WHAT’S IT LIKE TO PARTICIPATE IN A CLINICAL TRIAL?

The Importance Of Clinical Trials

In the past 20 years, the chance of surviving five years after a breast cancer diagnosis in Australia has increased from 73% to 91%.

It is thanks to the incredible advances in breast cancer research that we have seen these improvements in survival rates.

But without clinical trial participants these advances could not have been possible.

More than 15,000 women have participated in more than 80 Breast Cancer Trials clinical trials.

One of those women is Leslie Gilham, who was a participant in the TEXT clinical trial.

The TEXT Clinical Trial

TEXT was a practice changing study into the treatment of breast cancer in young women.

It showed that the aromatase inhibitor, exemestane, is more effective than tamoxifen in preventing breast cancer coming back in young women who also receive ovarian function suppression.

However, Leslie said she had not heard of clinical trials until her first meeting with her oncologist.

“We went through my treatment plan and he raised the possibility of there being a clinical trial that I might be suitable for and would I be interested?”

“So, I took away all the information for the trial and had time to consider it and weigh up whether I wanted to participate, and I did.”

TEXT was a randomised trial, with half the participants receiving Tamoxifen and half an aromatase inhibitor.

It also involved having triptorelin to suppress the patient’s ovaries and put them through menopause.
Leslie said she felt she was well-informed about the trial before signing on.

“I had a meeting with my oncologist who suggested the trial and he brought in the research nurse.”

“So, they basically went through the whole protocol for the trial with me and discussed it in detail and probably for around about an hour” she said.

“Then I was given the protocol and the informed consent to take home and consider and so I could go home and discuss it with my family, whether to participate or not, and then basically made the decision and came back agreed to participate. “

The Benefits Of Participating In A Clinical Trial

Leslie said she felt fully supported throughout the duration of her trial.

“Part of the trial was that you had to attend the clinic more often than the average patient.”

“I was also constantly receiving phone calls from the research team and I also had to fill out quality of life studies, so you’re sort of more aware of where you are at, and I guess the treatment itself.”

“I mean statistics show that people on trials do better than people off trial and I think that’s basically because you get more support from the team while you’re on trial.”

Leslie said although the support was an added bonus, her reasons for participating in a clinical trial was closer to her heart.

“I had a friend who was diagnosed five years prior to me and one the drugs, if she was diagnosed at the same time as me, she would have had access to.”

“But she didn’t have access to it, and I’m pretty sure she would not have passed away if she had access to that drug” said Leslie.

“So, I guess it brought it home to me, the importance of the treatments improving all the time and the survival rates improving as a result of that. So, I guess that and the combination of having a daughter.”

“I was very keen on playing my part to improving treatments and overall survival rates.”

Leslie said she is proud her participation in a clinical trial has helped inform practice for how breast cancer is treated in Australia and New Zealand.

“It was because of the (trial) data that was collected that they said it would now be the standard treatment or gold-standard treatment for my type of breast cancer.”

“I was a little bit proud because I thought, well it was worth participating and it was worth putting my hand up and hopefully making a difference to the future generations.”

Leslie recommends participating in a clinical trial to anyone who is provided the opportunity.

“When you’ve got a diagnosis, and you’ve got so many things going on in your head at the time, it’s good to be able to focus on something and I found that was a really good way of being able to get through my treatments.”

“But also, it’s that ability to hopefully make a difference.”

“The other thing that I found really important and really fulfilling was I felt like I was part of a team, being the research team.”

“They included me in every decision process. I always remember, other than the day I was diagnosed, the hardest day was saying goodbye to my research team after five years.”

Leslie Gilham is a past clinical trial participant and the current chair of the Breast Cancer Trials Consumer Advisory Panel.