Detection and Diagnosis

Initial tests and investigations

• Patients will typically present to their GP or emergency department either with various signs and symptoms, or the cancer is discovered accidentally through another test or procedure. Initial tests and investigations will be ordered by your GP (such as blood tests and scans), as well as a physical examination and medical history to understand the clinical presentation.
• If results of the initial tests detect or suspect a metastatic (secondary) cancer, your doctor will refer you to a specialist cancer doctor (oncologist) for further investigation and to locate the primary cancer. Finding the primary site – the place in the body where the cancer started - is important for a clear diagnosis and determining the best treatment.

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Further tests and investigations

• For CUP you may have a large number of tests and investigations to allow the specialists to gain as much detail as possible from different perspectives.
• Your specialist will only perform further tests and investigations which they feel are beneficial and lead to better care or treatment.  The type of tests will depend on your health, symptoms and the suspected location of the primary and secondary cancer.
• These tests may take time to complete., sometimes ranging from several weeks to months.
• You might feel tired and begin to feel frustrated if the tests are not able to find the primary cancer type quickly.
• In some cases, the doctor might even advise against further investigation to find the primary cancer and instead focus on treatment to control the symptoms or growth of the cancer. You may feel a range of emotions such as shock or anxiety or you may even feel relieved that you do not have to continue with all the tests and can focus on treatment. In fact, some people with CUP may be extremely unwell and treatment is the priority rather than further testing and trying to find the primary cancer.

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Tips and advice for consultation/s with your doctor

• Asking your doctor questions will help you understand your diagnosis and make informed decisions about treatment options. Read the questions to ask your doctor prompt list.
• You can ask your doctor to explain the tests and what’s involved, and how the results will impact your care.
• You can ask a trusted friend or family member to accompany you so they can join the discussion, take notes, or simply listen to the information.
• It may also be helpful to take your own notes and/or ask if you can record the consultation with your doctor so you can re-listen to the conversation at a later time. There is often a ‘notepad’ or ‘voice memo’ application on smart phones to help you do this.

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Second opinion

You can ask your doctor for a second opinion to confirm your doctor’s recommendations and reassure you that all your options have been explored. Your doctor can refer you to another specialist and send your test results and medical history to them.

You can ask for a second opinion at any time during your diagnosis or treatment. You might speak to:

• Your GP - they can refer you to a specialist
• Your current specialist – many are open to suggesting another doctor
• Staff at your treatment centre – they may have a list of other specialists you can see

Similarly, during the initial testing phase,you can ask your doctor if another hospital or health facility have specialised tests available that can help find the primary cancer.

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Further information on getting a second opinion:

Getting a Second Opinion | Your Rights | Cancer Council NSW

What stage is CUP?

Doctors conduct a range of tests to determine the size of the tumour, if it has grown over time, and if it has spread to other parts of the body. This is called staging and it helps inform doctors on the best treatment plan for their patients. Each cancer has slightly different staging systems. For most types of cancer, there are 4 stages:

• Stage 1 is small, localised cancer, meaning it hasn’t spread elsewhere in the body.
• Stage 2 and Stage 3 means the cancer has spread to nearby parts of the body.
• Stage 4 means that the cancer has spread to another part of the body that is far away from where the primary cancer is located, and therefore is considered advanced cancer.

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There is NO staging system for CUP as doctors do not know where the primary cancer is. However, as the cancer has spread, CUP is considered to be a Stage 4 or an advanced cancer. Therefore, the goal of treatment in many cases may not be to eliminate or remove the cancer, but to focus on slowing down the spread of cancer, controlling symptoms and maintaining the best possible quality of life. Patients with only localised areas of CUP cancer may be suitable for local treatment with the intent of completing removing the cancer, either with surgery or radiotherapy.