I’m now 75 with sickle cell trait (hemoglobin hovers just under under 40%). Primary thyroid lymphoma (PTL) was an incidental finding from parathyroid surgery, where the surgeon gave me the option of an annual fine-needle aspiration or a right lobectomy. All was on the right side. A second surgery might be more complicated due to scar tissue, so at 74, I opted for the right lobectomy. A complication was encountered during surgery, where my recurrent laryngeal nerve was cemented to the thyroid, requiring a tedious dissection. Every doctor was surprised by the pathology report diagnosing PTL. My endocrinologist had left the practice in May and had given me names to call to make an appointment. It was almost a 10-month wait.
The PTL diagnosis was on May 20. I called to see if I could get bumped up because of the cancer diagnosis. I was told no and put on the wait list. From April to December 24, I piecemealed necessary labs for endocrine disorders from other doctors. I started R-CHOP chemo. My worst round was the first one. The chemo triggered a more serious heart condition that was initially disregarded because it wasn’t causing any issues.
I’ve now been diagnosed with apical hypertrophic cardiomyopathy with mid-ventricular obstruction and dynamic LVOT obstruction (often called a mixed obstructive phenotype). I have an appointment with a specialized cardiac unit in March. My symptoms for both are similar, so it’s difficult to tell if what’s happening is related to the chemo for PTL or hypertrophic cardiomyopathy. My follow-ups for PTL are between the endocrinologist and hematologist because there are no specific tests to identify relapse. I’ll have PET scans every four months for a while, along with bloodwork from both the endocrinologist and hematologist.
Lee
primary thyroid lymphoma (PTL)
