How to record recurrence, progression, and transformations

Cancer recurrence can be defined as the return of cancer after treatment and after a period of time during which the cancer cannot be detected. The length of time is not clearly defined; however, the patient would have previously been informed that they are free of the disease or that the disease is not detectable. The same cancer may come back where it first started or somewhere else in the body. For haematological malignancies, recurrence may be more commonly referred to as a relapse.

What are the types of recurrence?

The distinction between the types of recurrence of a previously treated tumour requires clinical interpretation. There are different types of cancer recurrence, for example:

• local recurrence - meaning that the cancer has come back in the same place it first started
• regional recurrence - meaning that the cancer has come back in the lymph nodes near the place it started
• distant recurrence - meaning the cancer has come back in another part of the body, some distance from where it started (often the lungs, liver, bone marrow, or brain)

When cancer spreads (increased growth speed) or gets worse it is called progression. Sometimes it is hard to tell the difference between recurrence and progression. A recurrence is where a patient has previously been informed that they are free of the disease or that the disease is not detectable. Progression of a disease is where this has not happened and may be during the initial treatment phase.

Metastasis or metastatic disease is the spread of cancer from one part of the body to another.

Distant metastases are tumour cells that have spread from the primary tumour and formed as distant growth in a different organ.

Notes:

• patients can present with metastatic disease with either a new primary, progression or recurrence
• patients should be recorded as a new primary, recurrence or progression with the distant metastatic type/site identified

Can someone have a metastatic tumour without having a primary cancer?

No. A metastatic tumour is always caused by cancer cells from another part of the body. In most cases, when a metastatic tumour is found first, the primary cancer can also be found.

However, in some patients, a metastatic tumour is diagnosed but the primary tumour cannot be found. These cases are referred to as ‘unknown primaries' or occult (hidden) cancer, and the patient is said to have ‘cancer of unknown primary origin’ (CUP).

Such cases should not be recorded as a recurrence, but as a primary cancer of an unknown origin with metastatic type and site at diagnosis recorded. For the recording of unknown primary cancer, please refer to NICE guidance.

A transformation is recorded where there is a change in the cancer type (morphology). This could be during initial diagnosis or treatment or can occur after an undefined period of time following initial diagnosis.

If a disease transforms from an in-situ cancer or non-invasive lesion (including non-invasive urothelial carcinoma) to a new primary invasive lesion, this must be recorded as a new primary diagnosis of cancer and not a transformation.

A remission is a term that is given when the disease cannot be detected in the body after first treatment is given. A remission can be temporary or permanent and does not need to be recorded within COSD.

Haematological cancers do not spread the same way as solid tumours and therefore the collection of metastatic type and metastatic site is not required. In addition, the term ‘relapse’ is often used to describe patients who have worsening disease. It is for the clinical teams locally to decide which is the most appropriate category to use for their haematological patients, such as recurrence, progression, or transformation.

For head and neck cancer, there are incidences of second primary cancers that develop at the primary site due to mucosal field change. The distinction between a recurrence of a previously treated tumour and a second primary requires clinical interpretation in making this distinction.

A referral flow chart/decision tree on ‘How to determine what pathway to record’, has been developed and displayed below to help support MDT Coordinators and cancer services teams.

Data can be recorded in COSD using one of 2 distinct pathways, as per the patient flow diagram 1 below. Depending on the data type, you would record these in either:

• the ‘Primary Cancer Pathway’
• the ‘Non-Primary Cancer Pathway’     

Option 1:

• new primary diagnosis
• progression
• transformation

Option 2:

• recurrence
• progression
• transformation

A decision can either be recorded on a ‘Primary Cancer Pathway’ or a ‘Non Primary Cancer Pathway’ as follows:

• all ‘New Primary Cancer’ diagnoses – create a new record on a Primary Cancer Pathway
• all ‘Recurrence’ diagnoses – create a record on a Non-Primary Cancer Pathway

‘Progression’ and ‘Transformation’ diagnoses, either:

• record the information on the existing ‘Primary Cancer Pathway’ (where the original diagnosis is already on the system)
• create a new record on a ‘Non-Primary Cancer Pathway’ (if you do not have an existing cancer record on your system, but the patient was diagnosed with cancer at another hospital)

Option 1

'New Primary' diagnosis

All 'New Primary Cancer' diagnoses.

Create a new record on a Primary Cancer Pathway and include:

• the ‘Primary ICD10’
• the ‘Tumour Laterality’
• the ‘Primary Diagnosis Date’

Then continue by adding as much detail to the record as possible, using the ‘Core’ and/or ‘Site Specific’ data items.

'Progression' diagnosis

Add progression details on the existing ‘original’ diagnosis including:

• the ‘Date of Progression’
• the ‘Metastatic Type (local, regional or distant)’
• the ‘Metastatic Site’

'Transformation' diagnosis

Add transformation details on the existing ‘original’ diagnosis including the ‘Date of Transformation’.

Note:

• additional 'site-specific items' may also be required as applicable to the tumour diagnosed, these are required only for the primary pathway

Option 2

For the Non-Primary Pathway, there is now a choice of 3 options – recurrence, progression or transformation, but only one should be used for each pathway/record submission.

'Recurrence' diagnosis

Create a new record for recurrence and include:

• the date of the non-primary diagnosis (note: this is the diagnosis date of the recurrence)
• the original ‘Primary ICD10’ diagnosis
• the ‘Metastatic Type (local, regional or distant)’
• the ‘Metastatic Site’

'Progression' diagnosis

Create a new record for progression and include:

• the date of the non-primary diagnosis (note: that this is the diagnosis date of the progression)
• the ‘Progression ICD’ diagnosis (note: this is the ICD10 of the original diagnosis)
• the ‘Metastatic Type (local, regional or distant)’
• the ‘Metastatic Site’

'Transformation' diagnosis

Create a new record for transformation and include the date of the non-primary diagnosis (note: this is the diagnosis date of the transformation), plus (if known), either:

• the ‘Original Morphology ICD-O-3’ of the transformation
• or the ‘Original Morphology SNOMED’ of the transformation

The below shows the pathway flows for new primary, recurrences, progressions or transformations. The text in the flowchart is also published in the body text of this page:

The flow of data required for each pathway is highlighted below, including the primary, non primary and shared patient pathway data items. There may also be additional data required through the site-specific sections.
Important notes:

• although there are shared sections, it is not expected that all data are submitted for every case
• only those that are applicable to each patient and their pathway (at that time) should be submitted
• all items in each group would be expected on pathways submitted through COSD (if applicable to the patient, their tumour and designated local pathway)

Primary Pathway:

• Core – Diagnostic – Primary Cancer Pathway Details
• Core – Referrals and First Stage of Patient Pathway
• Core – Diagnosis
  • Diagnosis Additional items
  • Diagnosis Progression
  • Diagnosis – Transformation
• Core – Staging (where applicable)
• Core – Site Specific Staging (where applicable)
• any site specific data items that are applicable to the patient, their diagnosis and/or treatment pathway

Non Primary Pathway:

• Core – Diagnostic - Non Primary Cancer Pathway Details - Choice
  • Recurrence
  • Transformation
  • Progression
• Core – Diagnostic - Non Primary Cancer Pathway - Referral

Shared Sections:

• XML Headers
• Record Identifier
• Core – Patient Identity Details
• Core – Demographics
• Core – Imaging
• Core – Diagnostic Procedures
• Core – Person Observations
• Core – Clinical Nurse Specialist + Risk Factor Assessment
• Core – Clinical Nurse Specialist - Holistic Needs Assessment and Personalised Care and Support Planning
• Core – Multidisciplinary Team Meetings
• Core - Cancer Care Plan
• Core – Treatment
  • Treatment – Surgery
• Core – Acute Oncology
• Core – Laboratory Results
  • Laboratory Results – General
• any site specific data items that are applicable to the patient, their diagnosis and/or treatment pathway