When tests have been unable to find the primary cancer, CUP is confirmed. This is often a difficult time and it can be hard to accept that the primary will never be found. Some people may feel relieved that the tests are over and that treatment can start.
To work out what treatment to suggest your doctors will use the information they have about the cancer, including the location of the secondary cancer, test results and how likely it is to be a certain type of cancer.
CUP can be treated using chemotherapy, radiotherapy, surgery and hormone treatment or a combination of these. Treatment will depend on factors that are unique to your situation.
For many people, CUP is diagnosed at an advanced stage and treatment is unlikely to cure it. However, treatment may be able to control the cancer and improve your symptoms. It is possible that treatment may make you feel better and help you live longer. This is called palliative treatment.
"I was told I had metastatic neck cancer - unknown primary - by the first consultant I saw and he explained the risks of surgery. I did not want any treatment. All options seemed terrible. A second opinion changed that. This specialist had a more moderate approach. He also had the ability to help me see that I could face treatment. It was a huge turnaround." - Jane
Chemotherapy is the treatment of cancer with anti-cancer (cytotoxic) drugs. The aim of chemotherapy is to kill cancer cells while doing the least possible damage to healthy cells.
Chemotherapy is one of the treatments for CUP. The drugs circulate through the bloodstream and can kill cancer cells throughout the body (called a systemic treatment). Chemotherapy is used to shrink tumours, and to relieve symptoms caused by the cancer. It can also be used in combination with radiotherapy or surgery to try and kill any local collections of cancer cells in the body.
Generally, chemotherapy is given intravenously through a drip or plastic tube (catheter) inserted into a vein in your arm, hand or chest. Some types of chemotherapy are taken orally (tablet form). Different cancer cells respond to different chemotherapy drugs. People with CUP may have a combination of drugs.
Chemotherapy is given in cycles, which consists of a treatment period followed by a recovery period. The number of treatment cycles you have may vary. You may be able to have treatment as an outpatient but sometimes a short stay in hospital is required.
Most chemotherapy drugs cause side effects. Different drugs have different side effects and your medical oncologist or nurse will discuss them with you.
The most common side effects include feeling sick (nausea), vomiting, mouth sores, tiredness, loss of appetite, diarrhoea and some thinning or loss of hair from your body and head. These side effects are usually temporary, and can be prevented or reduced. Many go away once treatment is finished.
Chemotherapy temporarily weakens your immune system so your body may have trouble fighting infections. You will have regular blood tests to check your immune system. If you have a high temperature (38°C or above) while receiving chemotherapy, contact your medical oncology team or hospital immediately.
Radiotherapy treats cancer by using x-ray beams to kill cancer cells. For CUP, radiotherapy can be used to relieve symptoms such as pain, bleeding, difficulty swallowing, breathlessness, blocking of the intestines, compression of blood vessels or nerves by tumours, and problems caused by the cancer spreading to the bones.
To plan radiotherapy treatment, your doctor will take an x-ray of the treatment area. To ensure that the same area is treated each time, the radiation therapist will make a few small marks on your skin. Sometimes these are permanent tattoo marks. You may have treatment as external or internal radiotherapy. External radiotherapy is given from a machine outside the body, while internal radiotherapy is given using implants.
During external radiotherapy you will lie on a treatment table. A machine that delivers the radiation will be positioned around you. The treatment session will take about 10-15 minutes but it will take longer to set up the machine. Radiotherapy treatment is painless.
The total number of radiotherapy treatments and their duration will depend on your situation. Sometimes only a couple of treatments are necessary, or you may need radiotherapy every weekday for several weeks.
The side effects of radiotherapy depend on the area of the body being treated and the dose of radiation.
Common side effects include nausea, loss of appetite, diarrhoea, tiredness and shortness of breath. It can also make your skin dry and itchy in the treatment area. Your skin may look red or sunburnt.
Side effects tend to develop as you go through treatment and most improve after treatment is finished.
Talk to your doctor or nurse about ways to manage the side effects of radiotherapy. Cancer Council's booklet on radiotherapy has a lot of useful information. Call the Helpline for a free copy.
Surgery is a common treatment for many types of cancer if they are found at an early stage. With CUP, the cancer has already spread beyond the site where it started, so surgery may not be used as a treatment.
If the cancer is found in only one area (e.g. in the lymph nodes in the neck, underarm or groin) it may be possible to remove it with an operation. Small secondary cancers in the brain are sometimes removed in people who are well enough to have surgery and who don't have any other secondary cancers. If the cancer has spread extensively, it may not be possible to remove it all surgically.
Surgery may be followed by radiotherapy or chemotherapy to kill any cancer cells left in the body. Sometimes surgery is recommended to help with symptoms. For example, surgery may help relieve the discomfort or pain caused by a cancer pressing on a nerve or organ.
Some people experience pain after surgery but this is often temporary. You can ask your doctor or nurse for pain-killers.
If you've had lymph nodes removed, you may develop lymphoedema. This is swelling caused by a build up of fluid in part of the body, usually in an arm or leg. For more information see the Lymphoedema Association of Australia website.
Hormones are substances that occur naturally in the body but they can also be synthetically made. Synthetic hormones are used to block the effect of the hormones in the body that help cancer cells grow. Hormone treatments may be taken as tablets by mouth or as injections.
Hormones may be used to treat hormone-dependent cancers such as breast, prostate or uterus where the cancer cells are stimulated to grow by oestrogen (breast cancer) or testosterone (prostate cancer). Hormone treatments are also sometimes used for kidney cancer and for melanoma. If CUP is thought to have originated in one of these organs, hormone therapy may be recommended to slow the growth of the cancer or shrink it.
Hormone treatment may be used in combination with other treatments (e.g. to shrink a tumour before radiotherapy or surgery).
General side effects of hormone treatment include tiredness, nausea, diarrhoea, constipation, appetite changes, mood changes, pains in your joints and thinning of your bones. The side effects vary depending on the hormones you are given.
Women may experience menopause, which may be temporary or permanent. Men may have problems getting an erection. For more information call Cancer Council Helpline.
Palliative care helps to improve people's quality of life by alleviating symptoms of cancer without trying to cure the disease. It brings together different services that work together as a team. It can include medical treatment, nursing care, social work, occupational therapy, physiotherapy, counselling and dietary assistance. You may have chemotherapy, radiotherapy or hormone therapy as palliative treatments.
Often palliative care is concerned with pain relief but it can also help manage other physical and emotional symptoms, such as depression. Palliative care:
It is best to make contact with a palliative care team as early as possible. You can find out what the different team members do to work out which services might be useful now or in the future. This will vary according to how you feel, what problems you have and how your carers are managing. Talk to the team about any needs you have and how they can help you achieve your goals.
My husband, Steve, was diagnosed with cancer of unknown primary. It started off with a sore back. Then he had trouble walking and the pain was unbearable. Steve had some scans, which showed a mass. He was then referred to the hospital for further tests and an MRI.
They never found the primary site; they only found the secondary sites on my husband's spine, in his lungs and in his liver. The doctors said the cancer was inoperable and untreatable.
He had chemotherapy and radiation to relieve his pain and to reduce the size of the secondary tumour on his spine.
I nursed Steve at home but took him to hospital for chemo. I gave him injections to help control his pain. We also had an excellent palliative care nurse visit every day.
Reviewed: Prof Martin Tattersall, Professor in Medicine, University of Sydney; Jane Barrett, CUP Survivor; David Currow, CEO of Cancer Institute NSW; Nadine Hackl, Cancer Institute NSW; A/Prof Chris Karapetis, Medical Oncologist, Flinders Medical Centre; Sylvie Lambert, Hunter Medical Research Institute, Post-doctoral Fellow; Monica Robotin, Medical Director, Cancer Council NSW; A/Prof Penelope Schofield, Supportive Care Research Group, Peter Mac; and A/Prof Claire Vajdic PhD, Lowy Cancer Research Centre, University of New South Wales.