Reesa didn't believe the myths and asked questions.  A pro active. warrior!

Reesa didn’t believe the myths and asked questions. A pro active. warrior!

World Cancer Day… A day set aside to dispel damaging myths and misconceptions about cancer…so let’s start with common breast cancer myths as they might relate to Inflammatory Breast Cancer, IBC, the most fatal of all the breast cancers.  This orphaned disease, first written about almost 200 years ago, needs to be discussed because the signs and symptoms are so very different that what we think of as breast cancer. Without the ability to be diagnosed earlier than a stage three, time is not on our side.  We need to know about IBC.  For decades, women have been lulled into a false sense of security when it comes to breast cancer. That is, if you perform monthly self-checks and have an annual mammogram screening after age 40, you’ll be able to catch breast cancer in its early stages. These are important guidelines that every woman should heed, but Inflammatory Breast Cancer doesn’t play by conventional rules. What about “the breast cancer without a lump”?

Myths as they relate to Inflammatory Breast Cancer.

1. You only get breast cancer if you have a family history. I don’t have a family history, so I don’t need to worry about it.

Eighty to eighty-five percent of women with breast cancer have no family history of the disease. Even if no one in your family has ever been diagnosed, that’s no excuse to not be well educated about good breast health.  With IBC, due to lack of research, we are still gathering data for such statistics.

2. I’m too young to worry about breast cancer.

Breast cancer can affect women of any age. Inflammatory Breast Cancer statistics tend to report an average diagnosis age of 45-49, but this “orphaned” disease with so little time and attention devoted to research, we really don’t know what the future might reveal to us.  The world’s first clinic devoted to IBC care and research was established at MD Anderson in Houston Texas in 2006 and was named after a young woman, Morgan Welch, who was only 24 when diagnosed. Women are being diagnosed with IBC in their late 20’s and early 30’s.  We are never too young for cancer, even breast cancer.

3. If I’m diagnosed with inflammatory breast cancer, it means I’m going to die.

This just from a personal point of view.  When I was first diagnosed with Triple Negative Inflammatory Breast Cancer, I could see why the doctor was only quoting me a few months to live.  I am here, well and alive, five years later.  Still NED, which means no evidence of disease.  I will be honest, IBC is brutal, and I am a rarity, but with education, and research funding, I hope we can see improvements and there will be more women like me.  Hope always, Terry

4. I’ve made it five years as a survivor, so my breast cancer won’t return.

Inflammatory Breast Cancer has a very high recurrence rate, and the five year rule really does not apply to us in the same way.  Good quality care in the proper order is very important to maximize best results.  So what is proper order of treatment for IBC?  You and your care team need to discuss this, but IBC care is different, because the disease is different.   For IBC, you start with chemotherapy, then surgery, which is a mastectomy, a radical one, (not skin sparing). If pathology comes back clear, you move to radiation, (if pathology is not clear, might possibly have more chemotherapy) then 6 weeks of daily radiation, sometimes twice a day depending on the case. Then if possible, reconstruction after a waiting period for about one million reasons…hopefully not one with metal implants that will limit future testing.

5. I don’t need chemotherapy and we can fight IBC with a lumpectomy.

Chemotherapy is very important in IBC due to the fact that most IBC cases do not have a lump/lumps.  The disease is all web like and scattered, like cotton candy, all throughout the breast, so the likelihood of “getting it all” with a lumpectomy or even a mastectomy without chemotherapy first is most difficult and can be very dangerous to long term recovery.

6. I don’t have a breast lump, so I can’t have cancer.

IBC is web like and scattered, like cotton candy with uneven density.   Have you noticed the pink “puff” the IBC Network uses as a logo?  We use that logo because that is what IBC looks like on a PET scan.

7.  I have breastfed my children, so my breasts are resistant to cancer.

Breast feeding clearly has benefits to the mother and the child, but nursing is not a “get out of jail free” card for breast cancer.  As a matter of note, many women are diagnosed with IBC while pregnant and/or nursing.  Good breast health knowledge is important at all stages in a women’s life.

8. I eat a healthy diet, which will make me immune to breast cancer.

There have been studies to show a healthy diet and a healthy body weight is important, but still with IBC, we have too many unanswered questions to stop there.

9. My mammogram was normal, so I don’t have to worry about breast cancer.

Did you notice the photograph with this story?  Our friend Reesa shared this picture with us.  She was concerned her breast seemed “different” than before.  She had a mammogram to get a check up and a few weeks later she received a letter from her local mammogram center in her hometown in West Texas. The letter stated she was “all clear and we will see you next year.”  In this photo, Reesa is standing in front of MD Anderson’s Morgan Welch Clinic with that letter.  She feels so passionate about women’s health, she wanted to you see her, bald, fighting cancer and understanding that we need more education regarding IBC.  Thank goodness Reesa did not turn off that little voice of doubt in her mind.  She insisted on more testing and as it turns out, she had Inflammatory Breast Cancer.

Remember how IBC is web like? Although mammograms are an important tool in diagnosing breast cancer, IBC does not read well on a mammogram.

10. My breast can’t have cancer, the changes are on the outside of my breast.  Cancer does not show outside the breast.

IBC can have a very physical presentation such as these:

  • Breast swelling, in which one breast is suddenly larger than the other,
  • Breast that feels warm to touch and may look infected,
  • A dimpling of the breast skin that looks like an orange peel (peau d’orange),
  • Thickening of the skin, Flattened or discolored nipple, Swelling in underarm or only on one side of neck

11. Breast Cancer is painless.  My breast is painful, so it must not be cancer since cancer is supposed to be painless.

It is not uncommon for IBC to have an itching or shooting pain, or have one breast hot and swollen, like you would expect to see from an infection.

12. Radiation therapy is optional post my care. 

Due to the web like nature of IBC, radiation therapy is a very important step in good quality care.

13. Cancer can be caught early and is always curable.

IBC can not be detected any earlier than a stage three and can come up very quickly. If a woman is presenting with signs of IBC it is important to be seen by a breast specialist asap.

14.  I can’t get cancer, because I am pregnant.

I wish this was true, but sadly it is not.  However, did you know that for over 20 years MD Anderson has been giving chemotherapy to women while they are pregnant, and that they can protect the child?  Yes, and many other hospitals are doing the same.

15.  I have had breast cancer in the past, so I can’t get Inflammatory Breast Cancer later.

Again, wish it was true, but IBC and general breast cancer are not the same disease and you can have both at the same time or have one or the other again later.  Good breast health is forever important in women’s lives.

16.  Not a myth, just a fact.  Did you know that 25% of women with IBC are also triple negative breast cancer too?  What is that you say?  Well, that is more education to come.

So to recap symptoms of IBC-

Inflammatory breast cancer (IBC) is a rare form of breast cancer that often strikes younger women. IBC is difficult to pick up on a mammogram, it is very important to be educated on this disease. Symptoms may include:

  • Breast swelling, which one breast is suddenly larger than the other
  • Breast that feels warm to touch and may look infected
  • Itching or shooting pain
  • A dimpling of the breast skin that looks like an orange peel (peau d’orange)
  • Thickening of the skin
  • Flattened or discolored nipple
  • Swelling in underarm or only on one side of neck
  • Might feel lump, however lumps are not common in IBC.

Hope Always,


This post ran in Breast Investigators

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