Worried about IBC but negative Skin Punch Biopsy

Hi Everyone,

I am somewhat at my wit's end and not sure where to turn.

In Jan., I found a large lump right above my nipple in my left breast. At that point, I had not noticed skin changes.. just a very large lump that appeared almost overnight.

I went to an NP and she scheduled a mammogram and ultrasound which showed the need for a Biopsy. First Available was Feb. 15 so I went in for the Core Needle Biopsy.

By this time, my skin on the right side of my breast was very think, orange peel looking and the nipple, while not inverted, had pulled in. The breast had also enlarged significantly. But, because it was always smaller than the other anyway, if you didn't know that, I would not look larger.

The biopsy confirmed infilatrating ductal carcinoma (sorry if I am misspelling). But, the real problem with the biopsy was that I developed horrible hematomas that even now (mid-April) have not completely resolved.

Because of this, my meetings with Medical Oncology and the Surgeon in March were pointless. Both just saying they really couldn't see anything with the swelling and to come back in about a month.

In the meantime, I've had an MRI, which found two other masses and a Pet Scan, which indicated Skin involvement.

So a month has passed and I went back and they did a skin punch which I just got the results of -- negative. The surgeon called in some antibiotics which I have to go pick up shortly to help with the infection... but, there is no infection. It's been like this for months....

So, I have a mastectomy scheduled in May but I don't feel good about it. Everything I have looked at says Chemo first for IBC.

But, he is saying since the punch was negative, it's not IBC. But...this may sound odd, but I am positive that it is. I have had every symptom listed and have shooting pains and itching skin.

I really don't know what to do. My husband is sweet supportive but he just says "do what the doctors say.. they know best"... but do they? I feel like the surgeon is very kind.. but also young and maybe doesn't have that much experience with this?

Is it possible to have a negative skin punch biopsy and still have IBC?

Thanks for letting me write this out. I think that's kind of what I needed to do.