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Seeking support and useful websites - Clinical trials
When you are first diagnosed with cancer, you may feel that you don’t have enough time or energy to think about getting involved in research. For most people, their key goal will be to start treatment as soon as possible and then concentrate on getting better. Some people will be keen 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.
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Your experience
If you agree to participate in research, you may have mixed emotions during or after the study. Although people who join clinical trials generally say it is 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 your health is not improving or you’re not getting the best treatment.
After the trial ends
After the trial ends, you may feel 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 you may be disappointed if the cancer has not gone away.
Talk to your doctor
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.
Useful websites
Click on the links below to find websites that provide reliable information on clinical cancer research and trials, and let you know where you can find support.
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More resources
A/Prof Brett Hughes, Senior Staff Specialist, Medical Oncology, Royal Brisbane and Women’s Hospital and The Prince Charles Hospital, and Associate Professor, The University of Queensland, QLD; Christie Allan, Clinical Trials Lead, Cancer Council Victoria, VIC; Dawn Bedwell, 13 11 20 Consultant, Cancer Council Queensland, QLD; Joanne Benhamu, Senior Research Nurse, Team Lead, Lung, Colorectal and Palliative Care Trials, Parkville Cancer Clinical Trials Unit, Peter MacCallum Cancer Centre, VIC; Louise Dillon, Consumer; Sabina Jelinek, Clinical Nurse Research, St John of God Murdoch Hospital, WA; Chloe Jennett, Program Coodinator, Cancer Research, Cancer Council NSW; Carmel McCarthy, Consumer; Alison Richards, Research Unit Manager, Medical Oncology Clinical Trials Unit, Flinders Medical Centre, SA; Prof Jane Ussher, Translational Health Research Institute (THRI), School of Medicine, Western Sydney University, NSW; Prof Janette Vardy, Medical Oncologist, Concord Cancer Centre, and Professor of Cancer Medicine, The University of Sydney, NSW.
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