Concerned I may now have IBC

Abbidoodle

I had a lumpectomy on April 15 of this year, for a small, tumor that was node negative, with clear margins. I am stage 1, however I am a grade 3 with a 41 oncotype and triple negative so I will be receiving chemo very soon. Now that breast is swollen and red, and hard around the nipple area, and I am swelling terribly in my foot. I've been taking antibiotics for a week with no improvement and have now found a small hard lump under that arm. My oncologist is trying to get me in to see my surgeon to be tested for IBC. By the end of next week I should know more, but this really makes me nervous. Has anyone else had this issue so soon after a lumpectomy? FYI...I have been taken an additional antibiotic and still no change.

Abbidoodle

Here I am a month later with 2 chemo rounds under my belt and I still have the IBC cloud hanging over me. My surgeon said it was lymphangitis and then did nothing. The symptoms haven't gotten worse, they're about the same. My Oncologist prescribed 2 days of double the steroids I get normally with chemo and it did nothing, which he said should show some improvement if it was an infection. After the 2nd chemo, it now seems to look better, which oncologist said could mean it is cancer and is responding to the chemo. He wants surgeon to do 3 biopsies; one under my arm, one on my inner arm(swelling) and one of the skin on that breast. Tomorrow I go for consult and should get biopsy on Monday. This hanging over me has kept awake most nights since May. Has anyone else had IDC and later find out they now have IBC?

Tess111

Hi Abbidoodle! I am sorry you are facing this issue. I am glad that your Oncologist is insisting on biopsies. I can only tell you that I initially had a rash, that kept getting worse on my breast. Antibiotics did not help. Chemo did not seem to effect it. It eventually got a peau d'orange appearance as the rash got worse. I had a punch biopsy and ultrasound done on the area and it came back negative.

However, the problem did not go away. Eventually, my radiologist was the one who suggested it might be lymphedema of the breast. I ended up having to go for therapy to help get it under control. (It took me a while to find the right lymphedema therapist. I saw two therapists and the first had never seen breast lymphedema before and didn't seem to know how to deal with it. She couldn't even tell me for sure if that was what I had. The second therapist was quite a long drive to get to, but she knew right away that it was definitely lymphedema, and just as important, she knew how to treat it.)

It took me about 10 months from when the rash first appeared to get a definitive diagnosis. The rash appeared about two months after my last surgery.

I wear a compression bra, do exercises and have a pump that helps me keep it under control. I was terrified before I was finally diagnosed.

I hope that they are able to get to the bottom of your issue. I hope that it is not IBC, but whatever the issue is, you need for someone to give you a definitive diagnosis and then give you a plan for treatment. I will be thinking of you. Good luck with your biopsies, Abbidoodle.