NEWLY DIAGNOSED: Clarify your Hodgkin's diagnosis

A proper Hodgkin's lymphoma diagnosis is difficult to make and should therefore be made by a hematopathologist or blood pathologist. It will include at least three features, and together they will dictate your treatment:

1 SUBTYPE
2 STAGING
A. Involvement of nodal sites
B. Involvement of extranodal sites
3 CATEGORIES

1. SUBTYPE

There are two subtypes in Hodgkin's lymphoma. Your diagnosis should indicate which one.

Classical Hodgkin's lymphoma (CHL).
Nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL).

95% of all diagnoses are Classical Hodgkin's.

1a. CHL SUBTYPE

Classical Hodgkin's lymphoma is further divided into four subtypes:

Nodular Sclerosis Hodgkin's lymphoma (60-70%)
Mixed Cellularity Hodgkin's lymphoma (25%)
Lymphocyte-Depleted Hodgkin's lymphoma (4%)
Lymphocyte-Rich Classic Hodgkin's lymphoma (1%)

2. STAGING

Hodgkin's has four stages, expressed in Roman numerals (I, II, III IV). Each stage expresses a greater spread throughout the body. There is no better visual available than the one below, from the LLS pdf on Hodgkin's Lymphoma:

2.A. INVOLVEMENT OF NODAL SITES
When doctors talk about Hodgkin's involving "regional lymph nodes", "lymph node regions", "lymphatic sites" or nodal sites, they are talking about a classification system that was created in 1965 to group otherwise somewhat unassociated lymph nodes together so that everyone knew what everyone else was talking about. There are 9 core nodal regions for Hodgkin's lymphoma. The numbers below correspond to the numbers on the diagram below, but they are not numbered by convention—I numbered them for convenience (Also, on the diagram, I crossed out regions that are rarely ever involved in Hodgkin's). The 9 core regions are:

1. Right/Left Cervical lymph nodes (cervical, supraclavicular, occipital, preauricular)
2. Right/Left Axillary lymph nodes
3. Right/Left Infraclavicular lymph nodes
4. Mediastinal lymph nodes
5. Right/Left Hilar lymph nodes
6. Paraaortic lymph nodes
7. Mesenteric lymph ndoes
8. Right/Left Pelvic lymph nodes (referred to on the chart as "Iliac")
9. Right/Left Inguinofemoral lymph nodes

The spleen and the thymus are also considered nodal or lymphatic sites. If your Hodgkin's spread to one or more of these regions, it should be noted in your diagnosis.

2.B. INVOLVEMENT OF EXTRANODAL SITES
Extranodal involvement of organ sites (also called extralymphatic involvement) means that the cancer has reached a site beyond the lymph nodes. When this is the case, staging should be written to add an E (such as Stage IIE). If there are more than one extralymphatic sites involved, sometimes doctors will add the number as a subscript after the E.

Possible extranodal sites include the Liver, Lungs, Bone, Bone marrow, G.I. tract, Skin, Kidneys, Ocular adnexae (regions around the eye) and the Central nervous system.

3. CATEGORIES

This feature indicates whether you are experiencing what are known as 'B symptoms': weight loss, night sweats and/or fatigue. If you ARE experiencing them, the letter 'B' is attached to the staging. If you are NOT experiencing them, the letter 'A' is added (as in 'Asymptomatic').

ENSURING AN ACCURATE DIAGNOSIS

Here's what you can do to ensure as precise a lymphoma diagnosis as possible, and avoid diagnostic mistakes that could cost you time and treatment:

1. INSIST that your biopsy be reviewed by a hematopathologist or blood pathologist—this will contribute to a more accurate diagnosis than one given by an ordinary pathologist.

2. REQUEST that your diagnosis be delivered you to you containing all the necessary constituent parts: (Circle each aspect if part of the diagnosis):

SUBTYPE
Classical Hodgkin's lymphoma (CHL)
or
Nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL).

If Classical Hodgkin's lymphoma (CHL), which subtype?
- Nodular Sclerosis
- Mixed Cellularity
- Lymphocyte-Depleted
- Lymphocyte-Rich Classic

STAGING:
I
II
III
IV

NODAL INVOLVEMENT? Y / N
R / L Cervical
R / L Axillary
R / L Infraclavicular
Mediastinal
R / L Hilar
Paraaortic
Mesenteric
R / L Pelvic
R / L Inguinofemoral
Spleen
Thymus

EXTRANODAL INVOLVEMENT? Y / N
Liver
Lung
Bone
Bone marrow
G.I. tract
Skin
Kidneys
Ocular adnexae
Central nervous system

CATEGORY:
A
B

Full Diagnosis:______________________________________________