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Living with a CUP diagnosis

When you are first diagnosed with CUP, and throughout the different stages of treatment, you may experience a range of emotions, such as fear, sadness, uncertainty, anxiety, depression, anger and frustration. You may also find that some people are supportive, but others don’t know what to say to you. This can be difficult and leave you feeling confused and upset.

Many people with CUP find it hard to believe that the primary cancer can’t be located. The “unknown” aspect of the disease can make them feel scared and lonely, as well as frustrated when they are looking for information and support.

It may help to talk about your feelings. Your partner and your family members and friends can be good sources of support, or you might prefer to talk to members of your treatment or palliative care team; a counsellor, social worker or psychologist; or your religious or spiritual adviser.

You can also call Cancer Council 13 11 20 to talk about your concerns and help you connect with other people who are living with advanced cancer, and provide you with information about the emotional and practical aspects of living with CUP.

A cancer diagnosis can affect every aspect of your life and often creates practical and financial issues. There are many sources of support and information to help you, your family and carers navigate all stages of the cancer experience, including information about cancer and its treatment; access to benefits and programs to ease the financial impact of cancer treatment; home care services, such as Meals on Wheels, visiting nurses and home help; aids and appliances; support groups and programs; and counselling services.

The availability of services may vary depending on where you live, and some services will be free but others might have a cost. To find good sources of support and information, you can talk to the social worker or nurse at your hospital or treatment centre, or get in touch with Cancer Council 13 11 20.

If you have continued feelings of sadness, have trouble getting up in the morning or have lost motivation to do things that previously gave you pleasure, you may be experiencing depression. This is quite common among people who have had cancer.

Talk to your GP, as counselling or medication—even for a short time—may help. Some people are able to get a Medicare rebate for sessions with a psychologist. Ask your doctor if you are eligible. Cancer Council SA operates a free cancer counselling program. Call
Cancer Council 13 11 20 for more information.

For information about coping with depression and anxiety, call Beyond Blue on 1300 22 4636 or visit beyondblue.org.au. For 24-hour crisis support, call Lifeline 13 11 14 or visit lifeline.org.au.

This information is reviewed by

This information was last updated June 2020 by the following expert content reviewers: Prof Linda Mileshkin, Medical Oncologist, Clinical Researcher, Peter MacCallum Cancer Centre, VIC; Christine Bradfield, Consumer; Cindy Bryant, Consumer; Dr Maria Cigolini, Head, Department of Palliative Medicine, Royal Prince Alfred Hospital, and Clinical Lecturer, The University of Sydney, NSW; Mary Duffy, Advanced Practice Nurse and Nurse Coordinator, Lung Service, Peter MacCallum Cancer Centre, VIC; Karen Hall, 13 11 20 Consultant, Cancer Council SA; Dr Andrew Oar, Radiation Oncologist, Icon Cancer Centre, Gold Coast University Hospital, QLD; Dr Siobhan O’Neill, Medical Oncologist, Nelune Comprehensive Cancer Centre, NSW; Prof Penelope Schofield, Department of Psychological Sciences and the Iverson Health Innovation Research Institute, Swinburne University of Technology, and Head, Behavioural Science in Cancer, Peter MacCallum Cancer Centre, VIC; Frank Stoss, Consumer.