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