Here are some personal stories from people who have shared their experiences with clinical trials and research.
When I was diagnosed with non-Hodgkin lymphoma in 2006, the drug rituximab wasn’t available for a patient’s first line of treatment. However, a worldwide trial was being conducted to compare the outcomes of patients who no longer had active lymphoma after receiving rituximab.
My haematologist suggested I join this trial to get rituximab immediately, rather than wait until my other treatment options had been exhausted.
I got a second opinion from another haematologist and he also recommended the trial. There was a lot of patient information to read, but my brother read it too, which was helpful.
The clinical trials nurse looked after me every time I went in for treatment. I had chemotherapy and then rituximab, and after a few months I went into remission. Then I began the experimental part of the trial.
One group of patients was given a maintenance dose of rituximab and had check-ups every three months. The control group just had check-ups every three months. I was in the control group, so was observed until the cancer came back. At that point I came off the trial.
During treatment and for the check-ups, I had to have a physical examination, blood tests and an interview about my general wellbeing. It was good to be monitored so often, especially as I didn’t have to pay for any of these tests.
I had to travel overseas at one point. As it was a worldwide trial, I was able to attend a clinic in the UK to have my regular three- monthly check-up.
It was worthwhile going on the trial because I was able to have the rituximab straightaway. I also felt by participating in the trial I was contributing to finding a cure for this particular cancer.
After I was diagnosed with breast cancer, I asked if there were any clinical trials I could go on.
One was assessing how effective a pain-relieving inhaler was for women having a sentinel node biopsy, which was the procedure I needed.
I felt that the trial was low risk and I had the potential to receive some useful extra treatment. It required an overnight stay in hospital to have the biopsy and treatment, and to be monitored.
I had to fill out questionnaires about my emotional and physical wellbeing on the day of the trial and the following day. This gave me something to do and I felt that I was actively participating in my own health care.
The study was blinded and we were randomly assigned to get either the experimental treatment or a placebo. I don’t think I was given the experimental drug, but it was still a positive experience to participate in the trial.
A/Prof Andrew Redfern, Consultant Medical Oncologist, Fiona Stanley Hospital, Clinical Academic Oncologist, The University of Western Australia, and Lead Clinician, State Breast Cancer Collaborative, WA; Christie Allan, Program Coordinator – Clinical Trials, Cancer Council Victoria; Bronwyn Chalmers, Clinical Trial Coordinator, Westmead Breast Cancer Institute, NSW; Sarah Coulson, Coordinator, Oncology Clinical Trials, Projects and Research, Tasmanian Health Service, TAS; Kate Cox, 13 11 20 Consultant, Cancer Council SA; Annette Cubitt, Clinical Trials Manager, Department of Medical Oncology, Cancer Care Services, Royal Brisbane and Women’s Hospital, QLD; Pete Currie, Consumer; Amy Ives, Clinical Trials Coordinator, Department of Medical Oncology, Cancer Care Services, Royal Brisbane and Women’s Hospital, QLD; Sabina Jelinek, Clinical Research Nurse, Murdoch Oncology Clinical Trials Unit, WA; Dr Visalini Nair-Shalliker, Research Fellow – Prostate, Cancer Council NSW; Karlie Neilson, Project Officer – Cancer Research Division, Cancer Council NSW; Prof Mark Rosenthal, Medical Oncologist, and Director, Parkville Cancer Clinical Trials Unit, VIC; Joan Torony, CEO, TROG Cancer Research, NSW; Rebecca Weselman, Senior Clinical Trials Coordinator, Oncology Clinical Trials, St John of God Murdoch Hospital, WA; John Williams, Research Governance Officer, Cancer Council NSW.
View the Cancer Council NSW editorial policy.
Click below to download a PDF booklet on this topic.
Coping with cancer?
Speak to a health professional or to someone who has been there, or find a support group or forum
Need legal and financial assistance?
Pro bono services, financial and legal assistance, and no interest loans
Looking for transport, accommodation or home help?
Practical advice and support during and after treatment
Read more cancer stories that cover different aspects of the cancer experience
Learn about common cancer treatments, such as surgery, chemotherapy and radiation therapy
View our publications
Guides and fact sheets for people with cancer, their families and friends