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Inflammatory Breast Cancer - Easily Misdiagnosed

matches Tara is what Scarlett O’Hara fought for. But is land so important to fight for that you reduce yourself to wearing drapery and marrying a man you don’t love?

Someone once told me, “The secret to being a lady is knowing when to be a woman.” So Scarlett got Tara back, but her daughter died, and Rhett walked out on her (while using profanity back in the day). But “tomorrow is another day.” (Say, “Cheese!”)

I was emailed by a reader, Tara G., to a talk about Inflammatory Breast Cancer (IBC). (How does a Yankee get a name like Tara? It’s like me being named “Beauregard.”) Tara and I actually used to work together, and let me tell you something: She could sell a bridge in Madison County as well as in Brooklyn to Meryl Streep and Clint Eastwood. She’s so influential, and her positive energy makes you feel like the plague never existed. (”Rats? What rats?”)

Tara is also the daughter of a pretty well-known Republican politician. Yet to prove how “purple” Virginia has become, some of the things she has done and the things she believes in make her more liberal than I am. Mmmhmm. Once I swore she was a Democrat, and she passionately responded, “That’s the meanest thing anyone has ever said to me.”

Tara loves people and fights for everyone, in particular those in need. So true to that reputation, she wants me to talk about IBC because many women have never heard about it.

IBC is seen mostly in women who live in medically under-served areas, and it’s one component of Locally Advanced Breast Cancer. Breast cancer is the #1 cancer and #2 cancer killer in American women. IBC is a very aggressive, fast-growing breast tumor that easily metastasizes meaning spreads to other parts of the body. In fact, about 100 percent of women with IBC have lymph node involvement, making IBC a Stage IIIB cancer (not good).

Primary IBC represents only 0.5-2.0 percent of all invasive breast cancers, but for some reason it’s on the rise. African American women are affected by IBC more than white women.
IBC causes inflammation of the breast’s skin and invades the lymphatic system (part of the immune system). So it’s painful, warm, tender, and spreads quickly to enlarge the breast. Peau d’orange is a medical term to describe how it looks because the texture/appearance is like the skin of an orange. But the color is pink to red to purple. Sometimes a breast infection such as mastitis or an abscess can mimic the look of IBC. That’s the problem-it is thought to be an infection but it is cancer.

I’ve seen women with peau d’orange, and it just makes your heart sink because usually they have waited a long time before seeking help– due to denial or a lack of resources (in my experience, but not true for everybody).

IBC is diagnosed by appearance, mammography, and a core needle biopsy. CT scans of the chest, abdomen, and pelvis are done to stage the extent of the breast cancer. Bone scans are done to see if bones have been invaded by the cancer.

Treatment involves a hodgepodge of surgery, chemotherapy, radiation therapy, and adjuvant therapy. But only about half of women diagnosed with IBC live as much as 2.5 years.

We need a Tara, the ultimate believer and ultimate optimist, to get all women motivated to do self-examinations of the breasts, yearly check-ups, and routine mammograms. Also we need a
Tara to stir things up enough to find a cure to prevent 1 in 9 women from getting breast cancer. Anything less would be tarable.

Author’s Addendum: I am sorry about any confusion or misunderstanding caused by my article and TV segment on IBC (inflammatory breast cancer). The point of the article is to inform people about this horrible and aggressive type of breast cancer.

My articles are written to help readers learn in a non-threatening atmosphere about medical topics. Too often readers don’t want to read about medical topics because they are too dry and scientific. Any humor I use is never to insult or belittle someone with the illness.

I practice medicine full time and I am known for my compassion because I am 100 percent there for the patient. I am also a huge feminist and try to empower women as much as I can (my mother, also a physician, is my role model).

I did have a link to an organization with information on IBC, but after being notified of some personally threatening comments made on that site (which I have printed for documentation), I have had to pull this site from my webpage.

I would like to clarify & emphasize certain issues of IBC

No Lump in Breast: The point of my TV and newspaper articles was to mention this type of breast cancer presenting differently– with inflammation. Inflammation is the hallmark of IBC. I do not say there is a lump (though there can be one) in my article or TV segment. The whole point of IBC is the skin change to warn of IBC.

Medically Underserved Areas: I’m sorry I gave the impression it is seen only there. I do not mention it is only in medically underserved areas or in women who are in denial. But in my medical literature that I read using UVA library as well as in UpToDate the statistic show this. Also my own experience has been similar.

Unfortunately there are women (and men) who had inflammation but were not diagnosed with IBC because mammography was negative. That is why biopsy is so important.

Peer Reviewed Articles used to research IBC in this article:
o Cristofanilli M. Buzdar AU. Hortobagyi GN. Update on the management of inflammatory breast cancer. [Review] [61 refs] [Journal Article. Review] Oncologist. 8(2):141-8, 2003.
o Buchholz TA. Strom EA. Perkins GH. McNeese MD. Controversies regarding the use of radiation after mastectomy in breast cancer. [Review] [24 refs] [Journal Article. Research Support, Non-U.S. Gov’t. Research Support, U.S. Gov’t, Non-P.H.S.. Research Support, U.S. Gov’t, P.H.S.. Review] Oncologist. 7(6):539-46, 2002.
o Wolff AC. Davidson NE. Preoperative therapy in breast cancer: lessons from the treatment of locally advanced disease. [Review] [46 refs] [Journal Article. Review] Oncologist. 7(3):239-45, 2002.
o Winzer KJ. [Evaluation of neoadjuvant therapy in breast carcinoma]. [Review] [33 refs] [German] [English Abstract. Journal Article. Review] Chirurg. 71(12):1458-65, 2000 Dec.
For full-text availability, click on “Full Text” or “Find@UVa.”
UI: 11195064
o UpToDate 2007

Locally Advanced Breast Cancer: Several presentations are listed according to the literature. Please see references above.

Mammograms: These procedures are 80 percent sensitive, so I mentioned them because they are still done– and if negative, the physician proceeds to biopsy. BUT a negative mammogram does not mean there is no cancer. IBC needs a biopsy to diagnose

“Hodgepodge”– I’m sorry to have offended anyone by using this term. Yes, there is extensive protocol for treatment– so much, in fact, that it is impossible for me to mention it all in my restricted 625-word articles.

Terms: My article and TV segment don’t go into the details– such as where the inflammation comes from. Yes, I know it’s not the skin but lymphatics.

My goal is to have women know about the disease, and in fact I have received emails from some women who are now “in the know” and will do more research to learn about the disease– such as on your web page.

Talking for two minutes on TV or writing 625 words cannot fully educate anyone on any topic– but it is an introduction. I do hope millions of people will learn about IBC and respond to it quickly if they have the symptoms and signs.

Again, I apologize for offending anyone. I really do not intend to offend anyone but to help people learn about serious issues. I have been a reporter on TV since 1999 and have been writing since 2004, and I think I have done good community service by bringing attention to important issues. I have not seen anything on IBC in the news, and so I am hoping my writing and TV segment will help spread the word.

For women who have or have had IBC, my best wishes are with you

(C) John S Hong, MD, MS September 12, 2007

1 Comment

  1. Dr. Hong,
    I am sorry that your valiant attemps to bring IBC awareness to your readers and audience was met with criticism. My feeling is it was someone who, still feeling the pain of someone close who suffered from IBC, lashed out in a way they couldn’t beforehand. Just know that if one woman is able to get early diagnosis from seeing your segment, your effort will have been validated in the most life affirming way.
    Thank you so much from a cancer survivor.
    Jonnie B.

    Comment by Jonnie Brown — September 13, 2007 @ 12:48 pm

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