My first experience with administrative red tape, today, in this whole process. Certainly it will not be my last. I received a call from the admissions people at Sloan-Kettering, saying they have received copies of the test results faxed by Dr. Lerner’s office, but that these are not enough. Sloan-Kettering, it seems, will not even put me on their calendar until I can present the results of an incisional biopsy. (My previous biopsy was a fine-needle aspiration, which yields only a small quantity of tissue for pathological analysis.) An incisional biopsy is more of a surgical procedure, in which a small piece of the tumor is cut out, rather than having some liquid or semi-liquid matter sucked out through a needle.
I am sitting in a waiting area at Ocean Medical Center waiting for my mugascan. Several messages and missed connections later, I have Dr. Lerner on my cell phone. He tells me that, in his opinion, an abdominal surgical procedure is probably unnecessary, because the fine-needle biopsy has already yielded a firm diagnosis. He suggests that a core-needle biopsy, while not strictly speaking an incisional procedure, could perhaps yield enough tissue. (In a core-needle biopsy, tiny instruments are extended down the middle of a hollow needle, so small pieces of tissue may be snipped out and removed.) This could be done in the same interventional radiology suite at Ocean Medical Center where I had my fine-needle biopsy, with the same quick recovery to be expected. Of course, had we known I would be contacting Sloan-Kettering and what their requirements are, Dr. Lerner could have ordered that sort of biopsy in the first place, saving me the need to go through a second surgical procedure. But we didn’t know that; the subject of a second opinion didn’t even come up until after the diagnosis.
Dr. Lerner explains that Sloan-Kettering, being a research-oriented institution, probably has routine procedures that require a larger number of pathology slides. I wonder if there is perhaps a misunderstanding, on the part of the Sloan-Kettering people, about the location of my tumor. Many NHL patients, like Cindy, have swollen lymph nodes in easily-accessible places, just under the skin. These lumps are, for them, the first noticeable signs of the disease. My diagnosis is a bit more unusual. My tumor was detected accidentally, through an ultrasound. It’s not so easily accessible, being buried deep in my abdomen.
Back on the phone to Sloan-Kettering. The woman on the other end of the line explains that this is what "the nurse" says is needed. She has talked to him again and confirmed that, yes, this is standard policy. She offers to talk to a doctor on my behalf, but few are around the office on this particular Friday, which is the day of a major medical conference. She offers to phone me back on Monday.
I wonder at a system that gives a nurse the power to overrule an M.D. Yet maybe that’s not so surprising, in the specialized world of cancer hospitals. I’ve heard about certain oncology nurses having very deep knowledge, more than many doctors, about the narrow slice of medical knowledge that is their specialty. I silently wish Dr. Lerner could somehow speak directly with a Sloan-Kettering physician about this, and spare me the role of being the communications conduit. Yet, in fairness to him, it’s my second opinion, not his. I’ve got to do the legwork myself.
I suppose this is what the literature means when it says patients must be their own advocates. I'm learning fast about how this game is played. But it's no game. It's my life.
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