Elissa Simms is a mum of two daughters, 20-year-old Brynn and 17-year-old Ella, who enjoys spending time with her family and walking her dogs Kalua and Lottie. In March 2024, Elissa noticed a strange sensation in her breast. At the time, she was seeing her GP frequently, as she was dealing with a frozen shoulder and thought the two might be connected.
Unfortunately, after being sent for an ultrasound, she was diagnosed with breast cancer. We spoke with Elissa about her diagnosis, navigating breast cancer, and her participation on the OPTIMA clinical trial.
“So, I was actually not working at the time because I had my frozen shoulder, which was affecting my left shoulder, so I was on a return-to-work plan, and I just had this very unusual feeling in my chest and I was on fortnightly visits with my GP.”
“I mentioned it to him, and he sent me for an ultrasound straight away. I did ask if it could be related to my shoulder, which was told was a very firm ‘no’. I went for an ultrasound within the week and I was back in the doctor’s office the day after I had my ultrasound to be told that it was breast cancer.”
“So yeah, I suppose it was a bit surreal at first. That was early March 2024. And I didn’t really tell my family at that stage. I’ve got two older brothers, and I told my eldest brother because I got him to come to the initial appointment with the surgeon with me. And I told my middle brother as well, but I didn’t tell my children or my mum at the time.”
“Mum had been through a journey from 2018 to 2021 with dad, with a cancer diagnosis. So, I didn’t want her to be worried by it. So, it was a shock in one way, but I also thought very positively of it. I had a friend that I used to work with, and she’d had breast cancer. So, I’d sort of been along the journey with her, and she was telling me what had gone on etc.”
“I didn’t know to the full extent, and she didn’t tell me the full extent about her treatment. She could give me enough information where I could remain positive. And seeing her well after all her treatment, helped me to remain positive.”
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We spoke with mum of two, Elissa Simms about her breast cancer diagnosis, navigating breast cancer and her participation on the OPTIMA clinical trial.
How did you tell your family and friends about your breast cancer diagnosis?
“I told my children first and I tried to make it as positive as possible. I did say to them I’ll have to have surgery, but they also know my friend Sheree, and I said to them, there’s so many good things coming with breast cancer research nowadays, like improved survival rate etc.”
“So, I sort of said to them, Sheree’s gone really well in her treatment and she’s doing well at the moment. And also, my oldest daughter, Bryn, her best friend’s mum also had breast cancer. And so, they were able to relate to those people and see that they no longer have breast cancer, or have been treated for breast cancer and are living happy, normal lives now.”
“I did tell them that I hadn’t told Nan yet and they knew my Mum sort of frets a bit. So, they came down with me to tell Mum. So, I sort of went into her house and said, I’ve got something to tell you. And I just said to her I’ve had a few appointments lately and I’ve actually been diagnosed with breast cancer, and I need to have an operation.”
“I told her when that would be a week or two after I got my diagnosis. And surprisingly she was totally different to what I thought she’d be. She was very positive, which I didn’t expect at all. And so, she came to my appointments and supported me in that way.”
“The toughest thing, I think, is not knowing what treatment would be like. My dad had chemotherapy, but he’d been able to work all the way through it. And he was always really stoic. So, I sort of had that impression that that’s how my journey would be.”
What was your biggest fear when you were diagnosed with breast cancer?
“Probably being unwell and needing help with my daughters. So, even though the eldest one is 20, the youngest one has a few issues. So, I was just a bit worried about them coping with it in the long term and seeing me go through the treatment. And, yeah, if I wasn’t well, which I wasn’t to start with, then how that would impact them.”
Where are you currently up to with your treatment?
“So, in terms of my treatment, I had my surgery in mid-March 2024. The margins for the lump in my breast weren’t clear, so I had to go and have more surgery. And I had lymph nodes taken out from under my arm as well. Then when I was talking to the surgeon about the second surgery, she mentioned the OPTIMA trial and said that I’d be a good candidate for that. She then referred me on to Dr Nick Zdenkowski to speak to him about that trial.”
Why did you decide to participate in the OPTIMA clinical trial?
“I wasn’t keen to have chemotherapy because it had affected my dad’s heart and that’s what he eventually passed away from, from heart failure. So, that was my main concern about chemotherapy, was having heart issues like he did.”
“His heart was perfectly fine before he had chemotherapy, in saying that he was in his 70s as well, but he was a very fit man and still working full time. So that was my greatest fear. So, when I sat down and spoke with Dr Zdenkowski, he told me what the trial was and how it worked.”
“So, you could be in either stage one or stage two. It was all randomised. He told me that not all women needed to have chemotherapy. There is a belief that not all women may need chemotherapy. And that this trial is looking at whether some women could have a better outcome if they didn’t have to have the chemotherapy and the side effects of it.”
“What I was thinking about when making my decision about the OPTIMA trial was, if I didn’t have the chemotherapy, what that would mean. Even though I was worried about having the chemotherapy. The notion that it was a trial, which I’m very open to, also made me wonder how effective the treatment was.”
“And I was also curious how they randomised the people going into the trial. I spoke to my mum a fair bit about it, and my eldest daughter a fair bit about it, about what my thoughts were, the fear of if I didn’t have chemotherapy, what would happen? Or how good it would be not to have to have chemotherapy after what happened with my dad. But I decided to go ahead and left it to see where I’d be randomised at.”
“If the trial is going to be successful, and if it’s going to be a new way forward for women, or even my children when they get to an older age, of having that choice to not have to go through chemotherapy, and have all the adverse effects from that, I think it’s a great benefit.”
Why do you think clinical trials research is so important?
“For me, it was about thinking of the future generations and what they could benefit from it. With my dad going through chemotherapy, his main thing was the heart issue after he’d had the drugs. So, he still went to work, he still worked full time. He still was quite active, and it never affected him with the side effects of nausea or bone pain.”
“He did get neuropathy, which did affect his feet. And he ended up with lymphoedema from the chemotherapy. I hid all the side effects, and I was very unwell on the chemotherapy to start with, and I ended up having my journey shortened with what they call the dense dose.”
“I lost 10 kilos in six weeks, so a decision was made, and I was very nauseated, couldn’t get out of bed. I was lethargic, unable to sort of get out of bed and have a shower most days.”
“It was a horrible thing, and I was just lucky enough that my medical oncologist listened to me and saw how much it had affected me, and we went down a different pathway and sort of changed my plan with the chemotherapy.”
If there was the opportunity to remove our reduce the need for chemotherapy in the future, how important do you think that is for patients?
“I think it’s very important. If you to try and maintain a good body weight whilst you’re undergoing chemotherapy and to eat normally and have high protein meals. Having the choice to do the OPTIMA trial and being able to maintain their health in that way, I think there’d be a better outcome for people, or women in particular, to not have to have the chemotherapy and not have to have that worry of what the adverse effects are.”
“I think that women probably should think about clinical trials because there has been so many great things that have come out of previous trials and if they don’t sort of put themselves out there to try something, then we’re not going to know how good it could be or how it sort of increases the quality of life.”
“I think a lot of people might be scared to go with clinical trials because they don’t understand the process, or they don’t understand that it’s all already been rigorously looked into and has to be approved before the trial even gets off the table. And I think that scares a lot of people and they just think they want to go with the old way of how things are done.”
What are your hopes for the future?
“Just getting on with life, getting back to work, getting out there a bit more, being able to enjoy spending times with friends and family, not being so tired, and I’ve actually got a cruise booked with my friend that had breast cancer previously, so I’m looking forward to going on that adventure with her and celebrating that we’ve both got through this disease.”
“So, I’ve had chemotherapy, I’ve had radiation therapy, and I’m now on another clinical trial called CAMBRIA-2, which is an endocrine therapy. So, I’m now participating in that, which is another one that Dr Zdenkowski is doing. And I was randomised to take the drug on that one, which instead of just inhibiting the oestrogen, getting into your cells and causing more breast cancer, it degrades the oestrogen. So, I’m looking forward to a better outcome with that.”
