What Is Inflammatory Breast Cancer?

inflammatory-breast-cancerA few weeks back, one of my lovely readers asked if I would write about inflammatory breast cancer because her sister had been diagnosed with it and wanted to spread a little awareness about this particular kind of breast cancer diagnosis.  Her wish is my command.  So, in today’s Breast Cancer: 101 lesson we’re talking about what inflammatory breast cancer is and why it’s probably the worst type of breast cancer to be diagnosed with.

When I was diagnosed, the doctor – reviewing my pathology report – said “thankfully, you have the good kind.”  What did she mean by that?  Well, first, I’m pretty sure it was said to calm the scared shitless patient sitting in front of her but also because doctors know how to treat the particular breast cancer I was diagnosed with.  Inflammatory breast cancer is rare and very aggressive and the five-year survival rate hovers around 34% compared to 87% with other forms of breast cancer.

Inflammatory breast cancer is the most difficult type of breast cancer to diagnose because there is no lump.  Most breast cancers form a tumor that can be felt or seen on a mammogram.  Though IBC will have a primary tumor site, the cancerous cells usually grow in sheets or nests.  Most often, when patients are diagnosed with IBC, the cancer is already a stage 3 – which means that it has spread to the lymph nodes or other organs.

How is Inflammatory Breast Cancer diagnosed?

Inflammatory Breast Cancer usually presents itself with the following symptoms:
edited: not all symptoms will occur at the same time.

  • breast warmth
  • redness of more than 1/3 of the breast
  • thickening (edema/swelling) on the skin of the breast
  • ridging of the breast skin (similar to an orange peel)
  • the nipple is inverted occasionally

Swelling of the breast is commonly associated with a breast infection – especially in women breastfeeding.  But since IBC can spread so rapidly, it’s always best to contact a doctor immediately.

Treatment for IBC is the usual trifecta: chemotherapy, radiation, and surgery.  Most often, a radical mastectomy is the only surgical option because of the nature of the cancer.

Inflammatory Breast Cancer is frequently hormone receptor negative, which means that hormone therapies, such as tamoxifen, that interfere with the growth of cancer cells fueled by estrogen may not be effective against these tumors.  It is possible the IBC can also be identified as a HER-2 positive cancer.

To learn more about Inflammatory Breast Cancer definitely visit Inflammatory Breast Cancer Research Foundation and the Mayo Clinic.  I also encourage you to visit the Susan Niebur’s website Toddler Planet where she wrote extensively about her experience with IBC.  Susan passed away from the disease in early 2012.

That wraps today’s Breast Cancer: 101 lesson.  Next time, we’ll talk cancer treatment and some of the less known side affects associated with them.  In the meantime, do you have a question?  You can ask me anything and if I can’t answer it, I’ll be certain to direct you to someone who can!  Reach out in the comment section or you can always find me on Facebook too.

This information should not be used to substitute any professional medical advice.  If you have questions or concerns about breast cancer, I urge you to visit your physician.  Works cited: Inflammatory Breast Cancer Research Foundation and American Cancer Society

 

Comments

  1. Thank you for posting this. I learned about IBC about ten years ago when my friend’s mom was diagnosed. By the time they figured it out it was too late and she died within months. I have been terrified of this damn disease ever since!

    • Hey Alexa! Thanks for stopping in. Here’s the thing, we shouldn’t be terrified of breast cancer. Survival rates are excellent when caught early. So it’s in your hands to stay vigilant about self exams and mammography and taking care of yourself.

  2. Some important things to remember about IBC:

    1. Everyone presents differently with IBC. You DO NOT have to have ALL the signs and symptoms of IBC in order to have it. I only had one symptom: a slight blotchiness (rash) on one breast. I had no other signs.

    2. If you do not have a fever, you don’t have an infection. If you don’t have an infection, you don’t have mastitis and don’t need antibiotics.

    3. When in doubt, rule it out. Since IBC is so aggressive and can be deadly if not diagnosed promptly, you should get it ruled out with a biopsy. If possible, see an IBC specialist.

    4. There are many of us IBCers out here who have been around for years and are happy to try and answer any questions you may have.

    5. There is a lot of research going on and there is hope.

    • Thank you so much for adding your personal experience, Claudia. I’m only able to share what I learn from reputable medical websites since I personally didn’t have IBC. And you’re right, there is hope! Thanks for stopping in!

      • Fran Ricco says:

        I was diagnosed with IBC in March of 2006. The cancer had spread to the lymph nodes under my arm. I developed lymphedema in my left arm. The good news is that I have been cancer free since 2006. I had chemo for three months, then total mastectomy of my left breast, then three more months of chemo and at last seven weeks of radiation. I never was depressed about my diagnosis. I am a very positive person and I put everything in God’s hand. My oncologist said I was his miracle patient. He never expected me to live beyond 18 months. So don’t ever despair.

        Claudia, I’m so glad that you are doing fine.

  3. Wendy, I’ve learned a lot since my diagnosis in 2007 and am always glad to share. Thanks for posting about IBC. We need all the exposure we can get.

    P.S. I’m very glad you don’t have IBC.

  4. Thank you for writing about iBC. When my sister was diagnosed almost 5 years ago it was very hard to find information about what it was. Now, thanks to social media and women’s personal voices, there is much more information, support and resources available. it is so important for women to know about breast changes other than the “lump” we are taught to look for. Each woman (and man) needs to know what their normal is and stay on top of any changes that they see. Sadly, my sister passed away 2 weeks ago of IBC. But our voices are strong, research is moving along, and there is always reason to look for hope.

    • Oh goodness, Angie. I am so sorry to hear about your sister’s passing. I appreciate you coming by and sharing your experience and encouraging others to know “their normal.” This is so true! Hugs friend.

    • Angie, I would like to add my condolences. I lost my only daughter to IBC which is why I push forward with education of the public and the medical community of this devastating disease. This weekend in Philly, the 3rd Global IBC meeting is taking place, headed by Dr. Massimo Cristofanilli (Dr. C) and Dr. Ken Van Golen, pioneers in the field of IBC. Dr Cristofanilli, myself and Jenee Bobbora started our foundation for education of IBC and sometimes I feel we have only just begun. Our monthly radio show IBC Facts & Fallacies in December will have Dr. C. as our guest to recap the Global IBC work. Claudia 413 who has written here is our VP and is an amazing advocate. Thank you Wendy for sharing education, it is so badly needed.

  5. Another important thing about IBC is that it usually doesn’t show up on a routine mammogram because the tumors are usually in sheets or nests and not a solid lump. If your doctor insists on a mammo first, ask for a “diagnostic mammo” rather than a “routine mammo”. The diagnostic mammo can specifically look for the sheeting or nesting of the tumors and not a specific lump. If the technician doesn’t know he/she is supposed to look for sheeting or nesting of tumors, they may not realize what they’re looking at when they see no solid tumor.

    Always check for any change in your breasts and report them to your doctor.

  6. When I was diagnosed in March with breast cancer, my doctor also said, “If you have to have breast cancer, you have the good kind.” I think it did calm my fears and helped me realize what a lucky, lucky girl I am. Every month, when I go to the infusion center to get my Zoladex injection, I say a prayer of thanks for that, as well as a prayer for those sitting in the treatment chairs.

  7. Priscilla says:

    I was diagnosis at age forty.

  8. I lost a good friend, with very, very small children to IBC. It’s terrifying, and I think not enough people know to even be on the look out for it. Thanks for posting this, Wendy!

  9. Is IBC is genetic. My sister has it and I am worried I might get it.

  10. My Aunt was diagnosed with Stage 3 IBC back in 1999. She’s alive, well and still a giant pain in my Mom’s butt to this very day.

  11. I think I may have IBC. I have been to my gyn…and he has referred me on to a surgeon. I see her tomorrow. I am scared to death. I have swollen lymph nodes in my underarm, a very sore breast, itchy breast, crust in my nipple, and a red blotchy spot about the the size of a dime on my breast.
    I just went through a series of ultrasound, mammograms and a core-needle biopsy 3 months ago for some calcifications that showed up on my normal mammogram. It was benign.
    Now this has shown up. Did I say that I was scared to death? My sister is a breast cancer survivor. My aunt (mom’s sister) and my great aunt (grandmother’s sister) both died from breast cancer.
    I have lupus…so it is nothing unusual for me to have fever.
    i probably should stay off the internet…instead of educating myself, I am getting paranoid.

  12. Now I am awaiting biopsy results…hope to hear something by Wednesday.

  13. I have been lost for the past two weeks after my amazing mom (in-law) passed away on 12/10/2013 to this nasty cancer. She gave it her best! I have been online reading so much. It was nice to read this. Please spread the word…As far as self-exams and physician exams, ladies, be vigilant and to the men that love those ladies encourage them to be vigilant!

    Prayers with you all!

  14. My youngest sister was diagnosed with staged 4 IBC about 4 wreaks ago and I am very confused and scared don’t know what to do to comfort her .

  15. Kristen's Crusade on Facebook says:

    I was 29 when I was diagnosed with stage IIIB inflammatory breast cancer in my right breast and invasive ductal carcinoma in my left breast October 2012. That was followed by thyroid cancer in November 2013. After 4 months of chemo, bilateral radical mastectomy with 34 lymph nodes removed in my right arm and NO reconstruction followed by 54 rounds of radiation, a year of herceptin, 10 years of arimidex, a total hysterectomy December 9 thus last year. I am happy to report that I am no evidence of disease. I am 31 years old, single mother of two (12 & 5) and a full time student. Trying to put my life back together. I have my good days, my bad days, my really really terribly bad days and the most amazing days. No family history and I was misdiagnosed for four months. I didn’t have all of the symptoms and my drs kept telling me I was too young for cancer especially with no family history. Thankfully, one dr knew about IBC and saved my life, so my kids have at least one parent in their lives. I left my name of my page on Facebook if anyone ever needs to talk. You are not alone in this battle! Rare doesn’t mean never!

Trackbacks

  1. […] I consider myself to be a research nerd. When I was diagnosed with breast cancer back in 2008, I sought out every book and website about the disease; facts about breast cancer, symptoms about breast cancer, breakthrough news, articles about the best foods for fighting cancer, and survivor stories from celebrities and women like myself who have faced the same life-changing diagnosis. One of my most rewarding takeaways from blogging about breast cancer is being able to couple my personal experience with my love of research and then being able to share that with readers looking for the same answers I once was looking for. This is truly the catalyst behind my popular Breast Cancer: 101 series. […]

  2. […] and now I’m just waiting for results. Surely at 30 years old I’m too young to have IBC; surely 2016 has already been filled to capacity with its fair share of shit; surely. All I can do […]

  3. […] some cysts and recommended that I followup with my family doctor, thankfully there were no signs of inflammatory breast cancer (which was the initial worry because of consistent […]

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