TNIBC's Journey with Inflammatory Breast Cancer

On Monday Aug 2, 2010 I found swelling in my left armpit, about the size of an orange. I saw my primary care doc the following day, he sent me for an immediate mammogram. I was in denial through that part of the process. I was then 'squeezed in' for an immediate ultrasound, I can still see the computer monitor with that big dark spot. After that was done the radiologist came in and said "I'm 99% sure it's cancer." That's how my roller coaster ride began. I was again 'squeezed in' for a needle biopsy on the following day. And of course, it was positive. A week later, when I met the surgeon, he did a skin biopsy which confirmed inflammatory breast cancer.

Inflammatory breast cancer is such a nasty aggressive form of breast cancer, and I'm triple negative also. That makes my cancer about as aggressive and nasty as it gets. In every case where I had a decision, I chose the more aggressive route. I wanted to be nasty and aggressive right back.

I completed 6 rounds of TAC (taxotere, adriamyacin, cytoxan) at three week intervals. My last infusion was on Dec. 9, 2010. My oncologist was very proactive in treating side effects. I had more prescriptions for nausea than I used, but I was very happy to have them (and several OTC helpers) on hand. I dealt with bone pain, heartburn, diarrhea, nausea, and what I call the chemo fog. I also lost my hair, suffer from peripheral neuropathy, and the effects of chemo brain. The best advice I have for chemo? Drink lots of water, and ask your docs about all side effects. They have ways to help you manage anything that might come up.

The surgery and initial recovery period went as expected. Although I was told about the possibility of lymphedema, I was not prepared for the reality of it. I also was not prepared for the adhesions in my left axilla. Both lymphedema and the adhesions impact my range of motion.

Because of my diagnosis, I had a very aggressive radiation protocol. I went to treatments twice a day for 22 days, or 44 treatments. The treatments had to be at least 6 hours apart, so I was driving at least two and half to three hours a day just to get to and from treatments. My best advice for radiation treatments? Drink lots of water and use your ointments liberally and frequently.

It has now been a year since my initial diagnosis. Yes, I still worry that every little cough or headache means that the cancer has metastasized. But I work every day to find the normal...and more important I focus on the little joys to be found in each day.