Need IBC info please

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Worried1001
Worried1001 Member Posts: 6
edited June 2020 in Not Diagnosed But Worried

Hello, I’m writing in regards to my bestfriend I’m really worried about her I’m sorry if I’ve come to the wrong place I just don’t know how else to support her. She believes she has inflammatory breast cancer, although there is obvious breast changes and she’s in constant pain myself and her family members aren’t sure. I have a few questions if anyone could please answer them, again I’m sorry if I’m in the wrong place it’s just breaking my heart seeing her so upset and basically bed ridden because of the pain and worry. These are some questions I have as I don’t know and would like to ease her mind - Is the heat/warmth of the breast with IBC constant or can it go down for long periods at a time? Would over a year and 3 months duration be safe to say it’s something else? What can ultrasound detect with IBC? Would her lymph nodes have signs of it at this stage with the time scale above? And does the redness with IBC get worse? What would a biopsy show with IBC? Sorry for all the questions I just know you guys here know more and I need help somehow helping her. She’s had a few ultrasounds some have shown swollen lymph nodes but they randomly went down at her last scan. Again I’m sorry and hope I don’t offend anyone I just want my friend back :( thank you

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2020

    Hi Worried1001, and welcome to Breastcancer.org.

    We're sorry to hear about your friend but we hope we can help put you and her at ease. First, check out the main Breastcancer.org site's section on Inflammatory Breast Cancer for accurate information on symptoms and diagnosis.

    IBC is very aggressive and fast moving -- experiencing symptoms as long as your friend has would be very very unlikely to be IBC. It sounds like she is seeing a doctor (with the ultrasounds), but is there a chance this is a skin issue such as rash or allergy? She really needs to address her concerns with her doctor. There may be something going on, but it's likely not IBC.

    We hope this helps. Others will be by soon to weigh in. We wish you and your friend the best!

    --The Mods

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  • Beesie
    Beesie Member Posts: 12,240
    edited June 2020

    How old is your friend?

    If this has been going on for over a year, and she has had several ultrasounds, what has her doctor said?

    Has she been on antibiotics?

    Have you seen pictures of IBC and does her breast resemble those pictures?

    IBC progresses very quickly so it would be hard to believe that this could be IBC if she's had symptoms for over a year, particularly if the symptoms come and go and haven't been getting progressively worse. Here are some websites with reliable information. If you go to the sites, the diagnostic process is explained.

    Inflammatory Breast Cancer: https://www.cancer.org/cancer/breast-cancer/understanding-a-breast-cancer-diagnosis/types-of-breast-cancer/inflammatory-breast-cancer.html

    Signs and symptoms of inflammatory breast cancer

    Inflammatory breast cancer (IBC) causes a number of signs and symptoms, most of which develop quickly (within 3-6 months), including:

    • Swelling (edema) 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 be tender, painful or itchy
    • Swelling of the lymph nodes under the arms or near the collarbone

    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 suspect infection at first as a cause and treat you with antibiotics.

    .

    Inflammatory Breast Cancer: https://www.breastcancer.org/symptoms/types/inflammatory

    Inflammatory breast cancer 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....

    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.

    .

    Inflammatory Breast Cancer: https://www.mayoclinic.org/diseases-conditions/inflammatory-breast-cancer/symptoms-causes/syc-20355413

    Inflammatory breast cancer is a rare type of breast cancer that develops rapidly, making the affected breast red, swollen and tender....Inflammatory breast cancer can easily be confused with a breast infection, which is a much more common cause of breast redness and swelling. Seek medical attention promptly if you notice skin changes on your breast.

    Symptoms

    Signs and symptoms of inflammatory breast cancer include:

    • Rapid change in the appearance of one breast, over the course of several weeks
    • Thickness, heaviness or visible enlargement of one breast
    • Discoloration, giving the breast a red, purple, pink or bruised appearance
    • Unusual warmth of the affected breast
    • Dimpling or ridges on the skin of the affected breast, similar to an orange peel
    • Tenderness, pain or aching
    • Enlarged lymph nodes under the arm, above the collarbone or below the collarbone
    • Flattening or turning inward of the nipple
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  • Worried1001
    Worried1001 Member Posts: 6
    edited June 2020

    thank you ever so much for your response it’s so helpful, she had a punch biopsy I believe it’s called the derm took it from a random spot due to the strange discolouration strangely it’s not exactly red it’s more of a dark tan colour all over, that showed Mild inflammation but not much else. She has been on various antibiotics none sadly helping. All I know from the scans is she has a benign fatty lump but they say it wouldn’t cause her symptoms. She had enlarged nodes on most scans but they went down before her last but the pain in her breast and armpit is still present. Also told she has extra armpit tissue. Thanks for easing her mind it will be so useful, it’s killing me seeing her so worried.

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  • Worried1001
    Worried1001 Member Posts: 6
    edited June 2020

    She is 24. Thank you so much for responding and giving so much useful information, I have responded above to the moderators with more info of what has been found. She is so so convinced and I don't know how to help :( she can't even bathe without a top on because she's scared to look, she doesn't live anymore and it's so awful to see. The symptoms don’t come and go just the warmth comes and goesThe doctors have no clue what's causing it and kinda just leaves her to it unless she pushes over and over. She has been on several different antibiotics none have helped even a little. I've seen the google images of IBC and it's hard to tell because some are a huge difference in the breast (I wouldn't say it looks like those) and others looks more mild with like a small rash and nothing else so it's hard to determine as I guess it presents differently for some. I've noted swelling and a strange discolouration from what I can see, the swelling being noticeable but not major like huge. Her armpit is swollen and sore to, her chest muscle I think it is or something on her chest is also painful and a little swollen, the same with her arm that recently started swelling and causing pain to, of which has made her worry more, she also has itching on the breast on and off and in the armpit on and off. I've sat with her the last 3 months and watched my bestfriend go downhill, she keeps saying how ultrasound can miss IBC and she's scared she will die and leave her son, I just want to help her, no pain medications are helping. She has a phone app with a breast surgeon on the 1st because her doctor is confused and can't give answers to what's causing it. Do you have any info I could have on what she could say on the phone or ask for.. I just really need advice to help her, I want to be useful :( but again thank you for all the amazing info it's very helpful and I hope I can ease her mind with this, I had to be her advocate on here because she's fearful to post I just didn't know what else to do. Hope you're well x

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited June 2020

    If the punch biopsy came back negative, that's pretty definitive that it's NOT IBC.

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  • Worried1001
    Worried1001 Member Posts: 6
    edited June 2020

    would the biopsy say something like atypical cells if it was worrying, I didn’t understand much about her biopsy report it stated about epidermal pigmentation and perivascular inflammation, but no atypia. Sorry I’m just not well at reading reports myself and her derm didn’t give much info. Could one biopsy possibly miss it if it wasn’t taken from the right place? Just wondering as i read somewhere it has to be in the right spot. Thanks so much for the info

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2020

    If she has been googling, she will certainly be convinced that she has IBC. As Alice says, a negative biopsy means no IBC. The dermatologist will need to test for other issues - probably not cancer. Possibly the antibiotics are not the correct ones? Blood tests could rule out or confirm lots of issues. Please tell her to stay away from Dr. Google.

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  • Worried1001
    Worried1001 Member Posts: 6
    edited June 2020

    I told her the same, it’s horrible seeing her this way. She keeps saying they didn’t test for IBC just everything in general but I’ve told her it would have come up, so she’s a little calmer with that now. She’s had so many bloods taken and nothing shows not even infection so we’re left baffled at this point. Thank you so much for the info x

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  • Beesie
    Beesie Member Posts: 12,240
    edited June 2020

    Has she had an MRI? That is the only remaining test that might be useful, when it comes to diagnosing IBC.

    But as the others have said, the punch biopsy is usually definitive (to my limited understanding). And while the dermatologist might not have specifically been looking for IBC, if there were any cancer cells in the punch biopsy sample, they would have shown up in the pathology analysis and it would have been reported in the result. No pathologist is going to ignore cancer cells even if the biopsy is looking for something else. Same with atypical cells, which can be a precursor to cancer. The biopsy found perivascular inflammation but no cancer and no atypical cells. Seems to me the route to go is to follow the path of the perivascular inflammation.


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  • Worried1001
    Worried1001 Member Posts: 6
    edited June 2020

    I have no clue what perivascular inflammation means I’ve tried looking into it but have no clue what any of it means if I’m honest, and she won’t look because she’s scared of googling now and has the last few weeks tried to stay away. She has had a breast mri yes, it found a to small to characterise lesion but they couldn’t find it then after on ultrasound and showed enlarged but normal lymph nodes. Thanks for all the info it all helps so much. I just want to ease her mind this should all help

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  • Rrobin0200
    Rrobin0200 Member Posts: 433
    edited June 2020

    can you post her report?

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  • Beesie
    Beesie Member Posts: 12,240
    edited June 2020

    Worried, it not for you to investigate perivascular inflammation; that's for your friend's doctors to do. But if she is concerned about IBC, my suggestion is that instead she pursue perivascular inflammation with her doctors, given all the tests and negative results she's had to-date, and how long this has been going on, which seems to significantly reduce any possibility that this is IBC.

    We're not doctors here, just patients. She needs to work with her doctors to get to the bottom of this.





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