Topic: Worried About Inflammatory Breast Cancer? Start here

Forum: Not Diagnosed But Worried — For those who are experiencing symptoms or received concerning test results, but haven't been diagnosed with breast cancer.

Posted on: Mar 19, 2021 01:54PM - edited Jun 17, 2022 09:46AM by moderators

Posted on: Mar 19, 2021 01:54PM - edited Jun 17, 2022 09:46AM by moderators

moderators wrote:

Hi! We know you're here and worrying about a symptom or change to your breast or breasts. You may have found yourself Googling your symptoms, which led you to finding information on inflammatory breast cancer (IBC). Before coming to any conclusion, we hope you can take a deep breath, and read below from the main site's section on Inflammatory Breast Cancer:

Inflammatory breast cancer (IBC) is a rare form of breast cancer that usually starts with the reddening and swelling of the breast instead of a distinct lump. IBC tends to grow and spread quickly, with symptoms worsening within days or even hours.

The average age at diagnosis for inflammatory breast cancer in the United States is 57 for white women and 52 for Black women. These ages are about 5 years younger than the average ages at diagnosis for other forms of breast cancer. According to the American Cancer Society, inflammatory breast cancer is more common in Black women. A 2008 study found that being overweight makes a person more likely to develop IBC. Like other forms of breast cancer, IBC can also affect men.

Symptoms of Inflammatory Breast Cancer
Although most breast cancers begin as lumps or tumors, inflammatory breast cancer usually starts with a feeling of thickness or heaviness in the breast. You also may develop red, inflamed skin on the breast. IBC tends to grow in the form of layers or "sheets" of tissue, which doctors sometimes call "nests."

The breasts swell and become inflamed because the cancer cells clog the vessels that carry lymph. Lymph is a clear, watery fluid that transports white blood cells and removes bacteria and proteins from the tissues.

Common symptoms of IBC include:

  • Redness of the breast: Redness involving part or all of the breast is a hallmark of inflammatory breast cancer. Sometimes the redness comes and goes.
  • Swelling of the breast: Part of or all of the breast may be swollen, enlarged, and hard.
  • Warmth: The breast may feel warm.
  • Orange-peel appearance: Your breast may swell and start to look like the peel of a navel orange (this is called "peau d'orange").
  • Other skin changes: The skin of the breast might look pink or bruised, or you may have what looks like ridges, welts, or hives on your breast.
  • Swelling of lymph nodes: The lymph nodes under your arm or above the collarbone may be swollen.
  • Flattening or inversion of the nipple: The nipple may go flat or turn inward.
  • Aching or burning: Your breast may ache or feel tender.

Some of these symptoms are similar to those caused by mastitis, a breast infection that can occur in women who are breastfeeding. Unlike inflammatory breast cancer, however, mastitis usually causes a fever and is easily treated with antibiotics. If you are diagnosed with mastitis that is not responding to treatment, ask your doctor about testing for inflammatory breast cancer. The same holds true if you are told you have cellulitis, which is a bacterial infection of the breast skin. Any persistent breast changes should be looked at by a breast specialist.

For more information, see Inflammatory Breast Cancer and Benign Breast Conditions.

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May 16, 2021 09:54AM zakheat wrote:

Hi, I want to reach out about my experience. I have an appointment with a breast specialist, but would like to hear from someone that is on the patient side of things. In February, I noticed a small abrasion on my left nipple. It was more aggravating that painful. I did have to ask my husband to avoid touching it as I was actively trying to get it to heal. I tried dry air, band aids, triple antibiotic ointment, etc. After 4 weeks of it still there (not weepy or draining; just an annoying scrape across the top of the nipple), I spoke with my doctor. She quickly dismissed it as an infection caused by clothing friction. I went on an antibiotic round. Two weeks later while working, I bent over and the pressure from within my newly swollen left breast caused the nipple to crack further and bleed quite a lot into my bra. Back to the doctor I went! They put me on another type of antibiotic but said they thought it was not so much. Eventually the swelling, itching, and pain got worse. Then one night in the shower, I found a large lump above my nipple. I called a different doctor right away. He made me an appointment for an ultrasound because upon examination he discovered the nipple was retracting (it has since gotten even worse). He also put me on yet another but broader spectrum antibiotic. The nipple scrape really confounded the doctors into thinking it must be infection! The ultrasound results showed many cyst clusters within the left breast with the largest being only 6mm. Also, no evidence of infection. They chose not to biopsy because the radiologist was so comfortable saying they were benign from the way they looked. They sent me home with no further plan to treat. Meanwhile, my left breast is hard as a rock, the nipple still has an open wound on the tip that has been there since February. The skin is slightly pink and when I wear my bra it leaves an indention so severe that it is there in the morning. I don't even wear my bra cups or straps tight because I have tension migraines that are exacerbated by tight fitting clothing and it is still leaving marks. I requested a referral to a breast specialist because my skin is beginning to get the pitted orange peel look to it. I am looking for someone to ease my mind and say, "yes, cysts can cause this nipple issue, continued swelling, itching, pain, retracted nipple, etc" The sudden onset and the continued progression of symptoms worries me and to be totally honest I have lost a bit of confidence in my doctors.

Surgery 11/2/2021 Lymph node removal (Left): Underarm/Axillary; Mastectomy (Left): Modified Radical; Prophylactic mastectomy (Right) Radiation Therapy 12/15/2021 Whole breast, Radiation boost: Left breast, Lymph nodes, Chest wall
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May 16, 2021 10:21AM wrote:


Have you seen a breast specialist? If not, I would suggest it.

When you say that there is no evidence of infection, is this based on an ultrasound only? I know that ultrasound can be used to diagnose an infection, but after this amount of time without healing and with your symptoms becoming worse, I would think that you should have a shave biopsy or punch biopsy of the nipple scrape. This type of biopsy would both check for infection and check for cancerous cells.

You are posting in an IBC thread, and I don't know if Inflammatory Breast Cancer would present this way, starting at the nipple (I'm not saying it wouldn't but I don't know). However something else that should be investigated is Paget's breast cancer, which does start at the nipple:

Can cysts cause the type of symptoms you are experiencing? Depending on the location of a cyst, it can causing pulling and pain, but I don't know that it would cause swelling or the types of problems you've described with your nipple.

I think you need to continue to pursue this. If you can't get in to see a breast specialist, you can try a dermatologist - they can do shave biopsies and punch biopsies.

Good luck! Hopefully this is just an infection that has gotten out of control. Let us know.

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May 16, 2021 12:20PM zakheat wrote:

Thank you for your quick reply! I do have an appointment with a specialist on Thursday of this week. I hope they recommend a biopsy for my own piece of mind.

I have been on so many antibiotics (I had major dental surgery in January quickly proceeded by the onset of my breast symptoms). I think since September I’ve had six rounds of three different types of antibiotics. I haven’t seen any improvement of my symptoms. Also, the radiologist noted that there were no signs of infection in his report. Yet, like you said, without further tests, who can say 100%

Hoping for quick answers! Again, thank you.

Surgery 11/2/2021 Lymph node removal (Left): Underarm/Axillary; Mastectomy (Left): Modified Radical; Prophylactic mastectomy (Right) Radiation Therapy 12/15/2021 Whole breast, Radiation boost: Left breast, Lymph nodes, Chest wall
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May 16, 2021 01:11PM moderators wrote:

zakheat, we're sorry you are here and worried, but wanted to say welcome! Please keep us posted on your appointment on Thursday and what you find out. We're thinking of you!

The Mods

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May 18, 2021 09:25AM ctky wrote:

Update on me with the itchy bump on breast that keeps coming back. Mammogram didn't see anything. Was told to see a dermatologist.

My panic has subsided. I knew not to let Google let me get carried away but when I did a telemedicine visit first, the first doctor told me pretty much "URGENT: See a breast surgeon and get a biopsy." That's the first thing that made me paranoid and got me Googling.

I saw an in-person family practice doctor instead and she said "It could be inflammatory breast cancer" without me prompting and ordered a mammogram and ultrasound.

They skipped the ultrasound because nothing came up on the mammogram.

Oh well, I got them to give me x-rays of my boobs on a CD, so I have that now ...

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May 18, 2021 11:20AM moderators wrote:

Dear ctky,

Thanks for the update.

The Mods

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May 20, 2021 07:50PM zakheat wrote:

Just posting an update. I saw the breast specialist today. They took two separate punch biopsies. She confirmed that my symptoms could be indicative of inflammatory breast cancer. I also have a diagnostic mammogram and another ultrasound scheduled for next week. She seemed concerned which was both comforting (glad to have someone taking it seriously) and difficult at the same time. My pathology is supposed to take 3-5 days. We shall see.

Surgery 11/2/2021 Lymph node removal (Left): Underarm/Axillary; Mastectomy (Left): Modified Radical; Prophylactic mastectomy (Right) Radiation Therapy 12/15/2021 Whole breast, Radiation boost: Left breast, Lymph nodes, Chest wall
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May 30, 2021 09:39AM - edited May 30, 2021 09:44AM by PurpleAqua

Both of my breast had a lump like marbles, and both painful. My breast size getting smaller day by day, and I just realize that I feel tired all the time since I was in college which is 2012, I often ignore it. Some day I had reddness upper my breast, someday it's gone. I'm getting so tired when I woke up these days. I was so curious about liquid that came out of my nipple, because I haven't married and had a child yet, and now I know. I'm trying to excercise and running, but I always became so much exhausted after that. Maybe yoga fits me well. Now I'm starting eat healthy food and rarely wearing bras. Hope it's not too late.

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May 30, 2021 09:50AM exbrnxgrl wrote:


If you are worried about breast cancer, and have had concerns since 2012, please see a doctor ASAP! Wearing or not wearing a bra has nothing to do with breast cancer and it is highly unusual to be dx’ed with bilateral bc. Regardless, experiencing symptoms for over 8 years merits a visit to the doctor. Take care.

Dx IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, ER+/PR+, HER2-
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May 30, 2021 10:59AM PurpleAqua wrote:

Thankyou for your reply. I'm kind of lack of support from my family, they know but they seems didn't care. they even often invite me to eat carcinogenic foods. Gonna see the doctor soon.

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