It's been four days since my husband, Joe, my daughter, Janaya, and I sat in the medical oncologist's office at the Mayo Clinic in Scottsdale, Arizona and heard the words, "You've got Inflammatory Breast Cancer." I had initially planned on starting a journal to document my experience, but then decided to start a blog so I can keep my family and friends updated.
This journey actually started about two and a half months ago. I was in my bedroom getting dressed after my shower when I noticed in the mirror that my left breast was larger than my right one and was tender to touch. I thought it was odd, but wasn't overly concerned. I was due to start my period and thought it must be some weird hormonal thing. I waited until my cycle ended, but although the tenderness had gone, my left breast remained larger than the right. I made an appointment with my doctor and she scheduled a mammogram which came back negative.
The next step was a breast ultrasound. This showed no cancerous lesion, but did show very dense tissue of both breasts as well as asymmetry and skin thickening on the left. The radiologist said the findings were concerning for inflammatory breast cancer (referred to as IBC hereafter) . My doctor sent me for a punch biopsy the next day. When I saw the breast surgeon for this procedure, he said based on my physical exam there was only a one in a million chance I had inflammatory breast cancer, but he would go ahead and do the punch biopsy which would rule it out definitely. I went to N.J. the following week to visit my sister and while I was there got the news that the punch biopsy was negative. He would order an MRI.
At this point, I was concerned. Something must be wrong, but the tests were all coming back negative. However, based on the surgeon's comments I wasn't concerned about inflammatory breast cancer. I didn't even do any research because I trusted what he said. The MRI has to be done a certain number of days after the beginning of your cycle so more waiting was involved before it was done. Then more waiting to get the results. Finally, I spoke with the surgeon. Again, the results were edema (swelling) and skin thickening. The radiologist's report again said this was concerning for inflammatory breast cancer. The surgeon still didn't think so and told me he would have to do some research. I went home and started researching IBC on the Internet and I knew in my gut this was what I was dealing with. Almost everything the articles described fit. This is when I decided to go to the Breast Clinic at the Mayo Clinic in Scottsdale.
I called Monday morning and when I told them my concerns they got me in the very next day. I saw a nurse practitioner and a surgeon who both felt, based on my physical exam, that I was highly suspicious for IBC. They did a needle biopsy and I would have the results in two days.
Thursday afternoon, I spoke with the Mayo Clinic nurse on the phone. My biopsy showed invasive ductal carcinoma. The most common kind of breast cancer, she told me. At first I was relieved. Did this mean I didn't have IBC? No, that diagnosis was made based on the doctor's physical exam. I was given an appointment the next morning with a medical oncologist.
It is hard to describe all the emotions I felt at hearing the words, "You've got inflammatory breast cancer." It was a confirmation of what I had suspected so I didn't really feel any sense of surprise or shock. I'd done a lot of research on the Internet about this disease and knew that my symptoms matched the descriptions I read. Mostly, there was a sinking feeling in my stomach. I knew from my research that this was a rare and aggressive cancer. The prognosis given in all the articles I read was poor, 40-50% of patients survive five years. It was a bit overwhelming to come face to face with my mortality so abruptly.
We had told the kids the night before about my positive biopsy results. They'd known I was going back and forth to doctors and for testing, but other than that hadn't known what was going on. The boys were very calm. They gave me big hugs. As soon as she heard, Janaya told me she wanted to know everything and be involved each step of the way. She wanted to go with Joe and I the next day to hear what the medical oncologist had to say. I was amazed at the strength and bravery she showed as the doctor explained the pathology results, the treatment plan, and the prognosis. She took notes and asked really good questions. I think it was her strength that helped me maintain my composure.
The few days since have been pretty rough emotionally. Joe took care of telling my principal, Sheila, that I would have to leave work. I knew I couldn't go and speak with her in person yet without breaking down. Not being able to teach is going to be one of the hardest parts of this experience.
The amazing thing has been all the love and support pouring in from everyone. I'm saving everyone's notes to reread during my low moments. It's hard to be down when I'm surrounded by so many good thoughts and prayers.
I will try to keep this updated as I'm able. I'm sure there'll be times when I'm just not feeling up to it, but know there will be good times, too.