Being diagnosed with cancer

Your key worker is the main point of contact in your healthcare team and therefore one of the most important people in the team to you. This is often a clinical nurse specialist or a member of their specialist team.

Their name and contact details should be given to you when you receive a cancer diagnosis - it may even be given before then. If you do not have a key worker, the next time you attend or contact the hospital you should ask who your key worker is and how you can contact them.

In the hospital there is a group of professions that will help manage your care. This is called a multidisciplinary team, often shortened to MDT. 

Depending on the type of cancer and how it is treated, this may include: 

• Consultant - This is an expert doctor also referred to as a specialist. They may be a Surgeon, Oncologist (Cancer Specialist) or Haematologist (Blood Cancer Specialist).
• Clinical Nurse Specialist - This the nurse and likely your key worker who can help you to understand your treatment options and support you through your cancer experience. They will have a conversation when you are diagnosed to understand your individual needs (Holistic Needs Assessment) which will help them provide the best support plan for you.
• Cancer Care Co-ordinator - This is an individual who works closely with your key worker and can provide information, education, identify concerns and refer you and your families to other available resources. For more information on how they can help, please see the following patient information leaflet: Cancer care coordinators.pdf [pdf] 189KB 
• Radiologist - This is a specialist who is trained to look at scans. This includes CT scans, MRI scan and x-rays. They will often not be known to you but they will contribute their knowledge and skills to planning and improving your care.
• Pathologist - This is a specialist who studies cells and will analyse biopsies or blood tests. The pathologists will also be often not be known to you but they will contribute their knowledge and skills to planning and improving your care.
• Research Nurse - This nurse is part of a wider team and may be involved in your care if you are offered and accept treatment within a clinical trial.

Your GP may the person who referred you to the hospital in the first place. The hospital teams will communicate with your GP and they will have knowledge of any plans that have been developed about your treatment and/or support care. Your GP will work closely with other members of the teams such as community specialist and district nurses to help manage your healthcare whilst you are at home. 

You should look to your GP to:

• Help answer any questions you may have.
• Talk through any decisions you may have to make about your treatment.
• Talk to family members about your illness – with your permission of course.
• Talk with you if you are unhappy with any of your care.
• Organise services to help you at home.

You may feel your GP is too busy to help you. If you have any symptoms that need supporting or wish to discuss anything from the list above, this is a legitimate use of their time. Your GP will appreciate you going to see them and importantly it will enable them to further understand what your issues are, this will make it easier for them to support you when your condition needs it.

There are also other healthcare professionals who may provide support and care. These individuals may work in the community or hospital setting:

• Psychologist or counsellor - This is someone you can talk to about your feelings and worries.
• Dietician - This is someone who can help with eating and nutrition.
• Occupational Therapist - This is someone who can support you with maintaining independence with everyday tasks.
• Physiotherapist - This is someone who can help you walking or moving around.
• Macmillan Cancer Information and Support team - This service aims to complement the clinical teams by providing information, as well as practical, financial and emotional support to patients and their families.

Whether you are seeing your consultant, a nurse or any other professional at the hospital it is important that you get the most out of your appointment.

People often say they forget parts of what has been discussed during the consultation. This is because there is often lots of new information to take in using many words and terms that you may not be familiar with. Below are some hints and tips to enable you to get the most out of your appointment. 

Plan your questions. Write them down and don't be afraid to get your piece of paper or notepad out during your appointment. 

Write and keep notes. During the consultation don't be afraid to write down the important parts of the conversation. 

Ask the doctor or nurse to provide you with a brief written summary of the consultation. This will only cover the key points discussed in the consultation but will provide you with notes that will help prompt your memory. If the doctor or nurse are writing to let your GP know about the consultation, you can request a copy of the letter. 

Record the conversation on your smart phone. You will need to ask the permission of the professional you are seeing but an increasing number of people are now using their mobile phones to record the consultation. 

Ask a friend or family member to come with you. Two minds are better than one and you will both remember different parts of the consultation. If you both write down what you feel are the important parts of the appointment, there will be two sets of notes to refer to after the appointment. 

Don't feel you have to ask everything at once. There will be a number of chances to ask questions of different members of the team. 

And finally, remember that professionals are there to help. They are likely to have supported people with similar issues before, even if you feel it is a subject you may find embarrassing to talk about.