Cancer of unknown primaryYour guide to best cancer care

It can be overwhelming after being told that you have or may have cancer of unknown primary (CUP). A lot can happen quickly, and you might have lots of questions, like 'What happens next after a diagnosis?'

This support resource can help to guide you, your family, and friends through this experience.

Information and support

If you need additional information or would like support, you can visit the cancer of unknown primary page or call Cancer Council on 13 11 20 to talk to an experienced healthcare professional.

If you need a translator, call TIS on 13 14 50 or visit the TIS National website.

Symptoms

Your general practitioner (GP) should do a check-up to see if they can find what is making you unwell. They will ask you about any symptoms you might be having such as persistent pain, weight loss, or a lump.

Initial tests you may have

After assessing your symptoms, your GP should conduct a thorough physical examination and arrange blood tests.

Your GP may also order other tests (for example, urine and faecal tests, x-ray), depending on your symptoms. Your GP should also discuss your needs (including physical, psychological, social and information needs) and recommend sources of reliable information and support.

Referrals

If cancer is suspected, you will be referred to a specialist for further testing. The specialist you see first will depend on the symptoms you have. Your GP will provide the specialist with information about your medical history, whether there is a history of cancer in your family, and your test results.

It can be helpful to bring a family member or friend with you to your appointments.

Timeframes

The specialist appointment should be done within two weeks of the initial referral.

Your specialist will discuss your test results with you and options for further testing. Your specialist will send you to get tests to check whether cancer is present and, if it is, its stage of development. This process of working out if you have a medical problem is called making a diagnosis. Your specialist should arrange a biopsy if you are well enough and if you haven’t had one already.

If CUP is detected, to ensure you receive the best care, your specialist may need to refer you to another doctor. The doctor will be part of a team made up of professionals who have experience managing and supporting a person with CUP (if not specialising in this area themselves), or in a specialist cancer centre.

Because CUP has already spread, further tests are usually done, based on the site of the secondary cancer/s and any ‘clues’ as to where the cancer may have started from your initial tests. Tests are ordered to ensure that cancers which are still curable or treatable, even when spread, are not missed.

Your team will plan further tests and treatment based on your preferences, symptoms, and previous test results. These tests will give the specialist more information about the cancer, such as where exactly it is in your body, if the cancer is growing or has spread, and what stage it is at. This is called staging, which helps to work out the best treatment for you.

You might have one test or a mix of tests:

Some people have further tests such as a bronchoscopy or mammogram.

Sometimes, these tests will find the primary cancer at the time of diagnosis, or it might be found later in the course of the illness. When this happens, the cancer is no longer called CUP and is treated according to the place of origin.

If your specialist can’t be sure of the primary cancer, they may be able to suggest a possible part of the body where the cancer started (based on where the secondary cancers are, your symptoms and the test results). This will help your team to plan your treatment.

Timeframes

Results should be available within two weeks from when you have the tests.

Your team should discuss the different treatment options with you including the likely outcomes, possible side effects and the risks and benefits. You might want to ask for more time before deciding on your treatment or ask for a second opinion.

For most cancers, treatment is determined by the type of cancer and depends on correct diagnosis and staging. Because the primary cancer type is unknown, the types of treatments used for CUP are quite variable. The doctor will discuss with you a recommended approach based on all the available test results and the most likely type of primary cancer.

For most patients with CUP, current treatments do not cure the cancer. However, treatment may be able to control the cancer and improve your symptoms. In a minority of cases, CUP can be treated effectively or even cured if is contained in just one area of the body. You might have one treatment or a mix of treatments:

Chemotherapy or drug therapy uses drugs to kill cancer cells and stop the cancer growing.

Radiation therapy may be given to you in combination with chemotherapy.

Surgery may be suitable if the cancer is found only in the lymph nodes or in one organ, or to help with symptoms.

Hormone therapy may be suitable if your test results show that you may have a cancer that has hormone receptors (usually breast, prostate, womb, and kidney cancers).

For more information, visit Cancer Treatment. Supportive care (treatment or services that support you through a cancer experience) is also available.

You can ask your GP for a referral to another specialist for a second opinion.

For more information on clinical trials, visit the Australian Cancer Trials page.

Recovery

Cancer treatment can cause a range of physical and emotional changes.

Follow-up care plan

After your primary treatment is completed, your doctor should provide you with a treatment summary that details the care you received including:

• diagnostic tests performed and their results
• types of treatment used and when they were performed
• treatment plans from other health professionals
• support services provided to you

Your doctor will decide whether your ongoing care will be managed by your GP, a palliative care physician, or whether you should continue to see your specialist. You will both receive a follow-up care plan that tells you about:

• the type of follow-up that is best for you
• care plans for managing any side effects of treatment
• how to get medical help quickly

If you need extra help after treatment, your GP or palliative care physician can discuss your needs with you and refer you to appropriate health professionals and/or community organisations.

For more information, visit After Cancer Treatment.

Sometimes cancer can come back after treatment. It can come back in the same place or can appear somewhere different in your body.

If cancer returns, you may be referred to the specialist or the hospital where you were first treated, or to a different specialist.

Treatment will depend on how far the cancer has spread, how fast-growing it might be, and the symptoms you are experiencing.

Advance care planning

Your GP or healthcare team may talk with you, your family, and carer about your future treatment and medical needs.

Advance care directive

Sometimes known as a living will, an advance care directive is a legally binding document that you prepare to let your family and healthcare team know about the treatment and care you might want or not want in case you become too unwell to make those decisions yourself.

For more information, visit Advance Care Planning Australia.

Palliative care

Your specialist may refer you to palliative care services, but this doesn’t always mean end-of-life care. Today, people can be referred to these services much earlier if they’re living with cancer or if their cancer returns. Palliative care can help you to live as well as you can, including managing pain and symptoms. This care may be at home, in a hospital or at another location you choose.

Speak to your GP or specialist or visit Palliative Care Australia.

Making treatment decisions

You may decide not to have treatment at all, or to only have some treatment to reduce pain and discomfort. You may want to discuss your decision with your healthcare team, GP, family and carer.

For more information, visit Advanced Cancer Treatment.

Decisions about cost

You may have to pay for some appointments, tests, medications, accommodation, travel or parking. Speak with your GP, specialist or private health insurer (if you have one) to understand what is covered and what your out-of-pocket costs may be.

If you have concerns about costs, talk to your healthcare team or a social worker about:

• being bulk-billed or being treated in the public system
• help with accommodation during treatment
• the possible financial impact of your treatment

You can call Cancer Council on 13 11 20 to speak to a healthcare professional about financial support. For more information about costs, visit Practical and financial assistance and What will I have to pay for treatment.