Surgery Trip Report (Part II) – Picking a Surgeon

[colgin]

I previously detailed in Part I how I was diagnosed with papillary thyroid cancer. A brief description of that type of cancer can be found here .

The pathologist who had made the diagnosis suggested that my original ENT doctor could probably perform the surgery and he also told us that the head of his own hospital’s (NY Eye and Ear Infirmary) neck department would be a good choice. Notwithstanding his recommendation, my wife and I suspected that the ENT doctor would not be the right person but we thought we would go meet with him to discuss it since he was already familiar with my case. We got on the subway and schlepped back all the way uptown. Out ENT doctor told us that he hasn’t performed a thyroidectomy in ten years and that he would not be the right person. For that we were charged with an office visit. He did give us some referrals, none of which turned out to be very good ones.

We then hauled it back downtown, ate some lunch and started working the phones. I had been prepared at that point for the diagnosis but facing the weekend, I knew that I would feel better feeling as if things were moving forward towards getting treatment. So we started placing calls to the offices of head and neck surgeons we had previously researched and placed calls or sent e-mails to friends and families who might have connections at various hospitals. We had talked to a few people about the possibility of this diagnosis so had received a few recommendations but still felt that we had just scratched the surface.

The thing about living in New York City is that if you have to be ill or need surgery it is one of the best places, if not the best, in the world to be. In many other places undoubtedly, there might be only a few choices of places to go to have a particular procedure. But in NY there are a huge number of major hospitals each of which has an entire department capable of handling a given procedure or treatment. The down side of this is sifting through the information and making a choice. Given what is at stake you really want to make the best choice without driving yourself crazy. The other thing though about NYC is that there are so many people living here and even more who come here to receive medical treatment. Thus, many of the best doctors are difficult to impossible to get to see. It may be fine for me and my wife to say that we want to get the “best” surgeon (whatever “best” means exactly) and are willing to pay for it (or have our insurer do so), but those best surgeons have no shortage of patients. They may not take you. It is often quite important here in NY when trying to see the more prestigious doctors in a particular field to have some sort of “in”. Of course, nobody (in particular the doctors themselves) formally acknowledges this since it seems (and is) grossly unfair, but it is ABSOLUTELY the truth. So, while I was ready to start placing calls to a few doctors offices with numbers I had pulled off the internet, my wife made me wait in several cases until we had some sort of reference, i.e., being able to tell the secretary for a doctor “Dr. So and So from X Hospital is a family friend and he said Dr. Y is the best and we must see him, etc.” In one case, we got an appointment for three weeks later, but as soon as they checked the reference our appointment was suddenly moved up two weeks. Mind you, I think this is grossly unfair; but in my situation I am going to work the system to try to get the best care.

On that day, we were able to get an appointment for the following Monday with the neck surgeon at the hospital where the diagnosis was made but the other three or so appointments were not until the following week. This cancer is very slow moving and the surgery involved is not considered to be emergency surgery at all. So, even though I felt “OMG, I have cancer, you need to see me RIGHT NOW!”, none of the doctors (correctly I would add) felt that way.

By the end of the day, we had a few appointments and had put out feelers to friends and families with connections at every major NY hospital. Having done my work, I intended to have a fun weekend and not dwell on the diagnosis.

On Monday morning, in preparation for my surgeon visit that afternoon, I began reading in earnest a book called “The Complete Thyroid Book”, which covers all thyroid problems, not just cancer. What I learned is that (as I suspected) this type of cancer is not 100% curable although the cure rates are very high. Additionally, there were certain risks associated with the surgery. While the risks were relatively small, they ranged from the fairly benign to very scary. Numbness in the neck area seemed benign. More frightening was loss of motion range in the arm on the side of my neck that was being operated on, vocal cord damage, and, in rare cases, the need for a tracheostomy (insertion of a breathing tube in the neck). The last thing scared the [censored] out of me. In this surgery, a vocal cord could become damaged which could lead to either temporary or permanent hoarseness. If both cords were damaged, it could cause your windpipe to close off, thus requiring the breathing tube. When I read that, everything else fell away in my mind. Who cares about how loud I speak; just don’t make me breathe through a tube. While I knew this was very rare I could not get it out of my mind.

That afternoon we met with the first surgeon. He looked like a doctor straight out of the movies, mid-50’s, white, graying hair, and a detached above-it-all attitude. He did not make us feel that great. First, he told me that my prognosis should be “good”. Well, sure that was better than bad, but it didn’t sound like anywhere near “100% curable” that I had first been told. Now, I don’t necessarily need coddling and I don’t need to be misled, but in the situation I may as well hear the optimistic case since I am going to go through with the treatment anyway and may as well be as positive as possible. I have learned since that my prognosis is, in fact, very good to excellent and wonder why this surgeon didn’t express it in those terms. Second, we had come to, in a sense, interview the surgeon as we had an entire list. We could tell immediately that he did not like this and was not interested in answering too many questions about his experience. That was not because he was not experienced, he was. But for that reason he thought he did not need to answer our questions. But how do we know how experienced and qualified he is unless we ask first. As many of you know, this attitude is (unfortunately) very typical for many doctors. Finally, when he wrote up the procedure I would be having, he wrote: “total thyroidectomy” (which I knew); “right neck dissection” (which we knew); and “possible tracheostomy” (Nooo!). When I saw that all my fears about the surgery crystallized. We asked him if this was likely and he said no but that it was possible and he had to write it down. My wife told me that it was probably just hospital procedure to list any possible procedure but I was left with the impression that that was now a very real possibility.

For the rest of the week I made other appointments and basically ate no food due to stress. I lost 6 pounds in about a week.

One of my best friend’s brother’s sister-in-law recommended a surgeon at NY Presbyterian (Cornell College). At that point my wife thought we had enough appointments (five) and it was not worth calling. However, I persisted since the person making the recommendation loved her surgeon so much. I told her I would call his office and if he could take us relatively soon we should go. He was able to take us the upcoming Monday, prior to our next set of appointments.

Dr. Kuhel was the opposite of the prior doctor. He took a lot of time to explain the nature of the cancer I had, the surgery involved and why the prognosis for me was so excellent. He said: “Given your age, etc., we fully expect you to recover.” To me this was a lot better than “good” as with the prior surgeon. He then explained that while he expected me to recover, the process was arduous. The surgery itself was long, approximately 8 hours. I had initially read online and elsewhere that the surgery could be about 3 hours. The first surgeon said he expected it would be about 4-5 hours due to the neck dissection. Dr. Kuhel explained his philosophy of surgery. While it is relatively easy enough to take out the bad stuff, the key to the surgery is figuring out in advance what you are trying to maintain and not damage (i.e., nerves) and he spends a lot of time mapping everything out before cutting so as to prevent any injury. So he takes longer than many other surgeons would. This approach sounded good to me, especially in light of my fears over the surgery. We then went over the risks of the surgery. He never mentioned a breathing tube. When I asked about it, he seemed a little dumbstruck. Yes, it was possible, but he was not familiar with any cases where it was needed when a competent surgeon performed the surgery. I should absolutely not worry about that. It is not going to happen. Rather than assuming we were going with him and try to calendar a date, he said that we should feel free to call with follow-up questions and if I decided to use him his assistant would work out the dates. I asked if I could have the surgery in August and he said he was sure he could fit it in. While I of course wanted to have it done as quickly as possible, he said that if I did it any time within the next three months there should be no difference in my prognosis.

My wife went into the waiting room and thought we had found the right person for the job. She thought that maybe we should visit one more surgeon, a specialist at Memorial Sloan-Kettering, which specializes in cancer, but I thought otherwise. I now felt about as good about the process and surgery as I was likely to feel. Any further visits had the potential to make me more anxious again. And I thought this surgeon was excellent and would do as good a job as anyone. Plus, each visit was about $500 (which would be partially reimbursed by insurance) so better save the money for the inevitable unreimbursed expenses to come than on consultations with surgeons we are unlikely to use.

So, I scheduled the surgery for the end of August, feeling as good as I was ever likely to feel about having this cancer.

Coming in Part III: Surgery and Recovery

[Skipbidder]

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Out ENT doctor told us that he hasn’t performed a thyroidectomy in ten years and that he would not be the right person. For that we were charged with an office visit.

[/ QUOTE ]

Why wouldn't you be charged for an office visit? Didn't you HAVE an office visit? Would you rather have had the ENT lie to you about his qualifications or comfort level with the procedure? I am somewhat surprised that he didn't have any good recommendations for you, however.

I didn't follow the previous thread. It looks like you've already been told that papillary thyroid cancer is a relatively indolent form of cancer. It isn't the 100% that you were apparently quoted at some point in time (either hyperbole or bad practice). You will see quoted 10 year survival rates pushing 90% overall (and better the younger you are and the less advanced the disease).

I wish you well.

[MaxPower]

It is amazing how different experts can tell you very different things. It is confusing.

You are an inspiration to us all. For now on, whenever somebody make a whiny post in OOT about a litle pain from their wisdom teeth extraction or some minor medical issue, you can just sit back and laugh at their wimpiness.