What were your symptoms of IBC?
And please forgive me if this is the wrong forum 
I'm just curious as to what your story was. Thanks
Comments
-
Hi Aguafria- my symptoms occurred overnight. My right breast was swollen, red, warm to the touch, and had peu d'orange (orange peel skin). When I examined my breast in the mirror, my breast looked like I had stretch marks (dimpling). The next day, my breast looked like I had hives. As, the days followed I had thickening around my areola and my breast started turning purple.
0 -
thank you for your response
I'm so sorry that you are going through this. I have not been diagnosed at all but my symptoms and Google search lead me to IBC and I'm just scared right now. Tomorrow I have an MRI and a punch biopsy and just hoping for good results.
It'll be 2 weeks on either this Wednesday or Thursday that I woke up and had a redness to my left breast. Not raised at all but it's about 3 inches wide and 3 inches up and down. I was on amoxicillin for a sinus infection and thought that might had something to do w/ it. No other spots though, no fever and no pain at that time.
Called my PCP, she got me in and thought it was cellulitis and we tried a couple more antibiotics, etc. she also had me get an ultrasound and mamo and those came back fine. There was some hardness in the breast where the redness was. There's also a little bit of skin dimpling on the redness but not all over. My PCP said to go see a breast specialist. We live in AZ so off I go to MD Anderson to their breast clinic. The surgeon says to stop taking the antibiotics b/c they didn't think it was an infection, so I did. That was 3 days agoon Thursday and tomorrow I have the MRI and biopsy.
I have noticed a little more pain since a couple of wks ago, a couple of sharp pains but nothing horrible. It's just tough waiting. I'm 41 yrs old, married, have 2 children (11 & 9) and at times my mind goes to the horrible places. I try to talk myself out of it and have to remember I just have to wait and see. I'm sure you know what I mean
Thanks for letting me vent.
0 -
Auquafria,
Hope your results show negative for bc. glad you are being looked at quickly.
Terri
0 -
Thank you
I had the MRI and biopsy today so now it's a waiting game0 -
thank you
0 -
My story went like this:
Around the beginning of April 2015, 9 months after weaning my daughter off breast feeding, I was taking a shower and felt that tingle of milk letdown in my left breast. I thought it was super odd as I hadn't had that since my milk dried up. First thing I did was say "oh sh!t" and got a pregnancy test asap. My husband had a vasectomy in January of 2015 and my periods were always irregular so there was a chance I could have been pregnant. It was negative. About a week later I had the let down feeling again and this time what looked like colostrum discharged from my left nipple. Now I was a bit concerned. Within 24 hours my left breast doubled is size, felt warm, and was red. My nipple discharge had become tan in color and tinged with blood at times. I called to be seen right away.
I still suspected milk duct infection at this point and the breast surgeon I saw the next day agreed. I was put on an oral antibiotic, but to be safe she ordered an ultrasound. The ultrasound was scheduled 7 days later. The "infection" had not improved after 3-5 days of antibiotics like you'd expect it to, in fact everything was getting worse. I think I knew already but still hoped I was wrong. The US showed major swelling and a probable mass though the swelling was so severe she couldn't measure it exactly. Also noted was an irregular node. I was asked to come back the next day for a biopsy and mammogram.
During the biopsy, even with attempting to shoot lidocain directly into the biopsy needle, I would not go numb. The biopsy hurt so bad. She said the inflammation was so bad and offered to reschedule so I could be sedated but I didn't want to wait any longer to find out what was wrong with me. Thankfully she got my armpit numb and was able to biopsy the irregular node noted in the previous US.
24 hours after the biopsy my surgeon called with the bad news. I saw her the next day and she dx me with IBC.
0 -
Oh my goodness
Thank you for sharing your story with me. That just happened so fast (((Hugs)))0 -
Right? crazy as it was at the time, I was grateful for how fast it all went. It was 12 days from diagnosis to chemo and with the battery of tests and the port placement surgery in between all that it left minimal time to sit around being terrified. I was still terrified course but I do better when I can just jump in with less time to stew.
Hopefully you never know that feeling. Have you had any tests/results yet?
0 -
It's so crazy. Especially when you have little kids, you're young and not expecting that kind of news, etc. and I bet your mind just goes to crazy places. It's been 3 weeks now since all of this has went down for me and ugh.
My punch biopsy was negative for IBC (although I know that can be missed). The breast MRI shows an 8 mm mass that wasn't seen on mammogram and regular ultrasound. So I have an ultrasound biopsy scheduled for this Wednesday. If they can't get to it then, we'll have to schedule another appointment for a MRI biopsy. My breast is still red, maybe not as red but still definitely red. Maybe a stitch got lose from my breast lift back in 2013?? I'm hoping! :
0 -
Thank you!
Still waiting. They said either today or Monday they will call. Kinda strange though, the mass they saw was nowhere near the redness. The radiologist said it was in the 2:30 position of my breast but the redness is on the other side. They put breast markers in there so they can find it for future reference. Hopefully that's a good sign 0 -
Yes, hopefully a good sign
If they do not call you today, please try not to stress about it, easier said than done.. I know. Try to keep your mind occupated. 0 -
Thanks!I think I may binge watch some Netflix this weekend!!
0 -
Oh gosh, that is kinda funny. When I was asking the radiologist about where the mass was compared to the redness on my breast he was like "uh you have redness?" I was thinking "yeah dude, it's on the other side of my boob." Later on he said that there are sometimes just "unexplained redness" I'm thinking it's been there for almost 4 wks and it appeared overnight. No infection, fever, etc. I just hope they aren't missing anything!
And thanks :
0 -
did anyone's IBC show up very soon after a partial mastectomy for idc? My breast has been red all over for 6 weeks now started 1.5 weeks after my nose removal and clear margin for IDC. I went to dr last week and was put on Bactrin for cellulitis. But is not getting better. Thing is it was red like I was told it was going to be but it just never got better. Have any of you had secondary IBC so close to an unrelatedsurgery?
0 -
phalanx -- hope you have gone back to your surgeon, as post-op infection -- which is what you have -- is dangerous, and should be treated aggressively
0 -
Aguafria, just curious if you ever got an answer to your redness, I have similiar symtoms
0 -
Red area on breast.... I'm in treatment for TNBC and today I saw a small red area on my other breast. Of course I went immediately to Dr a Google and up came Paget's Disease/IBC. I'm frightened and can't believe that this could be a possibility. But, after reading symptoms I have diagnosed myself for the worse ‼️ In one week I have my 5th TC infusion. I'm thinking it I do have IBC in the other breast, at least the Chemo could have a positive effect. Any thoughts, suggestions, advice?
0 -
I'm absolutely new here and got to this area because I've been looking for info about the milk letdown feeling. About 7 years ago I had a large fibroadenoma removed from my left breast, and I've been having yearly mammograms since. I've recently been going in every six months because my right breast is super dense and shows tons of micro calcifications. My last mamm was in February. They said it was still dense and had more micro calcs but to just come back in 6 months. About a week ago I noticed that milk letdown feeling. I stopped nursing about 8 years ago. My right breast is now so swollen it won't fit in my bra. It feels so heavy and it's hot and red. I have discharge but it's green/brown and they said last time that was normal. While in the shower today I could barely lift my arm to wash my hair. The pain is like burning but also a bruise type feeling. I'm afraid if I call they will say they won't pay for another mammogram. But I'm really nervous about this.
0 -
oh they will for sure pay! You need to go ASAP. Those symptoms are IBC symptoms are would warrant an ultrasound. But you should go to a different doctor because I bet you have an infection and should start antibiotics right away. But while you're there don't let them say no to a mammo AND an ultrasound. Cry your little heart out to make them order those tests right away. If I were you, because of the pain, I would just go to the er where you can get every test and see every type of specialist right away! Just go to er:) super good luck
0 -
They are also signs of mastitis, which would be a lot more likely. You do need to see your doctor.
0 -
hi all, first time posting. I'm three years out from IDC stage iii. Mets to bone 1.5 years ago. NED for nine months until... what is presenting as IBC. Waiting on results from punch biopsy on Friday. My question, as I frantically search for less frightening dx, did anyone think it might be shingles? I fear that biopsy yields false negative and we waste pre ious tx time. Scared just scared.
0 -
Not sure what you mean by "presenting as IBC". Are you referring to a 'redness/rash'? If so there are MANY possibilities as to what is going on. 'Redness/rash' does NOT always present with IBC - I never had redness/rash, nor pain or 'itchiness'. Of course, anything is possible SO you definately do need to find out, with your HX, but do not jump to (at this time) unfounded conclusions.
Just a thought - perhaps request a Scan (CT/MRI with contrast or a PET) which should up any area of concern so an exact area is known to biopsy if needed.
0 -
kicks, thanks for reply. I meant I'm presenting with IBC symptoms and seeing how similar they are to shingles. Had biopsy Friday, but unable to sit calmly and wait.
0 -
If you would say what your "IBC symptoms" are, you might get more replies and others thoughts. There are no 'set in stone rules' that IBC has to present as.
IBC presents in different ways to different ones of us. - so saying "presenting g as IBC" without any other information does not give any real information.
0 -
I second Kicks when she says IBC does not present the same for everyone. I also did not have a rash. I started out with a huge bruise and a lump. I had run into a door the day before and assumed it was due to the injury.. I had a Dr appointment three weeks later...in that time the "bruise" spread, my breast became hot and itchy, and I had some pain....the nipple inverted and I had the orange peel skin...it engulfed my entire breast which was twice as large as the other. My PCP took one look and sent me to a surgeon, who had a biopsy done but said that she was certain I had IBC. When the results came back positive for cancer she sent me directly from her office to a MO, who had agreed to see me as soon as I could get there. Another difference in my IBC is that I was 70 when diagnosed, which is much later in life than most IBC diagnoses. There are always differences because we are all different.
0 -
I joined as I am worried about some symptoms I have been having. I'm really not sure if I should be so concerned. It started out as a red mark that I noticed on the upper outer quadrant of my left breast about a month ago. Maybe the size of a jelly bean. Really small. Originally it looked like the beginning of a rash or maybe I had rubbed that area somehow. My breast is not red, inflamed, itchy or different texture. In fact this red mark/bruise is the only symptom I am experiencing. Over the course of the last month it has not become worse but it is still there. It isn't red, but looks more like a bruise or skin discoloration. I was concerned so went to my obgyn and had her look at it. She didn't seem concerned with it. She didn't feel any lumps either. I asked how can we be sure and she sent me to a breast center to have a diagnostic mammogram and ultrasound. I went to do that and everything looked normal. The doctor at the breast center suggested i see a dermatologist as it looked more like a skin condition. I thought maybe my next Avenue would be to check with a dermatologist.
I hear all of these stories about how so many people are misdiagnosed. I also hear that ibc spreads fast. So naturally i would want to catch this ahead of time so I guess my question is does this sound like cause for concern for ibc? Any advice? I feel like alot of this is in my head as I have now seen too much on Google search. That can do a number on your stress level...
ThanKs.
0 -
Mama16 - An appointment with a Dermatologist would be a good idea. The vast majority of skin issues ('redness/rash'/etc.) are just that - skin issues. Many/most skin issues that appear (even on the breast) have nothing to do with any type of BC.
IBC is rare - only between 1% - 5% of ALL DIAGNOSED with thpes of BC (DCIS/IDC/ILC/IBC) will be IBC. It is aggressive and rapid in presentation/progression. It can (often does) literally present overnight and rapidly progresses within days/weeks. It has no 'set in stone rules' it has to follow all the time. For me, it did present literally overnight with a swollen lymph node. 7 days later, I had my DX - IBC. 17 days later I started neoadjuvant (pre-surgery) Chemo. In those 17 days, the node did continue to enlarge, breast enlarged, nipple inverted and peau d'orange develooed. There was never any 'redness/rash', 'heat', pain or 'itchiness'.
Certainly, there are some who are mis-diagnosed and it is 'easier' (in some ways) to dwell on the negativity - but there are MANY of us who did get correct DX quickly. Somehow, the negative get more attention than the positive - this, unfortunately, happens with so many 'things' in LIFE.
Of course, anything is a possibility, no matter how incredibly unlikely it is - so find out what is going on sooner rather than later. Do not jump to a self 'diagnosis' based on Dr. 'Quack Google'.
0 -
I second Kicks. In fact, many of us (including me) were DXed with IBC before we had ever heard of it. My IBC 'presented' in very different ways than Kicks and most others. If you're that concerned, I'd recommend a 3D mammogram: it can pick up the microcalcifications that are present in IBC.
IBC is aggressive and the fact that your symptoms haven't changed suggests IBC isn't the obvious DX. Yes, you need to have it checked out, but please don't over worry.
brid
0 -
my inflammory breast cancer presented very quickly,except for the iching,but I didn't realize what it was until after the dianogsis. The itching starter in the summer and the other symbols showed in Oct. My left breast double in size with two lumps and an inverted nipple. It didn't show on mammogram, or ultrasound. A biopsy did the job.
0
