I May Have Lymphoma – what next?

  • Reference Number: HEY-799/2019
  • Departments: Haematology, Oncology (Cancer Services)

Introduction

This leaflet has been produced to give you general information about your condition.  Most of your questions should be answered by this leaflet.  It is not intended to replace the discussion between you and the healthcare team, but may act as a starting point for discussion.   If after reading it you have any concerns or require further explanation, please discuss this with a member of the healthcare team.

What is lymphoma?

You have been told that you may have a diagnosis of lymphoma. Lymphoma is a cancer of white blood cells; these blood cells are called lymphocytes. People with lymphoma produce abnormal lymphocytes. These lymphocytes can form together to produce “lumps” commonly found in the neck, chest, armpit or groin. However, as lymphocytes are a blood cell they have the ability to travel and reproduce anywhere in the body.

There are many different types of lymphoma and we may not know your specific type of lymphoma at this point. If you have had a biopsy this may be forwarded to a specialist laboratory for further testing and review.

Following the diagnosis or suspicion of lymphoma you will be referred to a lymphoma clinic, where you will meet with a haematologist (a doctor who specialises in the diagnosis and treatment of blood disorders).

What happens now?

Haematologists and their team are highly skilled and knowledgeable in the diagnosis and treatment of lymphomas. They will be able to talk to you about your possible diagnosis, discuss the results of any tests or scans you have already had and explain about those you may still need to have. The team will also be able to talk to you about the options available to you for the treatment and management of your lymphoma.

This appointment may be received in the form of a letter or one of the team will contact you by telephone. Clinics are normally held on a Monday or Friday morning in the Outpatient department at the Queen’s Centre for Oncology and Haematology, Castle Hill Hospital.

We know that waiting for results can be a very stressful time. To speed this process up, you may be asked attend for a Positron Emission Tomography (PET) scan before your appointment with the Haematology Team. This will give the team more information about your lymphoma.

How do I prepare for the PET scan?

You will be contacted by a company called Alliance Medical; usually by telephone. Alliance Medical is a company who manages the PET service on behalf of NHS England.

The caller will explain about the PET scan and will ask you some questions about your medical history. You will receive detailed information about the time and date of the scan and any special instructions you may need to follow.

What will happen during my haematology appointment?

On the day of your appointment you should report to the outpatient reception within the Queen’s Centre where the receptionist will book you in. Before you see the doctor you will be asked to provide a blood sample and then you will be weighed and your height taken. The doctor will wait for the results of your blood test before they see you; this will take 30 – 45 minutes.

When the results are available the doctor will call you into a consulting room, you will then be asked a number of questions about you, your health, lifestyle and any symptoms you may have. You may also need to undergo a physical examination.

There may be a lot of information given to you during this appointment and you may have lots of questions. You might want to bring a family member or friend with you for support.

You may meet or be provided with the contact details of a Haematology Macmillan Clinical Nurse Specialist who will act as a point of contact/ key worker for you, should you have any questions prior to, during or after your appointment.

Should you require further advice on the issues contained in this leaflet, please do not hesitate to contact the Macmillan Clinical Nurse Specialist Team on telephone number (01482) 461087.

General Advice and Consent

Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.

Consent to treatment

Before any doctor, nurse or therapist examines or treats you, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to you. You should always ask them more questions if you do not understand or if you want more information.

The information you receive should be about your condition, the alternatives available to you, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:

  • you must be able to give your consent
  • you must be given enough information to enable you to make a decision
  • you must be acting under your own free will and not under the strong influence of another person

Information about you

We collect and use your information to provide you with care and treatment. As part of your care, information about you will be shared between members of a healthcare team, some of whom you may not meet. Your information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.

We may pass on relevant information to other health organisations that provide you with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your doctor, or the person caring for you.

Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about you. For further information visit the following page: Confidential Information about You.

If you or your carer needs information about your health and wellbeing and about your care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.