The 31 Days of October event will be here before you know it!  We are setting up physical events but some of our supporters have asked for a way to do a virtual social media event. If you wish to do a virtual event, you can post some facts about IBC (from the list below, we have more than one for each day)  or  you could share from our Stories of Hope, or pictures from our Instagram,  invite someone to attend an event, or even make a page personizled fundraiser with a small goal of $100.  Anything you do, can and will, have an impact for good!

Please use the hashtag #IBCFacts and as always, Thank You!

1.

Inflammatory Breast Cancer (IBC) represents only 2-5% of total breast cancers, but 10% of breast cancer deaths.

2.

What is IBC? IBC is an aggressive breast cancer that has outward physical signs. Look for: swelling, rash, shooting pain, or itching. Commonly misdiagnosed as mastitis.

3.

No tumor-specific molecular definition exists for IBC. Many studies have been donewhich find different mutations and patterns of gene overexpression, however nothing sofar that is 100% specific for IBC.

4.

Current research to differentiate IBC focuses on defining non-tumor cells in the breastthat may cause IBC to behave differently.

5.

Who can get IBC? IBC doesn’t discriminate. IBC tends to strike younger women, but allages are at risk. Men too. The average age at diagnosis is 5 years younger than otherbreast cancers.

6.

IBC can arise during or shortly after pregnancy which can be a reason for delayeddiagnosis. Pregnancy frequently causes breast changes, making differences difficult toattribute to the cancer.

7.

IBC doesn’t care what race you are either. Caucasian, African-American, Asian, MiddleEastern…all races are susceptible. Also, IBC skin changes can look different fromCaucasian women. The redness/rash might be hidden on darker skin.

8.

Diagnosing IBC is difficult. It is not easy to see on a mammogram. Mammograms ofpatients with IBC can have a classic appearance including skin thickening anddistortions. There may or may not be a mass.

9.

Mammograms are not effective typically on younger women due to breast density(which shows up as white on the mammogram) and therefore it becomes difficult to findunderlying masses or distortions.

10.

IBC skin thickening and diffused tumor areas are more easily visualized by MRI andultrasound, but often a mammogram is the first test ordered.

11.

Only 10% of women with IBC have palpable lumps. IBC can spread very quicklythroughout the breast undetected. #NoLumpStillCancer

12.

Have signs of IBC? Make a doctor appointment promptly! IBC progresses quickly andearliest detection is by definition stage 3 due to skin involvement.

13.

At diagnosis, 30% of IBC patients have stage 4 (metastatic) disease. The remaining70% are viewed as stage 3. There is no earlier diagnosis than stage 3.

14.

IBC cells on the move can block lymphatics around the breast. The result is the IBCaffected breast may swell to 2-3 times the size of the other breast. Some patients havenipple retraction during progression of the cancer.

15.

There are several more differences from other breast cancers to be aware of: can haveshooting pains, or other physical signs such as skin redness, nodules and itching frominitial presentation. Take-home message: if something looks or feels different about onebreast or armpit, seek medical care for assessment.

16.

 

Common IBC misdiagnoses are mastitis, abscesses, or reactions to bug bite. Antibioticsare often prescribed if the caregiver is unaware of IBC.

17.

 

“Peau d’orange” (the skin literally looks like orange peel) is a classic appearance, butnot required for diagnosis of IBC.

18.

 

IBC treatment is different from regular breast cancer. If you are concerned, get an IBCspecialist’s attention – you’re worth it.

19.

 

There are only a few IBC specialist clinics in the world. MD Anderson opened the firstclinic in 2006 and is still the largest clinic for IBC care.

20.

 

Order of care in IBC is critical. Chemo is 1st (along with targeted therapy orimmunotherapy as appropriate), Mastectomy 2nd, then, 3rd is radiation. Systemictherapy can continue after radiation for some patients.

21.

 

A lumpectomy is not recommended for IBC. The disease is webbie and diffusedthroughout the breast, so a modified radical mastectomy is the standard of care toremove all the cancer and involved skin.

22.

 

Radiation is not optional. Its job is to mop-up any remaining microscopic tumor cellsscattered throughout the breast tissue.

22.

 

IBC treatment is called a tri-modal approach because all three types of treatment areimportant: Chemotherapy, Surgery and Radiation

24.

 

Stage 4 IBC treatment is personalized. Some might receive surgery and radiation andstay on maintenance systemic drugs forever.

25.

 

For patients with metastatic IBC, when one treatment fails, another treatment is initiateduntil treatment options run out. Stage 4 IBC is considered incurable, but treatable.

26.

 

IBC is not taught in depth during medical school. Textbooks on medical oncology orbreast cancer often only have a few paragraphs on IBC.

27.

 

Future IBC specialists learn IBC care specifics during residency/fellowship if they trainat a high-volume center with enough IBC patients. Others may only see 1 or a fewcases their entire career.

28.

 

Some pathological differences between IBC and other breast cancers: IBC is less oftenER/PR+ vs other BCs. 40% of IBCs are HER2+. 30% = triple negative (ER, PR, HER2negative).

29.

 

IBC metastatic patterns are similar to other breast cancers. Bone is the most commondistant site. Lung and liver are also very common organs that are affected.

30.

 

Brain metastasis and skin metastasis are more common in IBC than other BCs. Theseare particularly difficult sites of disease for treatment, so expertise at a specialty centeris important, where focused research is conducted.

31.

 

Triple negative IBC recurrences, when they occur, are often early events. On the otherhand, making it past 5 years without a recurrence doesn’t mean you’re home free inIBC.

32.

 

Accurate stats on IBC stages & recurrence are difficult to find. One reason: IBC lacks anICD code, even in the new ICD10 system.

33.

 

We don’t know about any IBC-specific genetic predisposition genes. Regular breastcancer risk genes (BRCA1/2) are relevant in IBC and treatment options based on thesegene mutations apply to IBC patients.

34.

 

Family history of IBC is rare – but not impossible. Many women with IBC do not have astrong family history of cancer.

35.

 

Healthy diets may reduce your risk of developing breast cancer for multiple reasons.Obesity is a risk factor for IBC, however not all patients are overweight.

36.

 

Intriguing epidemiological data exist about exposure to certain viruses leading to IBC.For example, viral DNA may be found in tumors. Viral etiology is difficult to prove.

37.

 

A few more facts of IBC risk factors summary: IBC like most cancers is multifactorial.Genes, environment, lifestyle, luck all play a role in the etiology of IBC.

38.

 

While IBC is still a significant disease, there is hope. We know some 20-30 year IBCsurvivors! IBC is NOT a death sentence. #HopeAlways

Now that you’re educated about IBC, we request you to share these facts and/or become a donor to improve the landscape of IBC forever. The IBC Network Foundation is a charity; funding research as fast as we can.

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