Cancer of unknown primary (CUP)

Cancer of unknown primary (CUP) means that cancer that has spread has been found in your body (secondary cancer), but your Doctors can’t find where the cancer started (the primary cancer). It is sometimes called Unknown Primary Cancer, Unknown Primary Tumour or Malignancy of Unknown Origin.

The Rotherham Carcinoma of Unknown Primary (CUP) Multi-Disciplinary Team (MDT) involves a range of health professionals from one or more organisations, working together to deliver your care. We meet every Friday morning so if there is any information you wish to be made known within this meeting, please discuss with your Keyworker who will ensure your voice is heard.

One of the MDT members has explained to you that you have cancer and that you may need treatment.

This booklet contains information about the cancer, investigations, your treatment options and the care and support you can expect.

We hope that having this information will help you to have a clearer understanding of your cancer and its treatment.

You will not find the answers to all of your questions in this information, but can use this to help guide you through treatment and find out where to get more information.

Please remember that you can always speak to a member of the Cancer of Unknown Primary (CUP) Nursing Team.

Make a note of the details of your multi-disciplinary team:

• Your Consultant and their contact details
• Clinical Nurse Specialists in CUP
• Your keyworker, their job title and contact details
• Your Oncologist (Cancer Treatment Specialist) and their contact details

Specialists from the Radiology and Pathology departments attend and give important information at the MDT meetings.

Make a note of any other useful numbers you may need.

The team consists of Clinical Nurse Specialists (CNS). To contact the team, call the number for your Keyworker, this will put you through to the CUP Nursing Team voicemail. When leaving a message, please leave your full name, contact telephone number and the name of your Keyworker.

A CNS will try to return your call on the same day, but sometimes this may not be possible.

The team is available every day, 8am to 6pm on 01709 427180.

Make a note of the following:

• Results discussed at MDT
• Results and explanation given by
• Results discussed at CT scan
• Results given at MRI scan
• Results discussed at Ultrasound
• Clinical findings
• Size
• Tumour grade (from biopsy)
• Type of cancer
• Other tests undertaken
• What treatment options are available to me?

At this point, you may find the Macmillan booklet 'Understanding Cancer of Unknown Primary' useful.

You will be offered the opportunity to discuss your care and support further with your Keyworker.

This can be as a telephone, video or group consultation; whichever you feel more comfortable with.

Being diagnosed with cancer can affect many areas of your life. To help support you, you will be offered a Holistic Needs Assessment (HNA). This gives you a chance to think about your concerns, discuss possible solutions and develop a care plan for your needs.

You will be offered this assessment when you are diagnosed and asked to return this information back to your Keyworker or Cancer Support Worker. If you have identified concerns on your HNA concerns checklist, you will receive a call from one of the CUP team to discuss this and work with you to make a plan to help with your care and support needs.

For further information at this point read, ‘Holistic Needs Assessment: Planning your care and support’ - Macmillan.

Write down the dates and times of your appointments.

If you are having chemotherapy for your first treatment you will receive an appointment from Weston Park Cancer Centre to meet with the Oncology team.

Each of these appointments will be discussed with you further with your Keyworker or a member of the CUP team.

The following booklets are available from Macmillan:

• Having a CT scan (easy read)
• Having a biopsy (easy read)
• Having an MRI (easy read)
• Your feelings and cancer (easy read)
• Help with the cost of cancer
• Help with costs when you have cancer (easy read)
• Claiming benefits when  you have cancer (easy read)

Your final results will be given to you after all of your investigations.

Make a note of:

• Results discussed at MDT
• Confirmed grade
• Type of cancer
• Size

The MDT are not able to say what further treatment you may need until this point, when all of the results relating to your cancer have been received.

• Chemotherapy
• Radiotherapy

For more information on any of these treatments, please ask at your appointment after surgery and this will be supplied to you.

You and your family may find coping with the effects of a diagnosis and treatment for Cancer of Unknown Primary difficult at times.

Identifying your care and support needs with the help of a Holistic Needs Assessment makes sure you have the opportunity to tell us what concerns or support you and your family need.

Your care and support will always be tailored to your needs. Please let your Keyworker know if you feel your needs have changed.

There are lots of support services available for further information please ask for a copy of the booklet which has information on local support services.

Cancer of Unknown Primary Team

01709 427180

Weston Park Cancer Centre secretaries

0114 226 8215

Weston Park Cancer Centre

0114 226 5000