I Diagnosed Myself

These three women listened to their bodies, trusted their instincts, researched like crazy, and didn't back down, even when doctors told them they had nothing to worry about.
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Melissa Kishegyi

It started with swelling and tenderness in my left breast. My mom and my sweet firefighter husband, Stephan, reassured me it was probably nothing. But I was thinking, "I've got inflammatory breast cancer and I'm going to die." IBC was the first thing that entered my mind -- I made an instant connection.

This was May 2010, and in March I'd read Kristin Hannah's novel Firefly Lane, in which a character gets this rare but aggressive cancer. I'd never heard of IBC. But I must have taken the author's postscript to heart. She urged women to add IBC warning signs to the list of symptoms to watch for and not be afraid to ask questions if something felt wrong. Now something did.

I'm generally not someone who follows her gut. I was a certified public accountant before becoming a sixth-grade teacher, and I'm the analytical type. If the two people I trust most think I'm overreacting, I normally figure they must be right. But deep down, the book and my online research convinced me I had reasons to be concerned. IBC dimples the skin of the breast like an orange, and that's what mine looked like in spots. It tends to strike younger women; I was 34. It discolors the breast with patches of red, pink, or purple, and I had a barely there red tinge that my mom and Stephan couldn't see. I knew my body and nothing anybody said could calm my fears.

Because I was 16 weeks pregnant, I went to my ob-gyn, who ordered a let's-take-a-look ultrasound rather than risk exposing the baby to mammogram X-rays. I heard one of the staff members say there was a swollen lymph node near the collarbone and I panicked.

Because of the book I knew that a swollen lymph node in this spot was a signature symptom. And what I was reading online was horrible: Everything made it sound like IBC can't be treated and you're a goner if you have it. I don't like questioning professionals but I couldn't help it. I said, "I read this book, and I really think this is what I have."

The ultrasound doctor seemed interested at least. But the breast surgeon had "hormonal pregnant lady alert" written all over his face. They both thought the swollen nodes meant an infection -- especially when the redness, swelling, and tenderness seemed to improve with antibiotics. But I was freaking out. The worst part of this ordeal was being absolutely convinced I had a fatal disease while my family, friends, coworkers, and doctors -- anybody who could help me -- thought I was crazy.

Stephan did what he could to put my mind at ease. He called the surgeon's office several times to tell the doctors I was so upset I couldn't eat, sleep, or function. On one call, I got on with a doctor myself. "I know I'm right and no one is listening to me," I said. "I need something tangible." I pushed so hard that they eventually suggested a biopsy of the area that was most dimpled, just to convince me I didn't have IBC. When the doctor called with the results, his first words were, "We're sorry."

Things changed completely when I met my amazing oncologist. He saw the dimpling in my skin and knew in one second I had IBC. "I know what this is, I know how to treat it, and we'll start right away," he said. For the first time I felt there was hope. He said that chemo actually works well against this cancer, and its molecules are too big to cross the placenta, so it wouldn't harm the baby. I was almost happy to start chemo because it meant something could be done. While sitting in the infusion center with a muffin and my favorite magazines, I tried to think of my treatments as a relaxing break. The oncologist paced the doses so they were completed just in time for my healthy baby boy, Charlie, to be born at full term.

After the birth I had a different kind of chemo and a double mastectomy -- I just wanted the cancer out of me. Tests showed the cancer hadn't spread; the oncologist was amazed and said it was the best possible outcome. But I wasn't surprised: The part of me that intuitively knew I had IBC also knew it was gone.

The Facts: Inflammatory Breast Cancer

What it is: An aggressive form of breast cancer in which cancer cells block lymph vessels in the skin of the breast. It accounts for 1 to 5 percent of all breast cancers.

Symptoms: Tenderness, swelling, and swatches of red, pink, or purple on the skin. Fluid buildup under the skin can cause pits and ridges.

Treatment: In most cases, chemotherapy to shrink the tumor followed by a mastectomy to remove it and radiation to prevent it from returning.

Info: IBC Foundation, eraseibc.com

Continued on page 2:  Ann Harris

 

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