Transcript Slide 1

Missing Pieces and Parts:
Grieving for the Familiar
Kristi Schmitt Burr
Executive Director
Basal Cell Carcinoma Nevus Syndrome
Life Support Network
Burton, Ohio
Loss can be as simple as
popping an artificial
fingernail . . .
Or stressing over
where you put the
car keys
But for the person with skin cancer
Contributing member of society
or victim? Loved one or patient?
Dependable
co-worker
Provider
Spouse
Caregiver
Child
The roles they have worked their entire lives to establish,
may be changed in a second, with a snip, cut and cavernous hole
or absent facial piece left behind in the office,
on the stainless steel tray, never to be the same again.
Role of the Ear
• Better to hear you with,
my dear
• Holds the glasses securely
on the face
• Achieves the symmetrical
balance to the way others
perceive you, and how you
perceive yourself
• Defines the hairline and style
• Fits well below the cap, hat,
chapeau
Before & After-Ear
Nose
• Centerline to the face;
• Establishes character,
definition
• Butterfly symmetry
whether large or small
• Place holder for glasses
• Hides the sinuses,
mucous, hair
• Permits air passage
• Creates an image
Before & After-Nose
Eyes
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Sight
Balance
Symmetry
Expression,
Windows to the
spirit and soul
• Eyelashes, brows, color
“Save the eyes,
save the eyes,
save the eyes!”
Ancestry, culture, heritage
Eyes: The windows to the soul: We still yearn
and miss the faces that we were born with.
Losing his sight was difficult, but losing the respect
of his family, unbearable, until reconstruction
Tell-Tale Signs
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Chalazion
Missing Eyelashes
Pimple
Areas that Evaporates or Erodes
Scaly upper/lower eyelids
Bleeding on the eyelid
When surgery alters our looks,
it alters who we believe ourselves to be
• We begin to
experience loss as a
reflection of how
people react to the
visual field . . . now
defined, not by
character nor
personality,
but by the absence of
a piece of skin.
Aftermath
• Having a spareprovides security
• Losing one of the
pair, (eye, ear,
kidney), you become
keenly aware that you
no longer have a
spare, and with any
irritation you become
more alarmed, fearful
• Consequence of
losing olfactory
system
• Smelling a gas leak
• Harmful substances,
toxic food, infections
• Taste - Food
becomes difficult to
appreciate
Where is the clean margin?
Where is the origin?
What is the prognosis?
Ulcerative, morpheaform, nodular?
Are we done yet?
Repair can rekindle hope and
happiness, pride and synergy
• Reconstruction
• Prosthetics, implants, grafts, flaps
Social Acceptance
• Can there be
happiness, love
and a bonded
union, following
extensive skin
cancer?
Affecting Long Term Family Relationships . .
Who will care for severely affected
children now adults when their parents cannot?
If sunscreen were really the answer,
would these children be safe? Or are they
destined to be isolated, apart from their friends?
High School Class president, voted “Most Congenial”,
and now The Gorlin Advocate and proud Grandpa.
Who is that person looking back at us from the
mirror? Is perception the new reality?
What we dream, and what is real: we mourn the loss of our
own perception of attractiveness, struggling with
discovering our inner beauty & developing strength to cope.
Stage IV Metastatic Disease
There is no such thing as JUST a . . .
Squamous Cell
Evolving Skin Tag
Basal Cell
Small Melanoma
Colored Mole
Spitting Suture
Which require . . .
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MOHS
Biopsy
Excision
Curettage
To reveal . . .
• Tumor
• BCC
• SCC
• Melanoma
Everyone knows how to do
a breast self exam but . . .
Do you know how to do
a skin self exam?
Head
Shoulders
Knees &
Toes
Knees &
Toes
Head
Shoulders
Knees &
Toes
Knees &
Toes
Eyes &
Ears &
Mouth &
Nose
Head
Shoulders
Knees &
Toes
Knees &
Toes
Inheritance Factor
Family histories and early
intervention teams are
essential for genetic
counseling, reproductive
knowledge and changing
the course . . .
It is not just about the reconstruction, but
accepting that which we cannot change
How do you live in a neighborhood and be accepted,
respected, and contribute to the community,
when adults and children avoid you?
Separation Anxiety/Loss
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Biting Nails
Over/Under Eating
Smoking
Emotional
Social
Vocational
Acting Out
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Despondence
Fear
Isolation
Anger
Reclusion
Obsessive behavior
Sarcasm
* At the St. Louis BCCNS Symposium in 2005, 50% of participants were at
risk for clinical depression and in need of further assessment.
Skin Cancer is not a
“Sexy Disease”
• One in every four people will experience
some form of skin cancer
• Not a cocktail party subject
• Suffers from public misconception
• Personal inter-relations
• Suppresses intimacy
• Cannot hide the effects, the
scars are visible; hence no relief
from public scrutiny
US Cancer Statistics-2008
• Skin cancer is the most common form of cancer in the United States.
More than one million skin cancers are diagnosed annually.
• Each year there are more new cases of skin cancer than the combined
incidence of cancers of the breast, prostate, lung and colon.
• One in five Americans will develop skin cancer in the course of a
lifetime.
• Basal cell carcinoma (BCC) is the most common form of skin cancer;
about one million of the cases diagnosed annually are basal cell
carcinomas. Basal cell carcinomas are rarely fatal but can be highly
disfiguring. BCC’s can metastasize and are responsible for severe
morbidity and mortality.
• In 2004, the total direct cost associated with the treatment for nonmelanoma skin cancers was more than $1 billion.
References: BCCNS Life Support Network; Skin Cancer Foundation
What can You do to help?
• Pre-medicate to reduce anxiety
• F/u calls after surgery that are initiated by the office
• Referrals to support group, counselor, psychologist,
patient advocate
• “I’m so sorry!”
Focus on what is good, healing, positive.
What constructive things can you say/do?
• Build a medical dermatology practice support team
• CURE- Campaign for Urgency to Reduce and Eradicate
Skin Cancer
• BUDDY UP FOR SKIN CANCER
• Much is expected,
from whom much has been given
Hold a hand, save a soul
Early intervention
• “Beauty may be skin deep,
but the physical and emotional damage
caused by skin disease
affects a child for life.”
Christine Tenconi,
Children’s Skin Disease Foundation
It takes a NETWORK
• Join and support patient advocacy organizations
• Coalition of Skin Diseases, Cleft Palate Craniofacial Association,
Commission on Dental Accreditation, Genetic Alliance, NORD
Thank you for your kind attention
• Special thanks to our MAB Members: Dr. David Bickers, Columbia Univ.;
Dr. Ervin Epstein, CHORI; Dr. John Hellstein, Univ. of Iowa; Dr. William
Lynch, Univ. Dermatologists Inc.; Dr. Maulik Shah, Dr. Marc Levine,
Ophthalmic Consultants & Surgeons of Cleveland, Inc.
• Dr. Murad Alam, Northwestern Univ.; Dr. Simon Yoo, Northwestern Univ.;
Sheila LaRosa, BCCNS Life Support Network;
• In honored remembrance of: Dr. Robert Gorlin; Dr. Alan Oseroff; Wilbur
& Eleanor Schmitt; Sarah Burr; Ren Bradley; Jim Costello
We can become what we dream if fat,
furry worms can fly.