some, there are pockets of our society who still need to remain extra vigilant and cannot relax back into this new normal.

Rebecca’s Experience During the COVID-19 Pandemic

Although life may feel like it is beginning to return to normal for some with COVID-19 restrictions beginning to lift, there are pockets of our society who still need to remain extra vigilant and cannot relax back into this new normal. This includes those who are immunocompromised, like breast cancer patients.

Rebecca Angus is a member of the Breast Cancer Trials Consumer Advisory Panel (CAP).

CAP members use their experience of breast cancer to provide input and insight into Breast Cancer Trials research, ensuring a consumer perspective is provided from the very early planning stage of clinical trials.

In this Breast Cancer Trials blog, Rebecca writes about why it is important to still remain safe and socially distant for those who are immunocompromised, how her breast cancer experience has prepared her for COVID-19 and what it is like to work in healthcare during this time.

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It has been two years since my diagnosis and the commencement of breast cancer treatment. Regardless of the COVID-19 pandemic, we are celebrating my breast cancer survival and life.

Today I am at home, practising social distancing and watching my son play in the backyard. This morning I went to visit my general practitioner for my flu vaccine and monthly Zoladex injection. My annual scans are due in a few weeks; managing breast cancer does not stop during the COVID-19 pandemic.

I am currently working in healthcare as a full-time Podiatrist and making most of my precious moments at home with my family. Trying to stay healthy and exercising regularly. My health is still and always will be at the forefront of my mind.

For those with chronic illness, COVID-19 impacts on our daily lives. I honestly cannot imagine how challenging it would be at present for those newly diagnosed with breast cancer, enduring chemotherapy, immunotherapy, or participating in clinical trials.

COVID-19 has reminded me of my health vulnerabilities. While no longer undergoing chemotherapy, radiation treatment, episodes of hospitalisation and neutropenia, I still do not want to test the waters with contracting COVID-19. This human body has lived through an enormous amount of treatment!

Working in an essential healthcare service during COVID-19 pandemic means I have face to face exposure to patients on a routine basis. This will continue until my oncologist instructs me that it is unsafe to do so.

A breast cancer diagnosis and treatments have adverse financial effects on patients. At present, I am trying to balance my health with my financial responsibilities. Hoping that it will not affect our financial stability as it has previously done in the past.

My social distancing measures include driving to work and avoiding public transport. My son is dropped off to his early learning centre at the door. I bring my lunch from home and do not leave the office until I go home. At work, we have been minimising our contact with patients when appropriate to do so. As soon as the family arrives home, we shower and change our clothes.

Practising infection control and hand hygiene has always been a big part of my work life and staying healthy during breast cancer treatment. Cleaning and disinfecting surfaces at home and work regularly. At work, I wear N95 masks, eye protection, gloves and gown. Washing my hands regularly and encouraging anyone I come into contact with to wash their hands.

This includes washing hands with soap and water more frequently, and for at least 20 seconds.

It is better to use soap and water at home and use alcohol-based hand sanitizer when you are mobile. It is also important to moisturise your skin daily, especially those women on breast cancer treatment or who have been affected by lymphoedema. I also avoid touching my face at work, in public or at home.

Breast cancer patients and those on chemotherapy practice social distancing and isolation as a standard precaution. So, adjusting to the COVID -19 pandemic may be a relatively smooth transition. My family have been adopting some of our breast cancer treatment rituals again.

When attending appointments, we call the facility ahead to make sure that we are practising social distancing or opt for telehealth consultations when appropriate. We do not wait in doctors waiting rooms.

COVID-19 has separated individuals priorities in life. While the general public was stockpiling toilet paper, flour and rice at the shops. The first thought that came to me was: How is this going to impact my healthcare and the life-saving medication, which assists in preventing re-occurrence of breast cancer? Will I be able to continue to access the Neratinib medication program?

Breast cancer has certainly put what is essential in life into perspective!

At home, we have been trying to keep space between ourselves and others, limiting our exposure to people and avoid any unnecessary travel. All our food, clothing and other supplies are purchased online and delivered to home. Otherwise, my husband picks up supplies.

Self-isolation and social distancing can get lonely at times, especially when your undergoing chemotherapy.

Your family and friends are the foundation of your support network, and with the social distancing rules, it can make it difficult at times. Trying to find fun ways to interact with your loved ones is essential.

Social media, facetime or zoom chat your family and friends. Make sure you discuss your mental health concerns with your doctor, psychologist or access free online evidence-based tools such as Finding My Way or BCNA My Journey.

Keep your routine as best as possible, including getting exposure to plenty of fresh air and exercise. You can also access prescribed exercise physiology and physiotherapy apps. These can be designed by your health professional to be completed at home, under a Medicare plan. For further information, discuss this with your general practitioner.

Yoga and meditation DVD’s/ online resources were tools that I used during my treatment to assist in managing my mental health. I plan to continue to practise them during COVID-19.

Breast Cancer Trials needs to continue their life-saving work and clinical trials into breast cancer throughout COVID-19. I am sending love and support to those involved in clinical trials and oncology care. The true health care heroes are our researchers, doctors and nurses.

To the trial participants and their families. My thoughts are with you; please stay safe. Lastly, please stay home for breast cancer patients and their families.

Our research is still continuing during COVID-19.

You can help support our life-saving research during this difficult time here.

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Ms Rebecca Angus

Rebecca Angus is a Senior Podiatrist working in Sydney and is a member of the Breast Cancer Trials Consumer Advisory Panel. She was diagnosed with breast cancer in 2018.

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COVID-19: HOW OUR MEDICAL PROFESSIONALS RESPONDED

We reached out to some of our researchers to ask how their workplaces have changed and how they have had to adapt to the new COVID-19 environment.

Adapting to the ‘New Normal’ of COVID-19

While the rate of COVID-19 infections in Australia and New Zealand is in decline, cancer patients and those who are immune-compromised are being cautioned to continue following social distancing recommendations.

When COVID-19 began to spread across Australia and New Zealand, front line health workers mobilised to ensure their patients would be safe and still receive the best possible care.

Breast Cancer Trials has approximately 800 members, working across more than 100 institutions in Australia and New Zealand. Our membership base is made up of various health professionals including oncologists, surgeons, pathologists, radiation oncologists, nurses and clinical trial coordinators, all of which are involved in breast cancer patient treatment and care.

We reached out to some of our members to ask how their workplaces have changed and how they have had to adapt to the new COVID-19 environment.

Professor Fran Boyle – Medical Oncologist and Scientific Advisory Committee Member

Professor Fran Boyle AM is a Medical Oncologist at North Sydney’s Mater Hospital, where she is the Director of the Patricia Ritchie Centre for Cancer Care and Research, and Professor of Medical Oncology at the University of Sydney. Professor Boyle has been involved in breast cancer clinical trials research for the past 20 years. She has chaired the Breast Cancer Trials (BCT) Board and is a current member of the BCT Scientific Advisory Committee.

She says that they have been sure to communicate all changes to their patients.

“We are reassuring our patients that oncology services around the country will continue during COVID as it is considered an essential service.”

“Surgery, radiotherapy and chemotherapy services have made some adjustments, to ensure greater safety for patients and staff and our team meetings are continuing, mostly on videoconference, sometimes with hilarious results, as we master the technology in our PJ’s.”

Professor Boyle said they have been able to utilise telehealth more for the benefit of their patients.

“The major advance has been the ability to use telemedicine for routine office visits, and this has been appreciated by most patients. If there is a need for a physical examination, or test results to be given, then a shorter clinic visit can be scheduled.”

She also shared advice of patients with low immunity and those who are taking endocrine therapy.

“The message to patients with low immunity (recent chemotherapy or radiotherapy, or metastatic disease) is to have a flu vaccine early, and to try to stay at home. You can ask your team for a letter to allow your carers to shop for you. Exercise is still important, so try to walk or use an exercise bike at home. Also ask your team what to do if you get a fever, as this may be different from usual.”

“Patients on adjuvant endocrine therapy, for example Tamoxifen or Aromatase inhibitors, are not immune suppressed and should take the precautions recommended for the general community. This includes having a flu vaccine this year. Your annual mammogram may be delayed till later in the year, which will be fine. Of course, if you notice something new, alert your team for an earlier appointment.”

Dr Janine Lombard – Medical Oncologist and Scientific Advisory Committee Member

Dr Janine Lombard is a medical oncologist who specialises in breast and gynaecological cancers. She has a busy clinical practice and also shares her expertise as a Breast Cancer Trials Scientific Advisory Committee member.

She said her practice began preparing for COVID-19 once the news began to spread around the world and the first cases were confirmed in Australia.

“There was the news from China about the virus, which was more and more worrying, then came the first cases in Australia and the news about the health system on its knees in Italy.”

“Infection disease specialists were also talking about 1000’s of patients needing ventilation in Australia by April.

“With this came fear; mostly the fear for our vulnerable oncology patients, many coming weekly for either chemotherapy or radiation – already with compromised immunity from cancer and now staring down the barrel of a pandemic.”

Like Professor Boyle, Dr Lombard said they are thankful for Telehealth.

“Up until now we used telehealth sparingly for patients who live remotely. But now, it has become our saviour.”

“It has allowed us to keep so many patients in the safety of their homes while we try and navigate a strange new world of not being able to reach out physically and comfort a distressed patient or family member.”

She said her hospital immediately set up a triage for acutely unwell oncology patients.

“We have set up a rapid access area to keep our oncology patients out of the Emergency Department if they do not have respiratory symptoms. This has been staffed by our experienced nursing staff who have stepped up, no questions asked.”

She also said that there is now a ‘backup’ oncologist on call at all times in case the rostered oncologist contracts COVID-19 or has to self-isolate. She has praised her team for their dedication to upskilling in this time and said they are practicing social distancing amongst themselves whenever possible.

“Every face to face meeting has been changed to some electronic format. We sit in our offices and brainstorm with our colleagues one office door away. It is such a strange world but mostly it works.”

Dr Lombard said it is a difficult period but everyone in the field has stepped up for their patients.

“There is a sense of purpose and collegiality not felt for a long time.”

Vicki Sproule – Clinical Trial Coordinator for GenesisCare

Ms Vicki Sproule is a Breast Cancer Trials member and a clinical trial coordinator at Genesis Care Australia.

Ms Sproule has been an active member for many years, after working alongside one of our Founders, Professor John Forbes AM.

She said it’s been a challenging period, but oncology care must continue.

“It goes without saying that COVID-19 has thrown the world a curve ball. Healthcare systems internationally have been significantly challenged as they reprioritise efforts and resources to respond to the surge in COVID-19 patients.”

“As challenging as this period is for both healthcare providers and communities, cancer continues and so must vital oncology care.”

She said their centres have made changes to how they deliver this care and have built on the infection control procedures already in place.

“We have also adapted how we manage oncology trials.”

“We have introduced a telehealth option for suitable patients participating in clinical trials. If a patient does need to attend one of our centres, they can feel safe and confident that we are maintaining the best standards to reduce risk,” she said.

“This includes screening all patients and staff, reducing the time a patient needs to spend in the centre and the number of people in our centres at one time, additional cleaning and access to personal protective equipment as needed.”

Ms Sproule said thankfully these measures have meant they are able to keep many of their trials open during COVID-19.

“In fact one of the trials coordinated by Breast Cancer Trials is an ideal trial to be recruiting to during this period.”

“The primary aim of the EXPERT trial is to see whether a genomic test of breast cancer tissue can be used to identify women who can safely avoid radiation therapy after breast cancer surgery.”

Ms Sproule said she is impressed by the support everyone is providing to each other in this time and is thankful for the research community that is still working on finding new and better treatments for breast cancer.

“As a research partner we have been well supported by trial sponsors to identify ways to safely manage patients on a trial, while also being able to continue to collect the important information needed to meet the trial outcomes.”

“The need for clinical trials that lead to new treatments that help people live longer, will continue to play an important role in cancer care and healthcare more broadly.”

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HOW OUR RESEARCHERS ARE RESPONDING TO COVID-19

Professor Fran Boyle AM and Associate Professor Nicholas Wilcken discuss how their institutions and teams have responded to the COVID-19 pandemic. They discuss how some changes have been positive, how their patients have reacted to this new environment, and give a BCT research update.

Responding To COVID-19

In this Breast Cancer Trials (BCT) members podcast, Professor Fran Boyle AM and Associate Professor Nicholas Wilcken discuss how those involved in breast cancer care and treatment have responded to the COVID-19 pandemic.

Professor Fran Boyle is a Medical Oncologist at North Sydney’s Mater Hospital, where she is the Director of the Patricia Ritchie Centre for Cancer Care and Research, and Professor of Medical Oncology at the University of Sydney. Professor Boyle has been involved in breast cancer clinical trials research for the past 20 years. She has chaired the BCT Board and is a current member of the BCT Scientific Advisory Committee.

Associate Professor Nicholas Wilcken is the Director of Medical Oncology at the Crown Princess Mary Cancer Centre Westmead, Senior Staff Specialist at Nepean Hospital and Associate Professor of Medicine at the University of Sydney. Associate Professor Wilcken was elected to the BCT Board of Directors in July 2016. He was the Chair of the BCT’s Scientific Advisory Committee from 2011 to March 2017.

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A Podcast about breast cancer and COVID-19 between Professor Fran Boyle and Associate Professor Nicholas Wilcken.

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Professor Fran Boyle

Professor Fran Boyle is a Medical Oncologist at North Sydney’s Mater Hospital, where she is the Director of the Patricia Ritchie Centre for Cancer Care and Research, and Professor of Medical Oncology at the University of Sydney.

Associate Professor Nicholas Wilcken

Associate Professor Nicholas Wilcken is the Director of Medical Oncology at the Crown Princess Mary Cancer Centre Westmead, Senior Staff Specialist at Nepean Hospital and Associate Professor of Medicine at the University of Sydney.

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FUTURE OF GENETICS IN BREAST CANCER?

Cancer Geneticist Associate Professor Judy Kirk explains the role of genetics in breast cancer care and research, and how this information will help inform future treatments.

The Importance Of Genetics In Breast Cancer

An individual’s genetic makeup is becoming increasingly important in how certain breast cancers are treated.

New treatments and prevention strategies are now being tailored to specific genetic make ups, especially those who have a known genetic mutation.

Associate Professor Judy Kirk is a Cancer Geneticist at the Familiar Cancer Service at Westmead Hospital.

She says there are two ways genetics will become more important in cancer genetic testing and personalising treatment.

“When we talk about genetic testing, sometimes we are talking about testing of the tumour to find the genetic changes in the tumour that have caused that cancer and to target the therapy for that cancer.”

“So that’s quite different to a fault in the gene that’s in every single cell in the blood that causes a higher risk of cancer.”

“Our understanding of both of those aspects of genetic testing is changing over time.”

She said what researchers know about how genetics affects cancer risk and treatment, has come a long way over the past couple of decades.

“We know when our clinic first started in 1994, we didn’t really know much.”

“We knew about two genes only at that point,” she said.

“We had very rudimentary testing, but it cost an awful lot of money and it took a long time to do.”

“Now the sequencing of these genes is much cheaper. So, it’s more available.”
She said now more funding and time is spent on interpreting the data found through testing.

“The more testing we do, the more we find changes in genes that are called unclassified variance.”

“They’re small changes that probably mean nothing but we’re not sure about that yet,” she said.

“The more genes you test the more you find and you can find in some studies, where they’ve tested lots of different genes in women with breast cancer, up to a third will have slight variations in genes that may or may not mean something.”

“So, there’s still uncertainty about some aspects of genetic testing. There’s a lot left to learn.”

Listen to the podcast

Cancer Geneticist Associate Professor Judy Kirk explains the role of genetics in breast cancer research and how this information will help inform future treatments.

Genetic Testing For Targeted Therapies

Associate Professor Kirk said that the information researchers already know about genetic abnormalities and mutations has helped to inform treatments in those with known BRCA1 and BRCA2 gene mutations.

“It’s already been shown that individuals who have a germline mutation or mutation in every single cell, a mutation in BRCA1 or BRCA2, certainly respond well to specific PARP inhibitors.”

“Now that also could be found by testing their tumour. Some people don’t have a mistake in every single cell, but there is a mistake in their tumour.”

“So, I think it’s going to be tumour testing that drives the targeted therapies.”

“So, I think it’s going to be tumour testing that drives the targeted therapies.”

Breast Cancer Trials currently has a clinical trial open for the prevention of breast cancer in women who have the BRCA-1 gene mutation.

You can find out more about BRCA-P and sign up for the BRCA-P mailing list here.

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Associate Professor Judy Kirk

Associate Professor Judy Kirk is a Cancer Geneticist at the Familiar Cancer Service at Westmead Hospital.

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EARLY BREAST CANCER & THE SMALL CLINICAL TRIAL

Dr Stuart McIntosh explains the SMALL clinical trial and research investigating early breast cancer treatments.

Early-Stage Breast Cancer

Early breast cancer is confined to either the breast and may or may not have spread to lymph nodes in the breast and armpit.

It is one of the more favourable forms of the disease as treatments are more effective when the cancer is confined to the breast.

It’s a research area for Dr Stuart McIntosh, who is a specialist breast surgeon at Belfast City Hospital and a Clinical Senior Lecturer in Surgical Oncology at Queen’s University in Belfast.

Dr McIntosh said the treatment for early breast cancer is evolving.

“Conventionally the standard treatment has always been surgery first followed by other systemic whole-body treatments like chemotherapy, hormone tablet therapy – perhaps Herceptin, as well as radiotherapy to the breast.”

“However, I would say that is beginning to change as we understand more about the biology of breast cancer and as we get better at working out which patients are going to respond to which treatments.”

“So, I think increasingly we’re seeing medical treatments like chemotherapy being used first up and the surgery then being adapted or personalised to the least amount of surgery required for good control of the cancer.”

Dr McIntosh said thanks to clinical trials research, treatments for early breast cancer have improved drastically.

“I think if you look back at the surgical treatment for early breast cancer, it has been evolving for the last 150 years and continues to evolve from the radical mastectomy, to modified radical mastectomy, breast conserving surgery and we are increasingly looking at de-escalating.”

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Dr Stuart McIntosh explains what the standard treatment is for early breast cancer and what clinical trials are currently investigating early breast cancer treatments.

The SMALL Breast Cancer Clinical Trial

Dr Stuart McIntosh is the lead investigator of a breast cancer clinical trial called SMALL.

“The SMALL trial is looking at women who’ve got a small screen detected invasive breast cancer,” he said.

“We know that a proportion of these are, what we call, overdiagnoses.”

“They’re cancers that would have never been found if a woman hadn’t attended a screening mammogram and they would have gone through life and died of something else unrelated.”

He said these overdiagnosis present a significant problem.

“These cancers have always been treated by surgery to remove the cancer and to do a sentinel lymph node biopsy, to look at the lymph glands.”

“But that’s a general anaesthetic, a hospital admission, there are complications, there are risks.”

The SMALL trial is comparing this standard treatment with a minimally invasive removal of the tumour.

“We will use either ultrasound or x-ray to guide a needle with an attached vacuum, which will effectively suck the tumour out and the radiologist doing the procedure will be able to tell us whether the they think it’s fully removed or not,” said Dr McIntosh.

“That’s done under local anaesthetic, it takes about 30 to 40 minutes in the x-ray department and clearly has significant benefits for the patient over having an operation if it can be done safely and effectively.”

“But before we introduce it into clinical practice, we obviously need to do a trial to provide good quality evidence that that is the case.”

Currently this trial is not available in Australia and New Zealand.

However, Dr McIntosh said he hopes to collaborate with Breast Cancer Trials researchers to bring the trial to patients in Australian and New Zealand.

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Dr Stuart McIntosh

Dr Stuart McIntosh is a specialist breast surgeon at Belfast City Hospital and a Clinical Senior Lecturer in Surgical Oncology at Queen’s University in Belfast.

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MAKING METASTATIC BREAST CANCER MANAGEABLE

Associate Professor Aleix Prat explains what research is being conducted into hormone sensitive metastatic breast cancer and how researchers are working to find a way to make it a chronic disease.

Predicting Outcomes in HR positive HER2 Negative Metastatic Breast Cancer

Hormone sensitive breast tumours (HR positive HER2 Negative) make up the majority of all breast cancers.

Predicting outcomes for patients with this disease type, specifically at a metastatic stage, is an area of research for Associate Professor Aleix Prat, who is the Head of Medical Oncology at the Hospital Clinic of Barcelona, Spain.

He said treatments for this group of patients are progressing well.

“In this group of patients, which represents 70% of all breast cancers, we now have a lot of treatment strategies that are improving survival.”

“Not only endocrine therapy which has been here for a while, but now the new inhibitors, the CDK4 and 6 kinds.”

“These drugs are not chemo, they are oral, and in general they’re quite safe and they’re improving outcomes like we’ve never seen before, so this is very good news for those patients.”

“So, today it is the standard of care to combine endocrine therapy with CDK4/6 inhibitors and actually we have three drugs already approved.”

“We’re also starting to see that 40% of these patients have a particular mutation called PIKC3A and that group of patients, in the near future, will benefit from a drug that inhibits this mutation.”

Associate Professor Prat said another area of interest is immuno conduits, which are antibodies that target a specific protein of the tumour and also have chemotherapy incorporated in the drug.

“So, we’re giving little amounts of chemo but chemo that goes directly to the tumour.”

“This is an area that is exploding at this moment with very interesting drugs that are very safe, from a toxicity profile and they’re very specific.”

Listen to the podcast

Associate Professor Aleix Prat explains what research is being conducted into HR+, HER2 negative metastatic disease and how before we can find a cure, researchers are working in the short term to find a way to make it a chronic disease.

Making metastatic breast cancer manageable

Associate Professor Prat said he is optimistic that there is research on the horizon that could reduce the mortality rate in metastatic patients.

“I think we’re going that direction,” he said.

“We already have drugs that are starting to do that and seeing what’s coming, and seeing how much we’re learning about the biology, I have to be optimistic because I think we will get there.”

He said before we can find a cure for metastatic breast cancer, the aim is to make it a manageable chronic disease.

“I think making metastatic breast cancer a chronic disease is an objective that is quite realistic in the short term.”

“To have patients that live with metastatic breast disease, but a well-controlled disease with drugs, like diabetes for example.”

“Of course, how much time it’s going to take to get there, I don’t know, because we need to run the studies, but I think we already have proof that this can happen.”

“So definitely, I’m optimistic and I’m basing this opinion on real data that we are starting to have today of patients that are living for many many years with a disease that is controlled and even some patients who don’t have disease because they have responded so well,” he said.

“The question now is if they are cured or not. We need more follow up for that.”

“The first objective is to make the disease chronic. Definitely curing the disease is our main objective but we must be realistic and curing disease for some patients will be a reality but if we want to make it for a large proportion of patients, I think we need a little bit more research.”

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Associate Professor Aleix Prat

Associate Professor Aleix Prat is the Head of Medical Oncology at the Hospital Clinic of Barcelona, Spain.

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BECOMING A BREAST CANCER ADVOCATE FOR ALL

Breast cancer advocate Dai Le speaks with us about the impact her diagnosis has had on her life, how she explained her diagnosis to her son and the importance of spreading breast cancer awareness in non-English speaking communities.

Being Diagnosed With Breast Cancer

Dai Le is a successful businesswoman and politician. She is also a strong advocate for women, especially those from diverse backgrounds.

And after her breast cancer diagnosis in 2014, she became a breast cancer awareness advocate.

Dai is the founder of DAWN – an organisation that champions diverse leadership beyond gender and is also a Fairfield Councillor.

As she was fit and led a healthy life, she said her diagnosis came as a shock.

“It was October 2014.”

“I had just finished doing yoga and there was this little voice inside my head that said check your breasts.”

“As soon as I touched my left side, I discovered a little lump.”

“It was hard, and I thought ‘that’s unusual’ and I went and checked my right arm, under the armpit and there was nothing there,” she said.

“I went back and checked again on the left and I thought it felt like a pea but I thought it can’t possibly be because I exercise regularly, I don’t drink, I don’t smoke, I believe I eat really healthy.”

Dai said she called her doctor the next morning.

“She said ‘don’t panic, you’re still young, no history of cancer in the family, don’t worry’.”

“She sent me to do a biopsy.”

“The next day I got a call, and the receptionist said can you come and see the doctor today and I said sure, but I finish late.”

“She said, ‘It doesn’t matter, she’ll wait for you.’”

Dai said she went to her Doctor’s office after work with her husband.

“I opened the door and walked in, because she was waiting for us we were the only patients there and as soon as I walked in she turned around and she said ‘I’m so sorry, but you’ve got blah blah blah – whatever the actual scientific name of it was – and all I heard was cario-something – so I sat down, and my husband sat down and you could hear a pin drop.”

“No one said anything.”

“The poor doctor was so emotional, I said ‘OK, what’s going to happen, what does it mean, what should we do now, I want to address it now.’”

“Then my husband said, “How are we going to tell our son.”

Listen to the podcast

Advocate Dai Le speaks with us about the impact her diagnosis has had on her life, how she explained her diagnosis to her son and the importance of spreading breast cancer awareness in non-English speaking communities.

Telling Your 11-Year-Old Son You Have Cancer

Dai said telling her 11-year-old son that she had breast cancer was the hardest conversation of her disease.

“So, we said to him, “I’m sick’ and I was trying not to get emotional and he looked, because at that stage I hadn’t had my first treatment yet, so I didn’t look like I was sick, but I said, I’m sick.”

“But we said we believe I’m going to be cured, I’m going to get treatment for it.”

“And I could see him thinking what kind of sickness I have got, and I said, I’ve got cancer.”

“I remember his breath in, and I could see the shock, and he held his breath, and I said, ‘but I’m going to be OK, I’m going to fight this and I’m going to be around’.”

Dai and her husband assured their son that it was no one’s fault and asked if they could speak to his class so they could give him the appropriate support needed while she underwent treatment.

But to her surprise he pushed back on this.

“He said ‘No, don’t’.”

“I asked why, and he said ‘Mum, because there is this girl in class and her mother just died of cancer. If you go and talk about your cancer and your there and her mother’s not there, it might bring back memories for her.’”

Dai agreed with her son and spoke only to his teacher and principal at school so they could be aware of his circumstances in case of any behavioural changes.

Becoming A Breast Cancer Advocate For All

Dai decided to leave full time work after her treatment.

“In the back of my mind I was thinking, do I have 12 months, do I have five years.”

“I caught it early and I think with my type of cancer there’s an 85% chance of survival, which is a very high.”

“But it didn’t stop me from thinking where I will be in 12 months’ time or two years’ time.”

“So, in 2015 when I finished treatment, I thought, what can I do that will enable me to be productive and contributing back and educating people?”

“As a result of that I formed DAWN the group and started doing voluntary work and running those conversations.”

Dai said she was open about her diagnosis and treatment which has allowed her a greater platform to help educate.

“There’s not many women like myself of coloured or ethnic background, who would talk about it willingly and openly.”

“By me doing that, actually a lot of other women, reached out to me privately,” she said.

“For some women I’ve discovered, even when they have the lump, they just ignore it, they don’t want to do anything, until it becomes such a big lump and as a result some of them die.”

“So, I hear the stories like that and it’s quite frightening that women of non-English speaking backgrounds do not talk about, do not go and see their doctors, are too embarrassed to even share it with their family members.’”

“I continue still to drive the conversation through my activities and I still talk about breast cancer, that I’m a survivor.”

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BRCA1 & BRCA2
GENE MUTATIONS

Women who carry a BRCA1 or BRCA2 gene mutation have a high risk of developing breast and ovarian cancer. Associate Professor Judy Kirk explains what these genes are and measures to prevent cancer.

What Are the BRCA1 & 2 Gene Mutations?

Approximately 5-10 per cent of breast cancers are due to a strong family history or genetic mutation such as the BRCA1 or BRCA2 gene mutation.

The discovery of these gene mutations was revolutionary for those with a strong family history of breast and ovarian cancer.

It has allowed for these women to take preventative measures or engage in screening earlier therefore reducing their risk of being diagnosed with these diseases.

Cancer Geneticist Associate Professor Judy Kirk from the Familiar Cancer Service at Westmead Hospital said the discovery of the genes was a breakthrough in the cancer field.

“It was in about 1990 that Mary-Claire King, in the United States, realised that there was certain a little position on chromosome 17 that members of these families sort of shared a chunk of and so found the location of the gene.”

“But she didn’t find the gene,” said Associate Professor Kirk.

“Then there was a huge amount of work that went on all over the world, really a race to find this gene.”

Eventually researchers at Myriad Genetics in Utah in the United States published the finding of the BRCA1 gene mutation.

“They didn’t really know what it was, but they knew that faults in this gene passed down caused a high risk of breast and ovarian cancer and only since then has it become apparent that BRCA1 is a really important gene involved in proliferation and cell cycle, DNA repair.”

“It’s a really critical gene, in fact if you’re born with two faulty copies of that gene, you mostly don’t survive as an embryo.”

“So, it’s critical in early development as well.”

“But the people that we usually see have one good copy and one faulty copy of that gene. Angelina Jolie is one those people.”

You can inherit the BRCA1 and BRCA2 gene mutation from either parent.

Additionally, if you have the faulty gene, there is a 50/50 chance that your children will have it.

Listen to the Podcast

Women who carry BRCA1 or BRCA2 gene mutations have a high risk of developing breast and ovarian cancer. Associate Professor Judy Kirk explains what the BRCA is & measures women with the mutation can take.

Preventative Options For Those With The BRCA1 or BRCA2 Gene Mutation

Those who have confirmed they have the BRCA1 or BRCA2 gene mutation can make the decision to have preventative measures to significantly reduce their chances of being diagnosed with breast and ovarian cancer.

Associate Professor Kirk said it is a decision that is completely dependent on an individual’s circumstance.

“The mastectomy is a very big operation, usually done with reconstruction.”

“Probably more younger women take that up because they’ve got a much longer life to live with the risk of breast cancer.”

“Whereas if somebody finds out about this gene fault at the age of 70 and they’ve never had breast cancer, we would never advise a double mastectomy at that point.”

“So, it does depend on age, but overall, Professor Kelly-Anne Phillips has done a study in the Australian population that indicates that about 30% of women take up the opportunity of bilateral mastectomy.”

“This may be because it is a very big operation and we do have good breast cancer screening but there is no screening test for ovarian cancer. And so the uptake of risk-reducing salpingo-oophorectomy, that’s the tubes and ovaries, the uptake of that is very high.”

“It would be over 90% of women would take up the opportunity of that surgery.”

Associate Professor Kirk did stress that it was not an easy decision for these women to make.

“If you do have that surgery under the age of 40 you induce menopausal symptoms.”

“If we have women who haven’t had breast cancer in the past and are quite happy to use hormone replacement therapy in the safest form up until the age of about 50, the quality of life for those women should not be significantly altered by having their surgery to reduce their cancer risk.”

Breast Cancer Trials currently is conducting research to give these women another option.

The BRCA-P clinical trial  is open to women aged between 25 – 55, with a known BRCA1 gene mutation, with no current or previous breast cancer diagnosis, and are not planning to have, or have not already completed surgery to remove both breasts.

This breast cancer clinical trial hopes to find if using a drug called Denosumab is a safe and effective way of preventing breast cancer.

The Angelina Jolie Effect

Awareness around the BRCA gene mutations was thrust into the headlines in 2013 thanks to actress Angelina Jolie undergoing a double mastectomy after testing positive for the BRCA1 gene mutation.

Associate Professor Kirk said she did a great job of helping to raise awareness and understanding of the gene mutation and its risks.

“I think she did it in the very best of ways,” said Associate Professor Kirk.

“She had a mother with ovarian cancer.”

“Her mother was tested, so the affected family member tested as is standard procedure.”

“If they found nothing, there would be no test for Angelina. But they found a mistake in BRCA1 and so she was tested”

“She had a 50/50 chance of having it, and because she had it, she chose to have her risk reducing surgery. Both for the breast tissue, with a reconstruction, and also, a little further down the track she had the ovaries and fallopian tubes removed.”

Associate Professor Kirk said Angelina Jolie has been a positive role model for how genetic testing and risk reducing surgeries should be conducted.

“She took her time to decide what would be best for her and not everyone will make the same decisions.”

“A 70-year-old who finds out that she’s got a BRCA mutation should not make the same decision as Angelina, but if she’s really healthy, she should think about having her ovaries removed and have breast screening.”

If you would like to keep up to date on the BRCA-P clinical trial, you can subscribe to our BRCA-P newsletter here.

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Associate Professor Judy Kirk is a Cancer Geneticist from the Familiar Cancer Service at Westmead Hospital

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THE PYSCHOLOGICAL IMPACT & EFFECT OF BREAST CANCER

Dr Lisa Beatty explains the psychological impact a breast cancer diagnosis can have, how to can get help & what impact poor mental health can have on your recovery.

The Impact Of A Diagnosis

A breast cancer diagnosis is an incredibly traumatic event in a person’s life.

The psychological impact of a diagnosis can be significant if a patient’s mental health is not looked after.

However, there is no one-size fits all approach to mental health in this area as everyone will react to their diagnosis differently according to Dr Lisa Beatty, a clinical psychologist and Cancer Council South Australia Senior Research Fellow.

“We do know that the distress rates are roughly 4 in 10 women will have what we call clinically significant distress and that is where it is actually getting to the point where it might be causing a real impact in how they’re able to function in their life.”

“It might be that it’s stopping them from going out and socialising, it might be that it’s stopping them from working and this is on top of the impact of the cancer itself.”

“We also know there can be huge issues with body image, we know that there are big issues with feeling shock and anger. And also one of the big things we’re hearing a lot more now is that women might not necessarily feel like they’re being particularly well supported, that some of the people that they thought would be their core support people would just disappear and other people that they hadn’t necessarily expected to be involved, really put their hands up.”

“The number of times I hear people say that a breast cancer diagnosis really shows them who their true friends are… It’s a very common finding.”

Unfortunately demand for mental health services far outweighs the supply in the cancer space.

Dr Beatty said access to cancer specific mental health services can be very dependent on the institution or hospital you are receiving treatment at.

“Some of the big metro-based hospitals with big cancer services will have a lot of funding for psycho-oncology, so you might have a team of people there that you can be referred to.”

“The hospital where I work, I am the only psychologist that works in cancer and I’m funded to do one day per week.”

“So, as you can imagine, it can mean that there are really long wait lists.”

“The demand is very much exceeding the available supply.”
Dr Beatty said because of this, it is not always routine for patients to be referred to these services.

“I think in some hospitals where there isn’t any (services), it leaves a bit of an ethical dilemma for some of the clinicians.”

“Do they screen for distress when they don’t have anywhere to send people afterwards?” she said.

“So, we try and work in a very integrated fashion as part of the multi-disciplinary team.”

Listen to the podcast

Clinical psychologist Dr Lisa Beatty explains what impact a diagnosis can have, how to can get help & what impact poor mental health can have on your recovery.

How Poor Mental Health Can Affect Cancer Treatment And Recovery

Dr Beatty said psychology is increasingly being seen as a core component to a patient’s overall health.

“We know that it impacts deeply not only on people’s well-being but can actually impact on medical outcomes as well, that there is an increased severity and prevalence of physical symptoms and side effects, increased severity of toxicity, when people are feeling depression, anxious or distressed.”

“So, it is being increasingly recognised that we need to actually screen and address distress.”

“It’s not an optional extra.”

“It’s a core component.”

Dr Beatty said there can be a significant impact upon a patient’s response to treatment if their mental health is not considered during their diagnosis and treatment.

“We do know there is a three-fold reduction in adherence to their anti-cancer treatment for people who have untreated distress and that can also lead to some of the recent meta-analysis which has shown there is a 17% increase in mortality rates when people have untreated depression.”

How To Get Mental Health Help When You’ve Been Diagnosed With Breast Cancer

Dr Beatty said if the hospital or institution you are being treated at has a psychologist, you can be referred there directly.

“So, if there is a psychologist associated with the hospital, there won’t be any out-of-pocket costs for it.”

“They will actually just get a referral through their oncologist directly to that psychologist.”

However, if there is no psychologist at your treating hospital, you are still able to get help.

Dr Beatty said they are working to upskill community-based psychologists to treat cancer related mental health issues.

“One of the challenges and something we’re trying to work on here in Australia, is actually up-skilling the community based psychologists in how-to-treat depression and anxiety in cancer, so that we can actually make use of that Medicare funded system, the Better Access system, and get people treated by some of these community based psychologists as well.”

“However, there can then be out-of-pocket costs in this system.”

Dr Beatty said there are many things an individual can do to help ease their own burden.

“I think first of all, it’s really normal to struggle.”

“So, I’ve been talking about the 30 to 40 per cent of people that get clinically significant distress, I would say it’s more upwards of 90 to 100% that would struggle when they’re first diagnosed.”

“So, recognise that it is perfectly normal, it doesn’t make it enjoyable while you’re stuck in it.

But, it will, over time, reduce in severity.”

She also said its important to speak up and ask for help if you can.

“Make sure you are an advocate and speak up, if you feel comfortable doing so, to your treatment team.”

“There are a lot of other allied health options.”

“Also, some of the basic things you can do to really look after yourself, both your physical and your mental health is exercise,” she said.

“Don’t underestimate the role of that, that’s a very affordable and effective treatment for both your mental and physical health after your diagnosis.”

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COVID-19: HOW OUR MEDICAL PROFESSIONALS RESPONDED

We reached out to some of our researchers to ask how their workplaces have changed and how they have had to adapt to the new COVID-19 environment.

Adapting to the ‘New Normal’ of COVID-19

While the rate of COVID-19 infections in Australia and New Zealand is in decline, cancer patients and those who are immune-compromised are being cautioned to continue following social distancing recommendations.

When COVID-19 began to spread across Australia and New Zealand, front line health workers mobilised to ensure their patients would be safe and still receive the best possible care.

Breast Cancer Trials has approximately 800 members, working across more than 100 institutions in Australia and New Zealand. Our membership base is made up of various health professionals including oncologists, surgeons, pathologists, radiation oncologists, nurses and clinical trial coordinators, all of which are involved in breast cancer patient treatment and care.

We reached out to some of our members to ask how their workplaces have changed and how they have had to adapt to the new COVID-19 environment.

Professor Fran Boyle – Medical Oncologist and Scientific Advisory Committee Member

Professor Fran Boyle AM is a Medical Oncologist at North Sydney’s Mater Hospital, where she is the Director of the Patricia Ritchie Centre for Cancer Care and Research, and Professor of Medical Oncology at the University of Sydney. Professor Boyle has been involved in breast cancer clinical trials research for the past 20 years. She has chaired the Breast Cancer Trials (BCT) Board and is a current member of the BCT Scientific Advisory Committee.

She says that they have been sure to communicate all changes to their patients.

“We are reassuring our patients that oncology services around the country will continue during COVID as it is considered an essential service.”

“Surgery, radiotherapy and chemotherapy services have made some adjustments, to ensure greater safety for patients and staff and our team meetings are continuing, mostly on videoconference, sometimes with hilarious results, as we master the technology in our PJ’s.”

Professor Boyle said they have been able to utilise telehealth more for the benefit of their patients.

“The major advance has been the ability to use telemedicine for routine office visits, and this has been appreciated by most patients. If there is a need for a physical examination, or test results to be given, then a shorter clinic visit can be scheduled.”

She also shared advice of patients with low immunity and those who are taking endocrine therapy.

“The message to patients with low immunity (recent chemotherapy or radiotherapy, or metastatic disease) is to have a flu vaccine early, and to try to stay at home. You can ask your team for a letter to allow your carers to shop for you. Exercise is still important, so try to walk or use an exercise bike at home. Also ask your team what to do if you get a fever, as this may be different from usual.”

“Patients on adjuvant endocrine therapy, for example Tamoxifen or Aromatase inhibitors, are not immune suppressed and should take the precautions recommended for the general community. This includes having a flu vaccine this year. Your annual mammogram may be delayed till later in the year, which will be fine. Of course, if you notice something new, alert your team for an earlier appointment.”

Dr Janine Lombard – Medical Oncologist and Scientific Advisory Committee Member

Dr Janine Lombard is a medical oncologist who specialises in breast and gynaecological cancers. She has a busy clinical practice and also shares her expertise as a Breast Cancer Trials Scientific Advisory Committee member.

She said her practice began preparing for COVID-19 once the news began to spread around the world and the first cases were confirmed in Australia.

“There was the news from China about the virus, which was more and more worrying, then came the first cases in Australia and the news about the health system on its knees in Italy.”

“Infection disease specialists were also talking about 1000’s of patients needing ventilation in Australia by April.

“With this came fear; mostly the fear for our vulnerable oncology patients, many coming weekly for either chemotherapy or radiation – already with compromised immunity from cancer and now staring down the barrel of a pandemic.”

Like Professor Boyle, Dr Lombard said they are thankful for Telehealth.

“Up until now we used telehealth sparingly for patients who live remotely. But now, it has become our saviour.”

“It has allowed us to keep so many patients in the safety of their homes while we try and navigate a strange new world of not being able to reach out physically and comfort a distressed patient or family member.”

She said her hospital immediately set up a triage for acutely unwell oncology patients.

“We have set up a rapid access area to keep our oncology patients out of the Emergency Department if they do not have respiratory symptoms. This has been staffed by our experienced nursing staff who have stepped up, no questions asked.”

She also said that there is now a ‘backup’ oncologist on call at all times in case the rostered oncologist contracts COVID-19 or has to self-isolate. She has praised her team for their dedication to upskilling in this time and said they are practicing social distancing amongst themselves whenever possible.

“Every face to face meeting has been changed to some electronic format. We sit in our offices and brainstorm with our colleagues one office door away. It is such a strange world but mostly it works.”

Dr Lombard said it is a difficult period but everyone in the field has stepped up for their patients.

“There is a sense of purpose and collegiality not felt for a long time.”

Vicki Sproule – Clinical Trial Coordinator for GenesisCare

Ms Vicki Sproule is a Breast Cancer Trials member and a clinical trial coordinator at Genesis Care Australia.

Ms Sproule has been an active member for many years, after working alongside one of our Founders, Professor John Forbes AM.

She said it’s been a challenging period, but oncology care must continue.

“It goes without saying that COVID-19 has thrown the world a curve ball. Healthcare systems internationally have been significantly challenged as they reprioritise efforts and resources to respond to the surge in COVID-19 patients.”

“As challenging as this period is for both healthcare providers and communities, cancer continues and so must vital oncology care.”

She said their centres have made changes to how they deliver this care and have built on the infection control procedures already in place.

“We have also adapted how we manage oncology trials.”

“We have introduced a telehealth option for suitable patients participating in clinical trials. If a patient does need to attend one of our centres, they can feel safe and confident that we are maintaining the best standards to reduce risk,” she said.

“This includes screening all patients and staff, reducing the time a patient needs to spend in the centre and the number of people in our centres at one time, additional cleaning and access to personal protective equipment as needed.”

Ms Sproule said thankfully these measures have meant they are able to keep many of their trials open during COVID-19.

“In fact one of the trials coordinated by Breast Cancer Trials is an ideal trial to be recruiting to during this period.”

“The primary aim of the EXPERT trial is to see whether a genomic test of breast cancer tissue can be used to identify women who can safely avoid radiation therapy after breast cancer surgery.”

Ms Sproule said she is impressed by the support everyone is providing to each other in this time and is thankful for the research community that is still working on finding new and better treatments for breast cancer.

“As a research partner we have been well supported by trial sponsors to identify ways to safely manage patients on a trial, while also being able to continue to collect the important information needed to meet the trial outcomes.”

“The need for clinical trials that lead to new treatments that help people live longer, will continue to play an important role in cancer care and healthcare more broadly.”

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HEIDI’S STORY

Heidi started getting mammograms at 42 after a close friend was diagnosed in her early 40s. She was thankful she did, after she was diagnosed with breast cancer at 43.

Heidi’s Story

It’s recommended that women in Australia start getting routine mammograms at the age of 50.

43-year-old Heidi Routley started early after a push from a friend who was diagnosed in her early 40s.

She is thankful she did after the breast cancer subtype Invasive Ductal Carcinoma was discovered in a routine mammogram, one year after she started scheduling them for herself.

“A friend of ours was diagnosed at around 43/44 and she asked everyone that she knew to go and get a mammogram at the age of 40,” she said.

“I was a little bit late getting it done, with life, with children and studying a masters, and so then I went and got one done when I was 42.”

Heidi was on her third mammogram when a calcification was found.

“So, I had to have a biopsy.”

“I thought it would be nothing. Turned out that it wasn’t nothing.”

She said the push from her friend saved her life.

“So, ultimately our friend going through that has saved my life and now it’s saved another life as me going out there and telling my friends, ‘get a mammogram’, another friend of a friend has just had a DCIS found.”

“It seems to be this continual line where people are finding out but it’s about knowing and being aware of it and getting it before it’s too late.”

Listen to the podcast

Heidi tells us what it’s like being diagnosed as a young woman with a young family, having to put your career on hold and not being afraid to ask for help when you need it.

Receiving The Diagnosis

Heidi wasn’t expecting the biopsy to result in a diagnosis.

“I was standing in Coles buying a birthday cake for my mum for dinner that night and my phone rang.”

“It was my surgeon. He rang to tell me that it was breast cancer.”

“The first thing I did was I went and sat outside of Coles and I rang my university lecturer because I was just finishing my masters and I had my final assignment due on the Sunday and that was the Wednesday.”

“I rang her straight away and I said I just don’t know how I’m going to get this assignment done and told her what was going on.”

“She said ‘it doesn’t matter Heidi, It’s a piece of paper. We’ll get that done. You look after yourself.’”

“I also got my accreditation from the NSW Department of Education that day to say that I was able to teach, so it was a bittersweet moment.”

“I had been waiting for this piece of paper to come through, to say that I can teach now and then all of a sudden, it’s taken away, because I haven’t actually taught yet since I’ve been diagnosed because I’ve just been too ill to do so.”

“Getting that piece of paper but getting that diagnosis on the same day, and on my mum’s birthday, was pretty daunting,” she said.

She said undergoing treatment at a point in her life where she expected to begin a new career was challenging.

“My oncologist didn’t want me to be teaching, especially during that first chemo.”

“It’s been really hard considering we’d budgeted over the past 3 and a half years for me to study. We knew that there was a bit of an end period coming up and I’d be able to start working again.”

“So, we were treading water a bit financially.”

Reaching Out And Accepting Support

Heidi said the support she received from family and external charitable organisations has helped enormously.

“I’ve got my amazing family and friends and they’ve organised a food train, so we’ve got meals coming on chemo weeks so that it’s not so much pressure on my husband to sort dinner out for us.”

“Everyone has come together and it’s been amazing helping me through it.”

“But there are also so many great organisations out there who have helped financially, just with cleaning and things like that.”

“I’ve used Mummy’s Wish, which is an organisations for mums with cancer and they’ve organised a beautiful teddy bear for my son, which has got a little love heart voice recorder so you can record messages if you’re going in and out of hospital.”

“They’ve also organised house cleaning for us.”

“There is also the OTIS foundation which is a foundation where they will provide holidays for families with cancer, so I’ve put my name down for that as well. And also the Hunter Breast Cancer Foundation, they’ll be doing some cleaning and they’ve got the wig library as well.”

“So, there’s lots of different things out there but you just have to swallow your pride a little bit and take use of those organisations.”

Heidi said her advice is to accept the help and support offered.

“It’s really hard to say yes, I need help, but people want to help you,” she said.

“If people say, ‘what can we do for you’ they genuinely mean it.”

She also encourages young women to be proactive about their health.

“Get that mammogram, make sure your friends are getting them.”

“If you feel something, and it doesn’t feel like it’s right, don’t let the doctors tell you that it’s just a cyst or something, get a second opinion.”

“It’s your body, you need to take charge of it.”

Why I Support Breast Cancer Trials

Heidi is a supporter of Breast Cancer Trials and has recently participated in a Breast Cancer Trials awareness campaign.

“For me particularly, because I’m triple negative breast cancer, that means that the likelihood of my re-occurrence is higher than normal breast cancer, that’s hormone related.”

“Which I didn’t know when I first got diagnosed.”

“I thought ‘oh yay, I’m triple negative – negative is a good thing’, but then I did some research and it wasn’t such a good thing.”

“So, for me, in Breast Cancer Trials research, if there’s something there that can pick up on those tumour cells earlier, especially for triple negative breast cancer for patients like me – then it’s all worth it.”

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DE-ESCALATING BREAST CANCER TREATMENTS

Professor Julia White explains that de-escalation is right-sizing treatments for patients. She explains how we can find out who needs more or less surgery as part of their breast cancer treatment.

De-Escalation: Reducing Breast Cancer Treatments

Breast cancer researchers are often focused on finding new and better treatments and prevention strategies for the disease.

However, some breast cancer research has another goal: to reduce the amount and intensity of treatment patients receive, while maintaining equally good cancer outcomes.

This is a research area for Professor Julia White.

Professor White is a tenured Professor of Radiation Oncology and Koltz Sisters Chair for Cancer Research at The Ohio State University.

“I think it’s important for us as providers to clarify that de-escalation doesn’t mean we’re backing off on therapy,” said Professor White.

“It means we’re right sizing treatment.”

“For so long, breast conservation has automatically meant you’re going to get surgery, a lumpectomy and breast radiation.”

“But from our knowledge of breast cancer biology, certain patients can be cured, or their cancer control is completed by just having the surgery portion.”

Professor White said de-escalation can be incredibly beneficial for certain patients, but the issue is identifying those patients who can benefit from this ‘right-sizing’ of treatment.

However clinical trials which use multi-gene assays or genomic tests of breast cancer tissue, can help to identify biologically which patients are going to have a low event rate in the breast after breast conserving surgery.

This means some patients could safely avoid radiation therapy.

“You’ll always get a lower reduction in breast risk when you radiate.”

“But if your likelihood of recurrence is so low then adding the radiation for women might not give a meaningful difference to them.”

“So, as we de-escalate or right-size breast conservation, we’re going to see who needs both lumpectomy and radiation and who is OK with just a lumpectomy.”

“So, de-escalation is really for breast cancer that is hormone sensitive, stage one. Meaning the lymph nodes are negative, in women who are post-menopausal and committed to taking their endocrine therapy.”

Listen to the podcast

Professor Julia White explains that de-escalation is right-sizing treatments for patients. She explains how we can find out who needs more or less surgery as part of their breast cancer treatment.

Current Research Into The De-Escalation In Breast Conserving Therapy

There is an increasing number of de-escalation clinical trials, including the Breast Cancer Trials EXPERT clinical trial.

EXPERT is investigating whether a genomic test of breast cancer tissue can be used to identify women with early breast cancer who can safely avoid radiation therapy after breast cancer surgery and the potential side effects of this treatment.

Professor White said in the US, where she practices, there are two groups of de-escalation trials.

“One is really for post-menopausal stage one breast cancer, in patients who are between the ages of 50 and 70.”

“Over age 70, the approach is de-escalation.”

“Under the age of 70, between 50 and 70, the trials are really focused on using a multi-gene assay, using an immunohistochemistry assay or using recurrence score.”

This is how researchers can determine if a patient needs further treatment after surgery, like radiation therapy.

Why De-Escalation Research Is Important

Professor White said de-escalation trials are about investing in patient’s wellbeing.

“It’s maybe not the most scientifically sexy clinical trials, we’re not identifying a new targeted agent, but we need to know how to take care of women.”

“When you look at breast cancer screening studies, the most common breast cancer stage that is picked up at breast cancer screening is stage one.”

“So, over 50% of newly diagnosed breast cancers are stage one and most of these occur in post-menopausal women and most of them are hormone sensitive,” she said.

“So, the impact is tens of thousands of women annually.”

“So, it’s really incumbent on us right now to run clinical trials that we can guarantee the next generation that we’ll know how to take care of them and that’s what we’re doing by investing in de-escalation trials.”

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