Our trial participant stories
Val has been a participant in the Suppression of Ovarian Function Trial (SOFT) for 16 years.
In December 2005, Val was diagnosed with stage three breast cancer after finding a lump in her chest. She was 45.
Within two weeks of receiving her diagnosis, Val had a mastectomy on her left breast.
“It all happened pretty fast. It was ugly and awful, all that emotion came and went.”
After undergoing nine months chemotherapy and six weeks of radiotherapy, Val was asked by her breast surgeon and founder and chair of the Breast Cancer Research Trust, Mr Ian Campbell, if she would be open to participating in a clinical trial.
For Val, her involvement in the SOFT trial was a “no brainer”. The SOFT is being done to see if suppressing ovarian function plus giving tamoxifen is better at preventing the return of breast cancer than giving tamoxifen alone in younger women. It will also look at whether the hormonal drug exemestane plus suppression of the ovaries is better than tamoxifen alone, or tamoxifen plus suppression of the ovaries.
“I thought ‘let’s do what we can to help’. When Mr Campbell asked if I would go on the trial, I said ‘of course I will’. I didn’t hesitate at all.”
Val has a considerable family history of breast cancer. Val’s mother passed away from breast cancer at the age of 48. Her paternal grandmother also passed away from breast cancer, and her aunty (her father’s sister) has been diagnosed with breast cancer twice. As a result, Val and her family decided to undergo genetic testing and discovered a number of her family members carried BRCA gene mutations.
From seeing her mother go through breast cancer, to experiencing her own journey with the disease, Val understands the considerable advancements made in breast cancer treatments. Val knows that to continue the positive advancements in breast cancer treatment, research needs to happen. “The only way we are going to get better with this, and gain solutions and answers is by working together with research to get it right.”
In January 2019, Val was diagnosed with stage 2 breast cancer in her right breast after her annual mammogram. Again, within a week, Val had a mastectomy on her right breast. Val continued to be a part of the SOFT trial once she learnt of her second diagnosis.
“I was asked if I would do the next step if the trial, and I said ‘yes, definitely.’”
Val finds comfort in knowing that the Breast Cancer Research Trust research nurse is only a phone call away if she ever has a question.
“There’s been no time that I’ve ever regretted being on the trial. Being a part of the trial has helped me with awareness. It’s all about learning and information building and development.”
While her ultimate wish is for a cure of breast cancer to be found, Val’s hope for breast cancer research and future generations is to have a clearer understanding of the journey and have more answers and processes in place to make life easier for people living with breast cancer.
“I don’t want others to have to go through this if we can help it, or we’ve got ways of getting around it and finding answers to why this happens.”
And for Val, it’s also very personal.
“By participating in a trial, it might also mean that if my granddaughter is ever diagnosed with breast cancer, that she has a fighting chance.”
Marion is currently a participant in a lymph node grafting clinical trial. This clinical trial is aiding in further developing a new, less invasive surgical technique (lymph node grafting), to reduce lymphedema (arm swelling) in patients who have undergone breast cancer treatment.
Six weeks after receiving a clear mammogram result, Marion felt thickened tissue in her breast. After initially putting it down to hormones, her breast began to swell and dimple while she was on a trip in the South Island. However, the 2011 Christchurch earthquake meant she couldn’t get home for another four days.
“I spent three nights lying on the corridor floor of a hotel in Christchurch. At that point, I didn’t even think about my health. I was just focused on getting through the aftershocks. I think the situation gave me a feeling of not being able to control anything. I just had to try to relax.”
After undergoing an ultrasound, Marion was diagnosed with stage 3 invasive lobular breast cancer at the age of 54.
“Did I think I had breast cancer… I think I always knew I would get it at some point. There’s a huge history of cancer in my family. The first thing that popped into my head was that it was inconvenient… But one day there was a voice in my head that said ‘you are where you are supposed to be.’”
Having breast cancer encouraged Marion to explore the world. She and her husband walked across Spain, along the Camino trails and backpacked around Europe. They also spent some time walking Te Araroa trail with their daughter.
“It was a challenge that I built a lot of resilience from. Resilience I didn't know I had. I think it has set me up to face anything that comes my way in the future.”
Marion was open to finding options that could help reduce the lymphedema she had experienced in her arm for 8 years. After her sister-in-law, an oncologist, had mentioned the option of a clinical trial, and Marion read about the lymph node grafting clinical trial in a newsletter, Marion called Breast Cancer Research Trust research nurse Heather Flay to express her interest. She was accepted as a participant almost immediately.
“The lymph node grafting trial was worth a go, and an opportunity to do something good. Heather and the other nurses were wonderful, and the explanations throughout the trial process were always clear and easy-to-understand.”
Marion’s hopes for the future of breast cancer research is that it brings more light to the various types of breast cancer.
“It’s important that the various types of breast cancer aren’t lumped together. I hope the research gets rid of the myth that all breast cancer is the same. Different diagnosis and treatment techniques can be more effective for different types of breast cancer.”
Lisa was a participant in the NEON Trial. This international clinical trial is investigating whether an immunotherapy drug can help the body’s own immune system to fight cancer cells, in women with triple-negative breast cancer. The trial will determine if the drug is safe and effective in treating this type of breast cancer before surgery.
Six months after receiving a clear mammogram, Lisa felt a lump in her breast. After getting the lump checked by a doctor, and undergoing further scans, Lisa was diagnosed with triple negative breast cancer, a less common and more aggressive form of breast cancer. She was 49 years old.
“Two of my aunties and a cousin have had breast cancer before, so it didn’t come as a complete shock. I think everything happens for a reason. It was a wake up call and I knew I had to make some changes in my life.”
Lisa’s naturally positive attitude meant she focused on controlling what she could control. She took a holistic approach, working on both her physical and mental health. Lisa changed her diet, started implementing positive affirmations into her day and kept working hard at the gym.
“If life’s not going to challenge you, it’s not going to change you. Change can be for the best.”
When Medical Oncologist and Breast Cancer Research Trust board member, Dr Marion Kuper approached Lisa about participating in the NEON clinical trial, she was immediately open to the idea.
“I had nothing to lose. It wasn’t a hard sell.”
As a mother of three daughters, and a grandmother to twin girls, Lisa made sure to undergo genetic testing, which came back clear. The journey has brought an already tight knit family, even closer together. Participating in the clinical trial meant Lisa could contribute to improving the outcomes for future generations of women who are diagnosed with breast cancer.
As a participant in the clinical trial, Lisa felt taken care of through a personalised approach and supported by all of the medical team involved in her journey.
“I got treated really well. All of the nurses were awesome and they made sure things happened when they needed to. They took great care of me.”
Lisa’s results speak for themselves. Following surgery, examination of tissue showed there were no remaining cancer cells. She now has a new lease on life after realising how fast it can be taken away.
“Women, especially Māori women with big whānau, are so quick to care for others before we care about ourselves. It is our own responsibility to take care of our own health.”
Lisa knows that these kinds of improvements to breast cancer treatments and outcomes need research to continue.
“If things can be improved on, they should be. And that requires research. It is so important that the research continues, so the lives of women with breast cancer in the future can be improved.”
Kathy was a participant in the MonarchE trial for 2 years.
Because Kathy was aware of a family history of breast cancer, with her mother and two cousins being diagnosed, she made sure she always had an annual mammogram. Kathy was 52 when a routine mammogram in July 2017 showed an abnormality in her breast. After having a biopsy, Kathy learnt that she had invasive breast cancer.
“I had no idea because I felt fine. That’s why I think it was hard to comprehend. I didn’t really believe that it was real. But it showed me the importance of mammograms”.
After waiting a month to eventually receive an inconclusive result of her genetic testing, Kathy had a mastectomy in October 2017 and then underwent chemotherapy and five weeks of radiotherapy.
In a follow-up meeting with her oncologist, a registrar mentioned she might qualify for the MonarchE trial, which is run by the Breast Cancer Research Trust clinical team, because of the high risk nature of her breast cancer. Initially, Kathy felt slightly hesitant about participating in the trial.
The MonarchE trial is investigating the oral drug Abemaciclib to improve the outcomes in women or men with high-risk early breast cancer. This drug stops the production of proteins in the body called CDK4 and CDK6, which are responsible for promoting tumour cell growth. Abemaciclib has shown to have antitumor activity and significantly reduce tumour growth, including breast cancer.
“When given the opportunity, I thought ‘can I really do this?’. After I had completed all of my treatments, I almost felt like I was finished. I was quite drained.”
However, Kathy’s courage to help make a difference is what motivated her to participate in MonarchE.
“I looked at it differently. I was given an opportunity that could help me and other people.”
Being a part of the MonarchE trial has provided Kathy with some peace of mind.
“The regular monitoring that happens as a part of the trial gave me some security. They are very thorough.”
The continued support from the Breast Cancer Research Trust research nurse has also provided Kathy with some comfort, knowing it is no problem to text or phone the nurse if she is worried about anything.
Kathy also understands that being a part of a trial has not only benefited her now, but the knowledge and understanding gained from the research will benefit many women with breast cancer in the future.
"With a lot of the results coming back very positive, it makes me think I've been on the right path and I've been very lucky and hopefully helped make a difference"
Kathy continues to support the Breast Cancer Research Trust because she knows first hand the importance of their work.
“Without the funding, a lot of these trials can’t happen. The research is important. We've got to keep moving forward to help stop this happening to so many women, and save lives."
Jan was a participant in the FERGI trial. This international clinical trial investigated a novel drug for the treatment of a certain type of advanced breast cancer (also known as metastatic, stage 4 or incurable breast cancer).
In 2004, Jan was experiencing extreme fatigue, and after a knock to her right breast didn’t heal after two courses of antibiotics, she was referred to a breast surgeon. A mammogram revealed Jan had breast cancer in both of her breasts and she underwent a double mastectomy. Jan was 53.
While Jan knew her mum had breast cancer at a similar age, the diagnosis still came as a shock to her.
“They’ve got the wrong person… Why me?” Jan thought to herself.
In 2011, Jan discovered her cancer had metastasised to her ovary, and in 2012, Jan was diagnosed with advanced breast cancer. It was then when Jan’s Medical Oncologist talked to her about participating in a clinical trial.
When the Oncologist rang Jan the following day to discuss her decision, Jan immediately said yes. She had no hesitation in accepting the offer to be a participant in the FERGI trial. This was largely due to a conversation she had with her Breast Surgeon in 2004.
“He told me ‘if you ever get an opportunity to go on a clinical trial, take it.’ I stored that conversation. If he hadn’t planted the seed in 2004, I'm not sure what I would have done.”
Jan’s inner strength and determination to beat her cancer was also a big factor in her decision to participate in the trial. Her dad has always told her that she was “strong mentally and physically” and her results demonstrated this.
Jan responded exceptionally well to the trial drug called Pictilisib. She was the only patient out of around 360 women worldwide who went into complete remission, and this lasted for around six years. The Medical Director and a scientific staff member from Roche, the manufacturers of the Pictilisib drug, met with Jan and let her know that her response had inspired scientists to develop the drug Pictilisib further. Waikato Hospital is now a centre for a drug trial investigating a third generation of this class of drug in women with ABC (Pictilisib was a first generation drug).
Jan is now a strong advocate for clinical trials and encourages others who are looking at participating in one to simply “Do it!”
The Breast Cancer Research Trust played a big role in supporting Jan through her clinical trial experience.
“The research nurse and Oncologist were so supportive. I was able to ring and ask any questions at any time. They were always there for me and I felt like I was their only patient. It felt like I had a huge medical team behind me.”
A quote that Jan has resonated with Jan throughout her journey is “Don’t walk behind me; I may not lead. Don’t walk infront of me; I may not follow. Just walk beside me and be my friend.”Jan is thankful for her very supportive friends and family, as well as the Breast Cancer Research Trust, who have walked alongside her on her journey.
Jan hopes that in time, through research, a cure for breast cancer is found. She also hopes that more knowledge is gained and shared about what triggers breast cancer.
Sam’s Story - in Memory of her mother Chany
Chany was a participant in the FERGI Trial. After living with breast cancer for 15 years, Chany sadly passed in 2017.
Sam remembers her mum’s larger than life personality fondly, and the fact that she had to be “dressed to the nines whenever she stepped out of the house.” But when her mum stepped outside with her dressing gown on, she knew something wasn’t right.
When Chany sat her three young daughters, Jess, Sam and Krisy, down to tell them she had been diagnosed with breast cancer, they were just 12, 10, and 8 years old respectively.
“When Mum told us she was sick, we were young. But I knew I had to take on some more responsibilities.” Sam said.
Mothers are central to a family and a household. They often prioritise everyone else's lives before their own. Sam and her two sisters recognised this and made sure they did everything they could to make their mum comfortable.
“She had a bell she could ring when she needed anything. Most of the time she just asked us to play some music. Music was her happy place.”
Chany was a music teacher and a wonderful pianist. She would sit for hours on the piano at Waikato Hospital and share her talent with other patients and their families.
Sam and her sister’s feel proud knowing that their mum’s participation in a clinical trial is contributing to advancements of breast cancer practises and treatments today.
“The research that is being done is so important in making sure we are learning and bettering the options available to treat breast cancer and catch it early. I know Mum wouldn’t want anyone else to go through what she went through. That’s why my sisters and I are happy to support causes like the Breast Cancer Research Trust.”
The three girls also feel grateful for the support their mum, Chany, and their family received from the research nurses and medical team.
“The nurses were awesome, and kept mum in line when she wouldn’t listen to her daughters.” Sam said.
Sam understands through first hand experience the emotions that come with having a family member diagnosed with breast cancer. Sam mentioned the importance of talking about how you are feeling and asking for help if you need it.
“You go through the five stages of grief as well as the person with the cancer, and it is hard to cope with on your own. Don’t be afraid to ask for help. People want to help and support you too.”
Huia is currently taking part in the ABCpro Study.
Huia ensured she attended her annual breast screening appointments. Huia’s regular mammogram in 2020, which was delayed by a month and a half due to the Covid-19 lockdown, showed an abnormality in her breast. A scan and biopsy confirmed she had breast cancer.
In June and July 2020, Huia underwent two surgeries to remove the cancer and her lymph nodes. This was to be followed up with chemotherapy in August 2020 and in Huia's mind she was mentally preparing for this next stage.
However, a precautionary MRI scan revealed Huia’s breast cancer had metastasised to multiple places in her spine, and a rib. In August 2020, at the age of 53, Huia was diagnosed with advanced breast cancer and advised it was very treatable but not curable.
“It was a bit of a shock, because I thought I was going to be starting chemotherapy in August. I was definitely mentally preparing for that. It was a surprise because the pathway I initially envisioned had changed quite suddenly.”
After discovering she had advanced breast cancer, Huia was approached by medical oncologist and Breast Cancer Research Trust board member, Dr Marion Kuper, about participating in the ABCpro study.
The ABCpro study is introducing electronic reporting of symptoms and treatment side effects for women living with advanced breast cancer (ABC). Participating women complete a weekly survey on their symptoms and side effects. If there is a deterioration in either, an email alert is sent to an ABC nurse, who then contacts the woman to discuss how to manage the discomfort she is experiencing.
Being a part of the ABCpro study has provided Huia with a sense of support and peace of mind.
“For me, being a participant in the ABC study meant that I was going to receive extra immediate care and support. It feels like a wrap-around service.”
The ABC tool has enabled Huia to connect with an ABC nurse who provides her with ideas to help self-manage her symptoms and any side effects.
“I’ve built a really good rapport with my nurse, which has been great.”
Additionally, the ABC tool has aided Huia in connecting with specialists such as a physio, lymphedema nurse, and a dietitian, contributing to better quality of life.
Huia speaks highly of the ABCpro study, and the important role the regular surveys have played in helping her monitor and manage her symptoms and side effects.
“I have found over the years with full time working, after work family commitments and activities I haven't always taken the time to look out for myself. The ABC survey is a little reminder for me to check in on my health for the week.”
Huia hopes that other people living with advanced breast cancer can benefit, like she has, from the ABC tool, and improve their quality of life through ongoing and consistent monitoring and management of symptoms and side effects.
“I’d encourage anyone with advanced breast cancer to try using the weekly ABC tool, as it may nip any issues in the bud quickly. I hope that they continue to progress with this tool and others will have this option available throughout Aotearoa."
Huia understands the significant impact that research can have on the advancement and progression of breast cancer treatment and is a firm believer in supporting a cause such as the Breast Cancer Research Trust.
“Any work that the Breast Cancer Research Trust does that is going to give women and/or men longevity and quality of life living with an incurable disease is certainly well worth supporting."