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Journal of Genetic Counseling
ISSN 1059-7700
J Genet Counsel
DOI 10.1007/s10897-011-9447-9
The Incentive
Ellen T.Matloff
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PROFESSIONAL ISSUES
The Incentive
Ellen T. Matloff
Received: 7 October 2011 / Accepted: 16 November 2011
#National Society of Genetic Counselors, Inc. 2011
Keywords BRCA1 .BRCA2 .Breast cancer .Early-onset
breast cancer .Genetic counseling .Genetic testing .
Hereditary breast cancer
When my inside line is ringing at 7:45 am, its my sister. I
jogged into my office that September morning and grabbed
my phone.
Kristina
1
has a lump in her breast.I gripped the
receiver between my ear and shoulder as I set down my
briefcase and slid off my jacket.
Okay. This does not mean she has breast cancer,I
assured her, but she does need to call her doctor today.
When was her last exam?
She had a pap smear last month, and her breast exam was
fine. This lump appeared from nowhere and itsprettybig.
I advised her to convince her friend Kristina to have a
biopsy if there was any question. I asked about family
history of cancer, and my sister was unsure. I told her that
Kristina needed to research this issue before her doctors
appointment. Before ending the call with I love you,I
reassured my sister that breast cancer in a 30-year old
woman is rare.
The next call was 10 days later. Its cancer and its big.
My little sisters voice cracked. My heart skipped a beat. I
wanted details. Would Kristina be willing to share her
pathology report? Yes. And it turns out that her fathers
relatives have breast cancer.
Okay, Chicken, I said, using my pet name for my
sister, unconsciously hoping to soothe both of us, We need
to stay calm, okay? Were going to get her to all of the right
people. She needs to see a genetic counselor before she
makes a surgical decision. Im going to call my friend
Kristen right now.
I called my trusted friend and colleague Kristen on her
private line and explained the situation. She promised to get
Kristina in right away and I knew Kristina would receive V.I.P.
treatment from here on out. I breathed a sigh of relief.
A few days later Kristinas pathology report rolled in
over our ancient fax machine. The tumor was large. The
lymph nodes were palpable and positive by needle biopsy.
It was triple negative, and it was Stage III. Fear coursed
through my veins.
Kristina saw Kristen for genetic counseling that day and
signed a release for me to be privy to all of her information.
Kristen called and said in a gentle counseling voice, Ellen,
I have bad news.I laughed, darkly. Kristen, seriously,
how much worse could it get?She didnt laugh with me.
She paused, bracing us both for her next sentence. Ellen,
Kristina has a known paternal family history of a BRCA1
mutation.
In that moment, all of the times Ive seen Kristina over
the years flashed through my mind: a work happy hour over
beer, my sisters shower and wedding, multiple visits to my
sister
s school. Never, ever, did she mention a family
history of cancer. Never did she ask about my work,
although she knew it well. Never did we discuss genetic
testing. I sobbed at my desk for the huge lost opportunity
and what I feared would come next. I sobbed for what my
sister would experience with her friend.
1
Name changed to protect privacy.
E. T. Matloff (*)
Yale School of Medicine/Yale Cancer Center,
New Haven, CT, USA
e-mail: ellen.matloff@yale.edu
J Genet Counsel
DOI 10.1007/s10897-011-9447-9
Author's personal copy
Kristina and her medical team chose to proceed with a
bilateral mastectomy, chemotherapy and radiation to the chest
wall. She was assumed BRCA1+ and her results confirmed
that hypothesis 2 weeks later. After the result disclosure my
sister called again, and this time she was angry.
Kristina has to have both breasts removed. And she has
to have chemotherapy, and all of her hair is going to fall
out. Do you have any idea how hard this is going to be for
her?! Do you have any idea how this will impact her body
image and dating? And is it true that shell have to have her
ovaries removed next? She wants children! This is so
unfair!! She is only 30 years old!
How would I tell my little sister that I prayed Kristina
would livelong enough to need a prophylactic oophorectomy?
Ididnt. I just said, I know, Chicken, I know. Imsosorry.
Kristina braved chemo, surgery and radiation and
worked throughout the school year as a teacher and coach.
She was tired and had chemo brain,but she bashed on.
She decided to take the next year off from school to recover
and travel Europe.
Chemo brainpersisted; that summer Kristina was no
longer herself and was having cognitive difficulties. Scans
showed metastases to the brain.
My sister called me, in a panic. Kristinas family is
having a last minute birthday party for her this weekend,
and we already have plans to go to the Cape with friends.
What do you think I should do?I paused for a moment.
Cancel your plans, Chicken.A longer pause and no
questions. Okay.
That fall one of Kristinas students organized a team to
walk in a breast cancer fundraiser in Boston. Kristina was
to watch from the sidelines, but she was not well enough to
attend. She sat in a chair in her hospital room looking out a
window where below hundreds of her students, the players
she coached, her colleagues, friends and family members
walked in the cold fall rain in pink t-shirts that read, Team
Johnson.Everyone hoped Kristina understood what she
was seeing. That December Kristina lost her battle with
breast cancer at age 31.
Genetic counseling is not a glamorous field. There are
no cush salaries, expense accounts, or company cars. We
have few exotic business trips and never fly first class. We
often have to fight to prove our worth to administrators and
even to other providers, and we spend countless hours
battling insurance companies. When Im having a bad day
and questioning if what we do is worthwhile, I think of
Kristinas team of students, marching in the rain for the
teacher they were soon to lose. We prevent this.
Acknowledgements Special thanks to my sister, Sarah Matloff
Redbord, and to my colleague and friend, Kristen Mahoney Shannon
for allowing me to share our joint story.
Matloff
Author's personal copy
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