Messages from Kennichi Kakudo, MD, PhD to a person to be an expert of the cytopathology

Dear Dr Kakudo I wanted to write to you about how I feel on your second opinion diagnosis. For people who will read this story for the first time I would like to simply explain my situation. I’m a male at my 37. I had lobectomy operation due to a thyroid nodule of 2.7cm in size at my left thyroid lobe. Pathology report after surgery said “Follicular Variant of Papillary Carcinoma” and I was advised to go for completion surgery and radioactive iodine (RI) treatment. After reading many articles including yours about borderline lesions I started to question if surgery was the best option for my health or not. Then I started to follow “thyroid cancer survivors association group” at “inspire.com”. Following this site gave me a better understanding of how people feel without thyroid gland, short and long term side effects. And based on an advice from a friend from that group I decided to contact you and you kindly accepted to give me your second opinion. Your diagnosis result says “findings are incomplete and do not fulfill histopathologic criteria for either follicular carcinoma or papillary carcinoma”. And this type of tumor are “practically benign after simple excision”. This difference in opinion obviously makes a big change for management of the disease. No need for completion surgery and no need for RI treatment. As a patient going through all this on one hand I feel lucky because it’s not a genuine cancer case where none of above mentioned discussion could be possible. I also feel lucky because I had a chance to read and better understand risks and downsides of surgery and RI treatment before deciding anything further. On the other hand not going down that road may have other risks in specific cases and today we are not 100% sure about long term outcome for each individual. However statistically there is a strong evidence that we are almost 100% sure (your study shows 0,03% missing malignancy judging) there will be no recurrence or distant metastasis. Reflecting on my case and many others it’s clear to me that there is a difference in opinion between pathologists and this has a direct impact on management of the disease. Important point to me is to give enough information to patients so that they can make their own decisions. Not just say this is your problem and this is the one and only solution. Take it or not! I could have felt much better if risks of surgery and RI and not doing that was explained to me objectively. At the end it’s my life and I have to make a decision. Why should I have to find out difficulties in diagnosis and even classification of borderline lesions by myself? How many people will (be able to) do what I did? And how many people will just do what is told? Therefore how many people will possibly be treated for nothing? And their quality of life and feeling about their health is impacted adversely for the rest of their lives. I hope answers to above questions will be discussed more and more in the coming years. And until we find a clear method to identify what is definitely malignant and what is not I hope doctors around the world will give more information to their patients and explain real difficulty to make this identification. And let people decide what is best for themselves. Finally I want to say thank you for your second opinion diagnosis which made a big change in my life. And a big thank you for your life time studies and sharing what you believe is right to make a change in people’s lives.

Dear Dr. Kakudo, I wanted to write and thank you for publishing your comprehensive review of the literature on encapsulated thyroid tumors, and your related papers.  I am referring to Classification of thyroid follicular cell tumors: with special reference to borderline lesions (2011), and Encapsulated papillary thyroid carcinoma, follicular variant: a misnomer, (2012), which make many salient points and provide an excellent review of the literature for both professionals and interested patients. I am a patient who was diagnosed with an encapsulated, mutation-negative, non-invasive thyroid cancer in 2011 in the United States.  The pathology report read that it was an encapsulated classic PTC.  I did wonder a bit at the time whether there could be some kind of question or error about the diagnosis because the tumor did not appear to have been behaving in a way that could be construed as aggressive.  There was no spread to the nodes or outside the thyroid, molecular tests revealed no known genetic mutations and I was also tg undetectable, both basal and stimulated.  I was puzzled, and I did see while looking online that there was some kind of controversy about encapsulated FVPTC, but I was told that I didn’t have FVPTC and also that there are many cases of mutation negative thyroid cancer.  I was also told that I was “low risk” but on the advice of my endocrinologist I submitted to a treatment of radioiodine (50 mCi). Like many or even most patients, when I was diagnosed I really had very little idea of the definition of thyroid cancer according to tumor classification and how that plays into the reasoning of a given pathologist. I had no way of contextualizing “thyroid cancer” in a more meaningful way.  It seems that the hospital that I used treats classic encapsulated PTC the same as garden variety non-encapsulated PTC.  I had no idea that encapsulated PTC could be regarded as being under the same umbrella as encapsulated FVPTC until I did a Google search about it and saw your papers, which elucidate very effectively the problems of inter-observer variation among pathologists and also the questionable ascendency of PTC-N as a major diagnostic criterion.  I would even go beyond that and say that any patient with this type of thyroid tumor who has been diagnosed with cancer and who can read and understand your reports will probably come away feeling rather disturbed, or at the very least disconcerted by the implications.  A cancer diagnosis entails a considerable psychological burden even when the prognosis is good. It really surprised me to learn of the observer-dependent nature of the line between benign and malignant in certain situations.  But I guess what unnerved me the most is the realization that pathologists and other clinicians at times actually do not know with certainty the true nature of some lesions due to the limitations of current knowledge.  Yet these cases will nevertheless often be translated to the patient as definitively being cancer.  How is a patient to react when confronted with this actuality, other than by experiencing a lessening of confidence in the way in which thyroid pathology is being conducted in many hospitals and also with nagging uncertainty about whether their case has been over-treated?  I feel that I was not empowered as a patient and that more transparency is needed in medical practices as to the gaps in understanding in the current classification system, and the resultant gray zones in diagnosis which directly impact the lives of patients like me. It seems to be the case that there is a certain segment of patients who are the unwitting “poster children” of this gray zone in thyroid pathology. My case proceeded on the basis of PTC-N (FNA and pathology) alone because the molecular results were negative.  These uncertainties which have been unmasked by your reports suggest to me that a borderline category based upon degree of invasiveness is a very sensible solution until more hard data becomes available.  At least I can attest to what a difference it would have made to me personally.  Had I known of your research before I had my surgery and treatment, I may have insisted on a lobectomy and almost certainly would not have agreed to receive RAI ablation. Since I saw your papers I conferred with a second pathologist from New England about them, and he confirmed that the diagnosis of these “very low grade lesions” is subjective and sometimes even amounts to a “suggestion” from the pathologist.   I only wish that my original pathologist could have somehow conveyed this information to me. Maybe many pathologists and clinicians in the USA and elsewhere feel that their hands are tied due to legal concerns, but I think that for patients a borderline category makes very good sense and most likely will prevent overtreatment and psychological trauma.  It would have made such a difference for me in that it would have allowed for a lesser degree of treatment while preserving appropriate follow-up. Thank you again, Dr. Kakudo.    

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