Keeping y’all a-breast of my IBC diagnosis and treatment

“Never heard of it.” That’s what most people say when I tell them I was recently diagnosed with Inflammatory Breast Cancer or IBC…Neither had I until I began researching the possible causes of my swollen, discolored, indurated breast, and tender, enlarged lymph nodes. I’d first become aware that something strange was happening while practicing hot yoga. Lying on my stomach during the floor series had become slightly uncomfortable. I thought to myself, “I must be pressing too hard.” There was a small, firm spot on the top middle of my left breast that would “pinch” when I laid on it. When the area became discolored I assumed I’d bruised myself. Why I thought that, I really can’t say. I’m not some great “yoga warrior” who goes so hard in the Cobra position that it would be likely I’d bruise myself. I am, however, an expert at Shavasana. 😉 Fear, rationalization, and frankly, a naive hope the problem would just “resolve itself” seduced me into delay and denial. I was concerned, though. Why were the lymph nodes under my left arm so large and tender, I wondered? And, why were my shoulders so achy? And, man-oh-man, why was my left breast twice the size of its next door neighbor?! My initial self-diagnosis was that the implant was leaking.

I was born with a broken bosom…Well not “broken” exactly, but definitely deformed. I had had enough of looking at those rock-in-a-sock boobs resting on my stomach in the bathtub! So, in 2005 I had them transformed into “normal-looking” breasts, and then promptly forgot about them. They were no longer a “nuisance,” or source of discomfort. Until May, 2017.

But, the surgeon who first examined me said the implant was in tact, and that it appeared to be some type of mastitis. He prescribed an antibiotic, but referred me to a general surgeon at a nearby Oncology office. I was concerned when he said, “You need to see this general surgeon today. This isn’t an implant issue. I’ll reach him on his cell phone if you have any trouble scheduling an immediate appointment.” Oookkk…This sounds a little urgent, I thought. And, anyway, how the hell does a 57 year old, non-lactating woman even GET mastitis, I wondered?

He also sent me to a Radiology clinic for an ultrasound. During the exam a large “cyst” was observed. When the Radiologist came into the room she said, “You need to have an I & D (incision and drainage). Do you have a surgeon referral?” I replied, “Yes, Dr. _________.” She said, “Good. That’s who I would have referred you to. Do you want us to call him?” Again, I’m thinking, “These doctors are acting pretty concerned about this ‘mastitis.'” And, although I’m only 45-60 minutes from Los Angeles, driving into the city to larger facilities like Cedars or St John’s just didn’t seem imperative to me at the time. I thought, and the doctors I’d seen so far were obviously assuming, that I had some type of infection. That could be treated in my neck of the woods, I reasoned. So, I left the Radiology clinic, sat in my car, and called the general surgeon’s office. It was immediately clear they were expecting my call. “He’ll see you after his day is done, but be prepared to wait,” the front office scheduler warned. “Be here at 5 pm.”

At 7 pm, the general surgeon finally examined me. He then prepared me for an FNA, or fine needle aspiration. During the procedure he had me watch the ultrasound display on the right side of the table as he inserted a long needle into the side of my left breast. After injecting Lidocaine around the mass, which is definitely the worst part of any biopsy due to the sting, he inserted another long needle into the mass core and attempted to aspirate the expected fluid an “infection” would produce. “Hmm,” he said, “I can’t get anything.” He continued, “Do you see how the needle is there inside that area?” I could, indeed, see it. “There’s no fluid,” he said. “Then what is it?” I asked. “Its a mass,” he replied. “Oookkk. That’s weird,” I thought. Questions were racing through my mind, and I was blurting them out as quickly as they crossed gray matter. “How’d it get there? What Is inside of it if not fluid? How is it treated? Could it be related to my auto-immune condition, Hashimoto’s?” I ask in rapid fire. The surgeon replied, in order, “From your breast augmentation surgery, perhaps? A bacteria, most likely. Antibiotics. Could be related.” He told me to keep taking the Augmentin and “come back next week.”

Like most people who sense something just doesn’t ring true about their condition, I figured I’d go home and research this strange “mastitis.” I often joke that I got my M.D. on the internet, and think I can diagnose myself. “It’s probably Granulomatus Mastitis,” I reasoned. It seemed the most logical explanation to me. I’m OBVIOUSLY not lactating. I hadn’t traveled outside the country, been bitten by a bug, or scratched by a cat, and Granulomatus Mastitis is related to an auto-immune disorder. During my Google Med School Oncology crash course I discovered some literature on Inflammatory Breast Cancer. “Couldn’t be that,” I reasoned, “None of the doctors I’ve seen mentioned it as a possibility.”

So, I went about my life free of concern over the Big “C.” I practiced hot yoga, completed a 10 day course of Augmentin, returned to see the general surgeon, and was prescribed another round of antibiotics. I requested a different one to see if it worked better. He prescribed Bactrim this time, and said, “Come back next week.” So, I went back the following week complaining of “no change.” An ultrasound and mammogram were scheduled for the following week, and another round of Bactrim prescribed.

3 rounds of antibiotics by this point, and no change. That should have been a clue.

So, the 2nd ultrasound and 1st mammogram finally took place. “You’ve earned yourself a biopsy,” said the Radiologist after reviewing the images. Now I’m really frightened. “But, it feels like maybe it’s getting a little better,” I tell her. “It’s not,” she said matter-of-factly. “The mass in your breast and your lymph nodes haven’t changed. They’re the same.” A biopsy was scheduled for the following Wednesday.

Biopsies suck! You’re numbed up with Lydocaine, but those injections really hurt until the area gets numb. When it wears off…Ouch! And, the sound of the device is alarming. But, my Radiologist was fabulous! Competent, confident and a warm bedside manner. During the procedure I said, “I don’t think it’s cancer. I’ve seen some photos online and I don’t think it’s cancer.” The ultrasound tech darted her eyes over at the Radiologist. I thought, “Oh, shit! They think it could be cancer! Shit!” The Radiologist said, “Well, that’s what we’re trying to rule out.” When I was leaving she told me she would “hound” the pathology lab for preliminary results so I wasn’t left hanging all weeekend. She said she’d have a preliminary report the very next day.

On Thursday, my Radiologist called with the bad news. Inflammatory Breast Cancer. It’s a bad one; rare and aggressive. She gave me the number directly into the Radiology department where she’d be working til midnight, and told me to call her for “ANYTHING.” I called her later that night with a number of questions and some much needed reassurance. Then, I spent the rest of the weekend crying, praying, informing my family and friends, and, getting a crash course on IBC. It’s amazing how fast you can digest complex information when your life depends on it.

It was a tough weekend. But, the outpouring of love from family and friends comforted me. My brother, Patrick, flew in from Austin, Texas, to spend that weekend with me. At the prompting of my sister, Jenny, I filled out the MD Anderson new patient form online. Sister, Sally Jo, insisted I stay at her apartment, which is just 2.9 miles from the Houston Medical Center. Through all my research on IBC, I had discovered that the number 1 hospital in the country for cancer care, MD Anderson, was also home to an IBC clinic where women from all over the world travel to seek care. The general surgeon’s office and Radiologist had provided referrals to a local Oncologist with the UCLA system, with whom I also scheduled an appointment. Getting treatment quickly for IBC is critically important. While I liked the UCLA Oncologist, my visit to MD Anderson for a 2nd opinion made it immediately clear I was in the right place for the most expert care of IBC.

So, here I am…
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