thyca

Personal Story: My Thyroid Cancer

4952 views

I am a Professor of Economics at Vanderbilt University, VU. I teach and do research. My life is my work and my family. Inside me there is Myrna Holtz, a kid from very humble beginnings on a small farm in rural Alberta, a nerd who loved math puzzles and books but had few of either. Through my own research and through helping others with theirs, I want to contribute to our ability to understand social and economic interaction. I want to be close to my family and now to increase awareness of thyroid cancer and its potential effects. Here is my story.

Some History

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.

Post-Surgery Treatment

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.

All Clear

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)

My Thyroid Cancer Learning Experience

2755 views

Hi. My name is Melissa and I am a thyca survivor. My story begins one day when I was swimming in the pool at the gym and out of nowhere I noticed that I was starting to have a hard time breathing. It was different than hyperventilating because I was aware of how that felt; it was more like something was constricting my air. Mind you, at that point, I had been working out for years and had never had a problem of this nature. So when I started noticing it and it continued to get worse, I decided to make an appointment with my PCP who basically said it was allergies, gave me a prescription for allergies and sent me on my way. However, that didn’t help and I was worried that it was something else. Since I did not need a referral for my insurance, I made an appointment with an ENT that a friend of mine goes to. All this was in March of 2005. The ENT had X-rays of my sinuses done and ordered CAT scans. While reviewing the CAT scans of my sinuses, he was performing a standard a check and said “Did you know that you have a lump on your thyroid?”

That question led to a multitude of tests from thyroid ultrasound to Fine Needle Aspiration (FNA) sonogram guided biopsy and eventually to a partial thyroidectomy, removing the left side of my thyroid on Friday, August 12, 2005. The frozen nodule biopsy did not show signs of cancer. My family and I were so relieved and the ENT told my family, “No wonder she was having trouble breathing; there was a tumor almost the size of a tennis ball pressing against her wind pipe!”

Well, I was relieved but don’t remember much from the day of surgery because the anesthesia hit me hard, and I never woke up until 10:00 that night at which time I wanted food. The cafeteria was closed, but they were able to get me chicken broth and crackers. Yuck. My parathyroid glands were fine since I had an excellent surgeon, so the next day I was ready to go home for recovery.

By Monday, the doctor’s office tracked me down at my parents’ house where I had gone for recovery to get me in to see the doctor ASAP. I remember hanging up the phone and my dad asked me what was wrong – he hugged me and I cried.

So, by Wednesday that week, we drove back to Erie to meet with my ENT surgeon who proceeded to tell me that the tumor was a 4 cm follicular carcinoma mass which he said was encapsulated and proceeded to give me my options of leaving the remainder of the thyroid and having RAI (Radiation Ablation Iodine) or having it removed then having RAI. I chose to have it removed. By Friday, one week later, I was having a second surgery to remove the remainder of my thyroid. I kept joking with my family that the incision from the first surgery was like a zipper that they were going to just unzip and remove the rest. Again, I had to spend the night in the hospital and the next day I was at the nurse’s station begging to go home. Hospital stays are not my favorite thing. My calcium levels were good, my parathyroid glands were holding their own so I was permitted to go back to my parents’ home in Clarion for recovery and return to Erie in a week for suture removal and surgery follow up. From what I remember, since it’s been seven years, my ENT put me on Cytomel after my surgery.  I don’t remember the dose.

The follow-up appointment day was less tense than the week before since the major part, the surgeries, were already done. We received the results of the second pathology and it was a good decision to go ahead with the second surgery because the right side showed a focus of follicular variant papillary carcinoma.  The time frame before surgeries and RAI seemed like forever. I had my RAI in November of 2005. I went back to work after four weeks, which ended up being too stressful for me. As a result, I had to consult with my doctor and have that changed to part time for a couple weeks to let my body adjust to having no thyroid and coping in a stressful work environment. I suffered extreme fatigue and had a hard time focusing at work.

In the meantime, my ENT set me up with RAI and had me start Synthroid after RAI.

RAI was a challenge because of hormone withdrawal and having NO thyroid and trying to push myself everyday to still work full-time. This was tough, but I managed to function. They administered 168.8Mcis and sent me on my way home for isolation for a week. Not fun. I was fortunate that my only side effect at the time was fatigue and a horrible metallic taste that lasted for quite a while. A few months later, I ended up with salivary gland issues. Also not fun.

After my isolation was up, I went back to work full-time. I don’t know how I held up but I managed to function. Adrenaline kept me going most days; then I would go home and crash hard.

I did not have an endo in the picture until 2006. I do not remember the exact date. This began TSH suppression and years of what I refer to as “thyroid crap.” I did not tolerate TSH suppression well and had many side effects that I counteracted with various prescriptions. The first couple years were struggles and worries of whether or not the cancer was gone. After five scans and clean ultra-sounds, I remain cancer-free. Thank goodness!

However, the struggles were not just with TSH suppression. My first scan was administered with hormone withdrawal and it was horrible. I managed to keep working full-time up until I had to take the radioactive iodine pill for the scan. Then I took a few days off work because of the I-131 scan dose, not to mention the fact that I was extremely run down.  After that, I went back to work full-time and waited to hear from the doctor’s office about when I could go back on my Synthroid. One week went by; no call. So I began calling and was told the CRNP[1] was on vacation. The endo’s office was going through a move at that time also, so it was chaos for their office staff. I gave up and put myself back on my Synthroid. I had to function.

Somewhere in this craziness, I found a flyer at my endocrinologist’s office on thyca from the Thyroid Cancer Survivors’ Association. I joined their Yahoo support group to help me through the challenges I faced. I have since became a member of this association so that I can help others as they have helped me.

Seven years later, and five clean scans and many clean ultrasounds: I am ready to take control of my life again. I am very sensitive to Synthroid changes and TSH suppression.  Now I am hypothyroid for no apparent reason and have an endo who doesn’t seem to care about getting to the root of the cause. His answer is to keep increasing my Synthroid until the TSH goes back down and the Free T4 goes up. He says that I am converting enough Free T3 and refuses to put me on a T3 medication. Also, he does not even consider any other regimens such as NDT. Endocrinologists like this are the true reason that we need ThyroidChange.

I encourage everyone to get their necks checked frequently. If you have an annual physical, have your doctor check it then.

As I sit and write my story, I realize that I haven’t even touched on many of the issues that I would have liked to as it would probably end up being way too long.

What I would like for you to take from this story, is remember that you know your body. If something does not seem right, then get it checked out.

Don’t settle – it’s your body and your health. Be your own advocate!

Although my situation is still a work in progress, I now possess more knowledge to continue the fight against cancer and I am now against what I feel is inadequate thyroid treatment. Thank you to ThyCaThyroid Sexy, Half Pint, ThyroidChange, Stop the Thyroid Madness and all other individuals and groups that have helped me.

As I work to remedy my own struggles, I also thrive to help others through theirs.

Good luck in your journeys and best of health!


[1] Certified Registered Nurse Practitioner

This article was posted previously on ThyroidChange and re-posted with permission.