If you’ve read this blog for awhile, then you know 2008 was the year of SPTCL misdiagnoses. SPTCL, subcutaneous panniculitis-like T-cell lymphoma, was the rare and deadly lymphoma that kick-started my work as Every Patient’s Advocate. I was told I had it. In fact, I was told by two labs and an oncologist that I […]
An End Of the Year Revisit — SPTCL and Misdiagnosis Read More »
De-cancered — a good word, isn’t it? Look at these two faces — they look quite healthy, don’t you think? Well — they most certainly are — quite healthy, despite the chemo both faced prior to proving neither one had the cancer she was diagnosed with. What this photo doesn’t show, is the emotion behind
Two Healthy De-Cancered Patients Read More »
It’s been awhile since I’ve posted. In that time I’ve been the Gramma-sitter for my two little grandsons while their new baby sister arrived (welcome Kyla Shay!), buried my ex-husband’s cremains (he died last April), spoken to two groups of patients, recorded two radio shows and finished my book proposal. Enough excuses, you say! But
Daniel Was Misdiagnosed with SPTCL, Too Read More »
When I was (mis)diagnosed with SPTCL (subcutaneous panniculitis-like T-cell lyphoma) in 2004, I was handed a book, published in July 2004, that stated that “fewer than 100 cases have been reported in the last decade.” Yeah — really, really rare. Because that’s a book used by oncologists all over the world. Then, from Fall 2004
Daniel’s SPTCL Diagnosis is Suspect, Too Read More »
[To catch up on previous chapters of Heather’s story, link here (post #1) and here (post#2.)] Heather had her first oncology appointment today. She was lucky to get in so quickly after her primary care physician ditched her (that still makes me shudder) and she was prepared. Last week, after my post about her diagnosis
Heather, SPTCL, the Next Chapter – Hang on to Your Hat! Read More »
Here’s the good news: Heather does not have SPTCL. Here’s the bad news: Heather does have another type of T-cell lymphoma called CGD-TCL, cutaneous gamma-delta t-cell lymphoma. Also written with Greek letters: cutaneous ?/? T-cell lymphoma To say that both Heather and I were shocked is an understatement. If you read my post a few
Heather, SPTCL, Another Misdiagnosis and Doctors Who Should Not Practice Medicine Read More »
For those of you who have read my misdiagnosis story, you know that one of the ultimate heroes was the pathologist (I’ll call him Dr. H.) who helped me understand how the misdiagnosis happened. Even though he was one of the doctors responsible for getting it wrong, in the end, he didn’t turn away or
Misdiagnosis, a Visit to the Lab and One Last Point Read More »
Almost had a melt-down again last night…. but by the time the evening was over, it was almost a joyful experience! I received a note from a young woman named Heather, as follows: I would like to talk with you. I was diagnosed with SPTCL yesterday. I read your story and I feel exactly the
SPTCL Rears Its Ugly Head Again! Read More »
