Carcinoma of Unknown Primary

What is Carcinoma of Unknown Primary (CUP)?

Carcinoma (cancer) of Unknown Primary means that even after tests have been done, we are not able to tell where your cancer started.

The Primary (first) cancer remains unknown, and a secondary cancer is diagnosed.

What are the signs and symptoms?

General symptoms

You may have general symptoms including:

• Unexplained weight loss.
• Feeling extremely tired all of the time.
• Loss of appetite.
• Looking pale or feeling breathless due to anaemia (lack of red blood cells).

Symptoms vary in different areas of the body

You may have symptoms due to the secondary cancer in the:

• Lung – feeling breathless or having a cough that does not go away.
• Liver – swelling and discomfort in your abdomen (tummy), feeling sick and losing your appetite, jaundice (yellowing of the skin and eyes) or ascites (fluid collecting in your abdomen).
• Bone – you may have dull pain in your bones, which is often worse at night, Sometimes if a bone is weakened by cancer it can fracture (break).
• Lymph nodes (glands) – your lymph nodes may be swollen and feel hard or cause pain. The most common lymph nodes to be affected are the nodes in your neck, armpit, chest or groin.

Are there any tests or examinations needed to confirm a diagnosis?

In order to look for the primary cancer you may need to have blood tests, a chest X-ray and a more detailed scan of your body called a CT scan.

You may also need to have some tissue or cells removed and examined under a microscope to look for cancer cells. This is called a biopsy.

Some patients with suspected Carcinoma of Unknown Primary may be too unwell to have many of these tests. This is because the cancer is very advanced or they have other health problems.

What happens if I am suspected to have a Carcinoma of Unknown Primary?

You will be referred to the Carcinoma of Unknown Primary Team (CUP Team).

The Carcinoma of Unknown Primary Team is made up of a group of Healthcare Professionals who have specialist knowledge and expertise in the management of patients with this condition.

The team is made up of:

• Oncologists who specialise in cancer management and treatments such as chemotherapy and radiotherapy.
• Pathologists who examine tissue samples to look for particular cancer cell types.
• Radiologists who perform and interpret X-rays and other scans.
• Palliative Care Specialists who provide support and symptom control for patients.
• Nurse Specialists who will provide you with information and support. They will inform you about any possible tests, treatments and provide a point of contact for you if you have any questions.

Who will consider which treatment is the most appropriate for me?

The CUP team meet weekly and consider the most appropriate treatment for you. However, your ongoing care is also reviewed outside of this meeting, as needed.

The team will discuss your symptoms, blood tests, scan and biopsy results. These will help them make decisions about which investigations and treatment would be appropriate for you.

The options will be discussed with you. If you choose not to have certain treatments, your decision will be respected. This will not affect the care you receive.

What treatment might I be offered?

The CUP Team will take into account different factors before advising on the best option for you. This includes where the secondary cancer is and how likely you are to benefit from treatment and how you will cope with its side effects.

This may include:

• Chemotherapy. This is a systemic treatment, which means that it treats the cancer in more than one area of the body.
• Immunotherapy. This is also a systemic treatment.
• Radiotherapy (radiation treatment). This uses high-energy radiation from X-rays and other sources to kill cancer cells and shrink tumours.
• Hormone treatment. This is a treatment that adds, blocks or removes hormones which helps to slow or stop the growth of cancer. Also called endocrine therapy, hormonal/hormone therapy.
• Surgery might be considered.

Supportive or palliative care with medicines to control symptoms is also an important part of treatment for people with this condition.

How will I be kept informed?

A Nurse Specialist will be assigned as your key worker. They will be your main point of contact in the hospital.

The Nurse Specialists have specific knowledge about patients with Carcinoma of Unknown Primary and the treatments they may be offered.

They will keep you informed of decisions made about treatment and make sure your views will be taken into account. They will offer you support in coming to terms with your diagnosis and answer any questions you may have.

Contact numbers

North Tees and Hartlepool NHS Foundation Trust

CUP Specialist nurses:

07769908140, 07920500277 or 07517829335.
Mon to Friday 09:00am to 05:00pm.

Further Information is available from:

Macmillan Cancer Support:

Website: www.macmillan.org.uk
North Tees Hospital – 9:30am to 4:30pm Monday to Friday
Hartlepool Hospital – 9:30am to 4:30pm Wednesday
Telephone: 01642 383041
E-Mail: [email protected]

Cancer of Unknown Primary Foundation – Jo’s Friends:

Telephone: 01285 654093
Website: www.cupfoundjo.org

Cancer Research UK:

Telephone: 0808 800 4040
Website: www.cancerresearchuk.org

Comments, concerns, compliments or complaints

Patient Experience Team (PET)

We are continually trying to improve the services we provide. We want to know what we’re doing well or if there’s anything which we can improve, that’s why the Patient Experience Team (PET) is here to help. Our Team is here to try to resolve your concerns. The office is based at the University Hospital of North Tees if you wish to discuss concerns in person. Our contact details are:

Telephone: 01642 624719
Freephone: 0800 092 0084
Opening hours: Monday to Friday, 9:30am to 4:00pm
Email: [email protected]

Out of hours

Out of hours if you wish to speak to a senior member of Trust staff, please contact the hospital switchboard who will bleep the appropriate person.
Telephone: 01642 617617

Patient, Public and People with Lived Experience

We are looking for patients to share their experiences of healthcare and to join our Involvement Bank. Working with the patients, carers, families and the general population we support in making decisions about their care can lead to better health outcomes, increased patient satisfaction and a better overall experience. We want to listen and work with you in shaping the future of your healthcare services. To find out more about the Involvement Bank go to our website or contact us at:

Website: www.nth.nhs.uk/about/community/people-with-lived-experience
Email: [email protected]

Data protection and use of patient information

The Trust has developed Data Protection policies in accordance with Data Protection Legislation (UK General Data Protection Regulations and Data Protection Act 2018) and the Freedom of Information Act 2000. All of our staff respect these policies and confidentiality is adhered to at all times. If you require further information on how we process your information please see our Privacy Notices.

Telephone: 01642 383551

Email: [email protected]

Leaflet feedback

This leaflet has been produced in partnership with patients and carers. All patient leaflets are regularly reviewed, and any suggestions you have as to how it may be improved are extremely valuable. Please write to the Clinical Governance team at:

Email: [email protected]