A Story of Misdiagnosis

How a wrong diagnosis became a source of motivation

This story is about 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 subcutaneous 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!

A few days later, I had dinner with some business friends, none of whom knew anything about my diagnosis. A few glasses of wine loosened my lips -- I shared my diagnosis with them and, of course, they were floored. But one friend was more than floored. She contacted an oncologist friend of hers and called me the next day to tell me her friend was currently treating someone with SPTCL and would make time for me if I wanted to make an appointment.

That small tidbit of good news lit a fire under me. I made an appointment to see her doctor friend a week later, then contacted my original oncologist for copies of my records to take with me. Records in hand, I began to search the Internet for explanations of every word I didn't understand to see if I could learn more.

If I had to pinpoint an exact moment when this patient empowerment and advocacy mission began, that moment would be it.

The lab results were not as advertised. In fact, neither report confirmed a diagnosis for SPTCL, exactly. One of them said “most suspicious for,” and the other said, “most consistent with.” Neither one of them was sure. Yet another clue to this mysterious malady which I considered to be unsupported was found.

Further, the second lab report stated that the lump biopsy was being sent for still another test called “clonality” — yet no results of that test had been included in the records faxed to me. I wondered what clonality was, and why those results weren't included in my records.

I contacted my former oncologist’s office and strangely, they had no record of the clonality test. So, while they scrambled to find it, I looked up exactly what this test is.

Clonality, it turns out, determines if all abnormal cells are coming from a single clone. Simply put, if positive, the test is strongly suggestive of cancer, such as lymphoma.

When I finally got a copy of that last lab report, I learned that it was negative.

As I waited to see my new doctor, I began deciphering the results. I looked up various stains (remember gentian violet from high school biology?), Greek letters and medical terms. In tandem with the clonality results, it became very clear to me that I did not have cancer, no matter what those labs and oncologists thought.

By the time I went for my visit, I was empowered and fired up. I was quite sure of my results, and I shared with him everything I had learned. He examined me, pulled a few books off his shelves, and helped me learn even more. From learning that there were fewer than 100 reported cases of SPTCL in the previous decade to being told that even if I did have SPTCL, it would be better treated with radiation than chemo, I was feeling even better by the minute.

Then my new doctor recommended that my biopsy be sent to a specialist at the National Institutes of Health, part of the U.S. government, for review. Three weeks later, in late September, I was given the confirmation that, in fact, I did not have cancer. The corrected diagnosis was for panniculitis, an inflammation of fat cells. It has not caused a single problem since then.

Relief? Certainly. But my first reaction was more like anger.

After all, had I undergone chemo and survived, they would have told me I had been cured of a disease I never had. And just as frightening, I found cases online of people who had been diagnosed with SPTCL and treated with chemo who had died during the treatment; autopsies had shown they never had SPTCL to begin with. Lawsuits had been won.

The experience changed my life in many ways. For one thing, I have always believed everything happens for a reason. So this misdiagnosis forced me to question - what on earth could the reason be for such an experience?

That led me to the most important thing I have done in my life. In 2006, I changed careers to begin helping others help themselves navigate the American healthcare maze. I write the patient empowerment articles here at About.com. I have written four books. I speak across the country and in Canada on patient empowerment topics.And I founded and run an organization for independent, private patient advocates - people who are out there helping other people - like you - every day to navigate the healthcare system to get what they need. (Find more about all these activities in my bio.)

It turns out that the worst thing that ever happened to me (the misdiagnosis) was, in the long run, the best thing that ever happened to me, too.

Knowledge is a powerful thing, and even more so when shared.

........ Update: 2011.........

In Fall 2010, I read the book, The Immortal Life of Henrietta Lacks, by Rebecca Skloot, which made me begin wondering what had happened to my "lump" - the tumor removed from me in 2004 that had been misdiagnosed.

And what I learned! From storage to profit-making, there is a lot going on with the pieces of our bodies that are removed from us. Learn more here about what happens to blood, cells and other removed body specimens in general, then read the story about what I learned about my own tumor and where it is today.

........ Update: 2013.........

Nine years after my original lump and its resulting misdiagnosis, a new lump appeared...

I chronicled the journey because I realized early on that being an empowered and emboldened patient changed the entire experience.

Join me in the journey! Nine Years Later - a Second Lump Proves that Empowerment Changes Everything

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