www.myrnawooders.com

This is my professional page.

 

September 28, 2012. I have joined Thyroidchange, an advocacy group to increase awareness and improve the care of thryoid dysfunction.  The group invited me to write a blog; here it is. Much is an overlap with what is on these pages.  A yet shorter invited version appears at http://www.hormonesmatter.com/personal-story-thyroid-cancer/  My most popular page is this one and "What it is like."

 

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April 18, 2012 (revised)

Catharsis

Myrna Wooders

Professor of Economics, Vanderbilt University

 

This is part of a catharsis and a personal history. It has been hard for me to talk about it since it does not conform to my desired image as a strong person, indomitable, fearless. It’s probably been harmful for me to be so inhibited. I need to get over it. So I am writing.

 

Let me start by saying that in November 2012 it will be two years since I had my thyroid removed. While the frequency of reoccurrence of thyroid cancer in the first two years after a thyroidectomy is 25%, the reoccurrence rate decreases over time. It has been known for thyroid cancer to reoccur 45 years after treatment for thyroid cancer; I’m hoping for that! For me, all indications are currently good so it seems likely that the cancer is finished, gone with my thyroidectomy and subsequent therapy.

 

There is a history that has made thyroid cancer more difficult for me. In September 2009 my Vanderbilt University Medical Center (VUMC) physician palpated my thyroid and detected no problem. In November 2009 my Baptist Hospital gynecologist, after a quick swipe of my throat, told me that I had an enlarged thyroid and advised me to notify my VUMC physician. I did, and so did my gynecologist. My VUMC physician essentially said (recorded on MyHealthatVanderbilt), “see you when you next come in”. I thought “Oh, that’s good, no problem then. Maybe I need more iodine or something. Or have a cold.” I did not know anything about thyroids. Besides, no one in my family dies of cancer; heart disease gets us first. I did not know that a thyroid could get cancer. But of course I had a bit of anxiety and as time progressed I pressed and pressed again for an appointment. Finally, in mid-May 2010, after five and a half months, I managed to get an appointment with my VUMC physician. And reminded him about my thyroid. This time, when he palpated my thyroid, he quickly detected that my thyroid was enlarged and ordered an ultrasound, which I had the same day.

 

A few days later I received a phone call from someone – not my VUMC physician, maybe a nurse -- to schedule an appointment with an endocrinologist and advise me that I would probably need surgery. I was astonished! How could something treated so casually by my VUMC physician be serious? What happened? Was it really serious? If so, why had my physician not seen me sooner? Why had my physician himself not called if there was a really serious issue? Maybe it was only another surgery opportunity.

 

My former VU physician, as most physicians that I’ve ever met, always called me “Myrna”. I used to call him “Dr. Hock”. A trusting patient is like a small child who places her hand in the hand of her physician, a benevolent, caring adult, who towers above her. She deeply wants to trust him. The asymmetry in use of titles reflects this relationship of trust and also one of confidence; the patient is confident that the physician is competent, knowledgeable, and will take care of her. Or maybe the asymmetry is designed to keep the physician in a position of superiority, above the patient, so he is not questioned. I started to call my former VUMC physician “Rich”. And he switched, immediately, to “Professor Wooders”. It was almost funny.

 

No longer trusting Rich and VUMC, I searched for a specialist on the internet and in September 2010 I saw an endocrinologist at Brigham and Women’s (B&W) hospital in Boston. He advised me to have a thyroidectomy and also recommended a surgeon, Dr. Francis Moore, also of B&W, a specialist in thyroid surgery. Shortly after that I started to experience a clutching in my throat and heaviness in my chest, along with extreme fatigue. Was I worried! After a number of emails and phone calls, I convinced Dr. Moore to schedule an interview for me on November 10th, 2010, and surgery on November 11th. (Normally, Dr. Moore does not evaluate a patient on one day and perform surgery on the next. If the patient turns out to be unready for surgery, it results in wasted time for the surgery theatre. I recall that on the 10th Dr. Moore took me to meet his assistant and told her that I was “as advertised" and we were ready for surgery.) In November, after my surgery, I was able to fly from Boston to Tucson and spend part of my recovery time, including the Thanksgiving break, with my family.

 

The pathology report showed that I had a tall cell papillary thyroid cancer with extrathyroidal extension (minimal). Both “tall cell” and “extrathyroidal extension" are not good. According to highly regarded experts on thyroid cancer at major hospitals and universities in the US (but not VUMC, apparently) tall cell thyroid cancer is a more aggressive version of papillary thyroid cancer, with an estimated mortality rate of 16 times that of papillary cancer generally. “Extrathyrodial extension” means that the cancer has extended beyond the thyroid capsule. With extrathyroidal extension, some staging systems upgrade tall cell thyroid cancer from Stage I to Stage III. At least one study proposes that tall cell thyroid cancer can become anaplastic cancer; if this happened, I would stop teaching and concentrate on getting my affairs in order. There are not enough medical data to determine whether the extrathyroidal extension was a result of VUMC’s delay (the “alleged delay,” according to the VU Office of Risk Management, even though it is on record at MyHealthatVanderbilt) but I believe that it is possible. I think that it is, in fact, likely since my VUMC physician was unable to detect the enlargement of my thyroid in September 2009 but had no problem doing so in May 2010.

 

Because of the cancer, I had treatment with radioactive iodine (RAI). My treatment involved thyroid hormone withdrawal and a low iodine diet lasting some weeks. Obviously, RAI is radioactive so it would have been difficult to have the treatment in Boston. (The people at the Boston W Hotel are extremely kind, but it was not advised to stay at a hotel after RAI and I am sure no airline would let me fly.) Although assured by other physicians that RAI therapy is a completely standard treatment and the dosage would be correct, I was worried. I had to see a VUMC endocrinologist (Lee, who also began by using my first name but then quickly switched to Professor Wooders when I started to call him Lee) to arrange the RAI treatment. That was worrisome, for several reasons. I was not following the typical VUMC treatment plan but another one involving thyroid hormone withdrawal. Although the differences in outcomes between the plans are not statistically significant, withdrawal seems better than VUMC’s typically chosen, easier-for the patient-to-follow plan. The instructions emailed to me by Lee’s assistant, for my procedure, were somewhat garbled. Of course I sought and obtained clarification, but still it was anxiety-provoking.

 

I started thyroid hormone withdrawal in early December 2010, and was beginning to feel rather lethargic by the time classes ended. Thyroid hormone withdrawal had one (and only one) nice feature; after a couple of weeks I was too wiped out to worry much about anything. I returned to Nashville from Tucson in late December 2010 for the RAI treatment, scheduled so that I would be able to spend the maximal amount of time with my family and still not pose a health hazard to my students (and my colleagues) in January.

 

Three people brought the 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? But I was at VUMC to swallow the pill so I swallowed the pill.

 

After swallowing RAI it is advised to stay a distance from everyone, including cab drivers. I walked home and spent the next several days drinking lots of water and putting everything I touched through the laundry or dishwasher. The aim is to get rid of any radioactivity -- to get it out of your body and out of your house -- as soon as possible.

 

A few days after swallowing the pill, standard procedure is to have a whole body scan to see where the RAI has been soaked up. (It is interesting. The purpose of the low iodine diet is to make any remaining thyroid cells ravenous for iodine. And then they get zapped with RAI.) I lay 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. According to a recent CNN broadcast listening to Frank Sinatra is healing. Sinatra would have been so much better. Most important, though, the RAI was soaked up where it was supposed to be – in the thyroid bed. (One of the next most common places for it to be absorbed is the lungs, which means that the thyroid cancer has invaded the lungs. I thank my Baptist Hospital gynecologist for spotting my enlarged thyroid as soon as he did!)

 

In the spring of 2011 I was scheduled to teach two courses. Anticipating that I may still be recovering from surgery and subsequent treatments, I'd asked the Dean of the College of Arts and Science and the Head of the Economics Department for some teaching relief. There was a person available who could easily have taught my assigned undergraduate course. I offered to pay the person. But this request was denied. Teaching that spring was tough since it takes time after thyroid hormone withdrawal to get thyroid hormone levels back up and I was still recovering from surgery. And having a lot of medical exams -- more on that below.

 

For some weeks after my RAI, my distress started to alleviate, but I had made the mistake of complaining to VUMC about the “alleged delay”. What, you might ask, as I did, would have been the common, expected care of a physician when notified that a patient had an enlarged thyroid? According to email correspondence with Dr. Kenneth Ain[1], when notified of any enlargement or lump, a physician should see the patient “soon” and at the latest, within two weeks. No one has argued that his view is incorrect.

 

In December 2010 I had complained to a VU Vice Chancellor, which brought me in contact with VU Patient Affairs and then with a person from the VU Office of Risk Management. It makes me think that I am still a naïve person from a farm; I may as well have just fallen off a turnip truck. I believe that the purpose of the Office of Risk Management is not to follow the Standards of Conduct of VU but to avoid lawsuits.

 

In person, the Associate Vice Chancellor for Risk Management (the AVC), was very sympathetic. (All VU administrators can be extremely charming in their interactions.) After some discussions, she asked me, in December 2010, what I had in mind for compensation. She said that I must have thought about it. (Of course there is no written record of this; the AVC preferred private conversations.) I was very angry at my former VUMC physician. “Horsewhipping on the steps of his club” was the image that had occupied my mind.[2] But over the winter break, I developed an analysis with a dollar figure, which is what the AVC wanted. There are issues of risk vs. uncertainty and even then, there is the value of life itself. If my thyroid cancer were to lead to my death, how could I be compensated for that; as we all know, “you cannot take it with you”. Any attempt at compensation would have to be “life changing” for, if indeed VUMC’s delay (alleged, as the AVC would add) lead to my early death, that would indeed be life-changing. I came up with a life changing amount and gave a memo on this to the AVC. What did I expect? I do not know really but I did want to express and register my anger. I did want more response than a non-recorded “So sorry!” You can get “So sorry!” from telephone answerers any day of the week for any problems with your computer. I did not expect to be “dissed.”

 

My understanding, however, is that negligence is not enough for liability; there must be consequences to negligence, of the sort that courts view as of monetary value, for there to be any liability. My distress, my perceived need to become an expert on thyroid cancer and the time it took me, the costs of my trips to Boston, all do not count. It also must be “more-likely-than-not” that the delay decreased my life expectancy and that my life has a value. Moreover, in Tennessee, the consequences must be demonstrated within one year of knowledge of the event. My understanding is that for VUMC to have any liability for any consequences of my thyroid cancer is that, by November 2011, it must have been arguable that my thyroid cancer had returned, was life-threatening, and that this was more-likely-than-not due to negligence of my VUMC physician. How such a thing could ever be demonstrated is beyond me. There is simply not enough knowledge or data.

 

Whether there is any remaining thyroid cancer is most likely to become apparent within the six months to a year after a thyroidectomy. As noted, 25% of thyroid cancers reappear within the first two years of a thyroidectomy. My first post-thyroidectomy exam was on August 20th, 2011 at B&W. There was no evidence of cancer. It was wonderful. I floated back to the W Hotel from B&W. The best possible outcome at that point! Would I have pursued a lawsuit against VUMC had the outcome been different? I cannot know, but probably not. It sounds too tedious and I did not have energy for this. Might I have bought a horsewhip? The idea makes me smile, but probably not. Intentions are not the same as actuality. Fantasies are not reality.  What academics actually do is write.

 

The AVC and the Vice Chancellor have expressed, in the privacy of offices, apologies. The only written document (expect for emails scheduling meetings and things of that sort) that I have from the Office of Risk Management, claims there was only an “alleged” delay, tall cell papillary cancer does not have increased risk, and the alleged delay was not important. It may well be, of course, that the expert consulted by the Office of Risk Management was not aware of tall cell cancer. It is estimated that only about 2% of all cancers are thyroid cancers and only 10% of thyroid cancers are designated as tall cell cancer so the expert consulted may not have been knowledgeable about tall cell thyroid cancer. Which may be honest ignorance, but not entirely good.

 

I noted above that in September 2009 I started to have a clutching in my throat. After my surgery I had a sore throat. But the frequent sensation of clutching around my neck, the heaviness in my chest, and extreme fatigue seemed to only get worse. Last year, 2011, was a very bad year. I had MRI’s, electrocardiograms, nuclear stress electrocardiograms, nuclear perfusion tests, CT scans with contrast, and blood tests for everything. But nothing. No explanations of my symptoms. Until a physician suggested that I may be depressed/anxious. This had not occurred to me; it conflicts with my image; I am too tough to get depressed and certainly I would never show it! Nevertheless, he prescribed an anti-anxiety/depression drug and that has really helped. Moreover, he reduced my thyroid hormone perscription, I think that, because of my symptoms and other events going on, I felt anxious. Which lead to more severe symptoms. And more anxiety. And more symptoms.   (See my page "What it is like".)

 

No one can understand what it was like until they have been there. It does seem that after knowledge that one has/had cancer, depression is not uncommon. What I have read about depression concerned breast cancer, which is more common than thyroid cancer. My interactions with VUMC and then the Office of Risk Management were deeply depressing, anxiety-provoking, and worsened the situation.

 

Please do not be offer sympathy. I don’t know how to handle that. Besides, everything is getting better. My depression/anxiety is about gone. By this fall, all will be back to normal. Kindness is always welcome and appreciated. I hope that I can be kind too.

 

As I said, it has been really hard for me to talk about my thyroid cancer; sometimes I had stood, speechless, in front of another person, unable to say that I had thyroid cancer, unable to say anything. When I took medical leave, as few people as seemed possible were informed. The Head of the VU Economics Department and the Dean of the College of Arts and Science knew I had cancer. My undergraduate students and two of my former Ph.D. students knew that I was taking a personal leave but did not know why. The PhD students had strict orders that they were not to mention my absence to anyone (and I believe that they did not). I wore turtle neck sweaters for three months and then “distracting” jewelry. (Indeed, Dr. Moore is a great surgeon. The scar is hardly noticeable.) Now, when I am going through this catharsis you might not want to say anything to me about my thyroid cancer because I will probably talk your ear off.

 

Finally, all the above is according to my information and belief and to the best of my knowledge is true and accurate. I have avoided recounting non-recorded events and statements.

 

Let me conclude, however, with some less negative notes. VUMC has the nicest waiting rooms in the area. MyHealthatVanderbilt, a way of communication with one’s physician, is very convenient – and keeps records. Many people find their experiences at VUMC positive – their physicians inspire confidence (which is, unfortunately, not the same as competence) and the staff (usually) appears sympathetic. Some people, like Martha Ingram, a benefactress of VU, appear very happy with VUMC. VU excels at advertising! But there are, I'm sure, excellent physicians at VUMC.  Sergio Fazio, a specialist in lipids, a researcher who sees patients only one day a week, seems genuinely interested in his specialty and I have confidence in his anwer to my questions. VU is proud of its researchers in medicine; they may be the strength of VUMC.

 

Be well. Guard your health and be informed.

 

Best wishes

Myrna

 

 


[1] A physician who specializes 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. Also, he is a well known expert on thyroid cancer, head of a Thyroid center at the University of Kentucky, who maintains an excellent website, and answered my emails. Another excellent, more technical and specialized book is Thyroid Cancer: A Patient’s Guide
By D. Van Nostrand, G. Bloom, L. Wartofsky

[2] According to the writer, P.G. Wodehouse, in prior times, this was the ultimate punishment for a male member of the British upper classes.

 

Added December 2012:  Opinons about whether tall cell thyroid cancer can become anaplastic cancer are varied; some endocrinologists say "No".  On his website  http://www.thyroidcancerdoctor.com/help.html Kenneth Ain writes:

 

"There is sufficient evidence to say that anaplastic cancer is a terminal dedifferentiation of a pre-existing papillary or follicular thyroid cancer. In my experience, the most likely type of cancer to undergo an anaplastic transformation is tall cell variant papillary thyroid cancer".