Seeking support and information

The emotional impact of taking part in research

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.

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, 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.

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

You can find many useful resources online, but not all websites are reliable. These websites are good sources of support and information.

Australian websites

• Cancer Council Australia
• Cancer Council Online Community
• Cancer Council podcasts
• Guides to Best Cancer Care
• Australian Clinical Trials
• Cancer Australia
• Consumer Involvement in Cancer Cooperative Trials Groups
• National Health and Medical Research Council (NHMRC)
• NHMRC Clinical Trials Centre
• Pharmaceutical Benefits Scheme (PBS)
• Services Australia (Centrelink, Medicare)
• Therapeutic Goods Administration (TGA)

International websites

• Cancer Research UK
• ClinicalTrials.gov (US)
• EU Clinical Trials Register
• International Clinical Trials Registry Platform
• ISRCTN registry
• NHS – Clinical Trials (UK)

To find current Australian trials

• Australian Cancer Trials
• Australian New Zealand Clinical Trials Registry
• Cancer Institute NSW
• ClinTrial Refer
• Victorian Cancer Trials Link

To find trials for specific cancers and treatments

• Australasian Gastro-Intestinal Trials Group
• Australasian Leukaemia & Lymphoma Group
• Australian and New Zealand Urogenital and Prostate Cancer Trials Group
• Australia New Zealand Gynaecological Oncology Group
• Breast Cancer Trials
• Cooperative Trials Group for Neuro-Oncology
• Melanoma and Skin Cancer Trials
• Psycho-oncology Co-operative Research Group
• Thoracic Oncology Group Australasia
• Trans Tasman Radiation Oncology Group