A fellow blogger at The Day I Found Out got me thinking recently. Their site (very moving, btw…check it out!) focuses on first person videos of survivors and loved ones telling the stories of their diagnoses; stories that are sad, sweet, and uplifting all at once. My browsing there led me to think about my own D-Day.

The truth is, the actual day of my diagnosis is part of a bigger picture, which includes the days I didn’t find out. The road to diagnosis was a long one, much longer that it needed to be. It began with my first “baseline” mammogram ordered by my internist in November 2001. I don’t know what made her order the test, and I’m not sure she does either. Instinct? Prophecy? It’s not in my nature to wonder why, but rather to be grateful that she did!

A few days after my baseline I got a call from the radiologist saying I needed follow-up studies. Since I was told there was no particular rush, I scheduled an appointment for January, and took off on a family cruise…a trip that would later be dubbed B.C. (before cancer).

When January rolled around I headed back to the doctor for spot compressions (and you thought mammograms hurt?). A week after that, and with mounting concern, I returned for an ultrasound. As I lay there watching the monitor I saw the tumor come into view. My heart sunk, my breath caught in my throat, my body went numb and I knew. The problem was, there was no way, at that moment, to officially “know.”

It took a very long week to get into a surgeon for a biopsy. Biopsies near the end of the week are bad ideas. It ends up that despite our urgencies, pathologists have families and friends that like them at home over the weekend, and since there was no “there” there, my husband and I shared what we were going though with almost no one, leaving us anxious and uptight through the weekend. A few bottles of “special occasion” champagne were opened as a distraction, and some very dear friends came over to help us wait it out, but tensions ran high. Monday came and went, and still nothing. And then…

Tuesday, February 5, 2002 was the day. Just about 1:00 PM I got the call, and while sitting at my desk listening to the surgeon talk the letters appeared on the white page in front of me: L O B U L A R   C A R C I N O M A. There was more, including the words “in situ.” Magic words to a cancer patient….it hasn’t spread! We hung up. I looked at my notes. I called back. “Wait,” I exclaimed, “you said in situ. This hasn’t spread!!” I was relieved, elated. And then he explained that it was both. “I want to be very clear. You have invasive cancer. You need to come in and schedule surgery.”

I will never forget that next appointment, and may well write about it another time. But for now, here is what most interested me about this exchange. Two or three weeks later I went for my first chemo treatment. The way my oncology office was set up, I would go upstairs for blood work and a visit with my doctor, then take my file downstairs to the treatment center. On the elevator I began to flip through the file (quite slim at the time, but my how it would grow!). In the file I found paperwork indicating that my surgeon got a preliminary report the day after my biopsy. The pathologist KNEW it was cancer and didn’t tell me. I was stunned. He knew, and he knew I was waiting…and he said nothing. So, here’s what I’m wondering, even today…

Remember the episode of Seinfeld where Elaine reads her medical chart? Was I wrong to flip through its pages?

Whose information is it?

Is it OK/right/advisable for a doctor to withhold partial information until a full report is available?

3 Comments (+add yours?)

  1. Jacques
    Jun 03, 2011 @ 00:28:15

    Doctors base their methods of work on “proof”: they are in the limelight, and, while they may have an inkling of a medical problem, they want to get a clear picture before they announce the news.
    Interesting question that probably has no answer.


    • regrounding
      Jun 03, 2011 @ 00:43:41

      Doctors, and more to the point, researchers, inch forward. The “system” reinforces that effort…. Institutions, both research scientists and their related universities, are rewarded for “successful” research endeavors….and if that means improving the marginal efficacy of an already approved drug over the experimentation of an altogether new one, the system is set up to support the former. So how do we focus our efforts on the “high risk, high reward” research? I’d argue that the NBCC agenda is working on just that….


  2. motherspreciousgems
    Jan 13, 2012 @ 05:29:32

    Maybe advisable, but never okay. It is your medical record and your body and you have every right to request a copy of it. When I was diagnosed I discovered that my mammogram report from the year prior was never read and the finding TWO years prior, was never put in the report at all! I have since become a huge advocate for women to obtain their medical reports from patholigsts and radiologists. I am proof positive that some of those NEVER get read and the mistake cost me a breast. (see http://korynsstory.blogspot.com/p/my-message-to-women.html in my blog) On a side note, (and a funny one at that), last year I had an endometrial biopsy and ran to the clinic that week to obtain the report for myself. I was not waiting around again for ANY doctor. The report had been written and said S.A.A. I furiously looked up what THAT could mean. I found “Serum Amyloid Antibody”, which is something to do with inflamation, disease, the liver, and all in all bad stuff! I freaked out, frantically called my doctor, left messages, and basically was spinning in despair when she called me back to tell me it meant “Same As Above”, confirming the benign finding of the pathologist. There. I learned that day not to freak out the minute you read a report you don’t understand. But I clearly understand the word “mass”, and “carcinoma” and red flags like those should be caught by the patients themselves because two eyes are better than one crazy busy doctor who might forget to read YOUR report!


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