4
sahtak - June 2011
By M. Kay Siblani
Editor
L
ast year I was diagnosed, for the second time in my life,
with breast cancer. The first time around, four years ear-
lier almost to the day, I had a garden-variety lump detected
on a routine mammogram. Biopsy proved it malignant, and fol-
lowing a lumpectomy, lymph node removal, chemotherapy and
radiation, a new prognostic test determined I had less than a 10%
chance of recurrence if I took specific hormone obliteratingmed-
ication for five years. Youwho have been through this knowwhat
I am talking about.
Givenmy very checkeredmedical history—I have a habit of
getting things generally only seen inmedical texts and have edited
The Arab American News from far-flung hospital beds more
times than I care to admit — I chalked the experience up as not-
too-bad and went on with my life.
But last April I began a journey with a whole new cancer
monster. Breast cancer it is—or at least they are still calling it that
— but there the similarity stops. There was no lump. And the
mammogram and ultrasound were negative. Stranger still, while
you normally need to search for evidence of a lump to get the at-
tention of an oncologist — this breast cancer made itself very,
very evident. So evident, in fact, that it stops you in your tracks.
You and anyone else who sees it at its worst. The nickname used
by those of us who live with it says it all: The Eggplant (bat-in-jen)
Surprise. Yep, it might happen slowly, over a few weeks or
months, or it might happen overnight. But one day one of your
breasts suddenly resembles an eggplant, heavy, swollen and pur-
plish red. It can itch like crazy and the skin can look like the peel
of an orange. The nipple may or may not be affected. There may
or may not be pain. I had Inflammatory Breast Cancer. I had
never heard of it. The worst news? It is the most aggressive and
deadly form of breast cancer, with staggering statistics.
Now at this point you might be wondering, why go so public
with all this drama? I never intended to. But recently I learned
the incidence of IBC in the general Caucasian American popu-
lation is 2.5-5%of all breast cancers. It is considered very rare. In
African American women, the incidence is 10%. But get this: In
the NorthAfrican andMiddle Eastern population, the incidence
is a whopping 15% — a major public health issue given IBC's
generally very aggressive and deadly course. In the entire world,
the country with the highest rate of IBC is Tunisia, with Egypt
and Morocco not far behind. Dr. Sofia Merajver, PhD, of the
University of Michigan Comprehensive Cancer Center in Ann
Arbor, is a pioneer of U.S. and international research on Inflam-
matory Breast Cancer, with ongoing studies in Egypt, Tunisia
and Morocco.
Then I learned something else. A surprising number of young
women with IBC had their first symptoms during pregnancy or
lactation. These symptoms are oftenmistaken for mastitis, a nor-
mal breast infection that commonly affects lactating women.
Hormonal changes in breasts during pregnancy are common too.
Given the high birth rate among Arabs, and their tendency to
breastfeed, we have an issue here. Themisconception is that these
young women are at lower risk for breast cancer and the fact that
IBC is the most aggressive form of breast cancer may result in
metastases already present when the real diagnosis is finally
made. Don't misunderstand. I amnot saying pregnancy or breast-
feeding are risk factors for IBC, but that if you develop IBCwhile
pregnant or breastfeeding, it may take longer and be more diffi-
cult to diagnose unless you or your physician is aware of the pos-
sibility of IBC .
Inflammatory Breast Cancer generally affects women at a
younger age than typical breast cancer. It grows in sheets just
under the skin and in the lymphatic system, which accounts for
its ability to rapidly spread. It requires early diagnosis and ag-
gressive interventionwith chemotherapy prior to surgery, instead
of following it. It is treated differently than more common types
of breast cancer. In fact, one of the top physicians in the country
expert in IBC, Dr. Massimo Christofanelli at Fox ChaseMedical
Center in Philadelphia, says IBC is not a locally advanced breast
cancer (LABC) as once thought, but a distinct entity all its own
with differing treatment modalities. It may, say some, really be a
formof skin cancer that happens to develop in the breast. Slowly,
the disease is getting more attention, often through patients like
myself who have the disease and the opportunity to educate
about it.
If you are diagnosed with IBC, be sure to see someone who
specializes in the disease, if just for a second opinion or guidance.
IBC is treated differently from typical breast cancer. Having sur-
gery too soon can considerably worsen your chances of survival.
Generally a heavy course of chemotherapy that elicits observ-
able improvement in the appearance of the breast should be had
before surgery is performed.
Once you have IBC, you always have IBC. You are always
waiting for its next appearance and the treatment regimen that
comes with it.
So please be aware. Changes in your breasts must be taken se-
riously. The inset on this page lists the most common symptoms
of IBC. One way to distinguish it frommastitis is by the absence
of fever, which you generally would have with an infection. And
the only, single way to determine whether or not what you have
is IBC is by a biopsy. If you have symptoms, your mammogram
and/or ultrasound are negative, and you have no response to an-
tibiotics after a week, insist on the biopsy. It may save your life.
Just to end on a positive note, I have learnedmany important
things in this journey with cancer, things that can assist every-
one, whether or not they are ill. Because of frequent recurrence
and so many young women being affected, IBCers are warriors,
educating the public and consulting with each other and being
very proactive in their own treatment regimens. Many of us have
children to raise and we fight to live on to do that. The statistics
are grim, but IBCers try not to think about them. No one really
knows when we are going to die. One of the most helpful
thoughts I have run across is this saying attributed to the late
Andy Rooney: Life is not about waiting for the storm to pass; it's
about learning to dance in the rain.
Sometimes we get soaked. But we dance on.
Signs and symptoms of IBC
• A swollen breast
• A painful breast
• May be hot
• Incessant itchiness
• A rash or red discolora on on one breast
• A bug bite that won't go away
• Nipple changes
• A hardened area in the breast similar to a
pencil lead, not a lump
• A dimpling of the skin that resembles an
orange peel in texture
• These symptoms may appear overnight
without warning. If they do not go away
with creams, ointments or an bio cs,
demand that your doctor rule out IBC
.
Inflammatory Breast Cancer
generally affects women at a
younger age than typical breast
cancer. It grows in sheets just
under the skin and in the
lympha c system, which
accounts for its ability to
rapidly spread.
A special risk for Middle Eastern women:
Inflammatory Breast Cancer
