Inflammatory Breast Cancer: My Story (Part One)

I am sharing this story in an effort to show that you sometimes have to push your way through our medical system for proper care and diagnosis. Please also check out the links on the signs and symptoms of IBC. This type of breast cancer, unlike most other types, does not discriminate based on age and although it can strike older women as well, there have been documented cases as young as 12. I urge you to forward information about IBC to every woman you care about to help spread awareness about this rare and incredibly aggressive cancer.

In late February (while pregnant), I woke up one morning to discover my breasts were red. It literally seemed to have happened overnight and was similar to a sunburn. Since finding out I was pregnant in December, I had increased several cup sizes and honestly wondered just how big I was going to get!

I called my OB’s office and was instructed to take Benadryl that afternoon and night and call back in the morning if there was no change. The next morning, things looked the same so I called back. My four week check-up was the following day so I was instructed to be sure to tell the OB about it then.

He checked me during my appointment and said his best guess was some kind of infection, possibly mastitis. He gave me a prescription for 1500mg of Keflex for 10 days and told me to call the office back after I completed the antibiotics to let them know if it had worked. After 10 days, the symptoms seemed the same so I called back. He told me I needed to see a dermatologist.

I have six month check-ups with a dermatologist because I’ve had several precancerous places removed in the past and it just so happened that my appointment with him was about two weeks later. They said it was fine to wait. I started searching for “breast redness” online and about every other result was for something called inflammatory breast cancer or IBC. I had never heard of this type of cancer and reading the links scared me. But I was still operating under the assumption that I only had an infection.

Finally, my appointment for the dermatologist arrived. He looked at me and said he was also “stumped”. He wanted to consult with my OB and would call me back to let me know what we should do. He mentioned possibly doing an ultrasound just to be sure something else wasn’t going on. The next morning, I received a phone call from the dermatologist office informing me that I was being scheduled for a punch biopsy of the breast. I had read just enough about IBC to know that was not good news and busted out in tears. I was told my dermatologist would be out of town so another dermatologist would perform the procedure on Monday. I asked if I could wait for my dermatologist and was told no, it had to be done as soon as possible.

A few hours later, we had our big 21 week ultrasound and found out we were expecting a baby boy. When we met with the OB after the ultrasound, we didn’t talk at all about the baby and instead we talked about the breast redness. I asked what he was trying to rule out and he replied “malignancy”. He then proceeded to tell me about the signs and symptoms of inflammatory breast cancer. I started to cry again and he tried to reassure me by telling me it was a rare cancer but we had to rule it out to be safe. He gave me another antibiotic, 2000mg per day of Dicloxacillin for 10 days.

On Monday, I went for the biopsy. The dermatologist also explained all about inflammatory breast cancer to me and said that the one thing that was “saving” me at this point was that it was on both breasts and while that wouldn’t be impossible, it would be rare. He also gave me a steroid cream to try. On Tuesday afternoon, I received a phone call from him telling me that preliminary results did not show cancer. I was thrilled! However, his good news was followed with a “but…”. He said if the redness had not cleared by the time I returned to have my stitches removed (and finished another antibiotic) that we would have to assume something had been missed and more extensive biopsies would be performed. So I wasn’t out of the woods yet.

The following Wednesday (now 7 weeks since the redness appeared), I returned to his office. He glanced at me for less than five seconds and informed me that he wanted to give it another month and see what happened. I was horrified. The redness had not improved and I had now developed dimpling on the skin as well (another sign of IBC). Without treatment, IBC is usually fatal within about six months…and here I was, two months in. I asked if he was 100% certain that I didn’t have IBC and he said that no, he was not. I asked about doing another biopsy, at the very least performing one on the other breast, and he said no. He told me being uncomfortable was part of pregnancy and I would just have to get used to that.

Not being 100% certain that I had an infection is one thing. Not being 100% certain about whether I had a cancer that could kill me right around the time of my due date without treatment was completely unacceptable. I called my mom in tears who in turn called MD Anderson Cancer Center in Houston, Texas. MD Anderson has the only clinic in the nation that is dedicated to the diagnosis and treatment of inflammatory breast cancer. It is headed by Dr. Cristofanilli who I would soon learn is an incredible oncologist.

Continue reading – part two…