The Unheralded Breast Cancer

| December 30, 2013 | 17 Comments

As a breast can­cer advo­cate, blog­ger and writer, I believe it impor­tant to sup­port all types of breast can­cers.  Last week I had the oppor­tu­nity to meet some­one who has had Inflam­ma­tory Breast Can­cer (IBC).  Our con­ver­sa­tion did not get very far before I real­ized I knew very lit­tle about this disease.

My friend, Terry Arnold, was diag­nosed with Triple Neg­a­tive Inflam­ma­tory Breast Can­cer seven years ago.  Ini­tially, she was mis­di­ag­nosed.  Although rare, it is also a very aggres­sive dis­ease in which can­cer cells block lymph ves­sels in the skin of the breast.  It is called inflam­ma­tory because many times the breast looks swollen, red or inflamed.

Its pro­gres­sion is rapid, often in a mat­ter of weeks or months.  Inflam­ma­tory Breast Can­cer is gen­er­ally stage III or IV at diag­no­sis depend­ing on whether there is lymph node and/or tis­sue involvement.

Inflam­ma­tory Breast Can­cer does not show up on mam­mo­grams.  It can be detected by Ultra­sound, Mag­netic Res­o­nance Imag­ing as well as other sophis­ti­cated scans.

Although the dis­ease was writ­ten about as far back as the 1800’s, when Terry was diag­nosed, find­ing lit­er­a­ture on the dis­ease as well as other resources avail­able was dif­fi­cult.  Peo­ple cre­ate net­works out of need and neces­sity.  Terry was no excep­tion.  Based on her per­sonal expe­ri­ence, Terry founded The IBC Net­work Foun­da­tion.  This non­profit orga­ni­za­tion serves as a bea­con for others.

Some tid­bits that Terry shared with me:

  • Inflam­ma­tory Breast Can­cer has been referred to as the orphaned form of breast cancer.
  • Early detec­tion is not an avail­able as the signs are an out­ward phys­i­cal presentation.
  • Inflam­ma­tory Breast Can­cer is the most fatal of all breast cancers.
  • The term “remis­sion” does not apply to those with this type of breast can­cer.  “No evi­dence of dis­ease” (NED) is used instead.
  • We can­not research a dis­ease if it is not funded.
  • There has never been a pub­lic ser­vice announce­ment (PSA) on this type of breast cancer.
  • Komen just started includ­ing IBC in their lit­er­a­ture this year.

Breast can­cer does not dis­crim­i­nate, yet it would appear we are not all on the same team.  Those with Inflam­ma­tory Breast Can­cer have been left to fend for them­selves.  It is time that we as a breast can­cer com­mu­nity acknowl­edge, include and sup­port them.

Terry Arnold has been “no evi­dence of dis­ease” for six years!  If you want to learn more about her net­work, please check out their site at:  www.theibcnetwork.org.

 

 

 

 

Category: Breast Cancer Wellness

Comments (17)

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Sites That Link to this Post

  1. The Unheralded Breast Cancer - The IBC Network Foundation | January 3, 2014
  1. Thank you so much for writ­ing about IBC, Inflam­ma­tory Breast Can­cer needs to be talked about. I espe­cially liked the pas­sage, “Breast can­cer does not dis­crim­i­nate, yet it would appear we are not all on the same team. Those with Inflam­ma­tory Breast Can­cer have been left to fend for them­selves. It is time that we as a breast can­cer com­mu­nity acknowl­edge, include and sup­port them. ” Just gave me chills! Thank you again, so very much,
    Hope always,
    Terry

    • Wendy Doherty says:

      Terry, thank you for your kind words. I am pleased that you like the arti­cle. The IBC Net­work Foun­da­tion is sorely needed.

    • Terry ~ Wendy and I have con­nected on Face­book and are fel­low writer/author gal pals. This arti­cle and your story is extremely impor­tant to me!!! My sister-in-law (42) was just diag­nosed with an “aggres­sive” breast can­cer, words used ini­tially by her doc­tor before all test results were in. As soon as she told me her symp­toms over the phone, I had to hold back the tears. She gets all her results and her treat­ment plan tomor­row — but we all know it’s IBC.
      I will make sure she con­nects to your page. (My niece is just 7 yrs old!)
      Lee
      704–453-4000

      • Wendy Doherty says:

        Lee, I am so sorry to hear of your sister-in-law’s diag­no­sis. We all know those are painful words to hear but with a 7-year old, it stings even more.

  2. Lin says:

    Wendy, thank you for this insight­ful arti­cle about IBC from an IBCer. The major­ity of us are ini­tially mis­di­ag­nosed by doc­tors and even breast sur­geons as hav­ing an infec­tion (mastitis)and put us on antibi­otics for weeks on end. Each case presents dif­fer­ently which com­pli­cates the diag­no­sis with­out a proper biopsy or MRI. Mine actu­ally came on lit­er­ally overnight and was Stage IIIc. I am cur­rently enjoy­ing danc­ing with NED for the past 2 years. I feel it is impor­tant to note that IBC can strike as young as 16 years of age when one isn’t on the radar screen for breast can­cer. The signs of IBC are ANY of the following:

    *Inverted Nip­ple
    *Rash or Red­ness
    *Warmth
    *Thick­ened tex­ture sim­i­lar to an orange peel
    *Swelling

    Again, thank you for get­ting IBC out there. We need edu­ca­tion and research.

    • Wendy Doherty says:

      Lin, thank you com­ment­ing. I am pleased that you shared your story with us as well as the symp­toms to be look­ing for. Edu­ca­tion is power.

  3. Pam InMichigan says:

    Glad you got to talk with Terry. She is our IBC poster woman :) This type of BC really isn’t that rare. I know of 4 oth­ers in South West Michi­gan alone. And I’m sure there are more.

    • Wendy Doherty says:

      Pam, thank you for com­ment­ing on this blog. I keep meet­ing more and more amaz­ing women and you are on of those people.

  4. Claudia says:

    Thanks so much for writ­ing about IBC. There are still too many doc­tors out there who don’t know IBC when they see it. I was diag­nosed about the same time as Terry Arnold and have been a proud advo­cate for IBC since 2007.

    • Wendy Doherty says:

      Clau­dia, thank your com­ments. I see a thread of famil­iar­ity with many sto­ries that IBC was ini­tially and some­times repeat­edly mis­di­ag­nosed. That is def­i­nitely some­thing that needs to be worked on.

  5. Donna Reber says:

    Thank you Wendy for your infor­ma­tive arti­cle. I was diag­nosed with IBC June 2013. I was not mis­di­ag­nosed and did receive timely treat­ment, which is going very well. Chemo and mas­tec­tomy behind me and radi­a­tion in the new year. As I was going through ini­tial test­ing many in the med­ical team (nurses, lab tech, X-ray tech ) did not know of this dis­ease. I myself am a nurse and only vaguely remem­ber it being men­tioned in class, so many years ago. I have put together a edu­ca­tional pam­phlet to edu­cate all in my reach. Your reach is broader. Thank you for get­ting the word out!

    • Wendy Doherty says:

      Donna, thank you for your com­ment. I am sorry to hear of your diag­no­sis. Being diag­nosed accu­rately and in a timely man­ner is cru­cial. Thank you for shar­ing your story. I would love to see a copy of your pamphlet.

  6. Cindy Reddy says:

    I have been blessed to be a part of the IBC com­mu­nity through Terry Arnold as her web­site devel­oper. I had never heard of IBC until a year ago and am amazed at the doc­tors, nurses, and can­cer advo­cates that don’t know about IBC and if they do, won’t talk about it! Thank you for writ­ing about IBC and encour­ag­ing support.

    • Wendy Doherty says:

      Cindy, thank you your com­ment. I believe there are a lot of peo­ple who do not know about IBC. It is com­plex which is all the more rea­son we need to delve into it.

  7. Lee, I have given you a call and I hope you get my mes­sage. I would like to hear how your sis­ter in law is doing.
    Terry

  8. Wendy Doherty says:

    Thank you for the kind words. It was a plea­sure meet­ing Terry Arnold. I learned a lot about Inflam­ma­tory Breast Can­cer and the need to edu­cate others.

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