IBC or Mastitis Please help

suzy2618

Not sure if I am on the right threat. I have posted on several threads. I am so scared someone please help me or give me advise. Can anyone share their IBC symptoms and what did you do to get diagnose?

Please someone help me. I am so anxious, I can't eat or sleep. 3 weeks ago I woke up with a swollen breast and redness that covered almost half of my right breast. I had horrible pain and it felt extremely warm. I went to the ER right away and they did an u/s and blood work and just diagnosed me with mastitis. WBC was high. They sent me home on two antibiotics and an antibiotic cream. I am 31 years old, my daughters are 9 and 5 year old so I am Not breastfeeding. Symptoms didn't get better so 3 days later I go see my OB and he sent me for another ultrasound at a diagnostic center because the one at the ER was basic. I go for the u/s and everything normal, the radiologist laughed at me and said you don't have IBC I am 100%. I begged him for an MRI or a Biopsy and he said no. So The next day I go to the hospital and requested to get admitted. They admitted me and had me 24 hrs there with IV antibiotics. At this point WBC was normal but CRP high, the next day CRP was re checked and went to normal.Redness went away. I go back to my OB because it was still swollen, he sent me to a breast specialist. I went to the specialist and she squeezed my nipple and a bit of water blood came out (very small amount) she sent if for cytology and said maybe they won't be able to see anything because it was such a small amount. She sends me for a mammogram and MRI she said her suspicion of IBC was very low but the def something was going on with my breast. SO a week after i go to my appt and the appt was cancelled without letting me know because the Radiologist thought it wasn't a good idea to do an MRI when I still have inflammation which can lead to a false positive and uneccessary biopsy. I cried my eyes out to the dr, i begged her to please do the mri and she completely refused. She said the citology came back negative. SHe agreed on the mammogram so I had it done but results were normal. SHe said she would do an mri in 4-6 weeks! TO call the first day of my period! So now i have to wait and i am desperate. The redness is gone, breast isnt as swollen but I get this random sharp/stabbing pain. Also my areola puckers like if I Was cold when i raise my right arm and the nipple flattens a bit. WHen my arm is down it goes away and my nipple goes back to normal. I honestly think I have inflammatory breast cancer. I don't know what else to do for the doctor to do an mri. WHEn I asked her to do a biopsy she said a biopsy of what there is nothing to do a biopsy from. DId anyone have similar symptoms as me? please help me . I do have a small tiny bruise looking spot it has not gotten darker or bigger.

LoriCA

Suzy, I'm sorry to hear of what you are going through. The fact that your WBC and CRP were high, that it responded to IV antibiotics, and that the redness comes and goes does point to an infection of some type (mastitis), not IBC. As for pushing for an MRI, even that can't reliably detect IBC, at best a trained eye can detect the skin thickening associated with early IBC. Since IBC starts by blocking the lymphatics, which is what causes the inflammatory symptoms, there usually isn't anything that can be seen with imaging until it's quite advanced. I had a clear MRI when my IBC recurred again last year and it delayed my treatment change. I'm still mad about it.

The only reliable way to confirm IBC is with a skin punch biopsy. Your doctor is correct that there is no mass or lump to tell them where to biopsy. If they suspect IBC they typically do multiple punch biopsies; I had three done at my initial diagnosis. But if your redness is gone and your symptoms are subsidizing (or come and go) instead of getting steadily worse, it will be hard to convince anyone that there's a reason to do a punch biopsy.

Maybe someone else will chime in and say otherwise, but my symptoms did not come and go. They came on suddenly and got dramatically worse daily. I had all of the textbook symptoms - my breast was swollen to twice it's size, it radiated heat, peau d'orange, rash, a purple "bruise" that went from my neck to my abdomen, swollen nodes in my armpit and above my collarbone. The purple bruise went away before I started chemo, but we could watch the redness & rash spread every day so fast it was frightening. But we each have different stories about how our IBC presented and was diagnosed and I know that mine was more aggressive than most.

I wish you the best of luck in finding out what is causing your symptoms. The fact that you were diagnosed with mastitis and it responded to IV antibiotics is a good sign because IBC rarely responds to antibiotics. Instead of going to the hospital ER every time your symptoms act up and seeing multiple doctors, I think it would make sense to stick with one doctor (your OB or PCP) and pursue the mastitis diagnosis unless your symptoms get worse quickly. If the symptoms do get worse, it makes sense to get a punch biopsy, but mastitis can often require multiple rounds of antibiotics.

suzy2618

Lorica thank you for replying to me. When you were first diagnosed was your WBC and CRP high? I thought an MRI would show 😩. I am sorry that you are going through this again. I just feel that something isn't right with my breast. I have been in so many antibiotics that if it was an infection it should have gone away by now. I called a dermatologist and was able to make an appt for next Monday. I pray they will do the biopsy. I met a girl on a group for IBC and she told me she was told it was mastitis and antibiotics did get rid of the redness but that she had peau d orange. I do have like my pores showing a bit more. My areola is getting so weird everytime I raise my arm you see the puckering and like It looks like I have extra skin on the areola that covers my nipple but only when arm is up regardless of being hot or cold. I do have a small bruise but it has not gotten bigger. How fast did your symptoms progress? What was the first symptom you noticed? You are right about sticking to just one doctor but my OB said to me you are too young for IBC and for my state of mind sent me to the breast specialist but she has been a true jerk. I just need some answers. Is there a way of me sending a picture of my breast to you or the group?

LoriCA

No my WBC and CRP were never high, both of those indicate an infection of some type, like mastitis. My bloodwork has never given any indication that something is wrong, despite it already having metastasized by the time I was diagnosed.

Peau d'orange isn't visible pores, it is a bumpy texture like the surface of an orange.

How fast did my symptoms progress? Daily, if not faster. I woke up with all of those symptoms one morning and could literally see it get worse every day. I saw a doctor who sent me right to the hospital. It continued to progress at a fast rate even while I was on several days of IV antibiotics in the hospital, so they went straight to biopsy and didn't even waste time with imaging (until they did staging scans after the biopsy confirmed IBC). I was on chemo the day after they confirmed my staging. IBC is aggressive, but mine seems to be even more aggressive than most, lucky me.

Sending a photo won't help, none of us here are qualified to make a diagnosis and there are several things that can mimic some of the IBC symptoms (mastitis, fibrocystic breasts, non-IBC breast cancer with inflammatory symptoms...), so we couldn't even reassure you one way or the other based on a photo.

One of the biggest indicators of IBC is how fast the symptoms progress. One problem with making emergency room visits every time it acts up is that there is no coordination of care; you don't have one doctor monitoring the progression as well as monitoring your response to any treatment - the fact that it appeared to respond to one antibiotic but not the other. Different kinds of infections respond to different antibiotics and mastitis may need multiple rounds.You may need more of the one that appeared to work. Remember that IBC is rare, only about 4% of all breast cancers.

When you decided to admit yourself to the hospital, what did they say? Did they agree with the mastitis diagnosis that the ER gave you? What were your discharge instructions?

suzy2618

Hi, sorry for the late response Lorica. I do have an indentation on my right breast that is very pronounced on the bottom of my breast. Is that the same as peau d orange? Wow your IBC was very sudden and aggressive. In the ER when I was admitted the doctor that saw me there said it was mastitis/celullitis of the breast and sent me home with more antibiotics. He stated that if it didn't get better with antibiotics to see a breast specialist. I was finally able to get a skin punch biopsy schedules for this Monday with a dermatologist. The breast specialist didn't want me to have the biopsy because she said to wait about 6 weeks for an mri before jumping into a biopsy. I do not want to continue waiting so finally I am able to get a punch biopsy. Will keep you updated. I am so nervous, I can't stop thinking that I have inflammatory breast cancer and thats why I now have this indentation on my breast.

sbelizabeth

Suzy2618, an indentation on the breast isn't the same as peau d'orange. If you google "peau d'orange" you'll see some images of breast skin that looks puffy with many little dimples in it.

That being said, doing a lot of google searches for IBC will just scare you, and I don't recommend it. There's an abundance of misinformation on the internet.

suzy2618

Oh ok. I have an indentation and like my pores when i hold my breast showed a lot which never happened to me before. I am waiting for skin biopsy results. Absolutely right about google, I need to stop goolging before I go crazy. Thank you sbelizabeth for the response. I truly appreciate it.

Vintaquin

Thank you for the description/advice.
I am a couple of months out of IDS lumpectomy and radiation. My left breast is noticeably warmer than the rt it doesn't have a rash. It shouldn't be mastitis I am post menopausal. I wasn't aware of IBC until a frantic google session. I will be making an appointment with my oncologist on Monday.

suzy2618

Hi Vintaquin, absolutely call Monday and make an appt. Do you have an pain or redness/bruising? I have an appt as well Monday trying to get an MRI or perhaps a Core Biopsy. I def have Peau d Orange now. 😩 Praying it is just an infection and nothing worse.

LoriCA

Suzy they can't do a core biopsy if none of your imaging shows a suspicious mass to biopsy. IBC is confirmed with a skin punch biopsy because it typically starts in the skin and there is no lump. I know that your skin punch biopsy came back negative but you are still concerned. As I stated before, since every doctor you've seen has ruled out IBC and all of your imaging and tests have come back negative, your best bet is to stick with one doctor who can monitor the progression of symptoms to make a proper diagnosis and determine if you need another punch biopsy. Rapid onset and progression is the biggest indicator of IBC, that's why it is so important for one doctor to see the daily/weekly changes. But please remember that IBC is rare and there are other things that can cause similar symptoms.

Vintaquin in your case it would be secondary IBC (if confirmed), which is a bit different from primary IBC, doesn't have many of the same symptoms. Everything I've said to Suzy concerns a primary (de novo) IBC diagnosis. It makes sense for you to follow up with your oncologist. She/he will be extra vigilant with you since you've already had breast cancer and could be having a recurrence, especially if the area is concentrated along your lumpectomy scars. I hope it's not and that it turns out to be something minor.

suzy2618

hi Lorica, I spoke to a few IBC ladies that told me that the skin punch biopsy has a 25% of false negative. Since the biopsy the physical changes have gotten worse. I now absolutely have peau d orange. I would like to send you a picture just so you can see it and tell me what you think. You are right about sticking to one doctor but my one breast surgeon wants to see me again mid May. I don't want to wait till mid May. I was told by another IBC lady that a core biopsy can be done without a mass that they can just take out tissue from the breast they call it an invisible core biopsy. Not sure if that is correct. My punch biopsy report says skin and subcutaneous tissue with scant superficial perivascular inflammation. Same result for both punch

KBeee

Remember that cancer does not come and go. It comes, stays, and gets worse. If yours is coming and going, it is not going to be IBC, even though that's what Dr. Google wants to tell you. The biopsy shows inflammation. That is good news, though I know breast changes are frightening. If it is worsening, take pictures every day to track it, and mark the edge with marker. Going to see a dermatologist would help figure out what it is and get appropriate treatment for it.