Tuesday, October 27, 2015


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.


  1. 5% of total BC, but 10% of BC deaths.
  2. What is IBC? IBC = a type of breast cancer. Has outward signs, and biopsy will reveal invasive breast cancer (usually invasive ductal carcinoma)IBCSymptoms.jpg
  3. 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! 
  4. Who gets IBC? IBC doesn't discriminate. Young/old women can get this form of breast cancer (age 20-70+).  
  5. IBC can arise during/shortly after pregnancy which can be a reason for delayed diagnosis. 
  6. IBC doesn't care what race you are either. Caucasian, African-American, Asian, Middle Eastern...all races susceptible.
  7. Diagnosing IBC is difficult -> not easy to see on a mammogram & often missed. Mammograms can look like thisIBC-mammo.jpg 
  8. IBC skin thickening and diffuse tumor areas are more easily visualized by MRI & ultrasound.
  9. Only one third of women with IBC have palpable lumps. IBC can be spread out over the entire breast very quickly. NoLumpStillCancer!
  10. Have signs of IBC? Make a dr appointment promptly! IBC progresses quickly & earliest detection is at stage 3. 
  11.  At diagnosis, 30% of IBC is already stage 4 (metastatic). The rest is stage 3. There is no early diagnosis possible.
  12.  IBC cells on the move can block lymphatics around the breast. Result = IBC affected breast swells to 2-3 times size of other one.
  13.  Several more differences from other breast cancers to be aware of: IBC breast can have shooting pains, or other physical signs.
  14.  Common IBC misdiagnoses: mastitis, abcesses, reactions to bug bite. Antibiotics often prescribed if dr doesn't know about IBC. 
  15. "Peau d'orange" (literally orange peel skin) is a classic appearance, but not required for diagnosis of IBC. 
  16. IBC treatment is different from regular BC. If you are concerned, get IBC specialist attention - you're worth it. Get the best care! 
  17. There are only a few IBC specialist clinics in the world. MD Anderson was first (and is largest), opened in 2006.
  18. We mentioned IBC treatment is different. Order of care is critical. Chemo 1st, Mastectomy 2nd then radiation if stage 3. 
  19. Lumpectomies are not recommended in IBC. There is no lump to remove. The skin which had/has disease must be removed. 
  20. Radiation is not optional. Its job is to mop-up any remaining tumor cells scattered around that the surgeon couldn't see to remove. 
  21.  We described IBC treatment yesterday. Its called a tri-modal approach. Did you understand why the 3 types of tx are all important? 
  22. Stage 4 IBC treatment is personalized. Some might not get surgery & radiation, and stay on maintenance systemic drugs forever. tri-model flow chart..jpg 
  23.  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 
  24.  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.
  25. Future IBC specialists learn IBC care specifics during residency/fellowship if they train at a high volume cntr w/ enough IBC pts.
  26. Some pathological diffs: IBC is less often ER/PR+ vs other BCs. 40% of IBCs are HER2+. 30% = triple negative (ER, PR, HER2 neg). 
  27. IBC metastatic patterns similar to other breast cancers. Bone is the most common distant site. Lung, liver and skin also very common.
  28. Triple negative IBC recurrences, when they occur are often early events
  29. On the other hand, making it past 5 years without a recurrence doesn't mean you're home free in IBC/other BCs.
  30. Accurate stats on IBC stages & recurrence are difficult to find. 1 reason = IBC lacks an ICD code, even in the new ICD10 system. 
  31. We don't know about any IBC-specific genetic predisposition genes. Regular breast cancer risk genes (BRCA1/2) are relevant in IBC. 
  32. Family history of IBC is rare - but not impossible. Prior history of other cancers not necessary for IBC diagnosis.
  33. 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. 
  34. Breastfeeding your children doesn't seem to protect you from IBC, in contrast to some other breast cancers.
  35. Healthy diets are good for maintaining a healthy weight. Obesity is a risk factor for IBC. But not all pts are overweight.
  36. Intriguing epidemiological data exist about exposure to certain viruses leading to IBC. But viral etiology is difficult to prove.
  37. Some interesting viral research examples in IBC http://www.ncbi.nlm.nih.gov/pubmed/25478862  and http://www.ncbi.nlm.nih.gov/pubmed/23418456
  38. Last few days of IBC risk factors summary: IBC like most cancers = multi-factorial. Genes, environment, behavior, luck.
  39. While IBC is still a significant problem, there is hope. We know some 20-30 year IBC survivors! Not a death sentence.
  40. 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.

Like it?  Share it!


  1. Thank you so much for sharing this info. I am a 13 1/2 year IBC survivor.

    1. Thank you for sharing THAT. As for the info-all credit to Terry and Angela. They are tireless and I just offer support and a big mouth whenever I can.
      Stay Well,

    2. Hi Anonymous did you go on chemo and mastectomy ... For how long .... Been diagnosed of IBC last year and now I'm on stage 4

  2. Thanks for this. I'm passing all this info along. I never thought I would have this disease and had never heard of it before when diagnosed and I am a nurse.

    1. Hi Chris,
      And I think that goes to one (or more) of the points above. It's not taught in medical school and there is no code for IBC. Thank you for sharing the important info wherever you can. Education is essential.
      My best,

  3. Thank you for sharing this information AnneMarie. Your blog will save a life, I am sure it of. The more we talk about inflammatory breast cancer the better Also, in a world that might be a little "pinked out" remember, IBC has not had it's turn in the spotlight, and the time is now.

    Also huge thank you to Dr. Angela Alexander who volunteers tirelessly with the IBC Network Foundation and helped prepare these facts. Hope always, Terry Arnold

    1. Dear Terry,
      It is my honor to use this space to share the information that you put together with the help of Dr. Alexander. Thank YOU for all you do to support and educate about IBC. We are pinked out and yet, with all the pink, how many know about this? I'm betting not many. I appreciate all you have done to make this post possible and we will keep talking.
      Love and hope,

  4. What is the source for that flowchart, please?

    1. I will pass that question Dr. Alexander and will cite the info. Thank you for asking.

    2. Hi Anne Marie, The flowchart is a piece of a larger LABC figure from a recent Nature Reviews Clinical Oncology article. Here is the pubmed link to it, http://www.ncbi.nlm.nih.gov/pubmed/25668732, however the article is behind a paywall. I would be happy to forward it to you or anyone who is interested in reading the PDF.

    3. Chart was printed in Nature and is a flowchart developed from the NCCN guidelines for IBC. The NCCN guidelines for Breast Cancer is a 187 page document that you can access through their website (you have to sign up for a free account first). The flow chart is on page 67 (or close) and then on page 136 it's written out. The shame of it is that of 187 pages, less than 180 are specific to IBC. ~AM

    4. Thanks so much, Angela. Now anyone reading knows why there's a shout out to you in the narrative above the list!

    5. And for anyone's amusement..... less than 180 pages? See comment above.... THAT is MY unique brand of chemobrain. I meant to say less than 7 of them are specific to IBC. Egads......

  5. Why don't we amp up the pink with flaming edges and give IBC it's own ribbon and spotlight!? I have a dear friend who was diagnosed Jan 6, 2015 with triple negative breast cancer. She fought it and won. Fast forward exactly one year, Jan 6, 2016, she was diadnosed with IBC. The fight begins again! She is brave and has a strong faith but I know she is frightened and weary too. IBC needs to be studied just as aggressively as the disease itself! Thank you for you posts. I keep researching and studying so I can give her and her family hope. God bless

    1. Join us! We are doing something about IBC.


  6. I was diagnosed on 12/07/15 w/IBC triple negative stage 3. I've had both breast removed and 14 rounds of chemotherapy. I will be starting 30 rounds of radiation. I'm 38 years old. I was thinking of not having radiation because of the damage it causes. Concerned about side effects from it.

    1. Hi Tiffany,

      My **best** suggestion is that you discuss your concerns with a radiation oncologist. They are the ones who can speak about side effects and potential problems. If I were you, I would prepare a list of questions addressing your concerns. At the same time, I would ask if they have information regarding patients who may have been similarly diagnosed. Can they break down the results of those who chose radiation to compare against those who did not radiate? I'm not sure what is kept in the databases but I'm guessing there may be studies they can share so that you can make a fully informed choice.

      Your concerns, indeed, all concerns, are legitimate and we should be comfortable that we are making the choice that is right for each one of us. What's acceptable to one person may not be acceptable to another and the only way to make your decision is with all of the information, provided to you in a way that you can understand.

      If you happen to get a doctor who takes that "because I said so" stance, I would seek another opinion. Like you, I need to know about the benefits of my choices before I proceed.

      My very best,


  7. I just had a coworker diagnosed with IBC Stage 4 at the age of 28. They also said it has spread to her lymph nodes and they found two masses in her liver. I am still trying to understand if by "incurable" that it means certain death or if this is something that can be survived if maintained and treated.

    1. First of all, I am so sorry to read this. Honestly, I am sickened over the fact that a 28 year old is dealing with this. It only reaffirms that I will not stop advocating until I see meaningful change.

      Second, I do believe Terry Arnold can be contacted via the IBC website. I would suggest you contact her for guidance. Terry knows a lot about the details of inflammatory breast cancer. She may be able to help navigate.

      If you would prefer, please email me at anncicc@gmail.com and I will make an introduction to Terry.

      I care. Deeply.

      Sending love,

    2. Please contact me so we can talk. IBC is a very cruel disease but here is always hope. www.theibcnetwork.org and please download our free app. It has step by step information for patients and friends/family to help explain.

      Terry Arnold, dx stage 3 triple negative inflammatory breast cancer summer of 2007

  8. Thank you for this informative post. I would like to share this topic in my blog and hope it will be helpful to my users.

    1. Please feel free to share this. It's important to educate as many people as possible about IBC which is too often overlooked as something other than what it is. Thank you for helping get this out there. ~AnneMarie

  9. Dx 6/16/16 with IBC (between stage 2-3) with 1 node involvement. ER+/Her2+
    Underwent 6 rounds of chemo, mastectomy 11/9/16 with no sign of cancer in lymphnodes (they took 12), less than 7mm remained in breast, and clear margins. I AM CANCER FREE! I intend to stay that way forever!!! Start radiation in a few weeks. Dealing with cellulitis from expander placement at the moment.

    1. <3 What a nice thing to see to start the new year! Sending love and support your way. ~AnneMarie


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