Participating In The FINER Clinical Trial

Madelaine was diagnosed with advanced breast cancer in her shoulder, neck and lymph nodes.

“I was given information on the FINER clincial trial and I was very much interested after reading the information and what it involved, I also discussed that information with my family and friends. I decided to participate in it because I felt that it was the right thing for me to do in regards to the type of therapy that was available because it basically had a base drug and it also had a placebo too,” she said.

“So, it was a little bit of a mystery as to whether or not you’re getting the real trial drug. But at the end of the day you’re getting a base drug to make sure that you were being covered.”

The FINER clinical trial aims to find out if cancer will remain under control for longer in patients with advanced ER-positive and HER2-negative breast cancer.

Madelaine was offered a place in this study and didn’t hesitate to join.

“Luck happened for me when I was diagnosed in 2008. There were therapies available where I had an excellent quality of life for 10 years and now, I’m back at the same table with another issue, and I feel in my heart of hearts it’s time to look at participating in a trial for me and for others for the future. I feel that the FINER trial is best suited to me.”

“I heard about the FINER trial through my oncologist when I was diagnosed and my cancer had returned, and that it was being a little bit aggressive – naughty cancer that it is. We looked at options, different types of therapies on the table that would be suitable to me, but the one that caught my eye was the FINER trial and all the information was handed in written format.”

“We sat down and had many discussions and that gave me the opportunity to go away, digest the information, have those conversations with my family and ideally at the end of the day I made the decision to participate.”

“I have since been on the trial for approximately five months and my health and well-being have been absolutely fantastic, touch wood, and all of my reports are coming back absolutely wonderful. The doctors are very impressed and so am I. I’ve had that evidence, I get to see my reports, so everything’s transparent and I get to see what’s actually happening.”

“The beautiful thing is if I have questions or concerns my oncologist is always there, and I can approach him at any time. So, I felt very, very comfortable through the whole process and I encourage and urge every woman out there to think about at one stage participating in a trial if they have that opportunity.” she said.

The Importance Of A Supportive Care Team

Madelaine discussed the importance of having a supportive oncologist who listens to your concerns.

“Well, he has his serious moments because he’s a doctor. However, he also can keep the conversation quite light, and he’s been able to deliver information to me slowly and informatively so that I can understand it and take it on. That’s been a beautiful thing to have a doctor that has that care factor. He listens to my concerns and addresses them straight away, so I don’t have that opportunity to make things bigger than what they really are.”

“There’s one thing I’ve learned that is – worry about it when it happens. So, don’t think or take on board the stories that you hear from other people. You are unique, you are an individual person and it’s how you look at life, how you stay positive, who you surround yourself with and having that will to stand up and say, not today, I want to have quality of life.”

“So, you do whatever you need to do within reason of course, to maintain that quality of life and one of the things that is meaningful to me is participating on this trial. It’s given me the opportunity to give back for all those women previously who participated in trials,” she said.

“The medication today that I have, I say a big thank you to them, because it wouldn’t be at that stage that it is now. So we urgently need people to come along and consider the information and start to investigate by having those conversations with their oncologist and make those decisions as to whether or not they’d like to participate for the betterment themselves and their community at large, and for everybody else for the future of the world.”

Madelaine’s Hope For The Future

Madelaine participated in a clinical trial for herself and for the greater good of all breast cancer patients.

“Well, I’d like to think that I’ve added value by coming along and participating in these podcasts and video sessions. I’ve had a very extensive proactive life, and I’ve been very blessed. But to do this is such an honour really because it allows me to give back and say thank you.”

“I’m just so happy that I’m here today to do that for you.”

Being Diagnosed with the BRCA1 Gene Mutation

Katharine and Skye had never met each other but they shared something in common. Both women carry the BRCA 1 gene mutation. This is an inherited gene which increases their chances of developing breast cancer by 70% and ovarian cancer by 40%.

Until now life changing invasive surgery and regular breast screening have been the only options available for women like Katharine and Skye. However, the BRCA-P clinical trial aims to open up a new prevention option for women with this gene mutation. Learn more about participating in the trial here.

BRCA-P is a prevention trial which is testing the effectiveness of a drug called denosumab in preventing breast cancer in women who have a BRCA1 gene mutation. We met with Katharine and Skye to find out how their participation is going and how they found out about this gene mutation.

“My name is Katharine. I was diagnosed with the BRCA1 gene mutation at the start of 2020 when I was 41.”

“My name’s Skye. I found out I carried the BRCA1 gene mutation when I was 25 years old. So yeah, it’s been quite a while.”

“I got tested because a distant family member had been tested for the BRCA gene, and it’s said at the bottom of the form that family members should possibly get tested. So I went ahead and spoke to staff at the Peter MacCallum Cancer Centre and they went ahead and did the test and I came out positive for the gene mutation,” Katharine said.

“I originally got tested for the BRCA mutation after my Auntie was diagnosed with breast cancer. She was 47. And then when my cousin turned 30 and she was diagnosed with breast cancer in 2013. So, all of my family started getting tested at that point which included myself and in 2015 I found out I carried the gene mutation,” Skye said.

Initial Thoughts Following Their BRCA1 Diagnosis

“My initial reaction was I was perfectly fine because I basically thought I would have that because my father had died of cancer not long ago. It was probably an hour later that the shock probably hit and then I went ‘now I’ve got to think about what I need to do with my life now I’ve got this because there’s going to be surgeries and drugs, you know I’ve got to look after myself and make sure I don’t get cancer’,” Katharine said

“But I’ve been pretty calm about it all I think because knowing that I’ve got the gene mutation, I’ve been very proactive in doing testing. I make sure I’m doing my screenings every year just to keep on top of it so that you can catch it in time, or get surgeries when I need to get surgeries, and yeah I’ve been pretty relaxed really.”

“I think when I first found out that I carried the gene it was quite a shock but when we were initially in the appointment, I was cool, calm and collected and then as soon as that appointment finished, I just burst into tears,” Skye said.

“I think it was a good year or two until it just started to become more of just normal life, and think, ‘this is just you’re testing week, you’re just going to get your test this week, and you’re going to get your MRIs’. And then the rest of my life just went back to some sort of normality. But I still do get quite anxious and even like a little bit depressed the week leading up to my tests and I guess the week leading up to the results.”

“So, it still does have a little bit of an effect. But for the most part now just normal day to day life, but not overly fun initially finding out.”

The Benefits Of Participating In A Clinical Trial

There are many benefits to participating in a clinical trial, such as the potential to access a new treatment and helping to further research into breast cancer. Another lesser-known benefit is that those who participate in a clinical trial often get more time with their treatment team.

“I heard about the BRCA-P clinical trial through my breast surgeon, she was actually giving me a few options of trials and another drug and this was all happening during lockdowns in Melbourne. So we were doing a lot of telehealth appointments and things like that and then she just mentioned this one and she thought this would suit me a lot better because I was a bit worried about surgery,” Katharine said.

“This is a five-year trial, and I don’t have a lot of breast cancer in my family so I’m not hugely concerned as such. So I thought I could at least give myself five years rather than do direct surgery and have everything removed. So I just heard through the Peter MacCallum Cancer Institute through a breast surgeon and she’s the first one who got me onto it.”

“Yeah, so I heard about the clinical trial from my surgeon. We were just at one of our appointments, but it was only maybe two years ago that I first heard about the trial. I’m 32 now so it’s been quite a while of not having any other information in terms of options,” Skye said.

“There was only mastectomy and hysterectomy as options, I didn’t think there was any other path to go down. So to learn that there was a potential path that means that you may not have to go through these really invasive surgeries, it was really great to hear.”

Participating in the BRCA-P Clinical Trial

Until now, life-changing invasive surgery and regular breast screening have been the only options available for women like Katharine and Skye.

“I decided to participate with the BRCA-P trial just because I’m very cautious about having surgeries and I’m scared of hospitals at the best of times. But researching the surgeries, well especially the DIEP Flap, which my surgeon had recommended, it really scares you. The photos are online of the aftermath and just the scarring. I was a bit scared of doing that,” Katharine said.

“So, when this became an option, I definitely thought yes I’ll do a trial. It’s only an injection in your stomach once every six months, and you get a bone density scan, you get your MRIs and all of your scans done, so everyone’s looking after you.”

“I think I decided to participate in the BRCA-P trial because why not? There really wasn’t any risk factors that were worrying in the trial, and there is just a plethora of potential benefits. I personally won’t really find out if I had any benefit of the trial because we won’t get that information for a long time, so I will still go down the route of mastectomy and everything else,” Skye said.

“But it’s nice to know that future generations may only need to deal with a simple injection every couple of months.”

Family Support & Being Proactive

“My family were perfectly fine. I think it sort of pushed everybody to be proactive themselves and get the tests done, so my Aunts and Uncles all started getting themselves tested so then they can work out whether their children then needed to get tested,” Katharine said.

“My cousins have all gone out and got themselves tested as well, and some of them are positive, some of them negative. So yeah I think it’s been pretty good within our family that we’ve just got the knowledge. We’ve just gone ahead and make sure we’re getting everyone’s tests and everyone’s looking after themselves and being proactive about it.”

“So, when I found out I had the gene, my family was really supportive. I don’t live with my biological family so, they didn’t have to go and get testing done. They didn’t have to worry about the same thing, so, it was nice to have that support from them but at the same time, I guess I didn’t really have anyone in my family that understood what I was going through either. So that part was a little bit hard, but overall they were just very supportive and just wanted to see what I needed,” Skye said.

Skye & Katharine’s Hope For The Future

Skye & Katharine participated in a clinical trial for themselves and for the greater good of all breast cancer patients.

“I think it’s important to help out with clinical trials by donations and by taking part in clinical trials, because if we don’t get this knowledge on different ways of treating or different ways of preventing certain diseases, we will be just stuck in just doing surgeries,” Katharine said.

“This is going to help so many people if it just comes down to a simple drug. So by donating it’s going to help them pull their resources out even further and get more things out there, and options for people rather than just going straight into surgery.”

“So, any sort of research into cancer is just phenomenal, but to do that research, you need donations. So everyone, we need people to donate to this sort of research and we need people to promote it, so then people know that there are options out there and you can do things like a clinical trial to not only help yourself, but potentially help future generations,” Skye said.

Ben & Michael’s Introduction into the Racing World

Ben and Michael Kavich are brothers and race car drivers, who are asking you to support lifesaving breast cancer trials research by donating to Race for a Cure. Race for a Cure was founded by Ben’s wife, Toula, after she was diagnosed with breast cancer following the Bathurst 6 Hour in 2016. Toula’s disease shocked the Kavich family who had already lived through the harrowing impact of breast cancer after Ben and Michael’s grandmother and mother were diagnosed.

Having had their lives disrupted too many times by this insidious disease, the brothers wanted to use their passion for motorsport to help spare as many families as possible from the heartache and loss caused by breast cancer.

We asked the brothers to explain a bit about their introduction into the racing world.

“Our father raced when we were younger touring cars, basically against the likes of Dick Johnson and Peter Brock and in that era, mostly local Sydney stuff, a little track called Amaroo Park, not far from where we’re sitting now,” Ben said.

“But his main focus was the Bathurst 1000 which he competed in from about 1982 I think it was, to 1988 and various other forms of motor racing.”

“So yeah, that was our introduction to it as kids at about ten.”

“Obviously through dad’s business we grew up on a bit of property too. So he would bring old wreck cars home and we would tinker with those cars and we would use them on the property that we had. They were probably actually called paddy bashers,” Michael said.

“That was our introduction and our formal training in terms of how to drive and things like that. I think we were no more than probably eight and ten or something. So we developed obviously a love for the sport from viewing our father race and obviously meeting the likes of those heroes of that era as Ben mentioned, Peter Brock and Dick Johnson.”

“So that’s who we looked up to, and our rooms were plastered with posters of race cars everywhere.

“And at the time when dad was competing, the people looking after his car was the team that Allan Grice was involved in. So Alan Grice became a bit of a hero as we spent time as children at the tracks following all those people around, but he was a very cool guy,” Ben said.

A Breast Cancer Diagnosis Close to Home

Ben and Michael started Race for a Cure, after receiving the devastating news that Ben’s wife Toula had been diagnosed with breast cancer.

“So essentially, we had competed in the 2016 6-Hour I think was the first one we did. A couple weeks after that my wife was getting checks done and that had been happening for a few months prior, and she was diagnosed with HER2-positive breast cancer,” Ben said.

“So that threw us for six pretty much at the time. The proceeding sort of 11 to 12 months up to the next 6-Hour was pretty hard.”

“But you know, at different times we’d sit down and try to talk about different things and do different things to deal with the situation. Toula my wife came up with the idea of Race for a Cure when we were sort of, talking about the about the 6-Hour that we were going to do again.”

“And I said, you know, we’d like to do something that is a bit different and helps the community and she came up with that idea basically.”

“She’s very creative, her marketing background kicked in didn’t it? She’s always been like that. She’s has a real flair for it,” Michael said.

“Yes, so that’s where the idea came up and we approached Breast Cancer Trials to see if they would jump on board, which they have been very supportive all the way through and yeah, that’s how it initially started,” Ben said.

The Importance of Supportive Family & Friends

Ben’s wife, Toula was diagnosed on ANZAC weekend of 2016 and he describes the shock that they felt after receiving this devastating news.

“There was a massive shock, it was really difficult to deal with.”

“Looking back on it now, it’s a difficult situation to deal with because you don’t know anything about it. So we focus on obviously raising money and awareness for Breast Cancer Trials and the work they do and their supporters do to support people going through it as well.”

“And that’s very important because when you don’t know where you’re going, it can be very scary, but when you get that comfort that you’ve got people around you to help you, it becomes a bit easier to deal with and that’s what’s happened,” Ben said.

Unfortunately for Ben and Michael, this is not their first encounter with breast cancer. They’ve watched their mother and grandmother also battle the insidious disease.

“Yeah, obviously, I mean, grandmother was diagnosed first you know, and then seeing obviously mum and Toula, and actually my mother-in-law as well, she resides in the UK, but obviously seeing my wife and what she had to go through. You feel helpless as a partner, as a son, a grandson, you’re not sure what to do,” Michael said.

We’re lucky that it was Ben and Toula and obviously their initiative with Race for a Cure, that put us on to Breast Cancer Trials.”

“And I might add, that treating oncologist Professor Fran Boyle has been a massive part of obviously of what we’ve been going through, you know, and initially that’s how we heard about Breast Cancer Trials was through her involvement,” Ben said.

“And going back to your question about how you deal with it and how does it feel, the work that BCT does, but also the work that she’s put in and the help we get from her is massive too.”

Ben & Michael’s Hope For The Future

Since starting Race for a Cure, the brothers have raised close to $130,000 for Breast Cancer Trials and they agreed that the support they continue to receive is more than they ever imagined.

“When it was first launched in 2017, we had a majority of the support come from our business suppliers and the support was more than I expected and so was the support from the public, even at the track. Then the ongoing support from both the public and our suppliers and our employees and corporate Australia and in particular Yellow Pages has been far more than I thought,” Ben said.

“There’s another level, I think we could take this to long term, particularly the corporate world that I think could provide even more support, it’s just a matter of trying to balance the family life with the business life and everything else that becomes difficult, but I am surprised at how much support it’s received and thankful for it.”

“But I think after the experience we’ve probably both had, you’d agree Michael that there’s probably more to come.”

“I think so, yeah, there’s obviously, even just within the motorsport community, we’ve had a lot of support from people, other competitors, and I think motorsport is, when you talk with sporting arenas, the community itself is a very, very close community, everyone knows one another and knows someone who knows someone,” Michael said.

“And BCT also because people forget in the background, they’re doing a lot of work on PR and getting the message out there that it’s happening, and running donation pages and all that works there’s, that’s work that they put in has a cost for them. So, you know, the more support they get, the easier it is for them to cope with those costs,” Ben said.

“Yeah, and obviously Kate this year, she was up at Bathurst with us, and she just did a great job for us, it was amazing, and it was great to have her on board and the amount of work that she put in and all the girls back at BCT HQ, it’s great,” Michael said.

“Yeah, it’s a united affair basically,” Ben said.

Participating In The Breast MRI Evaluation Study

Laura was diagnosed with invasive breast carcinoma.

She underwent months of treatment, including a lumpectomy, four cycles of chemotherapy, a mastectomy and hormone therapy.

The Breast MRI Evaluation Study aims to find out the best way to use breast Magnetic Resonance Imaging (MRI) and if it will improve treatment options and patient outcomes, in women recently diagnosed with breast cancer.

Laura was offered a place in this study and didn’t hesitate to join.

“I heard about the Breast MRI Evaluation Study by talking to my surgeon, and I am, I work in research myself, so I was interested in being a participant seeing the other side of research.”

“So when I was meeting with my surgeon, I asked her are there any research studies available through this hospital and she put me in touch with the research coordinator of the Breast MRI Study.”

“I took it from there with her and there was a really positive experience being able to form a relationship with the research coordinator. We’re on really good terms texting each other, and she was checking in not just to follow up with me for follow up assessments but just to see how I was which was really nice.”

The Benefits Of Participating In A Clinical Trial

There are many benefits to participating in a clinical trial, such as the potential to access a new treatment and helping to further research into breast cancer. Another lesser-known benefit is that those who participate in a clinical trial often get more time with their treatment team.

“I have experienced quite a few benefits from being involved with the study, I had more one on one discussions with my surgeon, so I kind of felt like I had an extra layer of care, an extra layer of oversight by being involved with the study.”

“So not just being a patient but also being a participant, I feel like I got a little bit of extra care and I felt more involved with my treatment plan because I knew why I was doing what I was doing.”

“Research doesn’t always have direct benefits to the participant, but what you are almost always guaranteed is to have an involvement in contributing to the advancement of knowledge in the area and I think that’s really valuable and actually quite a cool thing to be able to say that you’ve been a part of.”

The Importance Of A Supportive Workplace and Hobbies

Laura continued to work throughout her treatment but said it wouldn’t have been possible if her workplaces were not as supportive as they were.

“Since my diagnosis, I have had to take some leave from work firstly after my initial surgery, then when I was going through chemo, I took the first week of chemo off when I knew I wasn’t going to be feeling very well.”

“The week following that, I was lucky enough that I was able to work from home, so I didn’t need to worry about the commute, and I didn’t need to worry about people being unwell near me when I was at a lower immunity.”

“And then in the third week, because I was having chemo every three weeks, when I was feeling a little better, I had the option of going into work if I did feel up to it, or just continuing to work from home or taking more sick leave if I if I needed to.”

“So, I was lucky enough to be pretty well supported by my work and by the girls in my team.”

Unfortunately for Laura, running is one of her biggest hobbies for both her physical and mental health. However due to her treatment, she hasn’t been able to “get out there and hit the pavement”.

“It just didn’t feel right for me at this stage, and I just wanted to listen to my body to see what would work best for me and running, wasn’t it unfortunately.”

“That was kind of tough that I wasn’t able to do the thing that helps me to deal with this when I was going through something like this, but it’s fine and I’m looking forward to getting back into exercise now that I’m finished active treatment.”

Laura works as professional researcher at the Florey Institute of Neuroscience and Mental Health, and understands how valuable clinical trials can be.

“I am really passionate about research and I think it’s the only way that we can advance our knowledge in the area.”

“The Breast MRI Study was introduced to me and I really liked the sound of it because the idea is that at the moment the government are funding Breast MRIs for patients whose clinical examination doesn’t match what the mammogram says.”

“So for me as a younger woman, my lump didn’t show up on my on the mammogram so it was important to be able to have that extra layer of imaging with the MRI to create my treatment plan to see what was going on in there.”

“But this the funding from the government for breast MRI is limited and the government want to know well why are we doing this? Is this helpful? What are we finding from it?”

“The only way we know that is to do research and find out how it is affecting people’s treatment plans, to know if they should continue to fund it and for more people.”

Laura’s Hope For The Future

Laura participated in a clinical trial for herself and for the greater good of all breast cancer patients.

She said that although research doesn’t always have direct benefits to the participant, you are almost always guaranteed to contribute to the advancement of knowledge in that area.

“I definitely would recommend to other people to participate in clinical trials, it’s a way that you can have the extra contact with your doctor to be able to help other people in the future who are going through this”, said Laura.

“Unfortunately, research does take money to complete, so for my study it does, you know, MRIs aren’t cheap, and we need funding for participants to be able to have these MRIs.”