Two days before her 39th birthday, Melissa Irving felt a lump in her left breast. “My husband and I had started a fitness regime and I thought I might have pulled a muscle,” she says. “I inspected myself in the shower and I remember thinking, ‘I don’t think that little lump is meant to be there.’ ” Irving was shocked when she was diagnosed with breast cancer. A mother of two from the NSW central coast, she was fit and healthy, with no family history of breast cancer.
In the first meeting with her surgeon, Irving was told she was eligible to participate in a breast cancer trial where chemo and hormone therapy would be combined before surgery to reduce the size of her tumours, helping conserve as much of her breast as possible. “The standard method is to go straight into surgery but I opted for the trial,” Irving says. “The hormone and chemotherapy beforehand shrunk my tumours so I ended up with a lumpectomy rather than a mastectomy.”
Oncologist Fran Boyle says many women with breast cancer are surprised when they are offered the chance to participate in a clinical trial. “We tend to associate clinical trials with desperate situations – that you’ve run out of options,” says Professor Boyle, who chaired the Breast Cancer Trials board from 2012 to 2015. Breast Cancer Trials is the largest independent oncology clinical trials research group in Australia and New Zealand, and has been responsible for major developments in breast cancer treatment and prevention for more than 40 years.
Most of the trials Boyle is involved with are the final step in testing before a drug goes on the market. “It means we already know a fair amount about the drug, the dose and its side effects,” she says. “What we are doing is comparing it with standard treatment. In many of our trials, half the women will get standard treatment and the other half will get standard treatment plus an extra something. No one misses out.”
Boyle says most patients are open to participating in a trial. “Many women have strong motivation to help others – they think of their daughters or sisters.”
This was a factor in Leslie Gilham’s decision to participate in a trial when she was diagnosed with breast cancer in 2009. “It was exciting to be part of a new treatment and I knew the trial treatment wasn’t going to be less effective,” says the 53-year-old Melburnian. “Plus I wanted to take part in something that might help treatments for those in my daughter’s generation.”
As a result of the trial that Gilham participated in, the drug Estramustine is now standard treatment for post-menopausal women. “It was really fulfilling to me that out of a bad situation, I was able to be part of that process,” Gilham says. Being in remission is the best outcome she could wish for, but she says there was something special about being part of the trial. “The treatments were confronting but the extra support you have by being on a breast cancer trial is so good,” she says. “You have to attend clinics more often and you develop such good relationships with the nurses and doctors. You really become part of the team.”
For women contemplating signing up to a breast cancer trial, Professor Lina Ricciardelli from the school of psychology at Deakin University says it’s important to recognise that different people have different needs. “Some women don’t want to talk about it. This can be hard for their family and friends, but needs to be respected.” She adds that both formal and informal support can be helpful for women participating in a trial. “There are many helpful strategies such as relaxation, hypnosis, cognitive behavioural therapy and mindfulness, in addition to healthy behaviours such as exercise and sleeping.”
Irving, who is also in remission now, is a strong advocate for clinical trials. “They are so important because it’s their mission to find better treatments and outcomes for women,” she says. “It’s a physical thing to have breast cancer but it’s a mind game to stay positive, and trials give us hope for a new future.”
What to do before signing up for a clinical trial
• Ensure that there is an independent committee overseeing the trial.
• Find out who is funding the trial.
• Speak to others who have participated in clinical trials about their experience.
October is Breast Cancer Awareness Month.