A patient's journey

[Leslie]

Back in August 2009, a close girlfriend of mine had a bit of a scare. And then I thought, I haven't really done a breast check myself for a while. I did a bit of a check and I found a lump. So the next morning I booked  into my GP and went from there. I was diagnosed with lobular carcinoma, so lobular breast cancer. I then met with my oncologist, Ross Jennens. He explained to me the process post-surgery. So what sort of treatment I would need to go through, and it was at that point that he suggested that I might be eligible for a clinical trial.

[Dr Ross Jennens]

Well, when talking with Leslie about treatment options for hormonal or endocrine treatment for her breast cancer, we talked about the standard treatment at the time, which was Tamoxifen, a daily tablet for five years and I said to her, well, there's also a clinical trial available that you may well be eligible for. I always offer a clinical trial to a patient if there's a suitable trial available, because I think clinical trials provide patients with the best options.

[Leslie]

He did explain in great detail and he gave me time to go away and think about it.

My husband was with me at the time, so we discussed it at length and we just decided that if there was anything that I could do or we could do as a family to improve outcomes in the future, it was worth doing. And given I have a daughter, that was one thing that sort of made me consider the clinical trial.

[Prof Fran Boyle]

You should always be asking the question whether you're a GP or an oncologist or a surgeon. Where's the clinical trial that might suit this particular person?

Our breast cancer patients are involved in trials of different kinds of surgery, different forms of radiotherapy, drug studies, and also supportive care studies.

[Dr Ross Jennens]

So the soft and text trials were very large international studies to answer a very important question of what is the best hormone treatment for young women, premenopausal women diagnosed with hormone receptor or estrogen receptor positive early stage breast cancer.

[Prof Fran Boyle]

So around the world, and it was led by people in Australia. Researchers got together to say, well, how can we do a better job for those young women with breast cancer? And in particular by changing the way their ovaries work, shutting them down for a period of time, during that first part of their treatment, is that going to do a better job at actually keeping the cancer at bay?

Within Australia, most breast cancer trials are coordinated by a central group called the Australia New Zealand Breast Cancer Trials Group, and that interlinks us with researchers all over the world with whom we can work to solve complex problems such as Leslie's issues. The results of the trial have shown that for the youngest women and those at most significant risk for their disease, suppressing the ovaries does have a big benefit and it is now something that we would recommend as treatment.

[Leslie]

Once I signed up for the trial, my support team, my oncologist and the trial nurse and my breast care nurse, they were so supportive, very relaxed and it wasn't clinical, it was like they were as much a part of the trial as what you were. And I think just having that positive reinforcement all the time really helped me get through my whole journey, not just the trial itself.

[Dr Ross Jennens]

It's not just those patients on trials, but it's patients being treated in a centre that performs clinical trials as a whole. So clinical trials upskill not only the doctor looking after the patients, but the whole centre, because clinical trials have a very rigorous protocol that needs to be followed that then flows on to the rest of the treating community.

[Prof Fran Boyle]

Well, I think one of the things that motivates doctors every day when they sit in the clinic is that there are so many unanswered questions, and so every doctor will find every day they want to be involved in knowing the answers to more things, and it's clinical trials research that really allows them to participate in solving that difficulty for our individual patients.

I think the outlook of patients like Leslie has improved dramatically during the time of my working lifetime. I guess what I hope of  course, before I retire is that we've got even more options to offer, particularly women whose breast cancer comes back. Surely that ought to become a curable disease within the next decade. And so what we learn from patients like Leslie won't just be helping her, but things we might learn from the cancer sample that has gone back to the lab that she donated may help us in the future to help a lot more people rather than just the ones in her individual clinical trial.

[Dr Ross Jennens]

Well, if we didn't have clinical trials, our treatments would be exactly the same as they were 50 years ago, and that was pretty dismal. Mortality rates from cancer were very high. Very few people were cured from cancer unless it was diagnosed early and they had it removed with an operation. Clinical trials have given us the advances over the decades to improve those outcomes so that there are more and more people cured from cancer.

[Leslie]

Late last year, because I was finished on the trial and I was passed my 5-year diagnosis, I had to say goodbye to my oncologist and the whole team in there. And it was actually probably the most emotional I think I've been throughout my whole journey because they became such a part of my life. If there's any way, we can get rid of this disease or at least make survival rates better, then that was a really important part of my decision-making process.