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A Story of Misdiagnosis

How a wrong diagnosis became a source of motivation

By

Updated June 25, 2014

While personal stories may not be the norm on About.com, this one is very relevant to the information you'll find on this website. It's my personal misdiagnosis story and an explanation for why I do the work I do. If it wasn't for my receiving a wrong diagnosis, I would not be your Guide to Patient Empowerment.

In late June 2004, I found a golf ball-sized lump on my torso. It didn't hurt - it was just there.

I immediately made an appointment with my family doctor and, because he had no idea what it was, he sent me to a surgeon who removed it that afternoon. "We'll let you know when we hear back from the lab," was the surgeon's departing comment as I pulled my shirt back on and got ready to go home.

A week later, no word. I contacted the surgeon's office and was told the results weren't back yet. The fourth of July holiday had caused the delay, so I waited.

Another week later, the surgeon finally called me with my lab results. "You have a very rare cancer called subcutaneous panniculitis-like T-cell lymphoma," he told me.

And then he dropped a second bomb. I was told that the reason the lab results took so long was because the outcome was so rare -- that a second lab had been called for a second opinion. "Two labs have independently confirmed these results," I was told. "We'll make an oncology appointment for you as soon as possible."

"As soon as possible" took more than two weeks, not unusual as I'm sure you know if you've ever needed an oncology appointment. I immediately began searching the Internet for information about subcuteneous panniculitis-like T-cell lymphoma (SPTCL). It was hard to find anything at all because, as the surgeon had told me, it's very rare.

What I did learn was that it was a terminal, fast-acting disease. (I understand a treatment protocol at the Moffitt Cancer Center has more recently been developed that extends life for up to two years.) In 2004, the longest anyone with SPTCL seemed to live was a couple of years, regardless of whether or not they received any treatment.

When I finally saw the oncologist, he was very discouraging. Dr. S, I'll call him, sent me for blood work and a CT scan, both of which came back negative for any abnormalities. Yet he insisted the lab work trumped the lack of other evidence.

It just didn't make sense to me. I felt fine. I was playing golf once or twice a week. I just knew pieces were missing.

When I pushed him for more information, he cited my additional symptoms -- hot flashes and night sweats. "But I'm 52!," I admonished. "At 52 all women have night sweats and hot flashes!"

He insisted my symptoms were unrelated to menopause. Instead, he said, they were symptoms of my lymphoma. Without chemo, he told me, I would be dead by the end of the year.

I asked about the possibility that the lab results were wrong. No -- not a chance, he said. Two labs had independently confirmed the results. The pressure to start chemotherapy began to mount.

Besides my family and a few close friends, I didn't share the news with anyone else. My business was already suffering -- being self-employed and having lousy health insurance meant that my diagnosis had now become expensive, too. I was spending way too much time researching, fretting, and paying for doctor visits and tests that were only marginally covered by my insurance. Life, what was left of it, was going down the tubes -- fast.

By then it was August, and I had a decision to make. Chemo, or no chemo? I learned that Dr. S had taken sick, and his partner Dr. H. was taking over my case. Dr. H asked me why I was waiting to begin chemo, and I told him I was trying to find another oncologist for a second opinion. There were too many question marks. His reply to me makes me shudder to this day, "What you have is so rare, no one will know anymore about it than I do."

If anything compelled me to begin digging deeper, that was it. Now I was "sick" AND angry!

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