Inflammatory Breast Cancer myths and facts (corrected information regarding the myth).

1. TOP 10
IBC MYTHS

2. MYTH #1 - SO RARE, IT WON’T
AFFECT ME
MYTH:
IBC is very rare and mainly affects
black women. I am so healthy and
young - no way I could get this.
FACT:
IBC represents up to 5% of total
breast cancer in the US. Is 10-11K
cases rare? Officially yes, but not
impossible to be affected. If you
have symptoms of IBC please get
IBC excluded as a diagnosis.
Compared with other breast cancers,
it is more commonly diagnosed in
younger women.

3. MYTH #2: CLEAN MAMMOGRAM =
IT CAN’T BE BREAST CANCER
MYTH:
Lack of a mass on a mammogram
means my breast symptoms can’t be
IBC.
FACT:
Less than half of IBC can be seen on
a mammogram. IBC is often not a
lump but more like cotton candy
throughout the skin. IBC is most
easily observed on MRI or ultrasound.
A lump may or may not be present.

4. MYTH #3: BEST TO HAVE A
MASTECTOMY RIGHT AWAY!
MYTH:
My breast cancer is growing fast. It makes sense
to have a mastectomy and remove it ASAP before
it spreads more.
FACT:
Since IBC affects the skin and is diffuse, by
definition at diagnosis it is an inoperable breast
cancer. Neoadjuvant chemotherapy is the
standard of care for IBC, and only after a
response has been observed should a
mastectomy be performed.

5. MYTH #4: IT'S SO FATAL, WHY
SUFFER FROM CHEMO?
MYTH:
Everything I have read on the internet says it is fatal. My oncologist thinks it is bad
too. I have friends who really suffered while taking chemo....I don't want to have
those side effects before I die. I'll do alternative therapy instead.
FACT:
With tri-modal treatment (chemo, surgery and radiation), the outcomes in IBC have
improved. A lot of information on the internet is outdated. Chemotherapy often works
well enough to make the breast operable. More than 50% of stage 3 IBC patients are
now living more than 5 years free of disease. Even stage 4 patients are living longer
and better lives.

6. MYTH #5: NO FAMILY HISTORY -
HOW CAN I GET BREAST CANCER?
MYTH:
I have no family history of breast
cancer therefore I am safe.
FACT:
Only 5-10% of total breast cancer is
due to known hereditary genes (e.g.
BRCA1/BRCA2). The incidence of
mutation in these genes in IBC is
similar to non-IBC. Most IBC is not
hereditary. Like many cancers, IBC is
likely due to genetic predisposition
and environmental/behavioral factors.

7. MYTH #6: IBC CAN BE CAUGHT
EARLY
MYTH:
Articles on the internet say IBC can
be caught early.
FACT:
By definition IBC is diagnosed at
stage 3 or 4. Stage 3 means the
cancer is only in the breast, overlying
skin and lymph nodes. Stage 4
means the cancer has gone to other
organs like bone, liver or lung.

8. MYTH #7: I HAD BREAST CANCER
BEFORE....IT CAN'T BE IBC NOW
MYTH:
This red rash on my chest wall/breast can't be IBC - I had breast
cancer before.
FACT:
There are 2 types of IBC. Most IBC is called primary IBC, because
it arises in a previously normal breast. Some IBC is called
secondary if it arises in a breast with a previous breast cancer such
as a reconstructed breast or in the remaining breast tissue after a
lumpectomy. If you have a biopsy-proven invasive breast cancer
with IBC symptoms then you have a clinical diagnosis of IBC.

9. MYTH #8: RADIATION IS
OPTIONAL AND BARBARIC
MYTH:
I had a complete response to chemo. I
don't need radiation. I heard you get bad
burns and you have to go EVERY day for 6
weeks.
FACT:
Radiation is a critical component of IBC
care. Its job is to kill microscopic disease
the surgeon left behind to decrease the risk
of recurrence. While daily radiation
appointments are tiring, and your skin will
be burned it does improve quickly. The
temporary period of planning your life
around radiation is worth it to receive the
optimal treatment.

10. MYTH #9: I CAN HAVE RECONSTRUCTION
IMMEDIATELY OR CAN'T EVER HAVE IT
MYTH:
Other breast cancer patients have expanders placed at mastectomy to begin their
reconstruction. I should too.
OR: IBC is too fatal to have a reconstruction.
FACT:
In IBC, reconstruction (if desired) is recommended to
be delayed by 2 years.
Expanders are not recommended ever, due to the need
for radiation which makes the skin not ideal for
stretching. Placing expanders also means the surgeon must
leave skin behind which may harbor residual cancer!
The delay prior to starting reconstruction using your own
tissue is to make sure the early high-recurrence risk time
period has elapsed before beginning these large surgeries and
to permit optimal healing of the skin after radiation.

11. MYTH #10: MY PATHOLOGY SAYS INVASIVE
DUCTAL CARCINOMA NOT IBC
MYTH:
IBC is not real. My pathology report
says invasive ductal carcinoma or
infiltrating ductal carcinoma.
FACT:
IBC is a clinical diagnosis made
when a patient presents with any of
the IBC symptoms and has
invasive carcinoma that is biopsy-
proven. Unlike invasive ductal
carcinoma, IBC is not a histological
subtype. More than 80% of IBC is
of the ductal subtype.
Histology picture of invasive ductal carcinoma from
pathpedia.com

12. 10 IBC MYTHS…..
DEBUNKED!
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Email: terry@theibcnetwork.org