Forum Fall 2013 - page 1

Cutaneous Lymphoma Foundation: Making sure each person with cutaneous lymphoma gets the best care possible
Primary cutaneous T-cell lymphomas
(CTCL) are very rare in children, teens
and adolescents compared with adults
aged over 50 years. Mycosis fungoides
(MF) is the most frequently diagnosed
primary cutaneous lymphoma in
childhood other than lymphomatoid
papulosis. However, due to its
uncommon manifestation in young
patients, the diagnosis of CTCL is
often delayed or missed. This is further
complicated by the fact that MF may
clinically simulate benign rashes, in
particular atopic dermatitis, eczema
or vitiligo. One of the most common
misdiagnosis is “ringworm”.
A few studies have described the clinical
and pathological aspects of MF in
children and adolescents. Investigators
found that most young patients
presented with white or very light-
colored, so-called “hypopigmented”
patches on the skin. When these patches
were biopsied and stained for certain
lymphocyte (white blood cell) markers,
the initial manifestation of MF was
characterized by the presence of CD8+
T-cell phenotype, unlike the CD4+
T- cell phenotype usually encountered
in MF. Of note, most young patients
were found to have early stage disease
without spread into blood, lymph nodes
or organs.
None of the published studies have
been large enough to assess prognosis
and outcome in childhood. However,
data from retrospective studies suggest
that the outcome of CTCL in childhood
seems rather better compared to adults
when monitored over a median time
period of 9 years. Very rarely, children
have flare-ups. This data is in line
with our experience at our centers
and the recent findings researched by
Dr. Guitart’s team at Northwestern
University who followed more than
100 children with MF. They found that
most children and teenagers with MF
had limited patch disease involving less
than 10% of the skin. Most importantly,
they found that young patients rarely (3
patients out of 76) developed skin tumor
lesions and none progressed into lymph
glands, organs or blood.
Lymphomatoid papulosis (LyP)
in children is also very rare; the
features of LyP are similar to adults
and characterized by crops of self
healing, itchy or burning skin lesions.
Lesions contain unusual cells that
are similar to those found in certain
types of lymphomas, but the disease
is considered non-cancerous. Like in
adults, children have a risk to develop
a “true” lymphoma, but otherwise the
prognosis is excellent. When patients
with LyP develop lymphomas, they
remain mostly localized to the skin
and rarely spread to lymph glands. A
relatively common finding in children
with CTCL is the overlap of MF with
Cutaneous Lymphoma Foundation
PO Box 374
Birmingham, MI 48012-0374
telephone: (248) 644-9014
fax: (248) 644-9014
email:
Forum
is published by the
Cutaneous Lymphoma Foundation.
Disclaimer
The Cutaneous Lymphoma Foundation does
not endorse any drugs, treatments or products
reported in this newsletter. Information is pro-
vided for informational purposes only. Because
the symptoms and severity of cutaneous lym-
phoma vary among individuals, the Cutaneous
Lymphoma Foundation recommends that all
drugs and treatments be discussed with the
reader’s physician(s) for proper evaluation,
treatment and medical care.
INSIDE THIS ISSUE
From the President and the Chief
Executive Officer............................... 2
Welcome New Board Member........ 3
My Personal Journey:
Donna Hussey........................................ 4
Cheryl’s Tips for Staying “Sane”
During Treatment............................... 5
The Affordable Care Act:
The Basics Cancer Patients Need to
Know ................................................... 6
Cancer Insurance Checklist ............ 7
Patient Educational Opportunities .....8
Advocacy Highlights ............................9
7th World Congresss on Itch
Highlights.......................................... 10
Annual Fund Campaign..................12
Fall 2013
Forum
utaneous Ly pho a Foundation: Making sure each person with cutaneous ly pho a gets the best care pos ible
Diagnosing and Treating Young CTCL Patients
Diagnosing and Treating...continued on page 11
Christiane
Querfeld,
MD, PhD,
Memorial
Sloan
Kettering
Cancer
Center, New
York
Joan
Guitart, MD,
Northwestern
University,
Chicago
1 2,3,4,5,6,7,8,9,10,11,...12
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