When you are first diagnosed with cancer, you may feel that you don’t have enough time or energy to think about research. For most people, their key goal will be to start treatment as soon as possible and then concentrate on getting better.
However, some people may want to take part in research or they may be invited to take part. Being involved may give you an opportunity to feel more supported during or after cancer treatment. You may also find the experience rewarding.
If you agree to participate, you may have mixed emotions during or after the study. Although people who participate in trials generally report a positive experience, you may find that the extra appointments are stressful or that dealing with a different health care team is unsettling or confusing. The treatment you’re having may cause side effects, or you may worry that you’re not getting the best treatment.
After the trial ends, you may be relieved because you no longer have this commitment. You may be happy with the outcome and feel ready to put the cancer behind you. On the other hand, you may feel worried because your health won’t be monitored as frequently or disappointed that the cancer has not gone into remission.
It’s important to discuss any worries with your doctor or clinical trials or research nurse. They can help you understand information about the research so that you feel reassured and positive about your involvement. Make sure you understand the aims of the research before you participate so you have realistic expectations.
You can find many useful resources online, but not all websites are reliable. These websites are good sources of support and information. You can also see a list of Australian clinical trials websites.
|Australian Clinical Trials||australianclinicaltrials.gov.au|
|Cancer Council Online Community||cancercouncil.com.au/OC|
|Consumer Involvement in Cancer Cooperative Trials Groups||consumerlearning. canceraustralia.gov.au|
|National Health and Medical Research Council (NHMRC)||nhmrc.gov.au|
|NHMRC Clinical Trials Centre||ctc.usyd.edu.au|
|Pharmaceutical Benefits Scheme||pbs.gov.au|
|Therapeutic Goods Administration||tga.gov.au|
|EU Clinical Trials Register||clinicaltrialsregister.eu|
|International Clinical Trials Registry Platform||apps.who.int/trialsearch|
|NHS Choices – Clinical Trials||www.nhs.uk/conditions/ clinical-trials|
|World Health Organization||who.int/topics/clinical_trials|
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.
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