Just Three Little Words...I Don't Know

I’ve mentioned my neurosurgeon before, but hadn’t given him a name for my blog…he’s not to be confused with Dr. Do Nothing who was the neuro-opthamologist I saw for fourteen years that didn’t notice my tumor was getting bigger every year. He’s also not to be mistaken for my first neurosurgeon, Dr. OverMyHead; he did surgery, but didn’t really get to the tumor, so instead he manufactured a diagnosis. I didn’t know this though until I had my second surgery last Fall with…I’ll call him Dr. IAmKing.

Dr. IAmKing, like most neurosurgeons I’ve met, came with an attitude. He’s the Chairman of Neurosurgery at a highly prestigious hospital in New York. Neurosurgeons carry themselves with a great deal of ego and stature. They wear an air of “I Know Everything”. When I first met Dr. IAmKing, he looked at my MRI’s from years past and proclaimed my tumor to be a certain kind of unusual aqueous tumor. “This is definitely liquid” he said, “We can put a drain in there, and drain it out”. I know now in retrospect, that my tumor was not liquid; it was hard like a rock. Oops! Did he admit to not getting this right? Nope. Following my consult with Dr. IAmKing, I consulted with two other surgeons who thought the tumor was rock hard, definitely not liquid. They were right, he was wrong. These two other doctors showed as much confidence and bravado about their diagnosis as Dr. IAmKing did about his. How to choose, how to choose? The difference was that Dr. IAmKing had a much less invasive surgery…I decided to go with
Dr. IAmKing.

After surgery, Dr. IAmKing, said that the tumor was rock hard, and that he could not get it all, I would definitely need more surgeries. Did he admit he was wrong? Nope.
Six weeks later when I came to see him for follow-up, he said that he could see from the MRI I had just had, that the tumor had grown quite a bit and that we needed to act quickly. He also went on to say that I would need to have a test to see if one of my carotid arteries (we have two-the one in our neck branches off when it gets into our brain) could be tied off. He hoped that the results of this test would be positive (meaning I could do with just one carotid artery), this would give him better access to the tumor and more room to move around in…he would need as much room to move around in as possible. This procedure is a big deal, once the artery is tied off, you’re watched as an out patient for six weeks to see if you have a stroke or not, it’s not something that should be rushed in to, and yet I was feeling rushed. When I went for second opinions, not a single other doctor believed there to be any demonstrative change in the size of my tumor from my pre-surgery MRI to my post-surgery MRI, nor recommended the artery be tied off. So what was Dr. IAmKing seeing? Dare a say the house payment he stood to make by performing another surgery so quickly? Yikes! Let’s face it doctoring is a business too. I would question him about this later, and he stood his ground, saying that there was definitely growth. His hospital’s own radiologist did not see any growth. Would he admit that he was wrong? Nope.

I needed time to think and research other possibilities.

And so I did. I found Proton Therapy, I asked Dr. IAmKing if he was familiar with this type of radiation. He said that he was, but that I wouldn’t be a candidate; that it was for small, round tumors, which mine was not. I consulted with Proton Therapy Center at Mass General. They not only told me I was a candidate, but that Proton Therapy is particularly effective for large, irregular, hard to reach tumors. I let Dr. IAmKing know that I was pursuing this therapy. He said, “I do not disagree, and I support your decision, and please keep me posted on how you’re doing”. Did he say he wasn’t aware that Proton Therapy was for irregular, large tumors? Nope.

The rest of this story has already been told in earlier blogs. I went, I radiated, I’m still recovering.

I have to say that despite his seemingly deep well of misinformation, I liked him. He was always available to answer my questions (not always easy to find in a doctor of such stature). He sent me an email while I was in Boston to find out how I was doing (again, not the usual procedure from a doctor of such stature). Lastly, while his impression of my tumor before surgery was wrong, his surgery left me walking and talking pretty much the same as when I went in…this is not to be underestimated when you’re in and around what neurosurgeons call “lion’s country”, or “high-priced real estate”. I excused the fact that he did not read MRI’s very well, by saying “well, he’s a surgeon, not a radiologist”. I dismissed the fact that he wasn’t as aware of Proton Therapy as I would have liked him to be (considering he is a doctor of such stature), by saying well “you can’t know everything”.

Yesterday I sent an email to Dr. IAmKing. My case is unusual, its had a lot of twists and turns, I felt he would find my post-play findings worthwhile, and remember he had sent me a previous email inquiring as to my health. It was an outline of what I had learned after he had performed my surgery on October 30th of last year. I listed that his surgery confirmed the fact that the tumor had been misdiagnosed in 1990, that he had suggested other surgeries, that I asked him about Proton Therapy and that he felt I was not a candidate. That I had consulted with Mass General and Sloan Kettering and that they felt more surgery would be a detriment, that radiation, particularly Proton Therapy would be my best option. Lastly, I wrote that I hope that by my writing this e-mail, that other chondrosarcoma patients would benefit; Proton Therapy is a very viable treatment for this kind of tumor. He responded. Did Dr. IAmKing say he was wrong? Did he say I didn’t know? Nope. He said this:

“Thank you for your thoughtful notes and for keeping me informed of your progress. Of course I was aware of the reports of the MGH group about proton beam therapy, as well as reports of other types of image-guided XRT for chondrosarcoma. My recommendations for you naturally incorporated my interpretations of how well these therapies work, their complication rates, the alternative treatments, and your medical history.”

I am thinking if he knew that these therapies were available, he owed it to me the patient to offer them up as possibilities, and to let me make the decision as to whether they would be right for me or not. If he didn’t mention them because he made a decision in his own head on my behalf, this not telling me everything, is sort of like lying. More importantly he has seemingly remade our history by saying that he was aware of these therapies. If he were aware, he would not have said that Proton Therapy was only for small round tumors. He just didn’t know, but he couldn’t say it. His ego wouldn’t let him admit it. In the end I find his response disappointing, but sadly predictable. I thought maybe he was different. “What was I thinking?”