What were your symptoms of IBC?

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.

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?

Aguafria - I hope your biopsy results show negative findings for BC. 

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.

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

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?

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

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.

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.

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.

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'.

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.