In 2008 and 2009 I felt fatigued. My home treadmill rested, unused. In September 2009, my VUMC (VU Med Center) physician palpated my thyroid and detected no problem. Two months later, after a quick swipe of my throat, my gynecologist found that my thyroid was enlarged. We both notified my VUMC physician. He responded (recorded on a VUMC web interface for patients) with, effectively, “See you when you next come in.” I thought, “Oh, that’s good, no problem then. Maybe I had a cold.” But as time progressed, I pressed and pressed again for an appointment with my physician. Finally, in mid-May 2010, after five and a half months, I had an appointment. When my VUMC physician palpated my thyroid, he immediately detected the enlargement and ordered an ultrasound, which I had the same day.
Too Busy to Call: Hearing about my Thyroid Cancer from a Stranger
A few days later, out of the blue, some unknown person phoned to schedule an appointment for me with an endocrinologist and to advise me that I would probably need surgery. What! How could something treated so casually by my VUMC physician be serious? Was it really? If so, why had my physician not seen me sooner? Why had he himself not called? Maybe it was only another surgery opportunity.
My former VU physician always called me “Myrna”. I called him “Dr. Hock”. A trusting patient is like a small child who places her hand in the hand of a benevolent, caring adult. The asymmetry in use of titles reflects this relationship of trust and confidence; the patient wants to be confident that the physician is competent, knowledgeable, and will take care of her. But maybe the asymmetry is designed to keep the physician in a position of unquestioned superiority, above the patient. I started to call my former VUMC physician “Rich”. And he switched, immediately, to “Professor Wooders”. It was almost funny.
With all confidence in VUMC gone – this was the most disturbing but not my first negative experience – I searched for a specialist on the internet and in September 2010 saw Dr. Erik Alexander, at Brigham and Women’s (B&W) in Boston. Erik advised me to have a thyroidectomy and also recommended a surgeon, Dr. Francis Moore, also of B&W. Dr. Moore interviewed me on November 10th, 2010, and I had a total thyroidectomy on November 11th. 2010
The Diagnosis: Thyroid Cancer
B&W Pathology reported a tall cell papillary thyroid cancer with extrathyroidal extension (minimal). Not good. Tall cell thyroid cancer has an estimated mortality rate about 16 times that of papillary cancer generally. At least one study proposes that tall cell thyroid cancer can become anaplastic cancer, which is extremely aggressive. “Extrathyrodial extension” means that the cancer has extended beyond the thyroid capsule. With extrathyroidal extension, for individuals over forty-five thyroid cancer becomes Stage III. Whether the extrathyroidal extension occurred during VUMC’s delay is unknown, but I believe it is likely; my VUMC physician was unable to detect the enlargement of my thyroid in September 2009, but detected it immediately in May 2010. I complained to VUMC.
My treatment involved thyroid hormone withdrawal to raise my TSH (thyroid stimulating hormone) and a low-iodine diet lasting some weeks followed by ablation with radioactive iodine (RAI). “Glowies” are not allowed to fly so I had the RAI at VUMC. The endocrinologist at VUMC referred me to his nurse for instructions for the procedure. I was not following the VUMC standard procedure of injection of Thyrogen (a form of TSH) to raise TSH but instead hormone withdrawal. The instructions for my procedure were somewhat garbled. I sought and obtained clarification, but still it was anxiety-provoking.
In January 2011, three men in hospital garb brought my RAI pill into a small, cold room at VUMC where I had been waiting on a small, cold hard chair. Might they be like three co-authors, each of whom relies on the other two to catch any mistakes? Might something else have been garbled? But I was at VUMC to swallow the pill so I swallowed the pill.
A few days after swallowing the pill, standard procedure is to have a whole body scan to see where the RAI was soaked up. I lie in a cold machine in a cold room, while in the adjoining small room with a glass window and open door several hospital personal watched monitors, laughed and giggled. Was it funny? Most important, though, the RAI was soaked up where it was supposed to be – in the thyroid bed.
Surgery and Treatment Side Effects: Hyperthyoidism
After my surgery I had a sore throat. But the frequent sensation of clutching around my neck, the heaviness in my chest, my sometimes racing heart, and extreme fatigue seemed to only get worse. Last year, 2011, was a very bad year. I had MRIs, electrocardiograms, nuclear stress electrocardiograms, nuclear perfusion tests, CT scans with contrast, and blood tests for everything. But no explanations of my symptoms were offered. The symptoms intensified.
It now seems that I was suffering effects of hyperthyroidism. To suppress the activity of any remaining thyroid cells, thyroid cancer patients are prescribed high levels of levothyroxine (thyroid hormone). Individuals react differently to hyperthyroidism. I had multiple symptoms – fatigue, anxiety, palpitations, and an atrial fibrillation. (At the time of my atrial fibrillation I was in Sydney. My wonderful daughter-in-law came to the hospital. I was so glad that she was there to keep watch. By the way, there everyone – doctors, paramedics, nurses – called each other by their first names. I was “Mrs. Wooders”.) It might have helped to know that my symptoms were those of hyperthyroidism, not of the return of cancer. See http://www.myrnacatharsis.com/what-it-is-like/ for more of the story.
My first post-thyroidectomy exam was on August 20th, 2011 at B&W. There was no observable evidence of cancer. It was wonderful. The sun shone, the trees glistened, the streets of Boston were filled with happy, smiling people.
Last March we reduced my levothyroxine. And, as time passes, it becomes less and less likely that I will have any recurrence. Back in rural Alberta, I had learned to “never let them see you cry” so I tried to keep my thyroid cancer private. This spring I decided to go public; I let my colleagues in VU Economics know in an email and via my website: Myrna’s Catharsis. I found the Thyca website (Thyroid Cancer Survivors Association) and learned that my experience with extreme hyperthyroidism had been shared by others. See: What it is Like.)
In the spring of 2012, my tests looked very fine. My treadmill squawked a bit with its first use this summer, but now runs smoothly! Except for emotional scarring, I feel back to normal. If I have to increase my levothyroxine again, I will recognize symptoms of hyperthyroidism. If I have a recurrence, I think that it will not be for some years; I am hoping for forty. It may be useful for other thyroid cancer patients to know the symptoms that may occur as a result of their treatment, for persons in positions of power over others to better understand that thyroid cancer survivors may be hyper (or hypo) thyroid. And for physicians to recognize that not all thyroid cancers are slow growing so a patient with an enlarged thyroid should not be ignored.
Some fantastic reference books that I found along my journey:
Kenneth Ain, A specialist in thyroid cancer, author, with Sara Rosenthal, of The Complete Thyroid Handbook, which includes a discussion of various levels of care, including “standard community care” – what one might expect of their local GP.
Another excellent, more technical and specialized book is Thyroid Cancer: A Patient’s Guide By D. Van Nostrand, G. Bloom, L. Wartofsky
This article was posted previously on ThyroidChange and re-posted with permission.
From Myrna Wooders (www.myrnacatharsis.com)