Worried About Inflammatory Breast Cancer? Start here
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I’m sorry, I edited my post. I didn’t mean to seem unkind. I am just very scared and I suffer from anxiety already so I’m feeling a little overwhelmed at the moment. Been teary eyed off and on these last few days.
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No worries! Sometimes, especially when caught up in our own worries, folks forget that this is not a medical site filled with medical experts. The vast majority of members had or have breast cancer so we’ve all gone through the early parts of this disease. Once again, IBC is not common so the odds are in your favor. Take care
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hi! Posting because I noticed a small red patch on my right breast. It doesn't itch at all, it doesn't hurt, but it will not go away. No matter what I put on it. I see my dr Tuesday but I'm panicking and thinking the worse. I did have an ultrasound back in June because of an indentation on my nipple but it was all clear.
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cyards--the incidence of IBC is rare, so here's hoping that everything is normal for you. That said, my IBC adventure began with a pink "bruise" on my breast about the size of a quarter. So it's always a good idea to have any changes checked out. Good luck to you, and let us know what you find out.
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It started a couple of weeks ago. I noticed a small red patch about the size of a dime on my upper breast area. I have always had back pain, posture problems, etc so I’ve been having some of that in my back. This has fueled my fire to the point that I’m convinced I have IBC. My obgyn said he would “bet his entire life savings that it is not Ibc or breast cancer”. My dermatologist said that looks like a eczema patch, here’s a steroid cream. My PCP said it looked fungal and prescribed me a combo cream for fungal and steroid. All three doctors told me not to even give it another thought. I decided to use the combo cream and the rash went away. Now there is still a red pigment there which my dermatologist told me would fade with time and that was normal after inflammation. It’s redder in the morning and by afternoon it’s almost flesh color. It has not grown and this has been going on three weeks. I guess my concern stems from reading about how many people are misdiagnosed. Should I push for more testing? Would it be bigger than a dime by now? What would you do? Help
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did yours grow exponentially in a small amount of time or did if stay that size for a while?
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hey! Wondering what you found out at the doctor. I also have a small red patch, about the size of a dime. It does not itch. They gave me a steroid cream, which I used and it cleared the rash but there is still a pigmented area under my skin.
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Brooke--my pink "bruise" did not grow and did not shrink until I began chemotherapy. I believe your doctor(s) are correct based on the results you got from the cream. Some IBC is extremely aggressive and will seem to grow overnight, but mine did not. So everyone is different. I believe most of us IBCers had some degree of swelling in the affected breast, and some people have nipple inversion and thickened
"orange peel" skin. Good luck to you.0 -
Can IBC start with a lump, turn purple like a bruise several months later, before turning red?
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Hi everyone, I’m posting of concerns of my mom. She noticed around 5 days ago a bite below her nipple. She also seemed what to be a bite on her upper chest as well. The bite on her upper chest is just a small scab now, but the bite under her nipple is red. The redness has seemed to have lightened up a bit. It’s only one bump in the middle. She said her nipple is slightly sore, but she thinks it’s from the bandaid she had on it. She said her skin doesn’t seem thicker, no orange look, her breast isn’t hard and heavy feeling, she said it’s not hot to the touch and her breasts both feel the same, she feels otherwise fine. She did say however that the “bite” does itch once in a while. I’m really concerned for her. The redness has not spread. Google has been a terrible thing for me. She did thankfully book a dr appt for tomorrow, so hopefully it’s nothing but my anxiety making something small into something big. It’s hard to find solid info on how IBC started for anyone. I know everyone is different. But wouldn’t in the five days that she’s had this, wouldn’t it have progressed more? I e read IBC progresses quite rapidly
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thank you for this. I do have really bad anxiety. I try to manage it myself, but broke down and took my meds yesterday and it really helped ease my mind and I finally slept.
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Hi everyone,
I’m looking for some insight into weird symptoms I’ve been having in my left breast only. Almost a month ago now I noticed a bit of discomfort and maybe some slight swelling, however I was close to my period so I just brushed it off. Progressing into the month it slightly got more swollen and painful and was more noticeable and that’s when I started to worry. It feels like a constant mild pain and breast has never decreased in size.
I got into the clinic and the doctor said she noticed thickening of breast tissue in the left side however no skin changes (no redness, dimpling,etc) she said she didn’t feel any lumps or swollen lymph nodes and prescribed me antibiotics for 10 days. She also referred me to the hospital to get an ultrasound and mammogram (Forgot to mention I am only 25) but that appt is only in three weeks from now. Im scared if it is Ibc that thatis too long to wait so I am trying to get in sooner.Has anyone else ever experienced this as an early symptom ? I’m so scared that it has consumed me and I can barely function.
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Maddy--I'm so sorry you are going through this anxiety; it's horrible. I can tell you that my first symptom was a pale pink "bruise" about the size of a quarter on top of my breast. I never had many of the textbook symptoms though I did develop skin thickening that was found on a breast MRI and a little swelling. Please remember that IBC is VERY rare so chances are that you don't have it.
It was about a month between the time I noticed the pink spot and my diagnosis, so though you do want to get things checked as soon as possible it usually doesn't work out that way. Do call and let them know you want their earliest appointment. My best wishes to you; hopefully the antibiotic will help and you'll never have to come back here again!! Let us know what you find out. Hugs.
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Thank you for your kind words Iw422. This really helped me. I went to see my doctor that I’ve had since I was a kid yesterday and he got me an ultrasound appointment next week instead of three weeks from now. I’m going to live everyday as best and happy as I can until then. Will let you know what the results are.
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So glad you were able to get the US moved up, Maddy. I'll be thinking of you, and hoping for good news.
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Hello… I do not have a breast cancer diagnosis at the moment but am suspecting it's heading in that direction — possibly IBC.
I will be 52 next month and had a total hysterectomy & oophorectomy a little over 2 years ago after a uterine mass and cervical precancer were discovered and subsequently went through surgical menopause. I was on the Estradiol patch for about a year after that.
Back in the spring, I had a screening mammogram which noted (as it always does) heterogeneously dense breast tissue with no identifiable mass or abnormality. A month or two later, I started having a feeling of heaviness in my L breast, reported it to my GYN who ordered a diagnostic mammogram which was done at the end of June.
The results were the same as on the screening, and the report said to return for my next annual mammogram 10 months later.
I accepted that it must be okay and went about my business…
Within 2 weeks from the diagnostic mammogram, the L breast started hurting and got worse fast — a burning, aching sensation that was unbearable a week later.
I reported the new symptoms to my GYN, and she sent a referral to a breast specialist and ordered a breast MRI. The appointment for the MRI was about a week later (~ 2 weeks after pain began), and the appointment with the specialist was about a month away… In the meantime, the pain intensified and radiated into my L armpit, and my L breast looked and felt swollen.
The breast MRI results were unremarkable and noted moderate background enhancement.
The excruciating pain made me increasingly impatient to be seen, and I found another breast specialist who ended up seeing me one day before the other scheduled appointment — which I kept as well.
The first specialist said I had something inflammatory going on and deemed it was fibrocystic breast disease (which I have never had before or after the hysterectomy), and the very next day, the other specialist said she thought I'd pulled an intercostal muscle…
I left there in tears of pain and frustration.
The following week, I saw a pain specialist who didn't think it was anything musculoskeletal, and in the days between the previous appointment and the one with the pain specialist, a small pinkish spot had appeared on the outer side of my L breast where the pain originated. He recommended I send a message to the specialist I'd seen the week before with the new spot… I hesitated to reach out to her for over a week after my last experience, and a couple days after I sent a photo of the area, she said it didn't look like anything to be concerned about.
At that point, I was at a loss, and the pain continued to intensify in my breast and armpit. The area has continued to swell to the point that even the most forgiving bra feels like piano wire against my breast/armpit fold, and even resting my arm at my side is intollerable.
The only thing that has offered any noteworthy relief has been Biofreeze spray which you can smell from a mile away.
There have been several other new pinkish spots crop up over the past couple weeks now, and the skin on the upper/outer side of my breast and around my nipple has begun to take on a new texture — not orange peel, but more like ripples or ridges — and the veins are more prominent.
While it feels like it's been an eternity, I have had to remind myself that the pain and other symptoms only started in early to mid July…
A couple days ago, out of desperation for some clue as to what is actually going on, I had a thermographic scan of my breasts, and low and behold, there was a suspicious hot zone on the outer side of my left breast spreading to the armpit. It felt somehow validating to see a visual confirmation of what I've been trying to tell the doctors for weeks.
I have another appointment with a new, third breast specialist this coming week who I hope can take a look at all the pieces of the puzzle and help me get some real answers so I can get the right treatment and relief from the unrelenting pain which is keeping me up at night… again.
Does any of this sound familiar to anyone?? Any suggestions?
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Good day!
I am a 30 year old mom of 2 little girls. Currently being assessed for breast disease.
Here's a little background:
In February 2020, I felt a lump in my RIGHT breast, the skin of the areola turned very dark, and part of my nipple inverted. I went to my OB-Gyn and he ordered mammogram and breast ultrasound which came back clear. He said it was probably nothing. Then I noticed, my LEFT breast was having spontaneous clear fluid discharge. Which I ignored coz google said clear is basically fine. I went on with my life. Come February 2021, I went to my OB Gyn for my Well Woman Exam and he felt the lump again, and sent me for another mammogram and ultrasound. I told him that my LEFT breast was having spontaneous clear discharge, he palpated it and didn't feel any lump, but noticed that it had gotten bigger. Again, mammogram and ultrasound came back clear. In September 2021, my right breast lump increased in size, I was then referred to a breast specialist. The said doctor dismissed everything. She said "I can feel something, but I trust the imaging results more than my hands. That's probably just a piece of breast tissue that feels like a big lump." So my OB Gyn prescribed antibiotics for the left breast and referred me to another breast specialist for the right breast coz he was starting to get concerned. The next breast surgeon saw me on February 2022, she told me that 10-15% of breast tumors do not show up on imaging. She felt it and said it was about 5 cm. But was concerned about my LEFT breast coz she said it looked pink and is way bigger than my right breast. I told her about the discharge and that there was no lump in my left breast but it definitely increased in size. She palpated it and said, "Okay, no lump but it's definitely pink and very cold to touch. Interesting." I had my breast lumpectomy in March 2022, she was aable to get 2 masses from breast, one was 5cm, and the other one was almost 6 cm. None of them showed up on any imaging. I went for my post op follow up and was told that they were benign but definitely solid masses and they couldn't identify what it was. She brought up the pink tinge of my left breast again and referred me to MD Anderson. She said they have advanced technology and can help figure out what's going on with my left breast. My symptoms were LEFT breast enlargement, spontaneous watery discharge, breast pain, eczema like rash that comes and goes, extremely cold to touch, and the entire breast had a pinkish tinge to it. I went to MD Anderson in July 2022, it was a long appointment. Consultation, breast ultrasound, mammogram with tomo, and another consultation all in one day. Imaging came back clear. They have ruled out mastitis, but said that it was definitely concerning. So they put me under surveillance and wanted to see me in 3 months and said that if the rash comes back, go see a dermatologist. Due to several health issues that year (major surgeries, covid, transient ischemic attack) I wasn't able to come back until June 2023. The rash came and disappeared many times. I told them that the pain has gotten worse, spread to my back. Spontaneous discharge is still here, breast is definitely pink, no peau d'orange skin though. It's not warm but very cold to touch. They did another set of imaging, this time it was mammogram with tomo, ultrasound, and breast MRI. All came back negative. They asked me to come back in 3 months again and said that they couldn't discharge me as a patient yet coz I'm still considered "under surveillance". Last November 20th, I had my follow up check up, the doctor said "Okay, no need to wait for the rash to appear, I need you to see a dermatologist and they have to take samples of the skin. It's still pink and it's not going anywhere at this point." Then she said I need to have another mammogram with tomo and ultrasound but also told me about the risks. She said that it's not healthy to get the mammograms so close together, in my case 5 months apart, so she said it's up to me. Or she can test my prolactin levels and wait for the skin biopsy result before undergoing under mammogram. But she said I definitely need it. She wants to rule out IBC and Paget's. But just wanted to make sure that I'm aware of the risks. Prolactin came back normal. Today at 5:30pm, I have a skin biopsy scheduled.
I am at loss. But also wanted to feel hopeful. I'm just scared that it might be too late if it really is IBC, because the symptoms have been going on for a while now.
Wanted to ask if any of you had similar symptoms as mine? Cold to touch and didn't develop peau d'orange?
Thank you very much!
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@summer0720 we're so sorry for all you're going through. That's a lot of testing, and of course worry. It's really good that they are being so cautious, and proactive. Glad you have a biopsy scheduled. There are so many different benign breast conditions as well that it could naturally fall under. Please keep us all posted!!
We're here for you,
The Mods
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Hello! I am a 39yo that recently noticed changes in my left breast. Very dense on one quadrant, feel a small lump, feels heavy, have an aching/burning intermittent pain (like a very brief pain every few minutes) that started in that quadrant but now feels like it's coming from around the nipple area as well. I went for an appointment 6 days ago and the doctor said it just felt like dense tissue but she ordered a diagnostic mammogram and ultrasound. After calling the hospital that she works with, I found they couldn't get me for 4 months (like seriously - what in the world?!?!?) so I ended up calling an imaging center and they were able to get me scheduled for next week. My appointment was set for a little over a week from the date I called, so it's now 5 days away. I'm getting extremely anxious as the burning pain has intensified since my appointment last week and today I noticed three small red dots (look like pin-pricks) on the side of my breast where the denseness/heaviness is. No other noticeable skin changes. My right breast is completely normal and seems to be mostly soft, fatty tissue. I've got 5 more days to wait for my scans, but I know that if this is IBC, it moves fast. Do I need to be concerned enough to call somewhere else and see if they can get me in sooner? Is it possible that this is really just dense tissue causing this burning pain and heaviness, and what feels like a lump? Any advice is appreciated!
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Welcome, @momof4munchkins. We're so sorry you find yourself here with this worry, we know how concerning changes to your breast health can be. 5 days can feel like a lifetime when you're worried about breast cancer, but the wait is unlikely to have any sort of impact your outcome. IBC is one of the rarest forms of breast cancer, accounting for just 1-5% of all cases in the US. The most common symptoms can be indicative of a number of other conditions, but being proactive and getting the proper diagnostic testing done is always a good thing!
We know it's hard not to worry, but try to stay busy over the next 5 days. And please do keep us posted when you learn more, we'll be thinking of you.
The Mods
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Thank you so much for your support. I had to return the day after my mammogram and ultrasound for biopsies of the mass found in my breast and the axillary lymph nodes. Pathology came back today with Invasive Ductal Carcinoma with Focal Micropapillary Features for the breast biopsy, and benign fibrocystic tissue for the lymph node biopsy. So, looks like not IBC! Which I'm thankful for. Now to move forward with an MRI and surgical consult to talk about next steps.
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We're so glad you came back to share an update, @momof4munchkins! And we're especially glad that it's not IBC - we know no diagnosis is easy (not even close), but the added worry of IBC was certainly making this process a lot more overwhelming. Please keep checking in as you continue with your tests and come up with a plan with your team of doctors, we're here for you every step of the way!
The Mods
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Hi! I just wanted to give an update. My breast biopsy came back as inflammation and dilated blood vessels but didn't say IBC. They took a sample of one spot. Yesterday, I went back for more biopsies. They said to be very sure they took 3 more samples to compare it with the first sample that they took. The top part of my left breast has gotten really hard and painful. A bump has developed but it feels like it's attached to the chest wall. So I am not sure if it's a bone that got inflammed or a mass that's attached to the chest wall. I have another mammogram/ultrasound and consultation at MD Anderson on January 8th. Thank you very much!
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hello, i am 38f and for about 2-3 months i’ve had a pinkish/faint red patch that covers about 1/4 of my breast on the upper left hand side above my nipple, ive read some posts here and my symptoms sound close to what lw422 had; it’s mainly the pinkish patch with no change in texture, doesn’t itch and it’s not raised or anything. it hasn’t gotten smaller or worse, and recently i noticed another smaller red patch appear near the armpit, which also won’t go away. i saw a general physician and he felt no lumps or swollen lymph nodes but that i should get an ultrasound (he thought mammogram wasn’t necessary), the wait time for which is over a month and i’m racked with health anxiety.. he told me to apply antifungal cream in the meantime in case it’s just topical and i’ve applied it twice daily for two weeks and it hasn’t done a thing, which is also adding to my health anxiety.. i wonder if ibc is possible with just one symptom (red patch that won’t go away)? thanks for reading and happy new year :/
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Hello again, @summer0720, and thank you for the update! We're sending you all the positive vibes and good luck for your upcoming appointment at MD Anderson. May it bring you clarity, and the best possible outcome.
@jscivias, welcome to Breastcancer.org! We're sorry you are here and worried, but glad you found us! We know that medical tests can be challenging, especially if you are experiencing health anxiety. While we're not medical professionals, we believe it's positive your doctor is being proactive by recommending an ultrasound to rule out anything serious. Hang in there, and try keeping yourself busy with things you enjoy while you wait. We're all here for you if you want to talk or share updates. Good luck, and sending positive vibes your way!
The Mods
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Thank you so much for this wonderful community and everyone in it! I was recently diagnosed with IDC Stage 3 and today saw the breast cancer surgeon. He thinks the redness around my nipple and dimples on my skin may be IBC but we have to wait to get more scans. So I'm waiting to be called for my next appointments. Waiting is so hard! I know I shouldn't be thinking of all of the possibilities but sometimes our minds go there. I keep telling myself there's nothing I can do about it now but try to keep living healthy. Am definitely being more intentional about my daily walks, hyrdration, sleep, etc. and just reading through the threads here make me feel better - we're not alone. So thank you!
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@purpletiger — Sorry to hear of your diagnosis; I know how anxious you must be feeling. Hopefully you don't have IBC but if you do, there are very successful standard-of-care treatments available now. I am 3 years out from my diagnosis and I never expected to be here; it was a terrifying ordeal. Once you have a final diagnosis and start treatment you will calm a bit. Take care and let us know what you find out. Sending positive thoughts to you.
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Thank you so much @lw422 for your kind and encouraging comments. You are an angel!
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@purpletiger - Sending you heartfelt thoughts during this waiting period. As you can already see, you're not alone, this community is here to support you. Take care, and let us know how it goes.
Warmest wishes,
The Mods
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@purpletiger — I am far from angelic, but I want to be here for people with new diagnoses because I remember how much it meant to me when I got mine. The kindness of strangers on this forum saved my sanity. It's such a scary and anxiety-filled time when you hear the word "cancer." Just know that there are plenty of us here, walking that path with you. None of us wanted t o be here but we're still standing!! Sending you a virtual hug.
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