IBC Symptoms, Diagnosis, and How to Find an IBC Doctor

Symptoms

According to the National Cancer Institute (2016), “Symptoms of inflammatory breast cancer include swelling (edema) and redness (erythema) that affect a third or more of the breast. The skin of the breast may also appear pink, reddish purple, or bruised. In addition, the skin may have ridges or appear pitted, like the skin of an orange (called peau d’orange). These symptoms are caused by the buildup of fluid (lymph) in the skin of the breast. This fluid buildup occurs because cancer cells have blocked lymph vessels in the skin, preventing the normal flow of lymph through the tissue. Sometimes the breast may contain a solid tumor that can be felt during a physical exam, but more often a tumor cannot be felt.

Other symptoms of inflammatory breast cancer include a rapid increase in breast size; sensations of heaviness, burning, or tenderness in the breast; or a nipple that is inverted (facing inward). Swollen lymph nodes may also be present under the arm, near the collarbone, or both.

It is important to note that these symptoms may also be signs of other diseases or conditions, such as an infection, injury, or another type of breast cancer that is locally advanced. For this reason, women with inflammatory breast cancer often have a delayed diagnosis of their disease.”*

*Inflammatory Breast Cancer was originally published by the National Cancer Institute. Retrieved from Web 19 January 2019.  https://www.cancer.gov/types/breast/ibc-fact-sheet#q2

The American Cancer Society (2016) states, “Inflammatory breast cancer (IBC) causes a number of signs and symptoms, most of which develop quickly (within 3-6 months), including:

  • Thickening (edema/swelling) of the skin of the breast
  • Redness involving more than one-third of the breast
  • Pitting or thickening of the skin of the breast so that it may look and feel like an orange peel
  • A retracted or inverted nipple
  • One breast looking larger than the other because of swelling
  • One breast feeling warmer and heavier than the other
  • A breast that may also be tender, painful or itchy

Tenderness, redness, warmth, and itching are also common symptoms of a breast infection or inflammation, such as mastitis if you’re pregnant or breastfeeding. Because these problems are much more common than IBC, your doctor might at first suspect infection as a cause and treat you with antibiotics.

This may be a good first step, but if your symptoms don’t get better in 7 to 10 days, more tests need to be done to look for cancer. The possibility of IBC should be considered more strongly if you have these symptoms and are not pregnant or breastfeeding, or have been through menopause.

IBC grows and spreads quickly, so the cancer may have already spread to nearby lymph nodes by the time symptoms are noticed. This spread can cause swollen lymph nodes under your arm or above your collar bone. If the diagnosis is delayed, the cancer  can spread to lymph nodes in your chest or to distant sites.

If you have any of these symptoms, it does not mean that you have IBC, but you should see a doctor right away. If treatment with antibiotics is started, you’ll need to let your doctor know if it doesn’t help, especially if the symptoms get worse or the affected area gets larger. Ask to see a specialist (like a breast surgeon) or you might want to get a second opinion if you’re concerned.”**

**Inflammatory Breast Cancer, American Cancer Society. Retrieved from Web 19 January 2019.

View photos of IBC symptoms.

Diagnosis

According to the National Cancer Institute (2016), “Inflammatory breast cancer can be difficult to diagnose. Often, there is no lump that can be felt during a physical exam or seen in a screening mammogram. In addition, most women diagnosed with inflammatory breast cancer have dense breast tissue, which makes cancer detection in a screening mammogram more difficult. Also, because inflammatory breast cancer is so aggressive, it can arise between scheduled screening mammograms and progress quickly. The symptoms of inflammatory breast cancer may be mistaken for those of mastitis, which is an infection of the breast, or another form of locally advanced breast cancer.

To help prevent delays in diagnosis and in choosing the best course of treatment, an international panel of experts published guidelines on how doctors can diagnose and stage inflammatory breast cancer correctly. Their recommendations are summarized below.

Minimum criteria for a diagnosis of inflammatory breast cancer include the following:

  • A rapid onset of erythema (redness), edema (swelling), and a peau d’orange appearance (ridged or pitted skin) and/or abnormal breast warmth, with or without a lump that can be felt.
  • The above-mentioned symptoms have been present for less than 6 months.
  • The erythema covers at least a third of the breast.
  • Initial biopsy samples from the affected breast show invasive carcinoma.

Further examination of tissue from the affected breast should include testing to see if the cancer cells have hormone receptors (estrogen and progesterone receptors) or if they have greater than normal amounts of the HER2 gene and/or the HER2 protein (HER2-positive breast cancer).

Imaging and staging tests include the following:

Proper diagnosis and staging of inflammatory breast cancer helps doctors develop the best treatment plan and estimate the likely outcome of the disease. Patients diagnosed with inflammatory breast cancer may want to consult a doctor who specializes in this disease.”*** 

***Citation: Inflammatory Breast Cancer was originally published by the National Cancer Institute.” Retrieved from Web 19 January 2019.
https://www.cancer.gov/types/breast/ibc-fact-sheet#q3

How do I find a doctor to treat IBC?

The National Comprehensive Cancer Network has a list of member hospitals. Any of those institutions will have expertise with IBC. 

The National Cancer Institute has more than 60 designated Cancer Centers. Any of those locations will have expertise with IBC.

You might also call a university-based research hospital or medical center. Ask to speak to a breast health nurse. Explain that you are looking for a breast specialist or oncologist with experience in treating inflammatory breast cancer.

There are many doctors in the United States who are experienced treating IBC. Treatment will take about a year and we suggest you find an experienced oncologist in an area within driving distance of your home. Some patients consult with an IBC specialist at a major medical center, but receive treatment close to home. It is important that all members of your medical team (oncologist, radiation oncologist, breast surgeon, IBC specialist) share information.