Not a week goes by that someone doesn’t ask me about the event that changed my life, and started my advocacy work. So here’s the expanded version, probably much more than you wanted to know!
I’m a 50+ year-old former teacher, turned self-employed marketing consultant and now patient consumerism advocate, who enjoys my family, golf, travel and a host of other activities.
In late June 2004, I found a golf-ball sized lump on my torso. It didn’t hurt — it was just there.
So I contacted my family doctor, went to see him the next day, 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 — so I contacted the surgeon’s office and was told they didn’t have the results back yet. The 4th 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 — a lymphoma — 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. I was so scared! In the meantime, as anyone does these days, I looked all over 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 everyone died. And died fast. (*see update below) The longest anyone with SPTCL seemed to live was a couple of years, regardless of whether they received any treatment. And here I was with that disease — and scared to death.
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. No sign of lymphoma. And I had no symptoms to speak of — at least in my estimation. OK, so I had night sweats and hot flashes, but hey! I was a 52 year old woman! Don’t we all? But Dr. S insisted that those were symptoms of lymphoma and I needed to think about chemotherapy — and soon.
Without chemo, he told me, I would be dead before Christmas.
I asked about the possibility that the lab results were wrong. No — not a chance. Two labs had independently confirmed the results, I was told, and the pressure began to mount to begin chemotherapy.
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 and 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, Barb, was more than floored. She contacted an oncologist friend of hers and called me the next day to tell me her friend, Dr. Jeffrey Kirchner, was currently treating someone with SPTCL and would see me if I wanted to make an appointment!
That small tidbit of good news lit a fire under me. I made an appointment with Dr. K to see him a week later, then contacted Dr. S, the oncologist, for copies of my records to take with me. Records in hand, I began to google every word I didn’t understand to see if I could learn more.
If I had to pinpoint an exact moment when this patient advocacy mission began, that moment would be it.
The lab results were NOT as advertised. In fact, neither diagnosis was for SPTCL, exactly. One of them said “most suspicious for,” and the other said, “most consistent with.” Neither one of them was sure! And yet another clue to this mysterious malady which was so far 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. Hmmm…. what was clonality, and where were those results? I contacted the oncologist’s office and lo and behold — they didn’t know where that test result was. So, while they scrambled to find it, I looked up the word “clonality.”
Clonality, it turns out, describes whether cells are cloning themselves — multiplying. And their tendency to do so makes all the difference in a cancer diagnosis. Benign cells don’t usually multiply — cancerous cells do.
They finally produced a copy of the clonality results — And my cells weren’t cloning themselves.
As I waited to see Dr. Kirchner, I began deciphering the lab results. I looked up various stains (remember gentian violet from high school biology?) and results, and 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 saw Dr. Kirchner, I was empowered, and fired up. I was quite sure of my results, and shared with him everything I had. He examined me, and pulled a few books off his shelves, and helped me learn even more. From learning that SPTCL had fewer than 100 cases reported 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 Dr. Kirchner recommended my biopsy could be sent to a specialist, Dr. Elaine Jaffe, at the National Institutes of Health, part of the US government, for review. Three weeks later, in late September, I was given the confirmation that, in fact, I had no cancer. The corrected diagnosis was for panniculitis which is an inflammation of fat cells. It has not caused a single problem since then.
Relief? Certainly. But my first reaction was more like anger. At the end, I accused Dr. H of insisting I begin chemo because it was the only way he could make money from me. I stand by my accusation. I also fault both him and Dr. S for never following up on the clonality test which was so pivotal in getting the right diagnosis. And the labs — did they not realize that they were, in effect, sentencing me to death?
Afterall, 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 and chemo treated for SPTCL who had died during the treatment — and autopsies had shown they never had SPTCL to begin with. Lawsuits had been won.
Lest you think I harbor only ill-will, I do appreciate the doctors who did what they should do. My family doctor, the surgeon, Dr. Jaffe from the NIH, and most especially Dr. Kirchner who was willing to partner with me — they were very helpful.
To this day, I don’t believe those doctors who were involved in the misdiagnosis aspects of my treatment understand the long-term ramifications of this kind of misdiagnosis. Being told you will die, when you won’t, is cruel. I suffered, and so did my loved ones. To this day, I suffer from post-traumatic stress when I see certain movies, or read or watch something related to someone who has died from cancer, especially around Christmas. There but for the grace of God….
In the end, one of the lab pathologists told me that he was taught in med school that he should expect there would be errors, and that he would rather err on the side of making sure someone got treatment they didn’t need, rather than not getting life-saving treatment. Ok. I’ll buy that. But it still doesn’t make it better.
I’m a spiritual person. I believe everything happens for a reason. And so I am here today advocating for others — an outcome from a horrible experience that can result in good for others. I write, speak, and look for ways patients, their caregivers, advocates and providers can collaborate to make the system work more succesfully for all.
I’m doing my best to turn those misdiagnosis lemons into empowerment lemonade. Granted, my anger still creeps into my work on occasion.
As it turns out, that misdiagnosis was the worst thing that ever happened to me – and now it turns out it was the best thing, too. The real blessing is that I now know why I was put on this earth. A pastor friend of mine calls it “Trisha’s Calling.”
In any case, I hope you benefit from this work — and I’d love to hear from you if you do.