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.

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.”

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.

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.”

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.”

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.

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.

“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.

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.”

“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.

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.

“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.”

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.”

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.

“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, 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.”