Read the latest news from the Waikato Breast Cancer Research Trust.

Jo’s hope for future generations – we get smarter, more effective and more successful in breast cancer diagnosis and treatment

Jo was diagnosed with Grade 2, Stage 2 hormone receptor-positive, and HER2 positive invasive ductal breast cancer. She shares her thoughts about her breast cancer journey and being part of the POSNOC  trial;

How old were you when you were first diagnosed with breast cancer and what went through your mind? 

I was diagnosed just one week before my 54th birthday. My mum was diagnosed with her breast cancer on my 40th birthday and that always upset her, so I was firstly sad that I was going to have to tell her I now had cancer too, right around my birthday again. Timing wise I was not impressed at all.

Other than that, I was not surprised strangely; it all was a bit surreal. I have had some pretty crazy things happen in my life so I on one level just thought here we go, what’s this ride going to be like.

Do you have a family history of breast cancer?

It turns out my family has had four generations we know for certain that have had breast cancer on both sides of my mum’s family. Weirdly all of the instances of cancer in the women in my family has been different, so no genetic link specifically. 

But given my uncle and father both died of bowel cancer and my remaining uncle is a bowel cancer survivor I was ok with getting breast cancer, as that to my way of thinking was an easier cancer to deal with. Mammograms had always been easier to do, and way less drama than colonoscopies, was my logic. 

Why did you participate in a clinical trial?

I have four nieces, and they have had both their aunts and grandmothers and great grandmothers on both sides of their family get breast cancer. How could I not participate in something that could help them?

I also have been lucky to have had positive experiences with other medical events in my life where I both contributed to and benefited from research by my medical team at that time. It just made sense to say yes.

Why is breast cancer research so important to you?

When you get cancer you suddenly discover so many women around you have been where you are about to go. Sadly you also find yourself discovering more are following. My treatment and experience was all the more successful because of the research done by and assisted by other women in my situation. So every bit you can do helps. Collectively it can be a pretty powerful thing. I like that being part of something bigger aspect.

What was it like being on the trial?

Comforting. Knowing I would get that extra bit of attention. 

Satisfying. Knowing my experience and data is adding to a body of research that will ultimately benefit others.

Reassuring. By participating in the POSNOC trial gets the numbers it needs to make a difference quicker. 

What is your hope for future generations?

That we get smarter, more effective and more successful in all aspects of breast cancer identification and treatment. 

ANOTHER BREAKTHROUGH FOR RESEARCHERS IN BREAST CANCER TREATMENT – MONARCHE TRIAL INTERIM ANALYSIS

A recent interim analysis of the international “monarchE” trial has shown a significant decrease in the risk of breast cancer recurrence or death for those taking the drug Abemaciclib in combination with standard endocrine therapy, compared to standard adjuvant endocrine therapy alone.

The Waikato has been a centre for the monarchE trial since 2018. This clinical trial is investigating whether the oral drug Abemaciclib can improve the outcomes in women or men with high-risk hormone receptor-positive (HR+) and human epidermal receptor 2 negative (HER2-) early breast cancer. Abemaciclib stops the production of proteins in the body called CDK4 and CDK6, which are responsible for promoting cell growth. It has been shown to have antitumor activity and significantly reduce tumour growth, including breast cancer. Abemacicilib is taken twice daily in tablet form over a two year period.

90 percent of all breast cancer is diagnosed at an early stage and 70 percent of all breast cancers are HR+, HER2-, the most common subtype. Despite the progress in the treatment of breast cancer, approximately 30 percent of people diagnosed with HR+, HER2- early breast cancer are at risk of their cancer returning, potentially to incurable metastatic disease (spread of cancer to other parts of the body). This risk of recurrence increases based on certain  features such as breast cancer that has spread to the lymph nodes in the armpit, a larger tumour and a high grade (more aggressive) tumour .

“There has been a great need to improve endocrine therapy for breast cancer patients who are at high risk of disease recurrence.  The monarcE trial was specifically designed for patients with breast cancer at high risk for returning. Through the monarchE trial 5,637 people around the world have taken part in this research which has demonstrated positive results,” shares Waikato monarchE trial coordinator and research nurse Jenni Scarlet.  “If we can prevent women and men diagnosed with high-risk early-stage breast cancer from developing metastatic or incurable breast cancer then this would mean many lives saved”. The monarchE trial is headed in the Waikato by Medical Oncologist and WBCRT Trustee Dr Marion Kuper-Hommel.

In the Waikato, the Waikato Breast Cancer Research Trust has enabled six patients the opportunity to participate in the monarchE trial. The trial will now continue through to the completion date, estimated for June 2027. All participants will be followed to assess overall survival and other outcomes.

Giving comfort, warmth and dignity to cancer treatments

A Tauranga-based clothing business has established a relationship with the Trust with the aim of providing funding to the Trust through a portion of sales of its recently-development garments for patients undergoing cancer treatment.

The Business Tailor has developed a range of garments under the Can Do name to give cancer patients (and others undergoing infusion treatments) something practical and comfortable to wear that allows treatment access without having to remove clothing, as well as being warm, easy-wash and stylish.

Managing Director, Graeme Dick says “We manufacture our garments in Tauranga, using top-quality merino wool and cotton.

Most of our garments are merino, with cotton knitted on the inside to reduce the likelihood of wool allergy amongst patients. There are also 100% cotton garments available, which better suit warmer climates.

All garments have IV and PICC access on both sleeves, and we manufacture garments that separately offer access for Portacath, breast and upper-body treatments.”

“A close friend who underwent treatment was the catalyst for us developing this range. He was one of several patients to trial the clothing to guide us with improvements to the design and final product”.

The Business Tailor aims to support the Trust through its Can Do range and Professor Ian Campbell, Chairman of the Trust endorses this initiative:

“These garments fill a big gap in practical, comfortable, and stylish provision of care for cancer patients. Graeme has put in the time and effort to make sure they fulfil each of these. Well done Graeme!”

Production of the garments is imminent, with the New Zealand market being the first priority. Export markets are currently being developed.

Graeme says “Most people in our country have had some form of contact with cancer. We often feel frustrated with not being able to help friends and loved ones during their journey. We are committed to doing what we can to make patient’s lives more comfortable with dignity while undergoing treatment, so that in some small way, we can help while at the same time, supporting the Trust”.

For more information about the Can Do range, contact Graeme on 027 226 1732 or buy@thebusinesstailor.co.nz

Incredible donation

When Cathy Khouri’s mother was diagnosed with breast cancer in the early 1990s, she had a late diagnosis and underwent radical treatment. This was a traumatic time and she was given no choice about her treatment and no option of breast reconstruction.

When Cathy was diagnosed 17 years later, her journey was markedly different. Cathy’s diagnosis was made through a national breast cancer screening programme and her cancer was detected early. Informed consent was very much part of the treatment and care discussions Cathy had with her breast surgeon and other health professionals. The opportunity to discuss her situation with friends and family was quite different from her mother’s experience.

With three adult daughters and a family history of breast cancer, Cathy is reassured that breast cancer treatment continues to be refined and improved through clinical trials research.

Now heading into retirement, dietician Cathy and her husband, dental surgeon Zaf, recently decided to wind-up their charitable trust, which was originally set up to enable continuing professional development for dieticians in the Waikato. Remaining funds from the trust have been donated to the Waikato Breast Cancer Research Trust (WBCRT). With minimal government funding for research, we rely on the generosity of the community to raise funds and the $21,000+ donation was incredibly generous.

Back left to right: Waikato Breast Cancer Research Trust founder Professor Ian Campbell and Zaf Khouri. Front left to right: WBCRT research nurse Jenni Scarlett and Cathy Khouri

With this month marking the 20-year anniversary of research carried out by the WBCRT and having been involved in over 45 clinical trials, there is no doubt that every advance made in treating breast cancer has been the result of research. These advancements include better drug treatments; both chemotherapy and hormonal therapies; improvements in radiotherapy, breast-conserving surgery instead of mastectomy, the development of sentinel node surgical techniques instead of axillary dissection, and reducing treatment side effects and improving quality of life.

“Research ensures evidence-based best practice and Waikato researchers want the best for those in our region diagnosed with breast cancer,” said Professor Ian Campbell, Trust founder and breast surgeon.

“As we progress beyond 2020, the WBCRT is enabling clinical trials which are individualising treatments more to the specific features of each different type of breast cancer. For example, drug treatments are becoming more targeted to specific growth factors of a tumour. As technology develops there are specialised laboratory tests that can examine multiple aspects of a tumour.  The results of these tests will help guide oncology doctors to select future patients who will or won’t benefit from treatments such as chemotherapy and radiotherapy.”

The most common reason given by women for deciding to participate in a clinical trial is that they want to help provide more information for future generations of their family. With their donation, Cathy and Zaf are also wanting to make a difference for future generations of Waikato women.

More than 400 Waikato women are diagnosed with breast cancer each year and Cathy’s own experience has given her some powerful insights into what this is like.  

“When cancer happens, the whole family and everyone who loves them is effected. It has positively changed the way I live the rest of my life. With support and expert advice, I was able to make tough decisions, the results of which were not at the expense of my femininity. I am thankful I have a life after breast cancer; for me early detection was key.”

Research over the past 20 years continues to answer questions about reducing treatment to the axilla

The status of the axillary or armpit lymph nodes remains the most important indicator of outcome for women diagnosed with breast cancer, and helps predict the need for further treatment (e.g. chemo or radiotherapy). Traditionally, axillary node status has been determined by the removal of all of the nodes (called axillary clearance or axillary node dissection).  This operation may lead to arm swelling (lymphoedema), pain, some abnormal skin sensation, and shoulder stiffness.  Over the past 20 years the WBCRT has enabled the introduction of a reduced surgery to the armpit called “sentinel node biopsy”. Sentinel node biopsy involves surgical removal of the lymph nodes most closely related to the breast cancer (usually 2-3 lymph nodes).

Since 2001, Waikato Breast Surgeons and researchers have participated in a learning phase of sentinel node biopsy, followed by four international clinical trials introducing sentinel node biopsy surgery for different types of breast cancer.

The sentinel node biopsy trials have been part of the journey of reducing the amount of breast cancer surgery. In the 1970s it was believed that all women with breast cancer needed a mastectomy, and nowadays most women don’t need a mastectomy, and breast-conserving surgery is performed in a majority of cases. Prior to the early 2000s, all women underwent axillary clearance.

The most recent sentinel node trial is the “ POsitive Sentinel NOde: adjuvant therapy alone versus adjuvant therapy plus Clearance or axillary radiotherapy” or “POSNOC” trial. This is a UK led international trial, which is coordinated in Australia and New Zealand by Breast Cancer Trials ANZ.

At the moment, it is usual for women with a small amount of cancer spread to 1 or 2 sentinel lymph nodes to have further treatment (axillary clearance or axillary radiotherapy). The POSNOC clinical trial is investigating whether some of these women may be able to avoid treatment to the armpit, and, as a result, avoid the side effects of this treatment as well as how this treatment affects a woman’s quality of life.

It is currently believed that women with more than a tiny amount of cancer in the sentinel node need to have the other lymph nodes removed (axillary clearance). This may or may not be true, and this is the question that the POSNOC clinical trial will answer. Very often there is no cancer seen in the other armpit lymph nodes when removed. So those women get the short and long term side effects of the axillary treatment for no benefit.

We now know that additional therapies (e.g. hormonal therapy and chemotherapy) are very good at preventing the cancer from coming back, so additional treatment to the axilla (armpit) may no longer be needed. Previous research suggests that axillary treatment may not change the risk of the cancer coming back in the armpit or anywhere else. However, more research is needed to give a clear answer.

If we can prove that less axillary treatment is just as safe as doing more treatment, this will be a great outcome for women diagnosed in the future.

Recruitment for this UK led trial is planned to complete in mid-2021. We acknowledge the Waikato and other NZ women who have had the courage to participate in this trial.

Good news for postmenopausal women with a high risk of breast cancer

As an oncology nurse Lorrie Kurth has seen the effects of breast cancer first-hand.

Lorrie has a high risk of breast cancer. She has lost her grandmother, her mother and a cousin to the disease, another cousin has had breast cancer and so has an aunt.

Ten years ago, Lorrie joined the anastrozole medical prevention trial to help researchers find a way to prevent the disease.

“It’s was such a good opportunity to help other generations of my family and other families”.

At the time of enrolling in the trial, Lorrie knew that it could take 10 years for the trial to determine whether the drug would help prevent breast cancer.

Ten years have now passed and the long-term results of using anastrozole for breast cancer prevention were published recently and its good news for wāhine like Lorrie that are at high risk of breast cancer and ductal carcinoma in situ (DCIS).

The results show that anastrozole maintains a preventative effect for postmenopausal women at high risk of breast cancer for at least 12 years.

Anastrozole inhibits the production of oestrogen in postmenopausal women and has been used for several years now in the treatment of postmenopausal women with oestrogen receptor-positive breast cancer.

The use of anastrozole, which is part of a class of drugs called aromatase inhibitors, is more effective than tamoxifen in women who have already had breast cancer.

This research shows that anastrozole is a safe drug in the long-term and provides women with greater options when it comes to managing their risk. Other options include regular breast screening, preventative surgery and a healthy lifestyle.  

Lorrie has not been diagnosed with breast cancer, she is in good health and has never dwelled on her higher chances of getting the disease. “It’s not something I spend a lot of time thinking about. I work on the theory that if it happens, I’ll deal with it then. “I have had excellent surveillance throughout the trial, particularly with my family history, and this has been very comforting.”

Lorrie is philosophical about cancer and death because of her years of working as an oncology nurse. “I’ve learned from looking after people with cancer that you have to live every day and make the most of that day.”

Jenni is passionate about women receiving the best care

I was 21 when my mother was first diagnosed with breast cancer, my two younger sisters were eight and eleven at the time. I was devastated by this news and I worried for the future of my sisters as they were still so young. My mother enjoyed another 10 years following her initial treatment but unfortunately died of her advanced breast cancer. Our family nursed her at home until the end, which is one of the hardest things I have ever done.

In the early years of my nursing career I worked in an inpatient Oncology ward. I thought I understood how women diagnosed with breast cancer must feel but when it is your own mother, it is a very different experience.

My mother died in the same year that I completed a post-graduate qualification in research. Throughout my studies I had been inspired to work in research as a means of making positive change.

I have now been working as a research nurse at the Breast Care Centre, Waikato Hospital since 1997. Since then, I have worked with local specialists and consider myself very fortunate in my professional life to be able to make a difference with extending women’s lives after a breast cancer diagnosis.

Here in the Waikato region we are one of NZ’s leading breast cancer research centres. As well as our own studies, we collaborate on clinical trials with the Breast Cancer Trials and other major groups around the world.

In 2000, I was one of a group of committed people who set up the Waikato Breast Cancer Research Trust, a charitable trust which enables our extensive Waikato research and audit programme.

In the Waikato, more than one woman is diagnosed each day. For every woman diagnosed there are family members and loved ones who are also affected. My commitment to breast cancer research remains stronger than ever. With the knowledge, we have gained from research, I am determined, along with my colleagues, that our women receive the best care possible!

Jenni Scarlet – Research Nurse& Secretary, Waikato Breast Cancer Research Trust

COVID-19 information for breast cancer patients and survivors

We understand that many in our community may be considered most vulnerable to contracting COVID-19 due to your age, pre-existing health conditions, if you have metastatic breast cancer, are undergoing treatment or have recently completed treatment for breast cancer or other cancers.

It is important to keep informed about the COVID-19 situation as it continues to change, especially for those who have compromised immunity.

If you are currently in active treatment and concerned about symptoms you should phone your treating doctor or health team, or GP immediately for advice.

If you have finished treatment, you should follow the advice being directed at the general public.

For those undergoing cancer treatments and who may have compromised immune systems below is some information which is designed only as a guide. If you have health concerns or are experiencing symptoms (see below), contact your treatment team immediately. The situation is changing quickly, and you should monitor appropriate information sources, listed below, for the most up to date advice.

As coronavirus (COVID-19) continues to spread, our thoughts go out to anyone who has been impacted. We hope that everyone is safe and well and taking the necessary  precautions and following the relevant guidelines to help minimise the spread of the virus.

What are the symptoms of COVID-19?

Symptoms can range from mild illnesses to pneumonia. Many people will recover easily, however those with compromised immune systems may get sick very quickly. People with COVID-19 may experience flu-like symptoms such as fever, coughing, sore throat, fatigue and shortness of breath.

It’s important to note that some of these symptoms are also side-effects of some cancer treatment. During active treatment, fever or the combination of cough with fever, or cough with difficulty breathing require urgent medical attention.

You should cover all coughs and sneezes with your elbow and tissues and avoid others if you are sick. You should also avoid touching your eyes, nose and mouth.

If you have serious symptoms such as difficulty breathing, call 111 for help.

Who is at risk of getting COVID-19?

Everyone is at risk of getting COVID-19 but it will impact everyone differently. Those with compromised immune systems or pre-existing medical conditions, including cancer, may be at increased risk of contracting COVID-19 and may have an increased risk of developing a more severe infection.

However, a past history of early stage breast cancer is not thought to be associated with worse outcomes in itself, unless your doctor has told you otherwise.

Those of a more advanced age, people with other health conditions such as heart disease or diabetes, or those with respiratory illnesses are also at a higher risk of developing a more severe infection. The measures being put in place throughout the world aim to help protect these more vulnerable members of society.

What should I do if I am exposed to a confirmed COVID-19 case?

If you are exposed to a confirmed COVID-19 case, contact your GP, treatment team or treating doctor immediately for advice. Always try to do this over-the-phone and not in person to reduce the risk of exposing others.

You can also call Healthline (for free) on 0800 358 5453

What should I do to protect myself from COVID-19 if I am undergoing treatment?

If you are undergoing cancer treatment, or have a compromised immunity, you may want to take extra precautionary steps to reduce the chance of contracting COVID-19.

This includes washing your hands with soap and water more frequently and for at least 20 seconds, using alcohol-based sanitiser, avoiding touching your face, social distancing, cleaning and disinfecting surfaces. Wearing a facemask has not been shown to protect asymptomatic people (non-healthcare workers) from becoming infected with COVID-19.

Discuss with your treating team regarding timing of a flu shot as getting the flu and COVID-19 at the same time can make you very ill.

Also you should ensure you have enough prescription and over-the-counter medications, try to keep space between yourself and others, limit your exposure to groups of people, when in public avoid crowds, wash your hands often and avoid any unnecessary travel.

Do any of my treatments increase my risk of contracting COVID-19?

Cancer treatments that compromise the immune system can make you more vulnerable to infection and therefore increase your risk of COVID-19. Treatments can include chemotherapy, CDK4/6 inhibitors, and surgery.

Radiotherapy is less likely to affect your immune system, but you may find your Radiation Oncology team will look at rescheduling treatments to limit your exposure to others.

Hormone blocking treatments such as tamoxifen, goserelin, letrozole, anastrozole and exemestane are not known to reduce the immune system, therefore people on these treatments for early stage breast cancer are not considered to be at increased risk.

Your doctor and treatment team have your health in their best interests and will be aware of these risks. Follow their advice and speak with them about any concerns you may have.

Does COVID-19 affect my participation in a clinical trial?

At present, the Waikato Breast Cancer Research Trust clinical trials will adapt to take into account the current situation. Some changes may be required, such as the use of telehealth for certain trial activities, if possible. If you have any questions or concerns regarding your clinical trial participation, contact your clinical trials nurse or treating doctor.

Will the Waikato Breast Cancer Research Trust be continuing clinical trials?

Waikato Breast Cancer Research Trust research nurses will be closely monitoring and adapt to the situation to ensure that our trials run as smoothly as possible during this time. Our priority is the safety of patients, and appropriate measures will be put in place to minimise risks to trial participants.

What should my family and friends do to help avoid the spread of COVID-19?

Your family and friends should follow the government guidelines about reducing the spread of COVID-19 which can be found here.

If they are experiencing any symptoms or have come into contact with a confirmed COVID-19 case, you should avoid any contact with them, and they should isolate themselves according to the guidelines.

If possible, they should also consider getting the flu shot to avoid sharing the flu to you, while you have a compromised immune system.

What should I do if I am feeling stressed or anxious about COVID-19?

It appears as though COVID-19 is being spoken about everywhere at the moment: in the news, by friends and family, and on social media.

It is important that you monitor the most correct and up-to-date information sources regarding COVID-19. Do not rely on social media as your only form of information. You should get your information from the Ministry of Health New Zealand and the government’s COVID-19 website

Breast Cancer Foundation NZ telephone helpline is operating. This helpline is staffed by breast cancer nurses. It may help to speak with a health care professional about your health concerns. You can call them on 0800 2268 773 or email breastnurse@bcf.org.nz

If you are feeling anxious, have questions or need support, you can contact the Cancer Society information service helpline on 0800 266 237. Their professional team can help to provide emotional support as well as practical tips for minimising the risk of infection during this time.

If you have a treating counsellor, psychologist or onco-psychologist, it may also be helpful to schedule a phone appointment with them to discuss your anxieties and concerns.

This information has been adapted from Breast Cancer Trials ANZ and reviewed by Breast Cancer Trials Medical Advisor on 24/03/20. It is meant as a guide only. If you have concerns regarding your health, contact your treating physician or treatment team.

For more information

For COVID-19 health advice and information, contact the Healthline team on 0800 358 5453 or +64 9 358 5453 for international SIMS.

Useful COVID-19 information links

Government updates on COVID-19 in New Zealand

Ministry of Health New Zealand

World Health Organisation

Our magic partner

The Waikato Breast Cancer Research Trust are proud to be the Official Charity Partner of the Waikato Bay of Plenty Magic Netball Team and Netball Waikato Bay of Plenty. 

We love having the BEST netball players in the Waikato and Bay of Plenty supporting the work we do, and they are great role models to encourage everyone to be active. Research shows that regular exercise reduces the risk of being diagnosed with breast cancer, and also reduces the risk of breast cancer recurrence after diagnosis. 

Sadly the decision has been made, due to COVID-19, to suspend the ANZ Premisership competition and the upcoming netball season. We’re saddened for all the players and team as we’re passionate about netball and will miss watching the team playing. Captain Sam Winders beautifully said though that “now is the time for resilience and reflecting on the health of our people.” and the WBCRT couldn’t agree more.

Glasses sales support breast cancer research

The Specsavers Community Program is where Specsavers stores across the country donate a portion of every glasses sale to both a local charity of the store’s choice and to The Fred Hollows Foundation NZ, which is working to eradicate avoidable blindness in the Pacific.

Since 2014 the Waikato Breast Cancer Research Trust have been the local charity supported by the Chartwell and Hamilton CBD Specsavers stores. To date these stores have raised $10,000!

This is an incredible effort from our local community and we are very grateful that Chartwell Specsavers and Hamilton CBD Specsavers have chosen us as their charity to support. 

Their regular donation each quarter has contributed to the introduction of new treatments to improve outcomes and reduce side effects for Waikato and NZ wāhine diagnosed with breast cancer. 

Thank you Specsavers.

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