On Thursday morning, halfway through my volunteering shift, on a whim, I crossed the street outside the hospital and walked into my oncologist’s office, to pick a copy of my onco type dx test. I folded it into four, stuck it into my pocket and retraced my steps to the hospital. Sitting on a bench in the glass and steel lobby, I unfolded the paper, smoothed it and stared at it for a long time.
Less than 48 hours before, the oncologist had called me with the results. When I saw her name appear on the phone screen, I sat down on the couch, the light outside the windows giving way to darkness in the late afternoon.
The onco type dx is a test that, for certain tumours, can predict, with 95% accuracy, a possible recurrence within five years, and whether chemotherapy can be an effective preventive measure.
“Your overall score is 19” she said “which translates to a 26 to 28% recidivism chance. You know what that means. I recommend chemo.”
I was too shocked to ask any immediate questions – I was home alone and I told her I had to sleep on it, talk it over with my family and would get back to her within a day. Considering the size, grade and stage of my cancer, I had expected a much lower figure. All of a sudden, I felt I was sitting at a blackjack table in Vegas, calculating the odds, trying to game the house. At the same time, for the first time, I hit the cancer wall. I didn’t want to know anything anymore, no more facts or figures – I wanted it all to go away and to stop forcing me into decisions. I began blabbering that I didn’t care anymore what tests said, that it was time I resumed my life and everyone had to leave me alone.
Nonetheless, I prepared a list of questions for the oncologist: every fiber of my body was telling me there was no way I would consider chemo but how should I balance my instincts with medical knowledge? I barely slept that night, with figures swimming in my subconscious, taking long and relentless laps.
The worst thing of this ordeal, worse than fear, shock and confusion, has been the in-taking of new information, the sorting, the learning, and applying all of that to the decisions I was asked to make. It is mentally exhausting, and I understand those patients who abdicate all the decision-making to their physicians. Unfortunately, I am unable to do that.
My oncologist happened to be sick the following day and I wasn’t able to speak to her. Which is partly why, on a whim, I decided I wanted to see the test. On two mere pieces of paper, there were the figures and statistics she mentioned. But, right next to them, was something else, in rather big block letters: the test had been conducted on an estrogen positive tumor, with the assumption of 4 or more positive lymph nodes. Say what? I re-read the sentence three or four times, looking for a different outcome. I checked the name and date of birth matched my own. They did. I could have run down to my surgeon’s office, or to my radiation oncologist and asked for help in reading it. I was, after all, surrounded by doctors, but I didn’t. I just resumed my duties, the paper folded in my pocket. Maybe I didn’t want to burst the hope bubble: the test was wrong. None of my lymph nodes had tested positive.
Once home, I showed it to my husband. His first words “There is a mistake.”
I still waited two hours before calling the oncologist, whose first reaction was there was nothing wrong with the test.
“Please look at it.”
Fingers fumbling on the keyboard. Silence.
“Well, yes.” She didn’t quite know what to say.
“How would negative nodes affect the results?” I prodded.
It turns out they would slash my percentage in half. But she is not conceding her recommendation would differ, she offers no apology. The tone of her voice could have made you think she was discussing the fucking weather.
I am not sure how I controlled the rage, how I didn’t throw the implications in her face. I asked how this could have happened. Did someone check the wrong box? Was it the lab? Who physically filled out the paperwork? She does not reply to any of my questions, other than saying that she is going to have her staff call the lab. And that was that.
I sat for a long moment, phone in hand. What if I had agreed to unnecessary treatment, no questions asked? What if I had declined the treatment and had to adjust to life with that percentage? What if my curiosity had taken a hike that day?
To make matters worse, I subsequently found out that, had my score been a 19, there are no clear studies I would have benefitted from chemo. It was a gray area and doctors are asked to rely on their experience, other tumor markers and a patient’s preference. None of this was shared with me.
A medical degree does not confer infallibility. Mistakes happen. Often. That I had to be the one to catch this particular one is bad enough. Still, I tend to be forgiving. But that I was offered no empathy, no respect for my trauma, that, I cannot let go of. I don’t expect doctors to put themselves into patients’s shoes, or they would go mad after a year of practice. But I do expect them to be present and respectful of my disease: it might be a boring, stage 1, routine breast cancer but it is mine. With the shock, the trauma, the emotional upheaval and the fears that come with it.
Needless to say, I am looking for a new oncologist.
Top image: Abbey Ste Foy, Conques – via Eddie C.