Cancer of unknown primary (CUP)
Cancer of unknown primary (CUP) means that your doctor is not sure where the cancer started. They have found a secondary cancer but have not been able to find the primary site.
A primary cancer cannot always be found because:
It may be too small to be seen on scans
It may be hidden beside a larger secondary cancer
It might have disappeared, even though it has spread to other parts of the body and the secondary cancer is still growing. This can sometimes happen if the body’s immune system has successfully got rid of it.
It may take several tests to confirm that the primary cancer cannot be found and for CUP to be diagnosed. Once these tests have taken place, your doctor may know that the cancer is a secondary cancer, but may not be sure where the primary is, this is called a malignancy of unknown primary origin (MUO).
Some of the tests for cancer are done at our local hospitals; Whipps Cross, Newham or The Royal London Hospitals. The clinic appointments and treatment for CUP mostly happens at St Bartholomew’s Hospital. If you are having tests for CUP you will be given the contact number for a specialist nurse who will support you throughout your treatment.
Your doctor may need to do a series of tests to find out more about the cancer. One of these tests is a biopsy. This is when a small sample of cells is removed from the secondary cancer and examined under a microscope.
Further information about all cancer investigations can be found on the Macmillan website.
Waiting for your test results can be a difficult time. It may take a few days or a couple of weeks for test results to be ready . You may find it helpful to talk with your partner, family or a close friend. Your specialist nurse can also provide support.
Your treatment options
The CUP team at Barts Health have regular meetings called MDTs (multidisciplinary team meetings) this is where a group of health professionals with expert knowledge in cancers of unknown primary will manage your investigations and treatment.
You do not attend the meeting but a member of the CUP team, usually your specialist nurse, will tell you about the results of the meeting. You may be given a choice of treatment options, which your specialist will discuss with you. If you don't understand what you've been told, let the staff know so they can explain again.
Before you have any treatment, you will need to give permission (consent).
Further information about types of treatment used for treating cancer of unknown primary is available on the Macmillan website.
The cancer of unknown primary clinic is at St Bartholomew’s Hospital and is usually held on a Friday. If you need hospital transport this can be arranged.
In some cases we can also help with the cost of transport please ask your specialist nurse or visit the Macmillan Information Centre in the hospital you are visiting about this.
You will see your specialist doctor in the clinic after the multidisciplinary team has met. Your doctor might talk to you about:
The aims of treatment
Possible side effects
How treatment might affect you.
You can also talk to them about any concerns you may have.
It is a good idea to take someone with you when the treatment options are first explained. You may also find it useful to have a list of questions ready to make sure you get the information you need.
Your care team
The Cancer of Unknown Primary team at Barts Health include the following staff:
Doctor trained in diagnosing and treating cancer patients.
A doctor who is expert in interpreting
X-rays and scans. They may also perform biopsies (taking tissue samples) with the aid of imaging techniques.
A doctor who looks at tissue samples under a microscope to search for cancer cells.
Clinical Nurse Specialist (CNS)
An experienced cancer nurse who acts as your key worker. They will give you advice and support as you go through investigations and treatment and support you through your care pathway.
Member of the Palliative Care Team
The Palliative Care Team specialises in relieving pain and other symptoms, including psychological difficulties caused by cancer.
Multi-disciplinary team co-ordinator
The co-ordinator provides administrative support to the CUP team and aims to ease the pathway from referral to treatment.
The CUP Team are a team of experts, and will work with you to conduct and provide the best care plan possible.
If you have any concerns, please talk to the team who will be considerate of your decisions and wishes.
Referring to our service
The CUP/MUO service does not replace the established two week wait pathways.
GP referrals for suspected MUO/CUP should be made via the Trust Multi-disciplinary Rapid Access Diagnostic Centre using the dedicated referral form and sending it via ERS. The service can be found under 2WW – Cancer of Unknown Primary.