What’s So Different About Inflammatory Breast Cancer (IBC)?

We’re glad to welcome back Ginny Mason, BSN, RN, Executive Director of the Inflammatory Breast Cancer Research Foundation (ibcRF), for an informative guest post, the second in her 3-part series, about IBC diagnosis and treatment.

Inflammatory Breast Cancer Research FoundationA few months ago I shared a bit of history about the Inflammatory Breast Cancer Research Foundation here. It was a great opportunity to let folks know how our organization got started and what kinds of services we provide. While our focus is research we also direct resources to provide education and support through our website, e-mail discussion list and e-newsletter.

In this installment I want to talk about the diagnostic, treatment, and research challenges associated with inflammatory breast cancer.

For those who don’t know, inflammatory breast cancer (IBC) is a clinical diagnosis based on visible symptoms. Currently there is no specific diagnostic test for IBC. Often the pathology report doesn’t mention IBC. Typically the breast surgeon makes the diagnosis based on edema (swelling) of the breast, peau d’orange (breast skin looks pitted like orange peel), pain, itching, redness or rash, and perhaps swelling in the armpit. Each patient may have a combination or variety of symptoms. We have some photo examples on the ibcRF website. The redness may look more like a bug bite or bruise, there may be nipple changes and other changes. It’s important to note that any breast change that doesn’t resolve in two weeks should be evaluated by your healthcare provider.

IBC is very aggressive and is already in the lymphatic system when diagnosed, making it stage IIIB, IIIC, or IV. Unfortunately, mammograms seldom pick up the disease due to the lack of a palpable lump, although skin thickening is sometimes evident and should be a warning sign to the radiologist to explore further. Treatment begins with rigorous chemotherapy and usually includes modified radical mastectomy with lymph node removal and post-surgical radiation. Of course treatment is tailored to the individual patient’s needs and may deviate from this standard depending on biomarker status and stage of disease.

In 2008, the National Comprehensive Cancer Network developed a treatment guideline for IBC (thanks to some strong encouragement by our organization!). However, it is challenging to determine a standard of care when there is limited clinical trial data. Many clinical trials exclude IBC patients or fail to separate out the trial results for the IBC patients involved. To complicate matters even more, IBC patients have a higher incidence of triple negative disease (no over expression of estrogen, progesterone, or Her2/neu) but also have a higher incidence of Her2/neu over-expression than the general breast cancer population. We’re a confusing mix and that adds to the diagnostic, treatment, and research challenge.

Treatment resistant disease, persistent skin metastasis, and delayed diagnosis continue to cut short far too many lives. Overall survival statistics have improved for those facing IBC, but not enough.

As an organization we’ve focused on facilitating research that will help improve understanding of IBC so that improved treatments can be developed. In the past few years we’ve been able to fund five researchers, totaling nearly $300,000, to help answer important questions and get us closer to controlling this disease. Progress is being made but there is much more to learn and do.

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14 Responses to What’s So Different About Inflammatory Breast Cancer (IBC)?

  1. Thea Archer says:

    Thank you, Thank you, I received my Nipples in the mail, last week. It is beautiful, matches my own so well! So wonderful of your Company to do this, such a small thing, but so wonderful…..helping to make Survisors hold again!
    Thank you again,
    Your Breast Friend,
    Thea Archer

  2. Debora Carlson says:

    I was diagnosed with stage 4 IBC in December of 1991. I had a difficult time getting anyone to listen to me and believe that something was going on. I finally got someone to listen but by then I had skin and lymph node involvement. I had 5 months of aggressive Chemo, a modified radical mastectomy, underwent an autologous bone marrow transplant and radiation followed by 7 years of Tamoxifin. IT WORKED!!!!! 20 years Cancer Free!!!!!!! There is always HOPE!!!!!
    Remeber to be your own advocate!!!!
    A Bosom Buddy,
    Deb Carlson

  3. Ginny Mason says:

    Deb…thanks so much for sharing your story and congratulations on joining me as a long-term survivor of IBC! Stories like ours help those who are newly diagnosed to keep hope and believe they can get through the rigorous treatment. Indeed, there is always hope and you certainly do need to be your own advocate. Contact the Inflammatory Breast Cancer Research Foundation, http://www.ibcresearch.org, if you’d like to share your story on our website.

    Keep on thriving and sharing your story!
    Ginny (marking 18 yr from diagnosis in March)

  4. Tricia says:

    My Left breast has been like a redbluish bruised color and what started was a really bad cooking sore that Left a hole, I thought it was infected, well it has been over a year. I had no insurance so did not go to the dr. But now I have a knot in my Left armpit and raising my arm feels like something is tearing apart from my boob and also have a indention in créase of my pit. Also have a knot come up in my Left wrist. I finally have insurance so I have a dr appt tomorrow. Really scared to go :(

  5. Ginny Mason says:

    Tricia….I’m so sorry to learn of all you’ve been dealing with. It is especially frightening to have breast changes and feel unable to have things checked out due to insurance issues. I’m glad you now have insurance and are able to see a doctor about his issue because clearly something is going on. Whether or not this is inflammatory breast cancer (IBC) is for the medical team to determine. Perhaps you have a more systemic infection from the original open area and it is causing lymph node enlargement.

    Please don’t hesitate to get back in touch if indeed this is IBC. Our organization is here to help you through the journey with information and support.

    Best wishes to you………..ginny

  6. Melinda says:

    I have had a swollen breast for the least 6 months. I do not have health insurance to get it evaluated. I’ve been to the health department but they told me I would have to find a doctor. I don’t know where to turn.

    • joanne hathaway says:

      Most towns or nearby cities will have clinics – Federally Qualified Health Centers – that will care for you and charge you based on a sliding scale – de- pending on what you can pay. You might need to bring pay stubs with you to show your income level, but they should be able to get you the care you need. God bless you! Hang in there – people will help you along your journey!

  7. Ginny Mason says:

    Melinda…..I would echo the advice Joanne provided. I don’t know where you live or your age but you might qualify for the Breast & Cervical Cancer Early Detection Program offered by the CDC. This is a Federal program for low income U.S. residents. Go to http://www.cdc.gov/cancer for more information. You might also try your area American Cancer Society for guidance on local resources. Call 1-800-ACS-2345 or go to http://www.cancer.org

    I hope you are able to locate resources so you can see a physician for evaluation and get to the bottom of things.

  8. Kathleen Layden says:

    I am 2.5 years post breast cancer, surgery, radiation and have been on Tamoxifen the entire time. Yesterday morning I noticed that my left breast (w/prior cancer diag) was reddish purple on the bottom side below the nipple and then a “hickey-like red bruise” on the outer left. Saw my pcp and he directed me to my oncologist. Got in right away and he thinks it’s a “bruise”. Told me if I wanted to fill a prescription for antibiotics I could, but he thought it would just go away. I am so scared he is missing a diagnosis. I must say…. my breast looks almost exactly like some of the pics on the website. He wants me back in a week, should I be more concerned until then???

    • Ginny Mason says:

      Kathleen….I can certainly understand your concern, especially since you’ve been ‘down this road before’. I want to commend you for paying attention to your body and noticing changes, that’s so important. Have you had any other symptoms along with the ‘bruised looking’ skin?

      Since your oncologist felt this was an infection did you fill the antibiotic Rx? Have you contacted your surgeon? Sometimes breast surgeons are more familiar with diagnosing breast problems so it might be useful to contact him/her.

      If the symptoms resolve on their own, or with an antibiotic, it’s probably nothing to worry about. However, if the symptoms continue you may need to push for a breast MRI, ultrasound or perhaps skin punch biopsies (3) of the areas where you see the skin changes, to rule out inflammatory breast cancer (IBC). There is an excellent guide for ruling out IBC put out by the National Comprehensive Cancer Network (nccn.org) It can be found on their website under breast cancer screening guidelines/skin changes. One must register to read the guidelines, but it’s free.

      I hope this information is helpful, however please realize my comments aren’t medical advice….just sharing from 13 yrs. of working with IBC.

      Take good care…….

  9. Thank you for all this information, I have swelling in my left breast a feeling of heaviness, burning and some times itching I have not notice skin dimpling or redness but I do have lumps on the armpit side. This has been going on for several years and have had 2 Mamagrams the last one saying it is a swelled limp node the left breast is noticeably larger than the right and am having more and more problems with feeling well as we’ll as finding a large painful lump in my growing. Can some one give me ideas. Thank you Sheryl Koontz

  10. De says:

    I’ve been reading the site and I’m concerned. I have a hickey looking patch on the inside towards the bottom of my left breast. I also have the same patch on my groin area on the same side (left) Could this be IBC?

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