Top 10 Inflammatory Breast Cancer (IBC) myths

TOP 10 IBC MYTHS

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.

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.

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.

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 A lot of information on the internet is outdated.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.

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.

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.

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.

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.

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 tobe 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.

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

10 IBC MYTHS…..

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