Cancer of the unknown primary

Some people with cancer of unknown primary may have felt sick for a while.

 There are a number of things to look out for, including:

• a lump or a thickening of any part of your body
• a new or unusual pain that won’t go away
• a new or changed cough or change in your voice that doesn’t go away
• change in going to the toilet such as weeing more often or having trouble doing a poo (constipation) or having very runny poo (diarrhoea)
• unusual bleeding or discharge
• fevers or night sweats that don’t go away
• not feeling hungry
• losing weight without meaning to
• feeling really tired for no reason.

Having these symptoms may not mean you have cancer, but it is important to check.

If you have any of these problems or are worried about something that’s new or different in your body, have a yarn with your doctor, nurse or Aboriginal and/or Torres Strait Islander health worker.

You won’t know if you have cancer of unknown primary until your doctor has yarned with you, completed a physical examination and done some tests

The tests might include:

• a blood test or tests of your wee or poo
• imaging tests like a chest x-ray, ultrasound or a CT scan to see what your insides look like. Women may also need a mammogram or pelvic ultrasound to look at different parts of the body.
• a biopsy, where a tiny bit of tissue is taken from a lump. This is then taken to a lab and the doctors use a microscope to look at it. 

Most people with cancer need a lot of tests. People with cancer of unknown primary may need more tests than usual. This can take more time and effort, but it is important for the doctors to do these tests to plan the correct treatment.

Having these tests does not mean you will have cancer, but it is important to check.

Your doctor will recommend treatment for the cancer depending on a few things:

• where the cancer is
• what type of cancer it looks like (i.e. cell type)
• how unwell you are
• your general health
• your preferences.

Most people with cancer of unknown primary are treated with chemotherapy. They may also receive other treatments, including surgery, radiotherapy and other medicines that can help you feel better. 

If you have cancer of unknown primary, you might have one of these treatments or a combination of them.

Your doctors will talk to you about what treatments they recommend before starting them.   

Yarn with your doctor, nurse or Aboriginal and/or Torres Strait Islander health worker about which treatment you might have and how to include traditional healing, bush medicines, Women’s Business, Men’s Business and cultural practices into your treatment plan.

Surgery

Surgery is a procedure done to remove the cancer from the body. This can help to stop it from spreading to other parts of the body and also to help you feel better. Surgery involves staying in hospital and having an anaesthetic and an operation.

The type of surgery you have for cancer of the unknown primary will depend on your situation.

Yarn with your doctor, nurse, or Aboriginal and/or Torres Strait Islander health worker. If you need to travel away from home for surgery, assistance is available for travel and accommodation for you and your family.

Read more about surgery.

Radiotherapy

Radiotherapy uses X-rays to destroy cancer cells in one part of your body.

Most people who have radiotherapy have it 5 days a week for 4-6 weeks, and each session can take 15 minutes. But it might be different for you.

You can only have radiotherapy in cities and some big towns – see this list. If your doctor thinks radiotherapy would help, and you don’t live near a radiotherapy site, assistance is available for travel and accommodation for you and your family.

Yarn with your doctor, nurse or Aboriginal and/or Torres Strait Islander health worker.

Read more about radiotherapy.

Chemotherapy

Chemotherapy or ‘chemo’ involves you taking strong drugs to kill or slow the growth of the cancer cells.

Many people have chemo in cycles – usually two days every three weeks, or one day every three weeks. Some people have chemotherapy tablets at home, but most need to go to a hospital or clinic. But you usually don’t need to stay in hospital for chemo.

Most chemo comes as injections into your arm or hand that drip in over a few hours and some need you to take home a small bottle home for two days then come back to take it off again. If you’re having chemo, your doctor will tell you exactly how it will work for you.

Chemo can make people feel sick for a while, but there are things they can do to help. Yarn with your doctor, nurse or Aboriginal and/or Torres Strait Islander health worker. Mob who have had chemo say that spending time on Country, traditional healing, bush medicines, Men’s Business, Women’s Business and engaging in cultural practices can help with the symptoms of chemo.

Read more about chemotherapy and side effects.

It is important for you to understand why you are getting the treatment your doctor has recommended and how it is supposed to help you. Different treatments try to do different things. It depends on what cancer you have, and whether it has spread, and where you live, and what you want. Ask your doctor or specialist if the treatment they suggest:

• is meant to cure you, by getting rid of the cancer and stopping it spreading, or
• won’t cure you, but is meant to prolong your life, or make you feel better.

Your treatment team will yarn with you and explain this. You can yarn with them and tell them what you think, and what you want. Some people will want to try everything possible to stay alive. Others want simpler treatments, or may not want to leave Country for treatment, or perhaps would rather have no treatment at all. It’s your choice. You can also talk to another doctor to help you decide.

It can take time to decide about treatment. There are usually some options to hear about and choices to make.

It can be helpful to write things down or have someone else come to appointments to help remember information.

Yarn with your doctor, specialist, nurse or Aboriginal and/or Torres Strait Islander health worker. Mob who have been diagnosed with cancer say that yarning with trusted family and friends, Elders and counsellors can help making decisions.

Always ask about the cost of treatment. Many treatments are free through public hospitals, but some may not be.

Yarn with your doctor, nurse or Aboriginal and/or Torres Strait Islander health worker.

Learn more about financial support.

It all depends on the type of treatment you’re having. People will have treatment for different durations of time.

After treatment is finished, your doctors will keep in touch with you to check how you’re going. Your cancer journey gives you an opportunity to build trust and safe relationships with your doctors and medical team that may last for many years.

It is not possible to say what causes cancer of unknown primary in a single person. We do know there are some features that are more common in people who develop cancer of unknown primary. These features are called ”risk factors”.

But it is usually hard to be sure whether a risk factor contributed to the development of the cancer. And having one or more risk factors does not mean that someone will develop this cancer. In fact, many people with cancer of unknown primary have no obvious risk factors.

Risk factors for cancer of the unknown primary that can be changed:

• smoking tobacco
• sun exposure
• poor nutrition
• lack of exercise.

Risk factors for cancer of the unknown primary that can’t be changed

• getting older
• family history.

If you have any of these risk factors or you’re worried about your risk for cancer, yarn with your doctor, nurse, Aboriginal and/or Torres Strait Islander health worker.

Clinical trials might be an option for you to yarn with your doctor to help you decide if taking part is a good option. Read more about clinical trials.