The week the world shut down in March of 2020, I discovered a lump in my left breast. I gave it a few days to see if it was just a cyst to go away on its own, but it began to grow bigger. Within days it went from a pea sized lump to a quarter sized very painful lump. I got an appointment with my OB who quickly referred me to over to Smilow Cancer Hospital just to be safe with her reassuring me. The hospital my mother died in after a long eight-year cancer battle. Pandemic restrictions were rolling in, and I found myself newly masked sitting alone in a pink hospital smock waiting on my very first mammogram at thirty years old. I was terrified. After my mammogram, they immediately wanted me to get an ultrasound. Without hesitation they told me I needed a biopsy and suggested swiftly right then and there. I agreed of course, and up on the table I went. About six hospital staff members rushed into my biopsy room all at once. I was numbed up as they took three different biopsies, deeper each time. I laid on my side shaking with one nurse holding my shoulder. The room was silent. It felt like it was never going to end. I must have been the color of the sheets because my nurses kept asking me if I was okay. We were all thinking the same thing. When I walked out of the room, I pressed my back to the cool hallway wall to try to fathom what was going on, and completely broke down sobbing into my hands, soaking my mask. Two of the nurses just kept apologizing to me, “I’m so sorry I can’t hug you; we’re not allowed to with the Covid restrictions.” I just kept saying to them, “I cannot have cancer. I’m a solo parent. My son is only four. I can't make him an orphan.” They sent me out with aftercare instructions in a little brown bag and told me that I’d get my results in about two weeks.
I was convinced I had breast cancer. Each day that went by, I started to get more symptoms. I was in so much pain, my breast felt like it was on fire at all times of the day. My hair started to fall out. I was exhausted. Blood would just pour out of my biopsy sites that refused to ever close. I finally got a call three weeks later, first from my OB with a sigh of relief saying, “It’s benign, you’re going to be ok. I wanted to be the first one to tell you.” Next, I received a call from Smilow where the doctor said the same and gave me a rare diagnosis of granulomatous mastitis. I fell on my knees after that phone call and howled until I didn’t have another drop of tear left in me. I hadn’t breast fed since my son was two and I couldn’t understand how I got mastitis this long after. But the kind of mastitis I had was not that type. It was an inflammatory type that they’re not sure how it begins. They detected no infections from any of my biopsies and referred me to a breast specialist to seek treatment and what my options would be. Later that night, while reading the doctor report they released into my E-chart with my biopsy photos, they also all believed that what they biopsied was breast cancer. GM mimics cancer. The way it looks, the way it affects your body. My specialist appointment was a month out and during that time I started to develop more lumps within that breast, and they began bursting through my skin. Blood and tissue were exposed through these tiny little holes. I had to stuff my bra full of gauze and bandages, that would stick to my skin. When I finally saw this doctor, he gave me no relief. He prescribed me a round of steroids and said call me in two weeks. Within two days, I woke up and I couldn’t get out of bed. I had developed rapid onset arthritis in all my joints, and I was limping to get around. That first morning I rolled out of bed and crawled across my bedroom floor to get to my son's room. I also developed these red welts all over my legs, that looked like I got pelted with bb gun bullets. When I called him, I tried to convince him after researching the very few GM clinical studies that this seemed to be a symptom of it. He brushed me off and referred me to a rheumatologist. I finally convinced his PA that this was what was causing the rapid arthritis and he upped my steroid dose. Nothing helped me. I called his PA crying telling her how badly I was in pain and that something wasn’t right. My breast was basically exploding through my skin, and when I finally got to see him again, he told me, “This is something you’re just going to have to live with. There’s nothing I can do. Just let it run it’s course.” Let’s just say for kindness’ sake, I made the choice to look for a different doctor. About five doctors later, I finally found a breast specialist surgeon and a plastic surgeon who would listen to me. After a few more months and rounds of steroids and antibiotics to try to wipe this thing out, my breast surgeon looked at me and said, “Kellie tell me what you need me to do, and I will support your decision.” Both her and my plastic surgeon gave me a few options, being a lumpectomy, more medication which one included an oral chemotherapy, leaving it alone to see what happens, or get a DIEP FLAP LAT mastectomy. I thought about it for two days. When I called her and told her my decision to get a mastectomy, she agreed with me immediately and told me she’d call my plastic surgeon to let him know. I got a call from him shortly after. He wanted to clarify this was my concrete decision. Being so young, they wanted to try everything they could before resulting to a mastectomy. In my heart, I knew this was the only thing that was going to get me better. GM is an immune disorder, and there is always a chance it could flare up and come back. I could not mentally or physically take that chance. I told them both this was my final decision, so we got things scheduled. Initially, in October of 2020 I would have my DIEP FLAP LAT mastectomy and expanders would be placed, which means in short that my skin on my breast was beyond repair and portions of it would also need to be removed. My surgeon took my own skin from my LAT and transferred it to my breast after the mastectomy took place. My second reconstruction/ exchange surgery would be about three months later, to give me time to heal without any infection and to get weekly expander fills. I’m going to make my story a few parts because it’s a long one, so in my next blog post I will go over my actual mastectomy surgery along with my recovery experience. I’m always an e-mail away!
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