Terry Arnold was diagnosed with triple negative Inflammatory Breast Cancer (IBC) in the summer of 2007. Later she founded of The IBC Network Foundation, focused on funding research for this disease and advocating for the needs of women diagnosed with IBC. What follows is information I asked Terry to put together. For me, October is about education over awareness. Fact over fiction. Evidence over anecdotal. And now, Terry:
Inflammatory Breast Cancer (IBC) is a rare and highly fatal form of breast cancer that is not typically discovered by mammogram and often occurs prior to standard breast cancer screening age recommendations.
Most people are very uneducated about IBC, and misdiagnosis is a common reason for delayed treatment. Although IBC is viewed as rare, only 4-6% of breast cancer diagnoses, IBC directly causes about 10% of total breast cancer deaths (i.e. 4000 deaths per year in the US) because of both aggressive biology and inadequate treatment.
Due to being classified as a rare disorder with only a clinical diagnosis, IBC does not have a medical encoding number and generally speaking, is not taught in medical or nursing school. Typically IBC does not form a lump but has other clear physical manifestations described in the post below. As a breast cancer without a lump, IBC is typically not addressed in pink awareness campaigns however we feel very strongly that this form of breast cancer needs to be better known.
A common phase in the IBC community is “rare does not mean never” and for everyone to be more educated about IBC, we will save lives.
During October, for breast cancer awareness month, the IBC Network Foundation has been sharing daily facts about IBC on social media with the #IBCFacts hashtag. These facts highlight differences between IBC and other breast cancers in an effort to promote education about this clinically distinct disease. This post is a collection of these facts written by Terry and one of her volunteers, Dr. Angela Alexander, an IBC and TNBC researcher at MD Anderson. (Note from AM again: Angela is a great friend to the entire breast cancer community. She jumps in to clarify research findings and helps us sort through what may, at times, be impossible to decipher)
For these reasons, we are passionate about including IBC in the conversation so that more women are aware of this orphaned disease and ask that they share this information and advocate for increased research funding for this highly fatal 200-year old form of breast cancer. For more information regarding IBC, visit the IBC Network website at www.theibcnetwork.org or contact Terry or Angela on twitter at @TalkIBC or @thecancergeek.
- 5% of total BC, but 10% of BC deaths.
- What is IBC? IBC = a type of breast cancer. Has outward signs, and biopsy will reveal invasive breast cancer (usually invasive ductal carcinoma)
- No molecular definition exists for IBC yet. Many studies at MD Anderson and elsewhere have tried to find one. We don't know why so hard!
- Who gets IBC? IBC doesn't discriminate. Young/old women can get this form of breast cancer (age 20-70+).
- IBC can arise during/shortly after pregnancy which can be a reason for delayed diagnosis.
- IBC doesn't care what race you are either. Caucasian, African-American, Asian, Middle Eastern...all races susceptible.
- Diagnosing IBC is difficult -> not easy to see on a mammogram & often missed. Mammograms can look like this
- IBC skin thickening and diffuse tumor areas are more easily visualized by MRI & ultrasound.
- Only one third of women with IBC have palpable lumps. IBC can be spread out over the entire breast very quickly. NoLumpStillCancer!
- Have signs of IBC? Make a dr appointment promptly! IBC progresses quickly & earliest detection is at stage 3.
- At diagnosis, 30% of IBC is already stage 4 (metastatic). The rest is stage 3. There is no early diagnosis possible.
- IBC cells on the move can block lymphatics around the breast. Result = IBC affected breast swells to 2-3 times size of other one.
- Several more differences from other breast cancers to be aware of: IBC breast can have shooting pains, or other physical signs.
- Common IBC misdiagnoses: mastitis, abcesses, reactions to bug bite. Antibiotics often prescribed if dr doesn't know about IBC.
- "Peau d'orange" (literally orange peel skin) is a classic appearance, but not required for diagnosis of IBC.
- IBC treatment is different from regular BC. If you are concerned, get IBC specialist attention - you're worth it. Get the best care!
- There are only a few IBC specialist clinics in the world. MD Anderson was first (and is largest), opened in 2006.
- We mentioned IBC treatment is different. Order of care is critical. Chemo 1st, Mastectomy 2nd then radiation if stage 3.
- Lumpectomies are not recommended in IBC. There is no lump to remove. The skin which had/has disease must be removed.
- Radiation is not optional. Its job is to mop-up any remaining tumor cells scattered around that the surgeon couldn't see to remove.
- We described IBC treatment yesterday. Its called a tri-modal approach. Did you understand why the 3 types of tx are all important?
- Stage 4 IBC treatment is personalized. Some might not get surgery & radiation, and stay on maintenance systemic drugs forever.
- Despite the optimal IBC tx being published, 1/3 women w/ IBC do not receive good care. Article http://www.chron.com/news/houston-texas/houston/article/Study-Many-women-not-getting-correct-care-for-5682254.php
- One reason for bad care is that IBC is not taught in med school. Even textbooks on BC often only have a few paragraphs on IBC.
- Future IBC specialists learn IBC care specifics during residency/fellowship if they train at a high volume cntr w/ enough IBC pts.
- Some pathological diffs: IBC is less often ER/PR+ vs other BCs. 40% of IBCs are HER2+. 30% = triple negative (ER, PR, HER2 neg).
- IBC metastatic patterns similar to other breast cancers. Bone is the most common distant site. Lung, liver and skin also very common.
- Triple negative IBC recurrences, when they occur are often early events
- On the other hand, making it past 5 years without a recurrence doesn't mean you're home free in IBC/other BCs.
- Accurate stats on IBC stages & recurrence are difficult to find. 1 reason = IBC lacks an ICD code, even in the new ICD10 system.
- We don't know about any IBC-specific genetic predisposition genes. Regular breast cancer risk genes (BRCA1/2) are relevant in IBC.
- Family history of IBC is rare - but not impossible. Prior history of other cancers not necessary for IBC diagnosis.
- IBC can be a second breast cancer diagnosis even if you had a prior mastectomy. Chest wall rashes may be a sign of secondary IBC.
- Breastfeeding your children doesn't seem to protect you from IBC, in contrast to some other breast cancers.
- Healthy diets are good for maintaining a healthy weight. Obesity is a risk factor for IBC. But not all pts are overweight.
- Intriguing epidemiological data exist about exposure to certain viruses leading to IBC. But viral etiology is difficult to prove.
- Some interesting viral research examples in IBC http://www.ncbi.nlm.nih.gov/pubmed/25478862 and http://www.ncbi.nlm.nih.gov/pubmed/23418456
- Last few days of IBC risk factors summary: IBC like most cancers = multi-factorial. Genes, environment, behavior, luck.
- While IBC is still a significant problem, there is hope. We know some 20-30 year IBC survivors! Not a death sentence.
- The IBC Network = full-time volunteer-run charity funding research as fast as we can. Help here: http://www.theibcnetwork.org/donate
And guess what, as of December 30th, I'm happy to share: When it comes to IBC, there's now an app for that! For Apple and Android. Wow. So impressed.